ati case study palliative and hospice care

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• Glob Qual Nurs Res
• v.9; Jan-Dec 2022

A Comparative Case Study of Hospice and Hospital End-of-Life Care for Aging Adults With Developmental Disabilities

Jacqueline m. mcginley.

1 Binghamton University, NY, USA

Christina N. Marsack-Topolewski

2 Eastern Michigan University, Ypsilanti, USA

Greater attention is being paid to issues surrounding end-of-life care for aging adults with developmental disabilities. The purpose of this qualitative study was to explore the end-of-life experiences of two aging adults with developmental disabilities and life-limiting serious illnesses who received care in settings in the United States. Using a comparative case study design, data from three sources (records, staff, surrogates) were collected sequentially and triangulated via within and cross-case analyses. Although the setting and design limit the generalizability of these findings, the feasibility of delivering high quality care to adults with developmental disabilities as they age and experience terminal illnesses is supported. Insights are presented regarding how nurses can address barriers by adapting policies and practices to accommodate the distinct needs that arise as people with developmental disabilities age, become seriously ill, and reach life’s end.

The leading causes of death for individuals with developmental disabilities are now similar to those found in the general population, including: respiratory disease, heart and circulatory disorders, and cancer ( Landes et al., 2019 ; Tuffrey-Wijne et al., 2016 ). The life expectancy of individuals with developmental disabilities has increased in recent years, with the average lifespan now ranging from early 50s to 60s with variability often attributable to the severity of the developmental disability and other co-occurring conditions ( Lauer & McCallion, 2015 ). Older adults with developmental disabilities, however, seem to remain at greater risk for premature and avoidable death when compared to the general population ( Landes et al., 2021 ).

This may, at least in part, be attributable to some distinct morbidity and mortality patterns that have been observed among people with developmental disabilities. A study conducted in Sweden identified a higher mortality risk among older adults with developmental disabilities, which was attributed namely to “respiratory, nervous, and circulatory diseases” ( Ng et al., 2017 , p. 1). There is also evidence to suggest that Alzheimer’s disease and dementia disproportionately affects a subset of the population of people with developmental disabilities ( Takenoshita et al., 2020 ). Approximately 8% of all adults with developmental disabilities have been diagnosed with dementia, and the prevalence of the disease among those who have been diagnosed with Down syndrome increases to over 50% as individuals reach advanced age ( Bishop et al., 2015 ). Yet, McCallion et al. (2019) have noted that the absence of population data related to chronic conditions and serious illnesses commonly found among individuals with a developmental disability has largely resulted in their needs remaining hidden.

There is, however, a body of research emerging from the United Kingdom, Australia, and the Netherlands to suggest that unique factors disproportionately shape the experiences of people with developmental disabilities at the end of life, including: behavioral health needs, complex comorbidities, and polypharmacy ( Nicholas et al., 2017 ; O’Dwyer et al., 2016 ; Tuffrey-Wijne et al., 2016 ). Botsford (2000) noted several other individual-level factors that influence the response of people with developmental disabilities to death and dying, including: past learning and experience, intellect, communication skills, and family and staff perceptions of both the person and the circumstances of serious illness. A recent article by Fisher et al. (2020) indicated that nurses are uniquely positioned to offer a holistic approach to care for people with developmental disabilities. This holistic approach can promote self-determination and safeguard against harm at the end of life. Fisher et al. (2020) suggested that the use of a holistic approach is possible when nurses are aware of, trained in, and empowered to uphold their ethical commitments. Agency factors can also influence providers’ responses to individuals with a developmental disability who are nearing life’s end. These agency factors may include intricacy of staff roles, administrative policies and procedures, funding constraints, and complexity of community networks of service ( Botsford, 2000 ; Nicholas et al., 2017 ).

Due to many of these factors, people with developmental disabilities experience an underutilization of hospice and palliative care services, as well as high rates of hospital/institutional deaths (estimated at >80%; Friedman & Helm, 2010 ). Todd et al. (2021) similarly found in their exploratory study in Australasia that the majority of people with developmental disabilities died within a hospital setting. Community-based agencies in the United States often become increasingly reluctant or unable to provide specialized support and services when an individual’s serious illness warrants palliative care, hospice, and/or hospitalization due to questions and concerns related to insurance eligibility ( Lindley, 2018 ). Findings from the Institute of Medicine (IOM, 2014) also suggested that for individuals with a developmental disability, mismatches often occur between the needs of patients/families and the services that are available or can be reasonably obtained. The fragmented healthcare delivery system, marred by financial incentives, has often resulted in poor care coordination at the end of life ( Harrington, 2018 ; IOM, 2014 ).

Research has also suggested a disconnect between disability providers and hospice/palliative care services ( Dunkley & Sales, 2014 ; Hahn et al., 2015 ). While there is a growing body of research focused on interdisciplinary cross-training and care coordination, these interventions often faced significant implementation barriers, achieved inconsistent outcomes, and lacked strategies for widespread dissemination ( Lindley, 2018 ; Ronneberg et al., 2015 ). Yet, the IOM (2014) has continued to recommend that “integrated, person-centered, family-oriented, and consistently accessible care” be available to all individuals who experience a serious illness or injury (pp. 2–45). More recently, Clark and Watts (2021) reflected upon a humanistic approach to care. While establishing four typologies for dentistry care, the scholars actually articulated a path for healthcare providers to realize the IOM’s vision for high-quality, end-of-life care for people with developmental disabilities, including embracing listening and understanding, improving training, tailoring care, and advocating for equity ( Clark & Watts, 2021 ). If an inclusive end-of-life experience is to be achieved, these features are important to ensure the harmony between individuals’ values and the care they receive.

Through a combination of advocacy, legislative efforts, and judicial rulings, the deinstitutionalization movement that commenced in the 1980s has led to a paradigm shift whereby most individuals with a developmental disability no longer receive care and services in large, congregate settings but rather live in a family home or small community residence ( Braddock, 2002 ). As a result of this shift, individuals with a developmental disability have necessarily adopted an increased reliance on mainstream forms of healthcare and services ( Heller, 2019 ). However, current research specific to people with developmental disabilities has rarely explored where and how end-of-life care is rendered. This comparative case study sought to address this gap by exploring the end-of-life experiences of two aging adults with developmental disabilities and life-limiting serious illnesses in the United States, thereby illuminating the myriad factors that inform care across settings.

Methods and Analysis

Study design.

The findings presented in this paper were derived from a larger exploratory study that employed a multiple-case study design to describe features perceived to facilitate or impede “good deaths” among aging adults with developmental disabilities in community residences within the United States. For the purposes of this paper, a comparative case study design was used to describe the complex and dynamic interplay between policy and practice that inform the trajectory of how two individuals with developmental disabilities reached life’s end. The aim of this descriptive case study was to retrospectively sequence the events that preceded and proceeded end of life, elucidating the phenomena of death for two aging adults with developmental disabilities.

Study Setting

The study was conducted in collaboration with a not-for-profit organization that provides services to individuals with various disabilities and other specialized needs across one state within the northeastern region of the United States; this organization will be referred to as the “provider agency” throughout this paper. It has been well-documented that research with and about people with developmental disabilities has been fraught with methodological challenges, including barriers to accessing data and recruiting study participants (see: Savage et al., 2015 ; Swaine et al., 2011 ). Entree to agencies remains challenging and trust between the PI and key informants is often a prerequisite ( Patton, 2015 ; Savage et al., 2015 ).

After approaching six agencies with whom the PI had existing professional relationships, two agencies expressed willingness to partner. However, only one agency was able to grant the PI access to decedent records. This particular agency had retained all records for those who have died within the last 10 years in accordance with retention policies established by their licensing and regulatory authority. In addition, the agency’s executive leadership team agreed to provide the PI with names and contact information for all staff and surrogates associated with these cases. Therefore, the study setting was selected purposively due to its capacity to facilitate access to information-rich cases for study ( Patton, 2015 ).

Study Sample

The unit of analysis, or the “case,” was defined as a deceased individual with a developmental disability who resided in a community residence operated by this provider agency within the last 10 years (2007–2017). The two cases presented in this paper were extracted from the larger exploratory study for several reasons. First, these were the only cases within the larger study where the PI was able to triangulate three sources of data (record review; staff interviews; and the elusive surrogate interviews), thus providing the opportunity for rich within-case analyses. In addition, both individuals represented in these cases died while enrolled in hospice care, but one did so in a hospital setting and the other did so at home. These similarities and differences offered an opportunity for rich cross-cases analyses, describing the distinct ways in which two people with developmental disabilities accessed and experienced this often-underutilized service.

Data Collection

To retrospectively reconstruct the last year of life of these two individuals, three phases of sequential data collection were used. Phase I involved a review of all available retained records for the deceased individuals. Phase II included semi-structured interviews with consenting agency staff. These interviews were conducted with former and current direct care staff (i.e., frontline staff, group home managers, program managers); clinical staff (e.g., behaviorists, nurses, social workers); professional staff (e.g., members of the quality assurance department, human resource officers); and, the executive leadership (i.e., senior leaders within the organization). Finally, Phase III involved semi-structured interviews with consenting surrogates (e.g., family, appointed guardians, caregivers). Data were collected from multiple sources to support analytical triangulation to minimize the limitations of retrospective recall and biases of any specific data source ( Charmaz, 2014 ; Yin, 2014 ). Table 1 presents additional information regarding each phase of the data collection process for the two cases presented in this paper.

Study Data.

Note . Study Data. This table illustrates additional details regarding the three sources of data that were collected and then triangulated for this comparative case study. The numbers in parentheses represent the total number of current/former employees and family members who met the inclusion criteria and were recruited to participate in a semi-structure interview regarding that particular case.

A researcher-developed record review instrument was used to collect data during Phase I; information regarding the illness trajectory, as operationalized by the variables of diagnosis/prognosis, symptoms, and medical care, was collected along with data regarding demographic characteristics and advance directives. Semi-structured interviews were conducted with staff members during Phase II and with surrogates during Phase III. Both interview guides consisted of open- and closed-ended questions, which were researcher-developed and adapted from the Quality of Death and Dying instrument ( Downey et al., 2010 ).

Additionally, a field diary was maintained by the principal investigator (PI) throughout the duration of the study. Hand-written field notes facilitated the PI’s ability to document data relevant to the study aims but not otherwise collected on the previously-described instruments. The field notes also served to document periodic self-reflections, early analytical conceptualizations, and important insights throughout data collection and analysis ( Corbin & Strauss, 2015 ; Patton, 2015 ).

Data Analysis

The first phase of analysis involved the extraction and visual display of data derived from the records reviewed during Phase I of data collection. Data was double-entered during this phase to ensure accuracy ( Miles & Huberman, 1994 ). Within-case displays were used to describe the chronological progression of each person’s last year of life, which included the tabulation of events known to be common in serious illness ( Miles & Huberman, 1994 ; Yin, 2014 ). For example, these early matrices included the number of days per month during which a person visited the emergency room, spent in the hospital, and was enrolled in hospice care. As the data was displayed, connections between events within each matrix became more apparent; for example, the relationship between primary care appointments, referrals to specialists, and medication changes were visually displayed by a network of nodes or data points with connecting lines on the matrix ( Miles & Huberman, 1994 ). The visual display of these networks also helped to illustrate triggering events for emergency room visits, hospitalizations, and care transitions during the last year of life.

In order to develop rich descriptives for each case within this comparative study, data from the staff member and surrogate interviews were next coded, extracted, and then incorporated into the data displays during the second phase of analysis. This process began with an a priori list of codes derived from the variables and patterns observed in the data displays, including such codes as: diagnosis, interdisciplinary team meeting, and care transition ( Patton, 2015 ; Yin, 2014 ). Interview transcripts were individually coded by the PI. Additional codes, such as funerals and memorials, were developed and defined in analytic memos for inclusion on the master code list ( Patton, 2015 ). After all transcripts had been coded, the PI created time-ordered descriptive displays for each case ( Miles & Huberman, 1994 ) where the earlier data displays were expanded; for example, a hospitalization that had been previously displayed numerically to represent the frequency in which it occurred during a given month was now displayed with data that included admitting diagnoses, test results, treatment plans, discharge guidelines, and lengths of stay.

During the final phase of analysis, critical incident charts were created for each case to “limit an event listing to those events seen as critical, influential, or decisive in the course of some process” ( Miles & Huberman, 1994 , p. 115). The charts included direct quotes and summary statements extracted from the record review instrument, interview transcripts, and field notes. These charts served to articulate the series of events that transpired from the onset of signs and symptoms of serious illness through the time period following death. This phase of data analysis enabled the principal investigator to verify conclusions made during the first phase; specifically, the displays were corroborated and refined to give form to the rich case descriptions that are presented in this paper.

Strategies to Support Rigor

In addition to the strategies already noted, an audit trail was maintained and documented in memos to describe methodological decisions, meetings with members of the research team (i.e., this paper’s co-author; a palliative care nurse practitioner), and any changes to the study protocol ( Patton, 2015 ). Preliminary analyses were presented to an interdisciplinary group of end-of-life scholars for review and comment; their feedback served to refine the analytical process used in the creation and interpretation of the data displays. Several months later after analysis was completed, findings were presented at the annual retreat of the provider agency, where members of the executive leadership team and other key informants (i.e., surrogates, staff) were present. To facilitate member checking, attendees were invited to provide feedback, during which time they confirmed (often through tears) the accuracy of the cases described ( Patton, 2015 ; Yin, 2014 ).

Ethics and Dissemination

The study was approved by the University at Buffalo Institutional Review Board (Study IDs: STUDY00001927; STUDY00002138). Interviews were audio recorded and professionally transcribed with interviewee consent. All data files were de-identified and stored on the secure drive at University at Buffalo. Specific details and/or combination of details about deceased individuals or staff members and surrogates who were interviewed for this study have been changed, redacted, or otherwise withheld in the reporting of results to uphold confidentiality ( Yin, 2014 ).

The following section describes the end-of-life experiences of two aging adults with developmental disabilities and life-limiting serious illnesses. The demographic characteristics of these individuals are presented in Table 2 and at the start of each case study. Each individual’s end-of-life experiences are then described, beginning with diagnosis through hospice enrollment and then to the time period immediately following their death. Throughout this paper, each person will be referred to by a pseudonym, respectively: Susan and Rick.

Case Characteristics.

Note . Case Characteristics. This table illustrates demographic characteristics for each individual represented in this comparative case study.

Case 1: Susan

Susan was a 42 years old woman who enjoyed interacting with others and successfully completing work-related tasks at her adult day services program; she expressed her happiness by smiling, clapping, and laughing. Susan was diagnosed with Down syndrome shortly after birth following a pregnancy marked by complications. Susan was later determined to have sensory impairments, as well. Susan received a terminal diagnosis of metastatic cholangiocarcinoma approximately a month and a half prior to her death.

In addition to her terminal cancer diagnosis and intellectual disability, Susan had multiple comorbidities, including dementia of the Alzheimer’s type and several gastrointestinal conditions that required ongoing monitoring and treatment from her primary care physician and specialists. She also had several behavioral health diagnoses, including a documented anxiety disorder, that was managed by her psychiatrist with routine and PRN medications. Susan had a history of receiving behavioral support services for head hitting, grunting and screaming, and pushing of individuals and objects.

Although Susan did not speak, she communicated with others through nonverbal gestures and touch. When she turned 18 years old, Susan was determined to be “incapacitated” through guardianship proceedings. It was at this time that a court appointed her mother as her legal guardian, which was a role she served in for the duration of Susan’s life. Susan lived in multiple community residences beginning in childhood. She transitioned to the provider agency in her late 20s, first as a participant in their adult day services programs and then as a group home resident 1 year later.

Approximately 44 days prior to her death, staff members observed Susan’s skin to be yellow. Several staff members also observed an increase in the intensity and frequency of Susan’s episodes of screaming both at the group home and the adult day services program. Staff members assisted Susan to her primary care physician where she was diagnosed with jaundice and blood work was requested to rule out liver failure and/or hemolysis. The primary care physician, after reviewing the results of the bloodwork, requested an ultrasound and then a CAT scan. The latter showed that Susan had masses on her lungs and other organs.

Plan of care

Ten days after the initial appointment for jaundice, staff members contacted the primary care physician to inquire about the various test results and treatment options for Susan’s increasingly jaundiced skin. The primary care physician advised that Susan should be immediately transported and admitted to the hospital, bypassing the emergency department, for additional diagnostic testing. After the testing was complete, an oncologist informed a clinical staff member from the provider agency (who had accompanied Susan to the hospital) that she had terminal cancer. This staff person informed her supervisor of the diagnosis and Susan’s mother/guardian also was contacted.

Over the following 6 days, Susan remained hospitalized as her symptoms were treated and her guardian decided the most appropriate course of action. Susan’s mother ultimately elected not to pursue curative or life-sustaining treatment due to her 2 1⁄2 to 6 months prognosis and history of situational anxiety specific to medical settings and care. Susan was referred for home hospice care with orders to return to normal activity as tolerated. Susan’s mother and staff members discussed the most appropriate location for home hospice care, either at her home or the group home. They selected the latter, due in part to the familiarity of that setting and the availability of 24-hour staffing and support. The group home staff confirmed the acceptability of this decision with the surrogates of Susan’s housemates, all of whom responded positively and expressed that this would be something they would want for their loved ones should they become seriously ill.

As part of her hospice admission and 1 day prior to her hospital discharge, Susan’s mother signed a Do Not Resuscitate/Do Not Hospitalize order. In coordination with the hospice physician, her primary care provider gave orders to discontinue non-essential medications when their supplies were finished and to acquire durable medical equipment (e.g., incontinence guards, oxygen, wheelchair, hospital bed, bedside commode) as needed. The primary care provider also completed a Physician’s Orders for Life-sustaining Treatment form with the following goals of care handwritten and checked: (a) Keep comfortable and maintain quality of life; (b) Palliative care only; (c) No artificial nutrition by tube; (d) Do Not Attempt Resuscitation and allow natural death; and (e) Consent obtained from or discussed with “Legal Guardian” and “Other.”

Interdisciplinary team (IDT) meeting

A day after her discharge from the hospital, an IDT meeting was convened with Susan’s case manager; hospice nurse and social worker; guardian and other involved family; and members of the provider agency’s direct care staff, clinical staff, and executive leadership team. The IDT discussed her terminal cancer diagnosis and prognosis. They discussed her hospice evaluation (e.g., observations of her low blood pressure, dehydration, and worsening jaundice) and hospice recommendations (e.g., the continuation of normal activities as able, the discontinuation of specialized care and unnecessary medications, and the use of “Physician’s Verbal Orders” to document the hospice physician’s recommendations and the dissemination of these orders to the prescribing doctor for authorization). The IDT agreed that hospice would provide a comfort pack of medications with the authorization of her treating physician. The IDT also agreed to discontinue Susan’s service plan goals, and staff members agreed to submit an Individualized Habilitation Plan (IHP) modification to confirm this decision. The provider agency sought permission for additional staffing and the opportunity to submit an associated funding request to the state’s Division of Developmental Disabilities. The IDT discussed opening and transferring funds from the state payee to a burial account.

The IDT also discussed implications of Danielle’s Law (P.L. 2003, c. 191 [A3458]). In the state where the provider agency operated, Danielle’s Law requires staff working in facilities that provide services to people with developmental disabilities and/or traumatic brain injuries to call 911 in the event of a life-threatening emergency. Because Susan’s mother authorized home hospice care and the IDT agreed with this decision, Danielle’s Law became relevant because of the likelihood that Susan would experience a life-threatening event in the group home at the end of her life. The IDT discussed that responding to that emergency by either providing care (e.g., CPR) or calling 911 would be in direct contradiction with her advance directives. To resolve this issue, the IDT (led by a member of the provider agency’s executive leadership team, primary care physician, and hospice nurse) discussed the issue with the state’s oversight organization, consulted with the state’s nurse, and ultimately received written approval authorizing a home death.

Home hospice care

For several weeks, Susan continued to participate in her normal routine. She had visits with family and friends, attended her adult day services program, and participated in daily activities within the group home as tolerated. Hospice nurses visited routinely to monitor her status (including taking vitals), provide practical guidance and emotional support to staff, and facilitate her medication management (e.g., discontinuing non- essential medication, obtaining prescriptions for routine and PRN medications to control pain and other symptoms, dispensing and securing controlled substances in accordance with the state’s Division of Developmental Disabilities regulations). Staff members developed a rotating schedule where clinical staff members and direct care supervisors would be on-site frequently to support and minimize the impact on direct care staff members, many of whom had never witnessed serious illness or experienced a death of someone they knew. Clinical staff members and supervisors also facilitated conversations with Susan’s housemates, respective of their capacity and preferred communication mode. Her housemates were informed of the disease trajectory and imminence of Susan’s death, as determined appropriate.

Two weeks before her death, Susan went home with her mother to celebrate a holiday. Her mother coordinated with hospice to facilitate this visit, including arranging her home to accommodate Susan’s changing needs (e.g., moving beds to the first floor), obtaining her routine and PRN medications, and having an on-call contact number for hospice. The visit went relatively well with Susan appearing to be happy throughout their time together. The only significant challenge of the visit involved the oral administration of morphine, for which Susan’s mother needed the help of local family who would soothe Susan while she administered the medication every 4 hours.

End of life

A week before her death, Susan continued to reside at the group home becoming increasingly restless with periods of increased screaming. This change in presentation was addressed with more frequent visits by the hospice nurse. In addition, routine and PRN medications were added to treat possible pain and other symptoms. In the final days of life, Susan became increasingly sedated but was never observed to be comatose. During these final days, family and staff members visited periodically and the hospice nurse remained at the group home 24/7.

Susan died in the morning at the group home after her housemates had left for their day services program. Her death was witnessed by her hospice nurse and approximately 2 to 3 direct care staff members, who followed established protocol for notifying the appropriate individuals of her passing. In the hour following her death, additional staff members arrived on-site as did her mother and another family member. Beginning with the family, each person who arrived to the group home had the opportunity to privately observe Susan and say goodbye. The funeral home arrived shortly thereafter to transport Susan’s body. At the request of the staff members, Susan’s body was taken out the front door, as opposed to the garage, with all present staff members and her family witnessing. Hospice, in coordination with the provider agency, disposed of Susan’s medications and facilitated the return of her durable medical equipment. Susan’s family assumed responsibility for her personal belongings.

After her passing

The family coordinated her burial and funeral arrangements, which were funded through her burial account and held at the family’s local church. The services were attended by family, friends of the family, and some agency staff members. A memorial service was also held at Susan’s group home several weeks after her passing. Thirty-six individuals were in attendance, including staff members, family, and roommates/friends and some of their surrogates. A document that memorialized Susan was distributed and a poem was read on the back porch in her honor.

Case 2: Rick

Rick was a 42-year old man who was adored by his family, friends, and the staff who came to know him. He had myriad pastimes and passions, including many that were related to his dream of 1 day serving on the local police force. Rick died as a result of complications from non-COVID pneumonia approximately 2 weeks after being admitted to a local hospital with signs of labored breathing. Rick was diagnosed with a rare genetic disorder, Cornelia de Lange Syndrome, shortly after birth, with an initial prognosis of approximately 2 years. He had many of the characteristics associated with this syndrome, including distinct facial features and short stature, hearing and vision impairments, behavioral needs, digestive tract issues, and intellectual disability. Documentation in clinical records was inconsistent, with medical descriptors of “moderate” to “severe” intellectual functioning and adaptive behavior listed.

Rick had multiple comorbidities in addition to his intellectual disability, including dysphagia which had contributed to multiple cases of aspiration pneumonia and ultimately a compromised respiratory system. Prior to his hospitalization, he was receiving primary and specialized care for the following conditions: gastroesophageal reflux disease, asthma, peripheral vascular disease, lymphedema, prediabetes, nocturnal incontinence, vision loss, unsteady gait, and obesity. Rick had no documented behavioral health diagnoses; however, he did have a history of receiving behavioral support services for hitting others and breaking objects.

Rick understood most things that were said to him, and he used single words or phrases, modified American Sign Language, and nonverbal cues to express himself. Rick’s parents served as his co-guardians; additionally, arrangements had been made for his sister to assume guardianship responsibilities in the event both of Rick’s parents predeceased him. Despite early recommendations to consider institutional care, Rick lived at home with his family until his 30th birthday. He transitioned to a group home with the provider agency in the hopes of addressing his increasing behavioral support needs and providing opportunities for meaningful peer relationships.

Approximately 13 days prior to his death, Rick returned to the group home following a birthday celebration with his family. As the day progressed, he was observed to be shivering and breathing heavily. He was administered the oral inhalant, Albuterol, as a PRN medication to prevent and treat difficulty breathing. His symptoms worsened, and he began refusing both food and drink. He was transported to the local emergency room, where he was admitted for a “slight case of pneumonia.”

Upon admission, Rick was treated with intravenous antibiotics, periodic suctioning, and breathing treatments by a respiratory therapist approximately twice a day. He was also referred for a swallow study to determine his risk for aspiration; ultimately, a nutrition referral was made for intravenous feeding. Group home staff members and/or Rick’s family were with him for the duration of his hospitalization, facilitating communication and providing activities of daily living support. Approximately 3 days after his admission, Rick’s coughing and breathing difficulties persisted despite the addition of BiPAP ventilation. At the recommendation of the treating hospitalist and pulmonologist, he was moved to the intensive care unit (ICU) where he was placed on a ventilator.

End-of-life decision making

Two days prior to his death and 11 days after his symptoms prompted the initial visit to the emergency department, Rick’s mother/guardian, sister, and another family member convened a meeting with one of his treating physicians to discuss a Do Not Resuscitate order. Although Rick had been responding to the intravenous antibiotics and appeared oriented and comfortable for the duration of his stay in the ICU, attempts to wean him from the ventilator had been unsuccessful. The physician advised on various options with respect to his ongoing care needs during the family meeting, including recommending a permanent tracheostomy to extend his life.

The family expressed concern that Rick may attempt to remove the permanent tracheostomy; they feared he may require extended post-surgical sedation and/or restraint that could significantly diminish his quality of life. They also expressed concern that a permanent tracheostomy may require Rick to transition to an alternative long-term care setting, such as a nursing home, which would be both unfamiliar and offer fewer opportunities for community living. Some agency staff members, however, initially disagreed with the family’s decision and felt the agency both could and should continue to provide care to Rick should he have a tracheostomy. The agency’s administration, in consultation with involved staff members, considered all medical reports and ultimately affirmed the guardian’s legal authority to make the final decisions about Rick’s care. As one administrator noted, “While I wished for a different decision, I respected their choice.”

Hospital hospice care

Approximately 3 hours after his guardian signed the Do Not Resuscitate and orders to withdraw life-sustaining treatment, Rick’s breathing and feeding tubes were removed under the witness of three physicians and in accordance with the state’s Division of Developmental Disabilities’ Division Circular #38 (N.J.A.C. 10:48B). He was then admitted to hospice care and transferred to an inpatient hospice unit within the same hospital where he had previously been receiving care. Initially, it was estimated that Rick would live for approximately a few minutes to hours following the withdrawal of life-sustaining treatment. However, he remained in hospice care for approximately 2 days prior to his passing. Staff members and his family perceived him to be both comfortable and peaceful during this time. He had frequent visits from extended family and staff members, with both his mother and sister remaining with him around the clock. At approximately 12:30 pm following a telephone call from his eldest nephew, Rick died surrounded by his family. Rick’s brother-in-law notified the agency’s staff members of his passing. Rick’s family assumed responsibility for his possessions, and the agency returned all of his unused medications to the pharmacy.

After his passing

The family coordinated Rick’s funeral arrangements and cremation, which were partially funded by his burial account. Memorial services were held at a funeral home local to both Rick’s family and his group home. A family friend arranged for police cars to gather outside, while pictures of Rick in a police uniform and some of his favorite objects were displayed in memoriam inside. Family, friends, and community members, along with agency staff members and clients, were in attendance. Several staff members spoke in Rick’s honor at the services.

The agency also held a memorial service at the group home shortly after his passing, during which time they presented a plaque and planted a bush in his memory. In addition, the family placed a call out through social media during the holiday season following Rick’s death. They asked people to mail his guardian a star in honor of Rick, which they then used to decorate an overflowing “tree of stars” in his memory that Christmas.

The purpose of this study was to explore the end-of-life experiences of two aging adults with developmental disabilities and life-limiting serious illnesses. A comparative case study was conducted to analyze data from three sequential sources (records, staff, surrogates), which were then triangulated via data displays and case descriptions to retrospectively reconstruct the last year of each individual’s life. Findings suggest the feasibility of quality care for adults with developmental disabilities as they age and become seriously ill, while also elucidating the unique challenges that must be addressed to ensure a humanistic approach to death and dying.

The cases of Susan and Rick serve to illustrate distinct pathways by which individuals with developmental disability can pursue hospice care. In the United States, the federal health insurance (Medicare) hospice benefit and hospice services are accessible to individuals with developmental disability, including those who are receiving residential services through the Medicaid Home and Community-based Services (HCBS) Waiver ( Moro et al., 2017 ). However, this benefit and other palliative care services are often underutilized by individuals with developmental disability ( Stein, 2008 ; Takenoshita et al., 2020 ). This underutilization is often attributed to a lack of collaboration between developmental disability providers and hospice/palliative care providers; lack of knowledge (among family, staff, healthcare providers) of available referral services; and fears or concerns regarding the dying process ( Dunkley & Sales, 2014 ; Friedman et al., 2012 ).

Current research has found that effective interdisciplinary collaboration, system-wide support, and mutual respect are essential for high-quality end-of-life care; yet, little is known regarding how to operationalize these best practices within day-to-day services for individuals with developmental disability ( Fisher et al., 2020 ; Ronneberg et al., 2015 ). The case of Susan illustrated how home hospice was predicated on the support of the person with developmental disability, their surrogate and/or family, direct care staff and administrators from the provider agency, healthcare professionals, direct care staff and administrators from the hospice agency, and state case managers and administrators. In the case of Rick, consensus about the decision to withdraw life-sustaining treatment and pursue comfort-focused care was reached more slowly but ultimately his healthcare providers and agency staff were deferential to the family’s wishes. The emotional, logistical, and political nature of these decisions could have imposed insurmountable barriers had there not been consensus around the individual’s care.

While the end-of-life experiences of Susan and Rick were generally indicative of high-quality care, they reinforce the distinct challenges individuals with developmental disability face when they become seriously ill. Timely diagnosis and accurate prognostication can be challenging ( Heller et al., 2017 ), which is especially difficult when communication barriers impede the expression of pain and other symptoms. Healthcare providers, including nurses, often lack training and knowledge specific to the treatment of individuals with developmental disability. Similar to the findings of Nicholas et al. (2017) regarding people with the dual diagnosis of developmental disability and mental illness, system-related barriers are pervasive in end-of-life care. Institutional policies and practices have contributed to extensive waitlists and other barriers to access services ( Fisher et al., 2020 ; Tuffrey-Wijne et al., 2016 ).

Barriers to timely diagnosis have implications for survival, while delayed discussion about prognosis may impact the quality of the dying experience. In this study, both individuals experienced relatively brief end-of-life trajectories, including short lengths of stay with hospice. Susan died 44 days after the initial symptoms of her serious illness were observed and less than a month after enrolling in hospice care. Rick died within 13 days of being admitted to the hospital and less than 2 days after transferring to hospice care. However, both Susan and Rick had other life-limiting conditions. Yet, it was not until they became seriously ill that discussions regarding their end-of-life care took place. Their experiences highlight the importance and need for regular advance care planning, which recent research has shown to be easily integrated into the person-centered planning process required of those receiving services through federally-funded health insurance programs in the United States ( McGinley et al., 2021 ).

The events following Susan’s and Rick’s deaths provide examples of the ways in which individuals can be remembered by the people who cared for them and communities where they lived. Historically, individuals with developmental disability have been excluded from rituals related to death and dying ( Friedman, 1998 ; Friedman & Helm, 2010 ). Research has also found that surrogates, healthcare providers, and agency staff to people with developmental disabilities can experience disenfranchised grief, especially when the profoundness of the relationship and subsequent loss are not acknowledged ( Doka, 1999 ; Perkins & van Heumen, 2018 ). In this study, Susan was memorialized during a family-organized funeral service and an agency-organized tribute ceremony. Rick was honored during a funeral service, a memorial service at his residence, and a tribute Christmas tree. This indicates that personalities, preferences, and impact of the individuals can be memorialized by family, friends, caregivers, peers, and the larger communities in which they lived both during and after the dying process.

Limitations

This study had several limitations that are important to acknowledge. The utilization of a case study design has implications for the generalizability of the findings ( Tsang, 2014 ; Yin, 2014 ). For example, both case studies involved individuals with developmental disabilities who were residing in group home settings with their family members serving as their guardians, features which largely informed both decision making and care at the end of life. Many individuals with DD live independently or with family, while others may be their own guardians or have court-appointed guardians ( Braddock et al., 2017 ). Findings from this study may not be easily extrapolated to these scenarios. These cases do, however, achieve the purpose of the study by offering a meaningful contribution to the extant literature by elucidating the distinctive end-of-life experiences of two individuals with developmental disabilities in community residences. While the current research suggests that hospice care is underutilized by individuals with developmental disability, these case examples serve to illustrate the feasibility of this type of care and the improved end-of-life outcomes that can result ( Friedman et al., 2012 ).

The single study setting was selected purposively due to the level of access to individuals’ records, staff members, and surrogates that the provider agency granted to the PI. However, all of the community residences operated by the provider agency were located in one state within the northeastern United States, and their operations were directly informed by federal social welfare programs (e.g., Medicare, Medicaid) and state laws, policies, and procedures (e.g., P.L. 2003, c. 191 [A3458], “Danielle’s Law”; Division of Developmental Disabilities Circulars). There were findings from this study that may not be generalizable to other states or nations that operate under their own distinct disability and health policies. More broadly, however, these findings suggest that local policies have implications for individuals’ illness trajectories and end-of-life experiences; as such, healthcare providers must be knowledgeable of and attentive to the reciprocal relationships that exist between policies and practices.

Conclusion and Implications

Most states and nations have policies that inform services for individuals with developmental disability, including policies specific to end-of-life decision making and care. In this study, the state’s Division of Developmental Disabilities issued Division Circulars that inform and enforce policies across the various settings where individuals with developmental disability receive services, such as Division Circular #38 for “Decision-making for the Terminally Ill.” In addition, the legislature passed public laws that offered important safeguards by informing the delivery of care to individuals with developmental disability, such as Danielle’s Law. The challenge with these policies, as evidenced particularly in the case of Susan, is that they introduced rules and formalities that could have impeded the timely delivery of services and delayed care transitions. Nurses and other healthcare providers who support people with developmental disabilities must be knowledgeable of, and capable of, working within the constraints of these policies. They also should consider opportunities to advocate for policy change when they feel thwarted in their ability to support individuals with developmental disability to die in accordance with their and their surrogates’ expressed wishes. In these instances, healthcare providers may find frameworks, such as the consensus norms that emerged from the European Association of Palliative Care, provide valuable guidance for policy and practice ( Tuffrey-Wijne et al., 2016 ).

Although individuals with developmental disability are living longer, there are subsets of the population who are at increased likelihood for chronic, life-limiting diseases and conditions that can result in shorter life expectancies ( O’Leary et al., 2018 ). Providers should consider early palliative care involvement for those with serious illness diagnoses and who are amenable to supportive care in addition to their regular medical services. In this comparative case study, both of these patients received late hospice care, within days or weeks of their death. Nurses in primary care, hospital, and other settings are often the first to recognize the possibility and probability of death ( American Nursing Association Board of Directors, 2017 ; Glaser et al., 1965 ). Individuals with developmental disability and their caregivers would benefit from the articulation of these observations, especially if they can serve as a springboard for discussing end-of-life wishes and establishing advance care plans.

Acknowledgments

The authors also wish to thank Elizabeth S. Hull, MS, FNP for her expert review of early drafts of this manuscript.

Author Biographies

Jacqueline M. McGinley , PhD, LMSW, is an assistant professor at Binghamton University, College for Community and Public Affairs, Department of Social Work, Binghamton, New York.

Christina N. Marsack-Topolewski , PhD, LMSW is an associate professor at Eastern Michigan University in the School of Social Work, Ypsilanti, Michigan and is an Affiliated Research Associate at the MI-DDI.

Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This manuscript reflects findings from the first author’s dissertation study, which was funded by the University at Buffalo’s Mark Diamond Research Fund (Grant Number: SU-17-11).

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Case Study 3 – Palliative and End-of-Life Care

Click here to review the draft palliative and end-of-life care – interactive case study..

The following case vignette provides key concepts that could be considered when developing a plan of care for a patient who may require a controlled substance to manage their health concerns. As with any clinical situation, there are many patient variables that must be considered, including comorbid conditions, social determinants of health and their personal choices. You may choose to include different or additional health history and physical examination points, diagnostic tests, differential diagnoses and treatments depending on your patient’s context however this case vignette focuses on the aspects relevant to controlled substances.

Danny Kahan NP-Adult, specialty is palliative care Joshi Kamakani – 70 year old male with metastatic prostate cancer June Kamakani – patient’s wife Kelli Kamakani – patient’s 40 year old daughter

Danny is reviewing the patient history outside the house or in the car before visiting the patient.

Joshi Kamakani is a 70 year old retired engineer that the Palliative Care home care team and I have been looking after at home for the last two months. Joshi was diagnosed with inoperable prostate cancer three years ago and has been treated with ablative hormone therapy. Six months ago, Joshi started to have pain in his hips. His oncologist ordered a CT scan and found he had metastases in his ribs, pelvis and lumbar spine. Joshi and his wife June had a meeting with the team at the cancer centre and decided not to go ahead with any further cancer treatment. Our team has been involved since. June called me yesterday and asked me to make a home visit. Joshi has been having more pain this week and has been spending most of his time on the couch. He cannot get around without assistance and is very fatigued.

Joshi’s past medical history includes hypertension and reflux. He is taking Predisone 5 mg PO BID, Leuprorelin Depot 22.5mg IM every 3 months, hydrochlorothiazide 25 mg daily and pantoprazole 40 mg daily.

For pain, Joshi takes Morphine slow release 100 mg q12h and has not needed additional medication for breakthrough pain so far.

Takes place in the home. Patient is seen reclining on couch in first floor living room. Wife and daughter present.

Danny rings the doorbell and June lets him in.

June: Hi Danny. I’m so glad you’ve come.

Danny takes off his coat and shoes and walks into the living room. Kelli is sitting with her father who is covered up with a blanket on a couch in the main living area – he is awake but obviously drowsy. He smiles at Danny and holds out his hand. Danny shakes it a sits down in a chair opposite.

June: His pain killers just are not working any more – he’s uncomfortable when he is resting and it’s worse when he has to move around. It’s been happening for the last few weeks. He hasn’t had a fall but he is unsteady on his feet – especially soon after he get up. Joshi: I tried some acetaminophen from the drug store a few days ago but it really didn’t work. Kelli: Danny, you have to do something. He’s so uncomfortable. Danny: OK let’s talk about this a bit more. Joshi, were you sleepy after we increased the morphine 2 weeks ago? You were at 80 mg for each dose and now you are at 100 mg. Joshi: I was a bit sleepy for a few days and I had a bit of a weak stomach but that is gone now. I am a bit constipated though. Danny: when did you have your last bowel movement? Joshi: 4 days ago. Danny: OK we will have to address that today. I’d like to use the scale that I used at our last visit, it’s called the PPS, to assess your level of activity. ( Edmonton symptom assessment scale and Palliative Performance Score). Your PPS is 40% – last time I visited you were at 60%. June: yes, he is definitely having more trouble. I think the pain is preventing him from moving and that’s just making everything worse.

Danny: Joshi, your pain interference score tells me that the pain is severely interfering with your activity and I see that you are rating your current pain at rest at 6/10 and at 10/10 when you move. When I examined you, I did not note any changes from my last visit except for some new swelling over your left hip. June: Yes that’s where it is most sore – and before you ask, I am not going to the hospital for an xray. Kelli: Why can’t you just double his dose?

Danny [THINKS]: I will also add a bowel regime to address Joshi’s constipation and provide an order for a PRN anti-nauseant like metoclopramide or ondansetron. Joshi and his family will need to have education about the timeline of the peak benefit of the change in the regular dose, keeping track of PRN use, proper use of breakthrough medications (before care or any activity that causes pain), any other interventions we can include to help with his pain including adding other medications.

June: Danny, can I speak to you in private for a moment? June and Danny move to a private area of the house. Kelli and Joshi remain on the sofa. June: Danny, I have some concerns about having extra medication in the house and I need some advice on how to deal with this. My daughter had a real problem with drugs when she was in high school. She had to have treatment and as far as I know, she has been clean for the past 2 years. I have talked to her about having medication in the house and she tells me she’s not tempted but I really want to be sure we don’t have any incidents. I trust my daughter but I do worry that some things are beyond her control. Danny: Well June, it is always a good practice to have a plan for safe storage of medications. Here is some information about where you can purchase a locked box. I recommend you keep a key and have the hospice nurse take the other and have it numbered and controlled at the hospice office for the use of the nurses that care for Joshi. In the meantime, keep the medications in a place that you and Joshi can monitor and please keep a count of the medication in the containers and continue to write down when medication is given. June: Thanks Danny – I don’t want my daughter to think I don’t trust her. This should help.

Two weeks later – Danny is back in his office reviewing Joshi’s file with a Nurse Practitioner student…

Follow-up case question by Danny.

Student: Next up is Joshi Kamakani for review… Danny: Well, I’ve just been to see Joshi and his family. It has been two weeks since we increased his dose of morphine SR. We also added a neuropathic pain agent to help with his pain which has made him a bit more drowsy. He continues to take 20-30 mg breakthrough morphine/day and I noticed today that he has some myoclonus. Joshi’s pain is still in the moderate range with activity and now nausea is a problem.

Opioid rotation and opioid equianalgesia from NOUGG (McMaster Guidelines).

Danny: I think a rotation of opioid is the next step. Student: What medication should Danny consider and at what dose?

Danny: Joshi is using 270 mg oral morphine equivalents per day. To convert this dose to hydromorphone, the medication I have chosen to rotate to, we multiply by 0.2. Morphine 270 mg x 0.2 = 54 mg hydromorphone/day. We will want to convert 60% of the total daily dose so 54mg x .6 = 32mg. I want to give Joshi the new dose in a slow release form. It is most practical to provide Joshi with hydromorphone SR 15mg q12h and also provide him an additional 2-3 mg of hydromorphone immediate release for breakthrough pain. Providing him with the breakthrough dosing will be sure Joshi can have additional medication to help him until we are sure we have a stable, effective dose in 48-72 hours.

Learning Outcome

This interactive case study covered the following information:

• Opiate Titration
• Opiate Rotation
• Pain Assessment
• Assessment of adverse effects
• Safety Assessment
• Collaboration
• Family centred care

5 case studies: When is it time for palliative care versus hospice?

Never hesitate to say “I need help” if you’re struggling to cope with the pain and distress of a life-limiting illness. Hospice and palliative care providers are specially trained to hear your plea and will offer comfort, compassion and support.

“Just because you ask to speak with a palliative care or hospice care provider doesn’t mean you have to start service,” says Lisa Wasson, RN, clinical educator for HopeHealth.

Palliative care and hospice care are two different sets of services, although you might hear people use the terms interchangeably.

• Palliative care is for patients with a serious illness who are still receiving curative treatments, such as chemotherapy or dialysis. Palliative care providers offer medical relief from the symptoms or stress caused by either the illness itself or the treatment. They also help patients understand their options and establish goals of care.
• Hospice care is for patients with a life-limiting illness who have decided to stop curative treatments or have been given no further treatment options for cure or to prolong life. A full team of doctors, nurses, social workers, spiritual chaplains, hospice aides, grief support professionals and volunteers offer comfort and support to the patient and family.

To learn more about these differences, read The ABC’s of curative, palliative and hospice care .

5 case studies: Is palliative care or hospice care more appropriate?

Below are five fictional stories to give you a sense of when it could be helpful to ask for a palliative care or hospice care consultation. (Every medical case is unique, and only your health care provider can advise on your care.)

Case 1: An 86-year-old with Alzheimer’s disease is repeatedly hospitalized

Janet was diagnosed with Alzheimer’s disease nine years ago and lives at home in the care of her husband. She cannot make her needs known, is incontinent and depends on her husband to feed her. She has lost 20 pounds in six months and been hospitalized three times.

Palliative care or hospice? Janet would likely qualify for hospice care given how far along her disease has advanced.

Case 2: A man wishes to stop dialysis despite family’s wishes

Robert is 64 years old and has kidney failure, coronary artery disease and diabetes. He receives dialysis three times per week but wants to stop treatment. Today he was hospitalized after skipping two dialysis appointments. Robert’s family is concerned he is giving up, and they don’t know what to do.

Palliative care or hospice? Robert and his family need to get on the same page regarding his options and wishes. A good first step would be to ask a palliative care provider to guide that conversation with skill and sensitivity. Ultimately, Robert does have to the right to stop dialysis and choose hospice if he wishes.

“We deserve as much beauty, care and respect from the health care system at the end of life as we receive at the beginning when we are born” —Lisa Wasson, RN, CHPN

Case 3: A 30-year-old with breast cancer and her mother need support

Imani has undergone two rounds of chemotherapy and radiation for breast cancer. She has severe nausea and is losing weight due to poor appetite. Her mother, who works full time, is her primary caregiver.

Palliative care or hospice? Imani is actively fighting her disease with curative treatment and might qualify for palliative care. She would receive symptom management, support services to help her mother, and a conversation about her goals of care.

Case 4: A woman with autoimmune disorders battles depression

Cindy, age 52, has multiple autoimmune disorders, fibromyalgia pain and depression. She takes antidepressant medication, is self-isolating and cannot hold a job due to taking too many sick days.

Palliative care or hospice? Cindy is not a candidate for either palliative care or hospice care because she does not have a life-limiting disease. She still needs support, though, and would be referred to a case manager or social worker.

Case 5: A man with advanced ALS requests a do-not-resuscitate order

Carter has ALS, or amyotrophic lateral sclerosis, a progressive neurodegenerative disease. He has been hospitalized with infection five times and is on a ventilator. Carter is alert and told doctors he wants to return home and sign a do-not-resuscitate order (DNR). His family is upset about his decision.

Palliative care or hospice? While in the hospital, Carter can request to speak with a palliative care or hospice care provider to guide this sensitive conversation with his family. If he wishes to start hospice, a team will help him return home, tend to life-closure tasks and die in peace and comfort surrounded by his family.

Lisa Wasson hopes more patients and their families will seek to understand the benefits of hospice and palliative care. “We deserve as much beauty, care and respect from the health care system at the end of life as we receive at the beginning when we are born,” she says.

Questions about hospice care or palliative care? Contact us at (844) 671-HOPE or [email protected] .

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Palliative Care Costs in Different Ambulatory-Based Settings: A Systematic Review

• Systematic Review
• Open access
• Published: 27 December 2023
• Volume 42 , pages 301–318, ( 2024 )

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• Ana Helena Perea-Bello   ORCID: orcid.org/0000-0002-4899-8389 1 ,
• Marta Trapero-Bertran   ORCID: orcid.org/0000-0002-9233-1776 2 &
• Christian Dürsteler   ORCID: orcid.org/0000-0003-0840-2787 3 , 4  

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Cost-of-illness studies in palliative care are of growing interest in health economics. There is no standard methodology to capture direct and non-direct healthcare and non-healthcare expenses incurred by health services, patients and their caregivers in the course of the ambulatory palliative care process.

We aimed to describe the type of healthcare and non-healthcare expenses incurred by patients with cancer and non-cancer patients and their caregivers for palliative care in ambulatory-based settings and the methodology used to capture the data.

We conducted a systematic review of studies on the costs of ambulatory-based palliative care in patients with cancer (breast, lung, colorectal) and non-cancer conditions (chronic heart failure, chronic obstructive pulmonary disease, dementia) found in six bibliographic databases (PubMed, EMBASE [via Ovid], Cochrane Database of Systematic Reviews, EconLit, the National Institute for Health Research Health Technology Assessment Database and the National Health Service Economic Evaluation Database at the University of York, and Google Scholar). The studies were published between January 2000 and December 2022. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) methodology for study selection and assessed study quality using the Quality of Health Economic Studies instrument. The study was registered in PROSPERO (CRD42021250086).

Of 1434 identified references, 43 articles met the inclusion criteria. The primary data source was databases. More than half of the articles presented data from public healthcare systems (65.12%) were retrospective (60.47%), and entailed a bottom-up costing analysis (93.2%) made from a healthcare system perspective (53.49%). The sociodemographic characteristics of patients and families/caregivers were similar across the studies. Cost outcomes reports were heterogeneous; almost all of the studies collected data on direct healthcare costs (97.67%). The main driver of costs was inpatient care (55.81%), which increased during the end-of-life period. Nine studies (20.97%) recorded costs due to productivity losses for caregivers and three recorded such costs for patients. Caregiving costs were explored through an opportunity cost analysis in all cases, based on interviews conducted with and questionnaires administered to patients and caregivers, mainly via telephone calls (23.23%).

Conclusions

This systematic review reveals that studies on the costs of ambulatory-based palliative care are increasing. These studies are mostly conducted from a healthcare system perspective, which leaves out costs related to patients’/caregivers’ economic burden. There is a need for prospective studies to assess this financial burden and evaluate, with strong evidence, the interventions and actions designed to improve the quality of life of palliative care patients. Future studies should propose cost calculation approaches using a societal perspective to better estimate the economic burden imposed on patients in ambulatory-based palliative care.

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1 Introduction

Since the hospice movement started in the UK in 1967, the conceptual framework around palliative care (PC) has changed. Currently, healthcare systems worldwide must care for an older and sicker population receiving effective, long-lasting and expensive therapeutics. The need for universal coverage with an individualised medicine approach to achieve the best health-related quality of life stands in contrast to the scarcity of economic resources available for that purpose.

The idea that PC should be started only when patients with cancer are near death has changed. Palliative care can be initiated to alleviate symptoms in various cancer and non-cancer conditions several months before the patient’s death. Healthcare services and patients have changed, and both curative and palliative interventions, previously restricted to in-hospital settings, can be delivered in ambulatory-based settings such as primary care clinics, hospital outpatient services or even at home (the option most preferred by patients and their families/caregivers [ 1 , 2 , 3 , 4 , 5 , 6 ]), all depending on the patient’s health status, the system resources, and the health and social network that provides support [ 7 , 8 , 9 ].

The World Health Organization has defined PC as “an approach that improves the quality of life of patients and their families (adults and children) who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment and treatment of pain and other problems, whether physical, psychosocial, or spiritual” [ 10 ]. The European Association of Palliative Care defines PC as “active, total care of patients whose disease is not responsive to curative treatment. Palliative care takes a holistic approach, addressing physical, psychosocial, and spiritual care, including the treatment of pain and other symptoms. Palliative care is interdisciplinary in its approach and encompasses the care of the patient and their family, and should be available in any location, including hospital, hospice, and community …” [ 11 ]. These definitions encompass several scenarios for the provision of inpatient and ambulatory care.

Palliative care is now a part of early treatment and is provided in a broad spectrum of situations, not restricted to cancer inpatient settings. The variety of conditions and the care needed by patients have turned PC into a complex intervention for which the record-keeping process is not well defined. The resources consumed and the billing process are not standardised or clear-cut, and consequently our knowledge of healthcare costs related to PC is far from complete.

When PC is delivered as part of inpatient care (in a hospital setting), the billing process is standardised and the cost calculation is relatively straightforward. When PC is provided as an outpatient service or in a primary care or home setting; however, the billing process changes and numerous direct, indirect and non-tangible costs are left out of the final calculation.

In ambulatory scenarios, the fact that PC expenditure is shared by the healthcare system and patients/caregivers may lead to the misconception that PC is less costly. From a health system stakeholder’s perspective, it represents a monetary benefit to the system. However, if viewed from a societal perspective, it becomes evident that the money that is not being invested by the system in inpatient care is being spent by patients and families/caregivers to keep patients comfortable, physically, psychosocially and spiritually, while at home [ 5 , 12 , 13 , 14 ].

When the ambulatory approach is included in the calculations, non-paid out-of-pocket expenditures, loss of productivity of patients and caregivers, time devoted to care, leisure time lost by caregivers, and the psychological and emotional burden placed on patients and caregivers must be factored in and quantified. When all these factors are considered, ambulatory PC may be even more expensive than inpatient PC, depending on the population studied and the analysis performed, but this has not been adequately addressed [ 15 , 16 , 17 , 18 , 19 ]. Palliative care in ambulatory-based settings needs to be appropriately measured.

The three most common cancer conditions in Europe are breast, lung and colorectal neoplasms, which account for more than 25% of cancer cases. Chronic heart failure (CHF) and chronic obstructive pulmonary disease (COPD) are the most frequent non-cancer conditions, accounting for almost 15% of long-standing chronic diseases, [ 20 ] and it is estimated that by 2050 dementia (including Alzheimer’s disease [AD]) will rank third in terms of total patient care costs [ 21 ]. A large part of the healthcare budget allocated to PC is currently for the management of these pathologies. Still, clear information on the distribution of resources, the costs and the billing process for the services delivered is lacking, which offers a field for research.

Cost-of-illness studies aim to identify, measure, and appraise the healthcare and non-healthcare costs resulting from illness, premature death, or disability due to a condition and its related comorbidities and the associated billing process. Palliative care is an area of medical practice that looks after patients and caregivers in complex health, social, and emotional situations, and studies of costs and billing in this area are lacking. Identifying the most appropriate methodology to follow in economic studies in this area is complex, and a standardised approach has yet to be devised [ 22 , 23 , 24 ]. The lack of adequate information on costing and billing of the PC services exposes a knowledge gap that needs to be explored. There is thus a need for a systematic literature review (SLR) to describe the most relevant costs in ambulatory-based settings and the most appropriate methodology for appraising the existing data. This review aims to identify, describe and summarise the most common costs of ambulatory PC for patients with cancer and non-cancer patients and their caregivers and the different methodologies used to appraise and calculate them.

2.1 Literature Search

We conducted a SLR following the Preferred Reported Items for Systematic Reviews and Meta-Analyses (PRISMA) methodology, [ 25 ] with a protocol registered in PROSPERO (CRD42021250086). Search terms combined variants of “palliative care”, “cost” and various types of disease. The search strategy included general and Medical Subject Heading terms combined with the Boolean connectors AND OR (Table S1 of the Electronic Supplementary Material [ESM]) and was conducted on PubMed, EMBASE, Cochrane, EconLit, and the National Institute for Health Research Health Technology Assessment Database and the National Health Service Economic Evaluation Database using the Ovid platform. The search was restricted to studies published from 2000 to 2022 that included adult patients. Grey literature was searched in Google Scholar, and article references were hand searched for additional papers.

2.2 Study Selection

We included studies on the costs of PC for patients with various types of cancer (breast, lung or colorectal) and non-cancer patients (mainly those with CHF, COPD or dementia/AD). There was no language restriction. Studies that focused mainly on hospital costs, complete economic evaluations, posters, letters to the editor, case reports and case series were excluded.

To include studies in the SLR, we operationalised the following terms based on other authors’ definitions:

Outpatient/ambulatory services: specialist-level PC services, either as a brief consultation or as a concurrent care model, provided in collaboration with the patient’s primary treating physician (and nurse). The aim is to provide immediate post-discharge follow-up, continuity of care according to plans developed in the hospital, medication reconciliation, and responsiveness to patients’ and family members’ questions and concerns after the patient returns home from the hospital [ 26 ].

Inpatient services: those provided in hospitals (intensive care, inpatient care, emergency department visits, ambulance services and day case treatments) [ 6 ].

Home-based services: pain management, symptom control and psychosocial support delivered by a specialised trained team. Nurses or physicians provide PC with or without connection to a hospital or hospice. The team also provides psychosocial support to family members [ 27 ].

Hospice services: community-based care that is offered, ideally, by a multidisciplinary team that supports patients with advanced disease and their families, [ 28 ] and can be provided in a patient’s home setting or in palliative and hospice facilities. Hospice care may be provided to outpatients or inpatients [ 29 ].

Caregivers: individuals (e.g. adult children, spouses, parents, friends and neighbours) who provide care that is typically uncompensated and usually at home, which involves significant amounts of time and energy for months or years, and that requires the performance of tasks that may be physically, emotionally, socially or financially demanding [ 30 ].

2.3 Data Extraction

A predesigned data collection database was used to extract relevant information from the selected papers: data on general characteristics, design and methodology, clinical data from patients, and sociodemographic information from patients and caregivers, in addition to data on the type of costs recorded and the methods used to measure them. The general conclusions of every study were of interest to establish the utility of the data collected (Table S2 of the ESM). The first screening was conducted by the lead author (AHPB). Each abstract and paper selected was reviewed by two investigators (MTB and CD), and data extraction was performed independently. The decision for inclusion in the review was made by two investigators (AHPB and MTB). Whenever there was a disagreement, the papers were reviewed by a third investigator (CD). Microsoft Excel ® was used to summarise and Stata 14.2 ® to analyse the results from the SLR. After articles that met the inclusion criteria were collected, summary descriptive statistics were used to describe individuals’ demographic and clinical characteristics, the studies’ methodological characteristics and the type of costs analysed. A quantitative analysis of costs was not performed because of the heterogeneity of data units reported; therefore, the results do not show mean unit or annual costs but rather the main types of costs included in the calculations, considering the different settings and types of disease. All descriptive results are expressed in percentages, but the actual number of studies is always indicated to avoid overstating the results, in view of the limited number of studies found.

2.4 Risk of Bias

Study quality, based on the Quality of Health Economic Studies (QHES) grading system [ 31 , 32 ], was double reviewed and rated by two investigators (AHPB, MTB). The QHES criterion (quality categories [QC]) checklist was constructed and validated to evaluate cost-minimisation, cost-effectiveness and cost-utility analyses. The QHES grading system emphasises appropriate methods, valid and transparent results, and comprehensive reporting of results of each study [ 31 ] and has been used previously to evaluate the risk of bias in cost analysis and economic burden studies [ 33 ]. In the QHES grading system, items 1, 2, 7, and 12–16 (Fig. 1 , grey vertical bars) reflect the extent to which studies reported data in the original publication, and items 3–6 and 8–11 reflect study quality (Fig. 1 , blue vertical bars) [ 32 ]. The QHES instrument, like other instruments applied to cost studies, such as the Consolidated Health Economic Evaluation Reporting Standards (CHEERS) statement [ 34 ], serves as a checklist for the reporting of items. The more items included, the more complete the information. Hence, the use of the QHES instrument allowed us to assess the quality of reporting of a study and, partially, the quality of the way in which the studies had been conducted. During the QHES criterion validation process, the authors proposed four quality categories as a result of the process of weighting the scores obtained (QC1-QC2-QC3-QC4) and suggested that the higher the category, the greater the reporting of data and the higher the quality of the methodology [ 31 ]. We classified every article included in one of these categories to show its overall completeness.

Frequency of each Quality of Health Economic Studies (QHES) criterion met by included studies. Quality categories (QC): QC1 (total score: 0–25) [ red rectangle ], QC2 (total score: >25–50) [ orange rectangle ], QC3 (total score: >50–75) [ yellow rectangle ], QC4 (total score: >75–100) [ green rectangle ]

The search identified 1434 papers. After removing duplicates and documents that did not meet the inclusion criteria (1324 in total), and following a hand search of papers’ references, 117 articles were thoroughly read. Of those, 43 studies were ultimately included in the SLR (Fig. 2 ).

Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow chart

3.1 Risk of Bias Assessment

Only one study was categorised as QC1 and three studies (6.98%) as QC2; 34 studies (79.07%) had scores of between 51 and 75 (QC3), and five studies (11.63%) scored 76 or more (QC4) [Table S3 of the ESM]) (Fig. 3 ). None of the studies was excluded because of the QC score, and therefore all are included in the final count.

Number of studies in each Quality of Health Economic Studies (QHES) criterion interval. QC quality categories

In this SLR, none of the included studies was a “complete” economic evaluation (see Sect. 2.2 ), and therefore items Q12 and Q13 (8 and 7 points, respectively) were not mandatory in any of the included papers. Few scored points for Q12 [ 13 , 14 , 35 , 36 , 37 , 38 ] and only one scored points for Q13 [ 37 ] because it was proposed as a modelling study.

In the case of high scores related to data reporting (Fig. 1 , grey bars), the highest number of studies falling into category QC4 were those in which the study objective was clearly reported (Q1) [reported by all except one study [ 39 ]], followed by those reporting the method of data abstraction (Q7) [reported by all except [ 2 , 39 , 40 , 41 , 42 , 43 ]], those presenting conclusions/recommendations based on study results (Q15) [reported by all except one study [ 44 ]] and those disclosing the source of funding (Q16) [reported by all except [ 1 , 3 , 7 , 35 , 39 , 40 , 42 , 45 ]].

With regard to items relating to study methodology quality (Fig. 1 , blue bars), only one study rated as QC1 (Fig. 3 , red bar), based on the low number of items reported (14). A subgroup analysis (Q4) was mentioned by only three studies [ 46 ], all of which rated as QC3; performance of incremental analysis between alternatives (Q6) was reported only by two studies [ 1 ], which rated as QC3 and QC4, respectively. Item Q4 (1 point) is virtually mandatory in the case of a randomised controlled trial, but few of the included studies were randomised controlled trials. Item Q6 has more weight in the QHES (6 points) and is mandatory in the case of complete economic evaluations, but in the case of cost studies there are no specific suggestions in any guidelines. The highest number of studies reporting items relating to methodology (QC4, Fig. 3 , green bar) were those reporting the source of variable estimates (Q3) [reported in all studies except [ 39 ]]; analytic horizon, outcomes and justification of discount rate (when reported) (Q8) [reported in 37 studies, but not in [ 5 , 15 , 39 , 40 , 42 , 45 ]]; methodology for measurement of costs and estimation of quantities/unit costs (Q9) [reported in 36 studies, but not in [ 2 , 3 , 4 , 39 , 40 , 42 , 43 ]]; primary outcome measure (Q10) [reported in 42 studies, but not in [ 40 ]]; and valid health outcomes measures/scales (Q11) [reported in all studies except [ 39 ]]. In all cases, the QHES score raised as the completeness of reporting in both domains (data report and study quality) increased (Table S6 of the ESM).

3.2 General Characteristics of Studies

The data collected from the selected studies are from the databases created and the patients/caregivers interviewed from April 1993 [ 41 ] to September 2018 [ 47 ]. More than half of the studies (32 [69.77%]) were published from 2010 to 2022.

Most of the studies were conducted in the Americas, mainly in North America (the USA and Canada) [25 (58.14%)], and one in Latin America (Argentina). Seven were conducted in Europe (Finland, Germany, Spain, Italy, Greece and Ireland), four in the UK, four in Asia (India, China and Japan), one in Africa (Ethiopia) and one was multinational (USA, Ireland and the UK). The main characteristics of the included studies are summarised in Table S2 of the ESM.

More than half of the studies presented data on exclusively public healthcare programmes in the Americas, Asia and Europe (28 [65.12%]). Public-private services were mentioned in seven studies from Canada [ 9 , 13 , 15 , 16 , 17 , 18 , 48 ], one from the USA [ 49 ], and one from the UK [ 47 ]; one study did not provide data on the health services provider [ 12 ]. Solely private care was the modality in two studies from the USA [ 2 , 3 ], one from Greece [ 1 ], one from Italy [ 46 ] and one from Ethiopia [ 50 ]. Several studies (27 [62.79%]) reported data on patients receiving in-hospital care combined with different types of ambulatory care, and 37.20% (16 studies) reported mainly ambulatory or home-based care (Table 1 ).

Table 2 describes patients’ and caregivers’ main clinical and sociodemographic characteristics. All the studies included patients with cancer. Twenty-five studies (58.14%) reported cancer as a sole condition in the included patients, and 18 (41.86%) reported data on patients with cancer and patients with other non-oncologic diseases for which PC was provided. Out of all the studies with non-cancer patients requiring PC included as part of the sample, 12 (27.91%) had CHF and COPD, the main non-cancer conditions, and 7 (16.28%) reported dementia/AD. The severity of the conditions and the presence of comorbidities, illnesses unrelated to the one that led to the provision of PC, were also reported (for more details, see Table S2 of the ESM).

The study time frame (follow-up time) was variable, with range from up to a month in ten studies (23.81%) to at least 1 year in 18 studies (41.86%) and more than 2 years in one study [ 35 ]. Seven studies reported several follow-up and cost-measuring periods (i.e. repeated measures, related to the type of data analysis) [ 2 , 5 , 6 , 15 , 44 , 49 , 51 ]. Mean survival time after starting PC was reported in 12 (27.91%) of the studies, and median survival time was reported in seven studies (16.28%); in all cases, it was less than 1 year (Table 2 ).

All papers reported data on the patients’ characteristics, and ten (23.26%) reported data related to caregivers. Patient ethnicity was diverse and reported in nine studies; five were from the USA [ 2 , 3 , 7 , 38 , 52 ], one was from the UK [ 47 ], one was from China (Hong Kong) [ 45 ] and one was multinational (UK, Ireland, USA) [ 6 ]. The caregivers’ ethnicity was not mentioned in any paper.

The clinical professionals in the PC teams assigned to patients were diverse. Some had a specialist physician as a team leader and worked with other physicians, nurses, social workers and other healthcare personnel (e.g. various types of therapists). Others had nurses as team leaders [ 43 ]. There was no homogeneity in the composition of the teams (Table S4 of the ESM).

3.3 Cost Methodology

Thirty-three studies (76.74%) were of costs only, ten (23.26%) were analyses of resource use (three cohort and six descriptive studies) and one used a decision model to estimate costs over longer time horizons [ 37 ] (Table 3 ). The predominant cost methodology was bottom-up (88.37%), and the main study design was retrospective (60.47%). The most common perspective for the analysis was that of the national health system (financer) (53.49%), and direct healthcare costs were the most commonly measured and evaluated costs. The follow-up period was reported in all 43 studies and was up to a year in 33 of them (76.74%).

All studies except for one [ 39 ] reported data on direct healthcare costs, and 12 (27,6%) reported data on direct non-healthcare costs [ 6 , 9 , 13 , 14 , 15 , 16 , 17 , 18 , 47 , 53 , 54 , 55 ]; 12 (27.91%) studies explored direct and indirect costs borne by patients and caregivers; three studies (6.99%) explored patients’ productivity losses [ 12 , 45 , 56 ] and ten (23.26%) caregivers’ productivity losses [ 9 , 12 , 13 , 15 , 16 , 17 , 18 , 45 , 55 , 56 ], all from a societal perspective (Table 3 ). Studies focusing on a societal perspective were mainly prospective.

Data on costs for a 1-year time horizon were collected through questionnaires administered to patients’ caregivers, using the opportunity costs method and collecting data on out-of-pocket expenditures, such as travel expenses, medications needed because of being a caregiver, and time and/or income loss. Only one study [ 17 ] measured the direct healthcare costs for carers. No study conducted a regression analysis to analyse the social and economic factors associated with caregivers’ income losses.

The time horizon and its linked data and discount rate were explicitly reported only in one study [ 57 ]. A regression analysis to define the factors that determine cost drivers was conducted in almost half of the studies (19 [44.19%]); a sensitivity analysis to test the robustness of the final result was conducted in six studies, but only one reported the type of analysis used (deterministic) [ 35 ] [details on regression variables in Table S5 of the ESM].

Twenty studies reported an increase in care intensity and, consequently, an increase in care costs in the end-of-life (EOL) period. Of these, 11 (25.63%) were studies made from the financer perspective (public or private) [ 4 , 5 , 40 , 41 , 42 , 44 , 46 , 48 , 58 , 59 ], seven (16.31%) from the societal perspective [ 12 , 13 , 14 , 15 , 16 , 17 , 55 ] and two (4.66%) from the provider perspective [ 38 , 49 ]. The periods of time of increased care intensity ranged from 1 to 24 months.

Original (primary) data were reported in five studies (11.65%) [ 6 , 17 , 42 , 45 , 55 ]. Data from administrative databases were reported in 26 studies (60.58%), and a mixture of data sources was reported in 12 (27.96%) studies.

Of the five studies that used primary data, one study was conducted from a financer perspective [ 42 ], three studies from a societal perspective [ 17 , 45 , 55 ] and one study did not report the perspective [ 6 ]. Only one study that collected data from administrative data sources applied a societal perspective [ 50 ]; the rest (25 [58.25%]) used a financer or provider perspective.

Of 12 studies conducted from a societal perspective, 11 used a questionnaire to collect data [ 9 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 45 , 55 , 56 ]. Four of those studies used a validated questionnaire to collect data from patients/caregivers (Ambulatory and Home Care Record [AHCR © ]), and those four studies were conducted by the same research team [ 13 , 15 , 16 , 17 ]. Of the remaining studies, three reported using the same non-validated questionnaire [ 9 , 14 , 18 ], and the other mentioned the use of a national-level survey [ 55 ]. In the cases where data were collected from patients/caregivers (13 studies), the questionnaire was administered in a face-to-face scenario in two studies [ 45 , 56 ] and in written form only in one study [ 12 ]. A face-to-face interview and a telephone call was the method in four of the studies [ 9 , 14 , 18 , 55 ] and a phone call only in the remaining four studies [ 13 , 15 , 16 , 17 ]. There were no data related to the interview in one study [ 6 ].

The valuation method for measuring informal care costs (provided by family/caregivers) was the opportunity cost in all ten studies reported; these costs related to diverse caregiving activities (e.g. accompanying patients to appointments, changing dressings, picking up medications [ 17 ]), assisting with basic activities of daily living (personal care, eating and drinking, going to the toilet, mobility indoors) and instrumental activities of daily living (taking medications, household and administrative tasks) [ 55 ]. Direct questions were used to ascertain time spent in most cases [ 9 , 13 , 14 , 15 , 16 , 17 , 18 , 55 ] (Table 3 ).

3.4 Cost Outcomes

The costs during the follow-up period were variable and collected during periods that ranged from 1 to 24 months; some of the costs were measured over several periods for the same patients and caregivers in order to determine unit cost variations (see above, Table 2 ). The most common scenario was the multiple-setting scenario (46.51%), followed by the home-based scenario (30.23%). In six studies (13.95%) in which patients’ care transitioned from in-hospital care to home care, data on costs were collected in both stages. Four studies (9.30%) collected data mainly on the ambulatory use of resources [ 14 , 35 , 47 , 56 ].

Inpatient care (acute hospitalisation and visits to the emergency department) was found to be the main source of billing in 24 studies (55.81%); of those, the use of resources from more than one setting but with a dominance of hospitalisation costs was seen in 15 studies (34.95%) [ 3 , 6 , 12 , 37 , 38 , 41 , 43 , 44 , 48 , 51 , 55 , 57 , 58 , 59 ]. Four studies (9.32%) [ 14 , 35 , 47 , 56 ] reported direct costs covered by patients or unpaid caregivers in mainly ambulatory settings, 12 studies (27.96%) [ 3 , 4 , 13 , 16 , 17 , 18 , 40 , 46 , 49 , 54 , 60 , 61 ] in exclusively home-based settings, and 26 studies (60.58%) in situations where care was provided in the home setting at some point (Table 1 ). Other drivers of resource use worth mentioning were blood transfusion, mentioned in two studies (4.66%) [ 1 , 46 ], and non-quantified volunteer support, mentioned in one study (2.33%) [ 47 ].

Almost half of the studies (20 [46.51%]) included data on the augmented use of resources and costs of healthcare in the EOL period. In 12 studies (27.96%), the main driver was the use of in-hospital resources; in three (6.99%) — conducted from a societal perspective — it was the unpaid workload taken on by caregivers [ 13 , 16 , 17 ]; in the remaining four (9.32%), the drivers varied. The period of more intense use of resources ranged from 1 to 12 months; the proportion of change in the use of resources was highly variable, and ranged from 37% in one study [ 12 ] to 450% in two others [ 13 , 44 ] and more than 600% in one study [ 4 ]. This change was mainly because of hospitalisation. No studies included modelling to estimate costs over longer time horizons.

A regression analysis was conducted in 19 studies (47.5%) to determine the main drivers of costs/expenditures (see Table S5 of the ESM). Because of the distribution of data results, the independent variable was transformed in 13 studies (32.5%). Of the studies analysed with regression models, the most frequently cited cost drivers were hospitalisation/inpatient care, mentioned in ten studies (25%), and costs owing to unpaid caregiving time, mentioned in four studies (10%) [data not shown]. The independent variable used in the models was heterogeneous across studies (Table S5 of the ESM). Only six studies out of 40 included a sensitivity analysis. In all cases, uncertainty was evaluated with a deterministic univariate or multivariate sensitivity analysis.

3.5 Costs Included

Direct healthcare costs covered by the healthcare system were reported in almost all studies (42 [97.67%]). In contrast, direct non-healthcare costs covered by healthcare systems and direct costs covered by the patient were reported in 13 (30.23%) and 12 studies (27.91%), respectively. To manage the heterogeneity of the data reported, the types of costs were assigned to groups according to the setting (outpatient/ambulatory, inpatient, home-based, multiple care settings) and type of disease (cancer and cancer plus other chronic terminal diseases) (Table 4 ). The settings where the productivity losses of patients and caregivers were recorded varied, without any discernible pattern. Almost half of the studies (18 [45%]) included a mix of patients with different diagnoses, some with cancer and others with non-cancer conditions, as the main trigger for initiating ambulatory-based PC.

In the case of studies using a societal perspective (11 [25.58%]), productivity losses for patients were reported in two studies (6.99%) [ 12 , 45 ] and productivity losses of caregivers were reported in nine studies (20.97%) [ 9 , 12 , 13 , 15 , 16 , 17 , 18 , 45 , 55 ]. In terms of patient diagnoses, in the same group of studies conducted from a societal perspective, two studies with cancer as the only condition requiring PC reported productivity losses for patients [ 12 , 45 ]; four studies (9.32%) including both patients with cancer and patients with cancer and other terminal conditions reported productivity losses for caregivers [ 9 , 13 , 18 , 55 ] (Table 4 ).

The reporting of costs by ambulatory-based setting and disease shows that the most common type of cost included was direct healthcare costs (97.67% of studies) (Table 4 ). Data on costs related to productivity losses for patients or their families/caregivers in ambulatory-based settings are lacking. Data related to patients were collected in an inpatient/home setting in two cases [ 12 , 45 ], a home-based setting in two cases [ 16 , 17 ] and an outpatient/ambulatory setting in one case [ 56 ]. Productivity loss for caregivers was reported in nine studies (20.97%), four home-based settings [ 13 , 16 , 17 , 18 ], three in hospital/home settings [ 9 , 15 , 45 ] and two in all possible settings [ 12 , 55 ]; this information was not reported in the exclusively ambulatory setting.

The most commonly included costs are shown in Table 5 . Reported as direct healthcare costs, inpatient care (hospitalisation), physician visits and home care were included in more than 70% of the studies. Physician visits, emergency department visits, medication and nurse visits followed these. Among direct non-healthcare costs, out-of-pocket expenditures and informal spiritual care were the most frequently included and measured costs, followed by professional care at home, medications, private transportation and equipment not covered by the national healthcare system. Patient productivity losses were included far less than caregiver productivity losses. Temporary occupational leave and loss of leisure time were the two most commonly included and quantified costs when the societal perspective was used.

4 Discussion

The current path for PC support is the ambulatory-based setting. Some decades ago, PC services were part of the hospital and hospice setting, and ambulatory or home-based care was considered an exceptional form of service from a logistic point of view. However, patients’ and their caregivers’ medical and social needs have evolved over time, driving a transformation in healthcare systems organisation. To determine the costs and the methodology followed by researchers in these areas to capture data, we proposed an SLR.

To evaluate the methodological quality and transparency of data reporting from the studies included in this SLR, we used the QHES grading system (QC) (Figs. 1 and 3 , Table S3 of the ESM). During the process, because of the scarcity of studies related only to costs in ambulatory/home-based PC, we unanimously decided to include all the studies that passed the second complete examination during the literature search (Fig. 2 ); although several had a low QC score (QC1 [ 39 ] and QC2 [ 2 , 40 , 42 ]), they were not excluded. The score was used not as a criterion for removing studies from the SLR but as a method to determine the thoroughness of each study. Hence, even the four studies with the lowest scores (QC1 [0–25] and QC2 [>25–50]) were reviewed and their data were included.

In the final analysis, only one study had very low scores (2.33%) and three studies had low scores (2.33%); a majority had high scores (QC3 [79.07%]) and very high scores (QC4 [11.63%]). This was interpreted as evidence that, even with failings, the quality of cost studies is high, although it could be better. When we looked at which QC domain — reporting of data or study of methodological quality — determined the change in scores among the studies, we found that both contributed: scores were higher as the number of items related to reporting and those related to methodology increased (Table S6 of the ESM). We did not find any pattern that would explain a low or high result related to the QC score as a whole.

Other SLRs on PC costs, including both complete and incomplete economic evaluations, have been published in recent decades. We double checked that all studies included in the four SLRs identified were found in our study. No previous SLR has been conducted specifically on the costs of PC.

Gomes et al. [ 62 ] published a Cochrane review of 23 studies (from 1978 to 2012) on the effectiveness and cost effectiveness of home PC services, but not specifically on cost data. The results provide evidence of the effectiveness of home-based PC in terms of increasing the patient’s chance of dying at home and reducing the symptom burden for patients, but no significant impact on the caregiver’s grief. Results related to cost effectiveness were not precise, especially in relation to non-oncologic conditions. Data on the effect on (only) the costs of home-based PC, as opposed to usual care, indicated lower expenses in the home-based PC groups, except in one study from 1986, Greer et al. [ 38 ]. However, the differences in costs were statistically significant in just one study (also included in this SLR [Brumley et al. [ 2 ]]). Gomes et al. do not report more data on significant differences in costs that would enable us to compare our results with theirs.

In 2017, Gardiner et al. [ 63 ] published an SLR (1995–2015) whose results proposed the relevant cost components for economic evaluations on PC and approaches for measuring these costs. The paper suggested a framework for determining PC costs rather than describing cost results. This article was identified by our SLR, but was discarded because it failed to meet the inclusion criteria. However, it could help to define some domains and items for the forthcoming questionnaire for cost collection that will follow this publication.

Yadav et al. [ 64 ] published an SLR on healthcare costs for patients with cancer, including 16 studies conducted in the USA between 2008 and 2018. They reported costs in different scenarios (inpatient-based, outpatient/inpatient, home-based and multiple settings) and concluded that the provision of PC after a cancer diagnosis is a cost-saving strategy for the healthcare system, especially when comparing inpatient and outpatient strategies. They report that a home-based approach can save on hospital costs, but there were no data on savings with respect to non-hospital costs. In contrast to this SLR, we have stated the perspective adopted by cost studies, extended the number of years included in the SLR and included studies from around the world. Similarly to our review, the Yadav et al. review concluded that the healthcare system can save money when promoting home-based PC.

Gonzalez-Jaramillo et al. [ 65 ] published an SLR that calculated the effectiveness of home-based PC in terms of reducing hospital visits and whether home-based care lowered healthcare costs. They concluded that in patients with cancer and non-cancer patients, home-based PC consistently reduced the number of hospital visits and their length, as well as hospitalisation and overall healthcare costs, findings that reinforced our results. The authors mention that the higher costs of outpatient care are offset by the hospital expenses saved. However, as in the case of Yadav et al., the authors do not specify the perspective used in collecting cost data or the amount of expenses transferred from the healthcare system to the patient and family/caregivers.

Currently, ambulatory and home-based care are frequently used daily services. However, they are not used independently from hospitalisation. Outpatient (or ambulatory) and home-based care can be used as the primary setting, but will always be shared with hospitalisation periods. We found that the delivery of ambulatory services is not uniform; only three studies reported mainly ambulatory services: first, a modelling study to explore the use of resources from the beginning of a strong opioid prescription (EOL) [ 35 ]; second, a study collecting data on patients in EOL care in urban areas of Canada [ 14 ]; and third, a study exploring PC day services in England, Scotland and Northern Ireland [ 47 ]. The rest of the studies concerned patients being treated with a predominantly ambulatory care model and variations of admittance to hospital, emergency department or hospice if needed. More than half of the studies referred to costs related to hospitalisation services as the main cost driver (24 studies [55.81%]). Thus, most of the resources used for ambulatory management of patients are linked to hospital care at some point, a finding that supports our previous statement. Our findings also highlight the fact that the ambulatory approach needs to be integrated or coordinated with other healthcare system levels [ 13 , 16 , 17 ] and support the proposal of classifying ambulatory and home-based PC settings under the ambulatory-based PC label, which we considered more precise.

Ambulatory-based PC services are increasing in PC practice for several reasons. The first is requests from patients who prefer to die at home [ 62 ]. Such requests have prompted healthcare systems to change and align their outcomes with those of patients [ 66 , 67 ], offering ambulatory and home-based PC when possible.

The second reason is the limited number and the high cost of hospital beds available in hospital acute-care settings for patients with chronic cancer and non-cancer conditions when they move from active treatment to PC [ 68 ]. These beds are mostly needed by acute patients who require inpatient care. Still, even when patients are in better condition and are able to return home, they are considered to have been transferred to home-based hospitalisation and are still regarded as inpatients. These clinical decisions are supported by studies that report home-based care as a safe and good practice with adequate clinical outcomes and lower costs [ 13 , 69 ]. Similar studies of ambulatory-based PC are lacking.

The third and no less important reason is billing. The ambulatory approach has been used broadly in elective surgery scenarios. Large studies of acute ambulatory surgery programmes reveal fewer expenses after medium- and high-complexity surgical procedures (e.g. hernia repair, laparoscopic cholecystectomy, laparoscopic appendicectomy, thyroidectomy, total shoulder, hip or knee replacement) [ 70 , 71 ]. Even some acute medical situations (e.g. pneumonia) can be stabilised during a short inpatient stay, after which the patient is sent home to continue and finish treatment [ 72 ]. Because of their short duration, these acute services are provided by paid healthcare personnel who assist the patient at home, allowing both the patient and family to be well assisted [ 16 , 17 ], a similar approach to PC.

For the reasons mentioned above, ambulatory PC services are being implemented in various healthcare systems worldwide [ 68 ]. These PC programmes complement, rather than replace, classical hospital or hospice-based PC services, with excellent economic results from the point of view of healthcare providers: it is far less expensive to deliver this EOL care modality to the patient at home rather than at the hospital. However, what needs to be recognised is that when a PC patient is moved to home-based management, the burden and most of the costs are transferred to patients and their caregivers/families. The indirect costs of productivity loss, out-of-pocket expenditures, loss of leisure time and burn-out of caregivers, for example, are not currently being quantified. Conceptually, ambulatory PC represents a shift of the economic burden from the provider to the patient without substantial support from health systems for patients’ families [ 9 , 12 , 13 , 14 , 18 , 51 , 64 ]. This shifting leaves out of the equation the non-tangible healthcare costs transferred to the family, in particular the contribution made by caregivers [ 12 , 13 , 64 ].

In the inclusion criteria, we proposed to include studies involving patients with breast, colon and pulmonary malignancies, CHF and COPD. These criteria were based on disease prevalence [ 20 , 73 ]. However, during the screening, we detected two studies conducted with a different sample — patients with haematological neoplasms [ 1 , 46 ]. We included them in the review to explore the cost approach in these oncologic conditions. We saw that ambulatory PC for these patients was based mainly on transfusions, and the reports barely mentioned the role of caregivers [ 38 ] or the burden that the care of patients implies. We also found more studies than expected that reported data on the costs of PC for patients with dementia/AD, and although the PC path was not very clear in those reports, we decided to mention them and examine and include their data [ 4 , 8 , 41 , 46 , 58 , 59 , 69 ] (Table 4 ). What we found reveals that the organisation and the delivery of PC may differ depending on the disease; we also found that our inclusion criteria and the diseases considered may have been too narrow and may have limited our results, making it difficult to extrapolate them. Still, the funnel approach is necessary to deepen the data and to provide more specific results.

The included studies reported cost results using heterogeneous outcome/measure units such as overall cost, mean cost, cost per patient, total cost, average cost and cost per week. Lack of transparency in calculating the different costs and the definition of some types of costs did not facilitate pooling or quantitative summarisation of cost data or the development of a meta-analysis (not a primary aim of this SLR). We suspected this would be the case, based on other studies that mentioned the wide variety of reporting unit costs. Moreover, the appropriate unit for measuring PC in the early stages of cancer or in the case of non-oncological conditions could be annual cost, but as soon as the patients’ health status changes because of the disease’s progression, a more appropriate unit would probably be monthly or weekly costs. Better data pooling and perhaps a meta-analysis could be conducted in the future if more homogeneous methods of reporting unit cost results/outcomes are developed [ 74 ].

The follow-up time was variable and diverse, and ranged from less than a month to more than a year, and in some studies, several time periods were examined [ 2 , 5 , 15 , 37 , 41 ]. We did not find any relationship between follow-up time and diagnosis in the included studies, nor were the criteria for deciding the follow-up time clear in most of them, although there were seven studies that planned a repeated-measures analysis [ 2 , 5 , 15 , 37 , 41 , 42 ].

The follow-up time has cost consequences. Clinically, survival rates of patients with non-cancer conditions included in a PC programme are higher than those of patients with cancer receiving the same PC modality. However, all the evidence in terms of the economic burden or costs of PC patients has been calculated by averaging data on patients with non-cancer diagnoses with those of patients with cancer, and no independent estimations linked to the condition that triggers the PC have been done as yet.

Patients with end-stage COPD, CHF or AD can experience acute episodes of deterioration of their condition, but in most cases, treatment of such deterioration can rapidly ameliorate patients’ health status. Such an outcome is not frequently seen in patients with cancer, in which a severe deterioration in their clinical condition, once the last line of oncological treatment has been completed, invariably progresses to the patients’ death. Thus, the survival expectancy that would define a follow-up time can vary from a few weeks in terminal lung or breast cancer to several years in the case of CHF, COPD or AD.

Calculating a mean or average cost for PC patients and combining patients with a cancer diagnosis and patients with a non-cancer diagnosis is probably an inaccurate method to obtain cost data because of the different evolutions of illnesses requiring PC and the differences in survival rates. The scarcity of cost studies relating exclusively to PC in non-cancer patients, comparing the costs of PC programmes for patients with these different conditions, is remarkable (the initial search included only one complete economic evaluation on CHF [ 75 ], which was excluded because it failed to meet the inclusion criteria). There is therefore an urgent need for such studies.

From the cost perspective, we could not find clarity related to the time horizons used for the cost calculations. All studies reported a follow-up period, but the time horizon was not explicitly mentioned. These two points should be kept in mind when planning future research, and both a follow-up time in relation to the clinical outcome and a time horizon concerning cost calculation should be defined. New approaches might have to be created to consolidate PC costs, as suggested by other authors concerning quality-adjusted life-years in a cost-utility analysis for PC [ 74 ].

Nineteen studies reported increased use of resources during the EOL period. Among these studies, the main source of augmented costs was inpatient care in studies made from a health system perspective (52%) [ 5 , 34 , 36 , 38 , 41 , 44 , 54 , 55 , 56 , 57 ]. When studies were made from a societal perspective, the outcome was not too different; in more than half of such studies, the increase in the use of resources was owing to inpatient care provided at some point [ 12 , 14 , 15 , 51 ] and in the rest it was related to care provided by unpaid caregivers [ 13 , 16 , 17 ]. This finding confirms what we previously pointed out: hospitalisation is the main driver of patients’ care costs, even in ambulatory-based PC [ 9 , 12 , 14 , 15 , 18 , 45 , 51 ].

Most cost studies that have applied a healthcare system perspective have concluded that using ambulatory PC services as an alternative to hospital-based care diminishes costs for the healthcare system and, therefore, is an efficient alternative. In contrast, all studies applying a societal perspective reveal that ambulatory services are costlier and less efficient than inpatient hospital care [ 9 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 39 , 45 , 51 , 52 ]. The economic burden borne by family and informal caregivers is explained by the unpaid costs of productivity and leisure time loss. Thus, although the societal perspective entails challenges in terms of approaching patients and caregivers, it should be considered the ideal for evaluating PC services in an ambulatory-based setting (i.e. one that combines hospitalisation and any type of ambulatory care) in order to include economic impacts that are frequently not considered in PC cost studies but that are relevant from an efficiency point of view [ 13 , 16 , 17 ].

This SLR identified the most common costs related to ambulatory-based PC for patients with cancer or non-cancer terminal illnesses. Direct healthcare costs in home-based or multiple care settings have been those most analysed and evaluated, inpatient care (hospitalisation), physician visits and home care being the most common costs included to measure the economic burden of PC. It is worrying that little evidence exists regarding productivity losses for patients receiving PC and their family members or caregivers, especially for patients in an outpatient/ambulatory setting.

The need for ambulatory PC is clear. It is desired by both patients and the healthcare system, and the changing scenario of healthcare makes it possible to provide PC in an ambulatory setting. However, adequate implementation of ambulatory PC has a cost that the healthcare system should bear in partnership with society, and society should receive support for being part of the healthcare team [ 14 , 15 , 18 ].

5 Conclusions

This SLR reveals that studies on the costs of ambulatory PC are increasing. These studies are mostly conducted from a healthcare system perspective, which leaves out costs related to patients’/caregivers’ economic burden; these costs are mainly driven by productivity and leisure time losses. The available evidence shows a lack of studies that measure and evaluate average patient and caregiver expenses, and there is therefore a need for better evidence on the scale and patterns of costs.

Future studies should preferentially propose cost calculation approaches using societal and patient perspectives to better estimate the economic burden imposed on patients and caregivers in ambulatory-based PC. There is a need for prospective studies to calculate this financial burden more precisely and evaluate, with better quality evidence, interventions and actions designed to improve the quality of life of PC patients. Based on the evidence found, productivity losses for PC patients and their carers have been the least studied cost impact, so future research should endeavour to measure and economically quantify such losses.

The results reported in this SLR should serve as guidance for future cost collection studies and questionnaires in ambulatory-based settings from any perspective, but especially those designed to measure and evaluate the costs from a societal perspective, including the carer’s economic burden. The methodology should include a clear plan for collecting administrative data based on its primary structure and organisation and a well-structured, respectful and comprehensive approach to the collection of data from patients and caregivers. An effort to standardise a methodology would be desirable in order to produce more homogeneous biomedical literature on this subject.

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Perea-Bello, A.H., Trapero-Bertran, M. & Dürsteler, C. Palliative Care Costs in Different Ambulatory-Based Settings: A Systematic Review. PharmacoEconomics 42 , 301–318 (2024). https://doi.org/10.1007/s40273-023-01336-w

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Published on 8.4.2024 in Vol 12 (2024)

Effects of Telemedicine on Informal Caregivers of Patients in Palliative Care: Systematic Review and Meta-Analysis

Authors of this article:

• Xiaoyu Yang 1 , BSN ; 
• Xueting Li 2 , BSN ; 
• Shanshan Jiang 2 , BSN ; 
• Xinying Yu 3 , MSN

1 Department of Oncology, Shengjing Hospital of China Medical University, , Shenyang, , China

2 College of Nursing, China Medical University, , Shenyang, , China

3 Department of Pediatrics, Shengjing Hospital of China Medical University, , Shenyang, , China

Corresponding Author:

Xinying Yu, MSN

Background: Telemedicine technology is a rapidly developing field that shows immense potential for improving medical services. In palliative care, informal caregivers assume the primary responsibility in patient care and often face challenges such as increased physical and mental stress and declining health. In such cases, telemedicine interventions can provide support and improve their health outcomes. However, research findings regarding the use of telemedicine among informal caregivers are controversial, and the efficacy of telemedicine remains unclear.

Objective: This study aimed to evaluate the impacts of telemedicine on the burden, anxiety, depression, and quality of life of informal caregivers of patients in palliative care.

Methods: A systematic literature search was conducted using the PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP databases to identify relevant randomized controlled trials published from inception to March 2023. Two authors independently screened the studies and extracted the relevant information. The methodological quality of the included studies was assessed using the Cochrane risk-of-bias tool. Intervention effects were estimated and sensitivity analysis was conducted using Review Manager 5.4, whereas 95% prediction intervals (PIs) were calculated using R (version 4.3.2) and RStudio.

Results: A total of 9 randomized controlled trials were included in this study. The meta-analysis indicated that telemedicine has reduced the caregiving burden (standardized mean differences [SMD] −0.49, 95% CI −0.72 to −0.27; P <.001; 95% PI −0.86 to −0.13) and anxiety (SMD −0.23, 95% CI −0.40 to −0.06; P =.009; 95% PI −0.98 to 0.39) of informal caregivers; however, it did not affect depression (SMD −0.21, 95% CI −0.47 to 0.05; P =.11; 95% PI −0.94 to 0.51) or quality of life (SMD 0.35, 95% CI −0.20 to 0.89; P =.21; 95% PI −2.15 to 2.85).

Conclusions: Although telemedicine can alleviate the caregiving burden and anxiety of informal caregivers, it does not significantly reduce depression or improve their quality of life. Further high-quality, large-sample studies are needed to validate the effects of telemedicine. Furthermore, personalized intervention programs based on theoretical foundations are required to support caregivers.

Trial Registration: PROSPERO CRD42023415688; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=415688

Introduction

With the continued increase in the number of individuals with multiple and severe diseases, the global demand for palliative care services is also growing [ 1 ]. Given that most patients who require palliative care prefer to spend time at home and receive the necessary care [ 2 - 4 ], informal caregivers play a crucial role in caring for patients. However, the cumbersome and complex care tasks may have negative impacts on their physical, psychological, and social well-being [ 5 - 7 ]. In recent years, telemedicine, as an emerging technology, has been increasingly used in home care [ 2 ], benefiting informal caregivers [ 8 , 9 ]. It may serve as a pathway to support informal caregivers of patients in palliative care, improve their health outcomes, and thus enhance the quality of palliative care [ 10 ].

The World Health Organization estimates that 56.8 million people require palliative care yearly [ 11 ]. However, there is a prevailing shortage of professional palliative care personnel, and the majority of patients prefer to receive such care at home [ 2 - 4 ]. Hence, informal caregivers, usually family members or friends, assume the primary responsibility for patient care. In doing so, they adapt to changes in their role, family, and social life to provide long-term, unpaid care for patients [ 12 , 13 ]. Informal caregivers frequently lack professional training [ 4 ]. Thus, they face unmet supportive care needs, such as symptom management, psychological counseling, and social support [ 4 , 13 ], and experience anxiety, depression, physical overload, and a decline in the quality of life (QOL) [ 5 - 7 ]. Studies reveal that the state of informal caregivers and the condition of the patients mutually affect each other. The quality of care provided by caregivers in poor condition can be diminished, exacerbating the patient’s condition. In turn, the patient’s worsening condition can negatively affect informal caregivers [ 7 , 14 , 15 ]. Therefore, the demand to assist informal caregivers and address their physiological, psychological, and social health needs is urgent.

With the development of the information age, telemedicine has demonstrated tremendous potential in providing health care. Telemedicine refers to the use of information and communication technologies to facilitate communication between patients and health care workers for the assessment, diagnosis, treatment, and prevention of diseases, thereby improving patient health [ 16 ]. As a personalized medical approach, telemedicine overcomes the conventional care constraints of time and space; facilitates remote treatment, supervision, education, and care services; and promotes the rational distribution and refinement of medical resources [ 17 ]. Telemedicine has been widely applied in medical fields such as diabetes, chronic wounds, and cardiovascular diseases [ 18 , 19 ], benefiting patients and improving the health outcomes of informal caregivers [ 8 , 9 ].

In recent years, telemedicine has also provided novel ideas to guide palliative care [ 20 ]. In the field of palliative care, an increasing number of informal caregivers are opting to provide home care for patients who require palliative care [ 21 ]. Telemedicine facilitates real-time communication between professionals and family caregivers. This promotes information sharing; assists in the patient’s symptom management; and helps in providing health education, psychological counseling, and social support [ 22 ]. However, the outcomes of using telemedicine with informal caregivers are controversial. For example, a randomized controlled trial (RCT) by Chen et al [ 23 ] indicated that telemedicine could alleviate caregiving burden and enhance the QOL of informal caregivers. However, Dionne-Odom et al [ 24 ] found no significant difference between the telemedicine and control groups in terms of improvements in informal caregivers’ QOL, burden, or emotional state. Of the few available systematic reviews, most provide a descriptive summary of results without performing a meta-analysis to quantify the outcomes of the studies [ 25 - 27 ]. Thus, the intervention effects of telemedicine remain unclear.

Given the limitations of previous reviews, we conducted a systematic review and meta-analysis. We summarized articles on the intervention effects of telemedicine among the informal caregivers of patients in palliative care, focusing on 4 health outcomes: caregiver burden, anxiety, depression, and QOL. This provides a reference for the clinical practice of telemedicine. This is the first systematic review and meta-analysis to verify the effects of telemedicine on the outcomes for informal caregivers of patients in palliative care.

This systematic review adhered to the guidelines in the 2020 PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) checklist [ 28 ] ( Checklist 1 ). In addition, it was registered on PROSPERO (CRD42023415688).

Ethical Considerations

As all data used were obtained from previously published articles, this research did not require ethical approval from an institutional review board or informed consent from participants.

Search Strategy

A literature search was conducted in 10 electronic databases (PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP) for publications dating from the establishment of each database until March 31, 2023. Following the Population, Intervention, Comparison, Outcome, and Study design principles, the searches in this systematic review were performed using Medical Subject Headings, the title or abstract, and keywords, as well as Boolean logical operations. Multimedia Appendix 1 describes the search strategy for all databases. In addition, relevant systematic reviews and references were manually screened to identify additional eligible studies.

Study Eligibility Criteria

The inclusion criteria were as follows. (1) The study population was informal adult caregivers (aged ≥18 y) caring for patients receiving palliative care for severe diseases (eg, advanced stage, incurable “stage 4” diseases). (2) Intervention measures were being provided through the internet, applications, telephone, video, or other telemedicine technologies. (3) The control group received usual care or enhanced usual care or was on a waiting list. (4) The study reported outcomes for informal caregivers focusing on 1 or more of the following aspects: caregiver burden, anxiety, depression, or QOL. (5) The study was designed as an RCT. (6) The article was published in English or Chinese.

The exclusion criteria were as follows. (1) The publications were qualitative research, conference abstracts, letters, comments, reviews, or protocols. (2) Patients were underage (aged <18 y), or palliative care indications were unrelated to life-limiting diseases (eg, chronic diseases or nonmalignant pain). (3) Interventions were not being targeted at informal caregivers. (4) The full-text article or relevant data were not accessible.

Study Selection and Data Extraction

The titles and abstracts of the retrieved literature were first downloaded and imported into Endnote X9 (Clarivate; a reference management program) to remove duplicates. Two evaluators then independently screened the studies based on the inclusion and exclusion criteria. Any disagreements were resolved through consultation or discussion with a third researcher. Data were extracted through a predesigned table, including the name of the first author, year of publication, country, age of the caregiver, sample size, type of disease diagnosed in the patient, type and content of intervention measures, study duration, and time of the outcome assessment.

Quality Assessment

Two evaluators independently assessed the methodological quality of the included studies using the Cochrane Collaboration’s tool for assessing the risk of bias [ 29 ]. Seven aspects were evaluated: (1) random sequence generation, (2) allocation concealment, (3) blinding of participants and personnel, (4) blinding of outcome assessment, (5) incomplete outcome data, (6) selective reporting, and (7) other biases. Each study was categorized as “low risk,” “uncertain risk,” or “high risk,” with disagreements resolved through consultation or discussion with a third researcher.

Data Analysis

For studies with multiple measurements, only data from the last measurement were extracted for analysis. SDs were calculated according to the Cochrane Handbook for Systematic Reviews of Interventions if not reported [ 29 ]. If required data were not reported, we contacted the first authors of the relevant publication. Heterogeneity testing and the meta-analysis were conducted using Review Manager 5.4 (The Cochrane Collaboration). Intervention effects were estimated through standardized mean differences (SMDs) and 95% CIs, and forest plots were generated. A 2-sided P value <.05 was considered statistically significant. Heterogeneity was evaluated using the χ 2 test (with P <.10 indicating heterogeneity) and I 2 test (with I 2 >50% indicating moderate heterogeneity and I 2 >75% indicating high heterogeneity). If I 2 ≤50% and P >.10, a fixed-effect model was adopted for data merging and analysis; otherwise, a random-effects model was used. A sensitivity analysis was conducted using a one-study-out method to evaluate the robustness of the combined results. In addition, 95% prediction intervals (PIs) were calculated using R (version 4.3.2; R Foundation for Statistical Computing) and RStudio (Posit) to explain the heterogeneity across studies and estimate the true effects in similar future studies [ 30 ].

Search Results and Selection

A preliminary search of the electronic databases yielded 5456 articles: 254 in Chinese and 5202 in English. After removing 1733 duplicated articles, an additional 3669 unrelated articles were excluded after evaluating their titles and abstracts, leaving 54 articles for the full-text review. From these, 8 articles were included, and with the addition of 1 more article, 9 studies were ultimately included in the meta-analysis. The screening process is detailed in Figure 1 [ 28 ].

Characteristics of the Included Studies

Study characteristics.

Multimedia Appendix 2 [ 23 , 24 , 31 - 37 ] summarizes the main characteristics of the included studies. These studies were all RCTs published in 3 countries between 2015 and 2023: a total of 6 from the United States, 1 from the Netherlands, and 2 from China. Four studies mentioned the theoretical or conceptual framework of the intervention, including Erikson’s psychosocial development theory and Bowen’s family system theory [ 23 ], self-determination theory [ 31 ], shared decision-making [ 33 ], and cognitive behavioral stress management [ 35 ].

Characteristics of Informal Caregivers

The studies involved 1215 informal caregivers, with the number of participants in each study ranging from 35 to 334. The average age of the informal caregivers ranged from 45.71 (SD 11.85) to 60.1 (SD 12.5) years, and they were predominantly patients’ parents, spouses or partners, and children. The types of diseases of the patient included advanced cancer, advanced heart failure, and advanced dementia.

Characteristics of Telemedicine Interventions

Telemedicine was practiced via websites, web conferences, applications, or the telephone, but primarily through websites and the telephone. A total of 4 studies provided interventions through a website. Oliver et al [ 33 ] performed a 3-arm clinical trial, where 1 group received an intervention via Facebook, which offered education and social support to informal caregivers, whereas a separate group received the ACCESS intervention. Here, in addition to the Facebook-based intervention, web conferences were incorporated to facilitate the engagement of informal caregivers in joint decision-making in palliative care. The project aimed to alleviate informal family caregivers’ anxiety and depression. Pensak et al [ 35 ] implemented a 12-week intervention named Pep-Pal, which provided stress management support to informal caregivers of patients with advanced cancer via a website. The intervention program of Parker Oliver et al [ 34 ], ACTIVE, used web conferences or telephone calls to link informal caregivers to end-of-life care teams to improve caregivers’ perceptions of pain management. Similarly, Fu et al [ 37 ] established real-time communication between medical staff and family caregivers of patients with advanced cancer via an internet platform to provide relevant health guidance. Furthermore, 2 studies provided intervention through an application. Schuit et al [ 36 ] developed a program called Oncokompas to provide personalized information, suggestions, and supportive care solutions tailored to the caregiver’s situation. Chen et al [ 23 ] created a dyadic life review program for patients with advanced cancer and their caregivers using WeChat software to promote their QOL. In addition, 3 studies offered interventions via the telephone. Dionne-Odom et al [ 24 ] implemented a telephone intervention program named ENABLE CHF-PC, which offered psychological and problem-solving support for patients with heart failure in palliative care and their caregivers to improve their emotions, burden, and QOL. Two years later, Dionne-Odom et al [ 32 ] performed a similar intervention for patients with advanced cancer and their caregivers. Finally, Badr et al [ 31 ] provided a telephonic psychosocial intervention to enhance the QOL of patients with advanced cancer and their caregivers.

Characteristics of Controls

The control group in 1 study received enhanced usual care [ 33 ], whereas those in the remaining studies received usual care. Furthermore, in the study by Schuit et al [ 36 ], informal caregivers in the control group were allowed to use telemedicine equipment after the research ended.

Risk of Bias

A quality assessment of the included studies was conducted using the Cochrane risk-of-bias tool. Although most studies (6/9, 67%) reported using randomization, some did not detail allocation concealment, potentially leading to selection bias. Only 2 studies were determined as having a low risk of implementation bias owing to the challenge of blinding researchers and participants in telemedicine intervention trials [ 24 , 32 ]. Approximately half (4/9, 45%) the studies blinded the outcome assessors, and thus, their risk of measurement bias was classified as low. Three studies were determined to have a high risk of attrition bias due to elevated loss to follow-up rates or a lack of appropriate data processing methods [ 32 , 35 , 37 ]. However, no selective reporting bias was detected in the included studies. Four studies were categorized as having a high risk of other biases due to baseline differences [ 24 , 34 ] and small sample sizes [ 31 , 32 ]. The results are shown in Figure 2 .

Meta-Analysis

Caregiver burden.

A total of 5 studies that evaluated caregiver burden were included in the meta-analysis [ 23 , 31 , 35 - 37 ]. Since no significant heterogeneity was observed among the included studies ( I 2 =0%; P =.64), a fixed-effect model was used for merging the data. The results revealed that telemedicine intervention could mitigate the burden on informal caregivers (SMD −0.49, 95% CI −0.72 to −0.27; P <.001; 95% PI −0.86 to −0.13), as shown in Figure 3A . The sensitivity analysis showed that the results were stable, as shown in Figure 4A . The results remained unchanged when studies were merged using a random-effects model.

A total of 5 studies assessed the anxiety level of informal caregivers [ 24 , 31 , 32 , 34 , 35 ]. Due to mild heterogeneity among the included studies ( I 2 =43%; P =.14), a fixed-effect model was adopted to pool the data for analysis. The results demonstrated that telemedicine intervention could reduce informal caregivers’ level of anxiety (SMD −0.23, 95% CI −0.40 to −0.06; P =.009; 95% PI −0.98 to 0.39), as shown in Figure 3B . The sensitivity analysis showed that after excluding Badr et al [ 31 ], the pooled results were the opposite, with I 2 decreasing to 0%, as shown in Figure 4B . This could be attributed to a higher risk of bias in this study. However, when merging studies using a random-effects model, the results still retained statistical significance (SMD −0.30, 95% CI −0.57 to −0.03; P =.03).

A total of 5 studies assessed the depression level of informal caregivers [ 24 , 31 - 33 , 35 ]. In the study by Oliver et al [ 33 ], “a” represents the ACCESS intervention and “b” represents the Facebook intervention. Due to moderate heterogeneity among the included studies ( I 2 =51%; P =.07), a random-effects model was used for merging the data. The analysis indicated that the telemedicine intervention did not result in a statistically significant difference in reducing depression among informal caregivers (SMD −0.21, 95% CI −0.47 to 0.05; P =.11; 95% PI −0.94 to 0.51), as shown in Figure 3C . Furthermore, the sensitivity analysis showed that no individual trial could change the results. However, after excluding Badr et al [ 31 ], the I 2 decreased to 0%, as shown in Figure 4C .

QOL of Caregivers

A total of 4 studies that assessed QOL were included in the meta-analysis [ 23 , 24 , 32 , 36 ]. Due to moderate heterogeneity among the studies ( I 2 =73%; P =.01), a random-effects model was used. The results indicated that the telemedicine intervention did not result in a statistically significant difference in improving the overall QOL of informal caregivers (SMD 0.35, 95% CI −0.20 to 0.89; P =.21; 95% PI −2.15 to 2.85), as shown in Figure 3D . Furthermore, the sensitivity analysis indicated that no individual trial could change the results. However, after excluding Chen et al [ 23 ], the I 2 decreased to 0%, as shown in Figure 4D .

Principal Findings

The results of this review indicate that compared to conventional care, telemedicine interventions can alleviate the caregiving burden and anxiety of informal caregivers; however, they do not significantly alleviate depression or improve their QOL. The 95% PIs indicate considerable heterogeneity among the studies, and the effects of future telemedicine interventions on these outcomes remain uncertain, except for reducing caregiver burden.

The results of the study demonstrated that telemedicine interventions could relieve the caregiving burden of informal caregivers, which is consistent with previous research [ 9 , 12 , 31 ]. The systematic review by Hu et al [ 9 ] demonstrates that internet-based interventions can effectively alleviate the stress of informal caregivers of patients with chronic diseases and improve their well-being. Chih et al [ 38 ] developed the Comprehensive Health Enhancement Support System for informal caregivers of patients with advanced cancer. The tool reduced the negative emotions of family caregivers and subsequently decreased their caregiving burden. Caregiver burden consists of both subjective and objective levels. Subjective burden includes the perceived physical, emotional, social, and economic difficulties caused by caring for individuals with serious diseases, whereas objective burden refers to the time and number of tasks devoted to patient care [ 39 ]. Telemedicine facilitates health education, assists in decision-making, helps develop problem-solving skills, and provides social support. It also improves and conserves the resources and time of informal caregivers. Thus, it is conducive to alleviating the caregiving burden at both the subjective and objective levels.

The results revealed that telemedicine interventions can alleviate anxiety in informal caregivers, which is consistent with the findings of previous research [ 8 , 27 ]. Research indicates that the likelihood of anxiety occurring in caregivers of patients with advanced cancer is 3 times that of the general population [ 40 ]. Here, factors such as overwhelming nursing pressure, inadequate self-care, and the lack of supportive care can lead to anxiety [ 41 , 42 ]. Currently, the proposed interventions to reduce the anxiety of informal caregivers focus on psychological education, skill training, and treatment counseling [ 43 ]. In this case, telemedicine enables monitoring, assessing, and managing patient symptoms, which can enhance informal caregivers’ symptom management skills [ 1 , 37 ]. Moreover, it allows them to join discussions on the disease and participate in clinical decisions [ 20 , 33 , 44 ]. This can help satisfy informal caregivers’ information needs and enhance their caregiving confidence and ability. In addition, telemedicine can provide psychological interventions, improve interpersonal relationships, and offer training in stress management skills [ 31 , 32 ], thereby alleviating symptoms of anxiety. However, the sensitivity analysis indicated that the result was unstable. To ensure greater stability, it will be necessary to gather additional data for further investigation.

The results of our research indicate that telemedicine does not have a statistically significant effect on alleviating depression among caregivers, which is consistent with the findings of previous research [ 45 ]. In addition to influencing factors such as the high nursing stress and insufficient social support observed for anxiety, an increased economic burden may also contribute to the onset of depression [ 42 , 46 ]. Despite its potential advantages, telemedicine requires a stable internet connection and available electronic devices. The initial investment cost of such equipment may negatively affect informal caregivers [ 47 ]. Furthermore, researchers only offered counseling on disease knowledge and mental and emotional well-being, but not economic and welfare support. Subsequently, factors including a lower baseline depression level in the study population [ 24 ], small sample size, and significant differences in intervention measures in various studies may negatively impact the combined results. These findings differ from those of Northouse et al [ 48 ], possibly due to variations in the target population. The study by Northouse et al [ 48 ] focused on informal caregivers of patients with cancer. In contrast, our research noted higher loss to follow-up rates in the population with advanced diseases, potentially impeding the discovery of beneficial outcomes. Moreover, Northouse et al [ 48 ] conducted a self-controlled study, whereas we included RCTs in which conventional palliative care can alleviate depression in informal caregivers [ 46 ]. Consequently, the extent to which telemedicine can improve depression is limited.

Quality of Life

This study found that telemedicine does not significantly improve the QOL of informal caregivers of patients in palliative care, which is consistent with the findings of earlier research [ 25 , 49 ]. Most informal caregivers consistently place the needs of patients above their own [ 50 ], leading to various unmet supportive care needs, such as physical, psychological, and social needs [ 6 , 51 ], and a subsequent decline in QOL. As QOL is a multidimensional construct, a multidisciplinary intervention is often more effective than single-faceted approaches. However, the majority of studies (3/4, 75%) in this review targeted interventions at the social-psychological level, and the results might not be ideal. Furthermore, the small sample sizes in the included studies and variations in intervention measures may have limited the possibility of revealing meaningful results. Finally, the effectiveness of intervention measures may further be moderated by other factors such as the characteristics of informal caregivers, preexisting mental health issues, and the caregiver-patient relationship. Therefore, future efforts should aim to devise personalized interventions for specific informal caregiver populations to ensure the best possible support.

Strengths and Limitations

This study meticulously adhered to the systematic review writing process, developed a comprehensive search strategy, and selected appropriate methods for meta-analysis. To enhance the reliability of the results, only RCT studies were included. However, this review also had limitations. First, we only included available data for the analysis. Missing data may impact the combined results of the meta-analysis. Second, some included studies, especially pilot studies, have small sample sizes, which requires a cautious approach to generalizing the results. Third, the inclusion of only English- and Chinese-language articles may lead to publication bias. Last, the included studies all measured the results immediately after intervention, without evaluating the persistence of the intervention effect. Therefore, in the future, large samples and high-quality research are required to further validate the intervention effects of telemedicine and explore the most suitable intervention duration for informal caregivers.

Implications for Practice and Future Research

The findings indicated that telemedicine interventions have beneficial effects on the informal caregivers of patients in palliative care. We recommend that professional palliative care personnel consider the needs of informal caregivers, incorporating telemedicine into care plans to optimize and complement existing health care measures. When implementing such interventions, several considerations arise. First, the needs of informal caregivers are diverse and require multidisciplinary team collaboration. Second, personalized interventions should be tailored based on the demographic characteristics of informal caregivers. Finally, cost-effectiveness should be considered. In this regard, we suggest that relevant organizations establish regulations to minimize health care costs as much as possible.

Moreover, a theoretical or conceptual framework can provide the foundation of interventions, drive their development, and facilitate the prediction and explanation of their mechanism to achieve the desired effect [ 22 ]. For example, in the included studies, Badr et al [ 31 ] conducted a study based on self-determination theory. The authors hypothesized that telephone-based psychosocial interventions could improve the mental state and burden of patients and informal caregivers. Those results were statistically significant. The study by Pensak et al [ 35 ] was based on cognitive behavioral stress management theory and provided stress management training to alleviate informal caregivers’ burden. In contrast, studies lacking theoretical support failed to improve patient and informal caregiver outcomes. Therefore, it is recommended that researchers have a relevant theoretical foundation when devising intervention measures to enhance the intervention effect, which will be more likely to benefit informal caregivers.

In summary, telemedicine can alleviate caregiving burden and anxiety in informal caregivers but does not significantly impact their depression and QOL. Despite certain outcomes lacking statistical significance, they retain clinical relevance for those engaged in family palliative care. We believe that support provided through telemedicine represents a viable means to ensure the continuity of care, address the needs of informal caregivers, and foster favorable outcomes. Future studies that involve large samples and high-quality research are still required to further validate the effects of telemedicine. Furthermore, intervention measures should be designed with a solid theoretical basis to the fullest extent.

Acknowledgments

This study was supported by the scientific research project of the Chinese Nursing Association (ZHKY202101). The funder had no role in the study design, data extraction process, data analysis, results interpretation, or manuscript preparation.

Authors' Contributions

X Yang and X Yu were responsible for the topic and design of this review. X Yu obtained funding, and X Yang drafted the manuscript. X Yang, XL, and SJ performed the study selection and data extraction. X Yu supervised the project. All authors were responsible for the analysis and interpretation. All authors reviewed and approved the final manuscript.

Conflicts of Interest

None declared.

Search strategy.

Characteristics of the included studies.

PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) checklist.

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Abbreviations

Edited by Lorraine Buis; submitted 03.11.23; peer-reviewed by Carlos Laranjeira, Shumenghui Zhai; final revised version received 28.02.24; accepted 28.02.24; published 08.04.24.

© Xiaoyu Yang, Xueting Li, Shanshan Jiang, Xinying Yu. Originally published in JMIR mHealth and uHealth (https://mhealth.jmir.org), 8.4.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/ ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR mHealth and uHealth, is properly cited. The complete bibliographic information, a link to the original publication on https://mhealth.jmir.org/ , as well as this copyright and license information must be included.

Spotlight on the Hospice Special Focus Program

The Hospice Special Focus Program (SFP) was created by the Centers for Medicare and Medicaid Services (CMS) to identify and monitor poor hospice performers. Hospices selected for the SFP will face increased oversight from CMS and potential termination from the Medicare program if no improvement is made while in the program.

To help hospice providers navigate and understand this new regulatory landscape, Axxess created a one-page reference guide to highlight key points in the SFP and the ramifications for hospices selected to participate in the program.

Zaundra Ellis, Vice President of Hospice Professional Services at Axxess, created the guide and breaks down what providers can expect from the SFP.

Quality Measures

Ellis states that CMS will be looking at performance data from hospices over the last three years to determine inclusion in the SFP. An algorithm will be created from elements of the Hospice Quality Reporting Program , including the Hospice Care Index (HCI) and elements of the Consumer Assessment of Healthcare Providers and Systems (CAHPS) , along with survey results. Condition-level deficiencies, drawn from selected measures from the Conditions of Participation (CoPs) will be also considered by CMS.

“The condition-level deficiency is cited when all of the standards that make up that condition of participation, either a majority or all of them, are not met,” Ellis says. “Some of these organizations are not able to meet all the standards.”

Aside from survey results, substantiated complaints will also be weighed heavily by CMS.

“If someone complains and they come and investigate that complaint, and the surveyor then finds out that there was a compliance issue tied to that complaint, that’s a substantiated complaint, so they’re looking those over three years as well.” Ellis says.

Based on these elements, a final score will be created for each hospice. A high score in this instance indicates poor quality. Providers with the highest scores will be selected for the program. CMS will notify selected providers later this year.

Medicare Termination

Hospices selected for the SFP will be surveyed every six months and their progress will be reported on the SFP website, Ellis outlines in the guide. Hospices who fail to complete the program by returning to standard compliance will face potential termination from the Medicare program.

“Organizations that do not graduate from the program are at risk of having their Medicare certification pulled,” Ellis says. “So let’s say an organization gets a condition-level deficiency for plan of care and patient rights, they’re going to stay in the program for another six months, then they get tagged again for patient rights. At that point, [CMS] starts the process of penalties, CMS taking over management of the organization and ultimately losing their Medicare certification.”

Ellis shares that organizations selected for the program will have to go a year without any condition-level deficiencies to graduate from the program.

Hospice Preparation

While CMS has the best intention in creating the SFP and monitoring poorly performing hospices, Ellis shares, one thing the program lacks is supportive training for providers.

She advises hospices to prepare for the increased oversight by staying up on top of CMS’ State Operations Manual for hospices for any regulatory changes, looking over survey results from the last three years, focusing on your Quality Assurance and Performance Improvement (QAPI) program and investing in training and certification.

“ Axxess Training and Certification+ will have everything a hospice would need to learn how to properly care for and document care for their patients to get out of the [Hospice] Special Focus Program.” Ellis says.

She also encourages providers to reach out to hospice consultants and accrediting bodies, like the Community Health Accreditation Partner (CHAP) and the Accreditation Commission for H ealth Care (ACHC) for support and education.

“Having a lot of grit to work through a process where there really is no guidance and being a sponge, learning as much as possible about hospice compliance is going to be key.” Ellis says.

To download Ellis’ guide on the Hospice Special Focus Program, click here .

Axxess Hospice , a cloud-based hospice software, includes simple tools such as real-time plan of care updates to help keep organizations compliant.

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Catch up locals' news in English

“It’s good that there are more such places”: how the children's hospice “House with a lighthouse” works in Moscow

2019-10-21T12:12:50.919Z

In October, a hospital for the children's hospice “House with a lighthouse” opened in Moscow. It is planned that about 400 terminally ill children per year will be provided with palliative care within its walls. Admission of patients for long stays will begin in the spring, when the institution receives a medical license. As in the capital's hospice today they help children and their parents - in the reportage RT.

The building of the former school on Dolgorukovskaya Street immediately attracts attention: the eyes first cling to the large white lighthouse with a red roof in the courtyard. This is a playground. There is nobody on it yet: for a long-term stay in a hospice, children will be able to arrive no earlier than spring, when the hospital will receive a medical license. Until that time, holidays for wards of the hospice are held in it two or three times a month.

Today there is a “one day camp” - a series of holidays for children, their siblings and parents. Each time the camp is dedicated to one country: now it is Germany. The wards are issued a “passport”, where a “visa stamp” is placed and a sticker with the flag of the country is glued. The color supports a Bavarian-style dinner, except that instead of a typical Oktoberfest drink, children prepare a fruit smoothie. The rest of the entertainment is international: scrapbooking, an origami master class, chess, gingerbread painting and a show program with ice cream.

Very bright and spacious rooms, tastefully decorated interior in a marine style - nothing to do with ideas about the medical facility. On the doors there are signs: “galley”, “latrine”, and instead of the official “chambers” - “cabins” with their numbers. In the cabins - not tiny portholes, but huge windows on the floor - with a soothing view of the crimson-golden garden. Both children and their mothers and fathers are calm and cheerful.

Part of the classes takes place in different cabins: while the hospice wards, with the help of volunteers, either play the "bus", or spin around under the starry dome, fleeing the "rain", their brothers and sisters make postcards. At the play “Three Bears and Juhah”, the hospice wards and their relatives get together and laugh at especially funny moments.

• © Semyon Khorunzhiy

“We try to participate in all the events of both the House with the Lighthouse and other hospices,” says Ekaterina Ikonskaya, the mother of three-year-old Sasha. - For example, great holidays were held at VDNH. But getting from there from the other end of Moscow is long and uncomfortable. It’s good that there are more and more places to come with a child. ”

While the children sincerely rejoice at the grimaces of Juhah and the bears, the parents in another cabin listen to the psychologist. “It is very important that we deal not only with children, but also with adults. The topics for discussion are selected by the survey method: what would be interesting for mothers and fathers themselves, ”says Vladimir Lucaninov, director of non-medical care at Home with a Lighthouse. - For example, the topic of nutrition of a terminally ill child was very popular with us. This time they are discussing “languages ​​of love”, because you can show your affection by word, deed, time or touch. ”

Parents not only learn something new in these classes: they get an almost two-hour respite, while they are sure that the children are under qualified supervision at this time. When the hospice is fully operational, this respite will increase to two weeks.

“One of the important tasks of the hospital is a social respite for the family. Caring for even the most beloved child in the world 24 hours a day, 7 days a week is very difficult, our parents have had such a life for decades. In the hospital, they will be able to leave the child for two weeks with a team that already knows him well, and go about their business, maybe go somewhere or just relax, ”said Sofya Kharkova, PR director of the House with a Lighthouse charity foundation.

The hospital is engaged in assistance at the end of the life of the ward. “Most families prefer children to die at home. "House with a lighthouse" accompanies the process of dying at home. But there are families who want the child to die in a hospital. In this case, they will be able to go to the hospice in full force - with brothers, sisters, dad, mom, grandmother and godmother, for example, ”says Sofya Kharkova.

According to her, children with incurable diseases need qualified care. And in a hospital, where there is one nurse for dozens of patients, it is rarely possible to teach parents everything they need.

“In such a situation, parents will be able to go to hospice in order to learn how to care for the child and his medical devices. You can also choose medical nutrition or, for example, therapy for seizures, ”the PR director continues.

14-year-old Vika, daughter of Zhanna Dubieva, cerebral palsy, central nervous system damage, epilepsy and several other concomitant diseases. They try to attend different events of the foundation, but the girl can hardly endure activity for more than three hours. Zhanna and Vika live together, periodically they are helped by the eldest son of Zhanna, but every time he goes from the Moscow region every hour.

“House with a lighthouse” pays a part of the costs for the nanny, which comes for a short time, but several times a week. Sometimes these visits can be “summarized," then the nanny lives in Vika’s apartment for seven to ten days, and the girl’s mother can leave somewhere.

“But still there isn’t enough rest, I would have left for two weeks, if I hadn’t been left without additional help since the“ limit ”has been exhausted. Well, you save on everything, it’s not up to a long vacation, ”says Zhanna Dubieva.

In total, about four thousand children a year need palliative care in Moscow. 15 inpatient departments work for them, excluding “Houses with a lighthouse”. Most hospitals exist at state clinics, one works at the non-state Central Clinical Hospital of St. Alexis the Metropolitan of the Moscow Russian Orthodox Church. This year, the institution received a grant for palliative care. In addition, there are three visiting patronage services in the city, including prescribing at the patient’s bedside, anesthetizing with potent drugs at home, dressing or organizing individual posts in apartments.

Source: russiart

All news articles on 2019-10-21

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© Communities 2019 - Privacy

• Open access
• Published: 02 April 2024

Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study

• Berivan Yildiz 1 ,
• Agnes van der Heide 1 ,
• Misa Bakan 2 ,
• Grethe Skorpen Iversen 3 ,
• Dagny Faksvåg Haugen 3 , 4 ,
• Tamsin McGlinchey 5 ,
• Ruthmarijke Smeding 5 ,
• John Ellershaw 5 ,
• Claudia Fischer 6 ,
• Judit Simon 6 ,
• Eva Vibora-Martin 7 ,
• Inmaculada Ruiz-Torreras 7 ,
• Anne Goossensen 8 &

the iLIVE consortium

BMC Palliative Care volume  23 , Article number:  88 ( 2024 ) Cite this article

202 Accesses

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End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals.

Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital.

Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK).

Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained.

Trial registration

NCT04678310. Registered 21/12/2020.

Peer Review reports

Introduction

Over the past years, end-of-life (EoL) care volunteering has become an important contribution to high quality care for patients in their last phase of life [ 1 ]. EoL care volunteers have been shown to offer practical, emotional, social, and existential support in a way that improves the well-being of patients and their families [ 2 , 3 ]. In almost every country in Europe, EoL care volunteers are actively engaged in hospices which would struggle to exist without their contributions in providing high quality care for dying patients [ 4 ]. Countries vary in the numbers and roles of volunteers, the tasks they perform and the developments in their organisations [ 5 ]. However, all do embrace “being there” as the core concept of this unique source of providing community care [ 6 , 7 ]. In some countries, volunteers have had a long involvement in EoL care volunteering, while in other countries these services have only recently started.

A relatively uncommon setting of EoL care volunteering—even in countries with a long history of volunteering – is the hospital setting, and specifically wards not specialised in palliative care. It has been suggested that EoL care volunteers enable patients to maintain their “social capital” during their stay in the hospital and allow the process of dying not to be narrowed within a medical or solely professional context [ 8 ]. Studies have suggested that EoL care volunteer services have the potential to improve the experience of dying patients in the hospital and prevent loneliness, particularly for those without social networks [ 6 , 9 , 10 ]. Moreover, a recent systematic review showed that hospital palliative care volunteers were appreciated for providing psychosocial support, considered as complementary to, rather than replacing the work of health care professionals [ 11 ].

Hospital settings have different characteristics compared to other settings where volunteers may support patients in their last phase of life such as home, community or stand-alone hospices or palliative care volunteering services. This may imply a different nature of volunteering or factors leading to successful integration in hospital care [ 11 ]. Implementing a comprehensive EoL care volunteer service for patients in hospital wards, where the context and care culture are not per se focused on palliative care, entails the integration of various aspects including training, staffing and directing. So far, studies have predominantly focused on examining the experiences of volunteers, providing insight on the volunteer training requirements, and the difficulties and benefits of fulfilling the role of a volunteer in the hospital setting [ 12 , 13 , 14 ]. No studies are available about the experience of implementing an EoL care volunteer service in the hospital setting, from the perspective of those coordinating the implementation.

As part of the European Union Horizon 2020 funded iLIVE project [ 15 ], the iLIVE Volunteer study developed a European Core Curriculum (ECC) for EoL care volunteers in the hospital setting [ 16 ]. The curriculum includes specific attention to ensuring end-of-life-care volunteers are embedded within the organisation, including understanding the specific needs of wards within the hospital where the volunteers will be supporting dying patients [ 16 ]. The curriculum was used to train volunteers and establish an EoL care volunteer service for hospitalized patients in five hospitals (one hospital in each of the following countries: The Netherlands, Norway, Slovenia, Spain and United Kingdom). To better understand how an EoL care volunteer service can be implemented in the hospital setting, this study aims to identify barriers and facilitators as experienced during the implementation of EoL care volunteering in hospitals in the five countries.

Study design and setting

The five hospitals were part of the iLIVE Volunteer Study (Trial registration number NCT04678310) in which research staff had online international meetings on a regular basis. A timetable of the project with timeslots of data collection and data analysis is included in the supplementary file . In each of the five participating hospitals, a site-specific EoL care volunteer service was developed and implemented. The number of wards in which the volunteer services were offered ranged from 1 to 8. The volunteers were active during different time slots on working days and during weekends. (Table  1 ).

Participants and procedures

Volunteer coordinators (VC) were assigned to lead the development and implementation of the EoL care volunteer service in each hospital (Table  2 ). In the Netherlands, Norway and Spain, two VCs were appointed to coordinate the service in their hospitals; in the UK and Slovenia one VC was appointed. All VCs followed a three-day “Train-the-Trainer” course in the UK prior to developing and implementing their volunteer services. The aim of this course was to introduce the ECC and provide information and skills for the development and implementation of the EoL care services, including a focus on the development of a volunteer training.

VCs were invited to participate to a focus group interview and an in-depth one-to-one interview about their experiences with implementation of the volunteer services. All VCs were female. VCs were contacted by e-mail and informed about the aims and procedure of both the focus group interview and one-to-one in-depth interview. Since the focus group interview took place as part of a project meeting, the researchers had also informed the VCs about practical and content-related details regarding the focus group interview. Most VCs had personally met the researchers before as part of the international project. All VCs explicitly provided verbal and written informed consent prior to participating in both the focus group interview and one-to-one in-depth interviews. The Consolidated criteria for reporting qualitative research (COREQ) checklist has been used to report necessary elements of the methods, analysis and results sections.

Data collection

The process of development of the EoL care volunteer services started early 2020. To collect data, the case study methodology according to Yin was applied, using multiple methods and data sources [ 17 ]. This case study approach provides the ability to deal with the comparison of different phenomena in complex and context dependent situations [ 18 ]. By using multiple data sources, the goal was to increase the validity of the research findings. This method also seemed useful given the international character of the study and therefore to partly compensate for the inability to be on-site. The first type of data collected was descriptive information about the volunteer services, using preformed documents that were shared with the researchers to inform them about the status of the service development in each country at regular intervals. Logbooks were used to report about decisions that were taken regarding the structure of the service. The second type of data collection were the focus group interview [ 19 ] and the one-to-one in-depth interviews with VCs [ 20 , 21 ]. An overview of data collection methods and analysis is provided in Fig.  1 .

Overview of data collection methods and data analysis

After careful comparison of implementation theories, the Consolidated Framework for Implementation Research (CFIR) was used as a frame to inspire data collection and analysis [ 22 , 23 ]. The CFIR identifies factors that influence an intervention’s implementation and includes five major domains, each consisting of a number of constructs: Intervention, Inner setting, Outer setting, Characteristics of individuals, and Implementation process. (Table  3 ).

A semi-structured interview guide was developed using the interview guide tool available on the CFIR website [ 24 ]. The CFIR interview guide was reviewed to identify and select questions relevant to the implementation of the volunteer services. A pilot interview was then conducted with one VC using the CFIR interview guide with selected questions. Following this pilot interview, the interview guide was adapted to include self-developed questions to facilitate the interviews. The interview guide is included as a supplementary file .

Focus group interview

The face-to-face focus group interview was scheduled in May 2022 as part of a project meeting in a research and education center in Malaga, Spain. One VC from each site and two VCs from the Dutch site participated. At the beginning of the focus group interview, the moderator explained the aim and procedure of the focus group interview and in-depth interviews. She also explained the role of the moderator and the researcher who was present to take field notes during the focus group interview.

During the focus group interview, VCs were asked to list the top three factors that helped or hindered implementation. Each VC then shared their list of factors and the group elaborated on topics that were deemed important. Discussion was facilitated by asking questions from the CFIR interview guide and whether other VCs had similar or different experiences. At the end of the focus group, all VCs were asked to fill in a paper sheet that included a radar chart covering the five domains of the CFIR extended with an additional domain regarding the COVID-19 pandemic. The meaning of the domains and related constructs as included in the interview guide was explained. The VCs were asked to rate to what extent each domain of the CFIR influenced the implementation. The VCs could choose a score between -5 and 5 to rate each domain on the radar chart. A positive score (1 to 5) indicated a positive influence of a specific domain on the implementation of the EoL care volunteer service, while a negative score (-1 to -5) indicated a negative influence of a specific domain on the implementation. For example, a score of 5 indicated an extremely facilitating influence of that domain on the implementation process. The VCs from the Dutch site completed one radar chart together. The duration of the interview was 1 h. The interview was audio recorded and transcribed verbatim.

Both the moderator (AG, PhD) and the researcher (BY, MSc) who took field notes were female. AG is a professor of care ethics by occupation and BY a PhD candidate. Both researchers are by education trained to perform qualitative research.

In-depth interviews

To gain deeper insight into the facilitators and barriers for the implementation processes, one semi-structured in-depth interview per site was conducted with either one (the Netherlands, Spain, Slovenia, United Kingdom) or two (Norway) VCs. The in-depth interviews took place two to four months after the focus group interview was conducted. During the in-depth interviews, VCs were asked to give a detailed description of site-specific experiences visualized in the rating of each CFIR domain on the radar chart. Experiences related to their scores on the chart were explored verbally. Questions from the CFIR interview guide were asked for in-depth understanding on how relevant constructs under the domains influenced the implementation. The mean duration of the interviews was 55 min (range: 35—67 min). All in-depth interviews took place via Zoom and were conducted by a female researcher (AG). The interviews were audio recorded and transcribed verbatim.

Data analysis

Data from the preformed documents and logbooks were analysed within and between sites to get insight into the characteristics of each EoL care volunteer service. Analyses of the focus group and in-depth interview data started by studying the radar charts. Then, the transcripts of the in-depth interviews and the focus group were read to get familiar with the data, focusing on facilitators and barriers for implementation. Data saturation was discussed after the focus group interview and the five in-depth interviews. The domains of the CFIR were used as the theoretically inspired framework to conduct framework analysis [ 25 , 26 ]. Framework analysis was used because of its structured approach to summarize, compare and contrast data from the different contexts of the sites in relation to the five dimensions of the CFIR model [ 25 ].

Then, data of both the focus group interview and in-depth interviews were summarized under each domain for each EoL care volunteer service. Within this framework, facilitators and barriers were specified, and reflection on similarities and differences between sites took place. This resulted in a table per site illustrating the identified facilitators and barriers under each CFIR domain. This table includes facilitators and barriers identified during both the focus group interview and the five in-depth interviews.

Data that were not directly obvious to which domain of the theoretical framework they might belong, were placed in a separate column. After discussion among the authors about whether and which domain of the theoretical framework, if any, would be most appropriate, the data were integrated into the findings as well. This was done by including the data to the table of facilitators and barriers per site.

The first author (BY) performed the framework analysis and the last author (AG) evaluated twice whether the summaries were adequately answering the main research question under each CFIR domain [ 25 ]. The last author provided feedback in the analysis document, and the content and focus of the first author’s summaries were discussed in meetings. When AG identified summaries that did not directly answer the research question, such as descriptions of processes and contexts, suggestions were provided to identify and formulate facilitators and barriers as well. In this way, facilitators and barriers were identified together with descriptions of the different contexts and processes in which the facilitators and barriers were experienced by the VCs. This ensured the quality of the summaries during the analysis process. A member check about the written results of the analysis was performed with the VCs for comments or corrections.

Generic as well as site-specific barriers and facilitators were identified regarding the implementation in the five hospitals. In the following account of the results, pandemic related aspects, which posed a similar significant barrier across all sites, are distinguished from site-specific barriers and facilitators, which provide insight into the different contexts in each site. In addition, an overview of all site-specific facilitators and barriers is provided in the supplementary file . Figure  2 shows the scores for each CFIR domain per site.

Consolidated Framework for Implementation Research (CFIR) domain scores depicted in radar charts per site

Pandemic related aspects

In all hospitals, the COVID-19 pandemic and associated measures were unpredictable and experienced as an enormous barrier to implementing the EoL care volunteer service (Fig.  1 , Supplementary file). One main hindering aspect of the pandemic, across all hospitals, was that volunteers were not allowed access to the hospital for a long period of time as imposed by governmental regulations. It was important to keep the volunteers motivated as the restrictions led to decreased motivation among volunteers who had completed the training and were ready to support patients. Consequently, some volunteers from the site in the UK decided to leave the service. In the site in Spain, possibilities for e-volunteering (e.g. telephone contact) were explored during this period.

Another barrier was that VCs had difficulties reaching healthcare professionals who were under high pressure. As a result, attempts to spread the word about the EoL care volunteer service were delayed or cancelled. Even in between waves of the pandemic, it was hard to promote the service due to the staff feeling exhausted and searching for balance in their departments. Consequently, the services had to be carefully introduced.

“Also during COVID, healthcare providers from one ward were displaced to another and there were a lot of mixing and stress about this. Then after each wave of COVID back to their original wards, it was stressful for them. I think this was also when they saw it [the volunteer service], they were like “oh ok, one thing more”. Then we slowly started to come one time, then another time. We started to make these promotions with postcards and with meetings. Then we repeated this meeting with managers and repeated this meeting on the ward. So it was a process.” (Coordinator 1, Site C, Slovenia, in-depth interview).

Site-specific facilitators and barriers

Site a (the netherlands).

The implementation in the Dutch site was mainly facilitated by positive experiences from the CFIR dimension of process (score 4) and hindered by barriers in the CFIR dimensions of inner setting (score 2) and characteristics of individuals (score -3). The process of implementing was described as a process of learning, reflecting and adapting. The VCs strived to acquire knowledge through their conversations and meetings with others. This facilitated the structure of the service and provided them with new strategies or led to adapting existing strategies. In addition, a facilitator was that healthcare staff, patients and families acknowledged the added value of the service. However, the opinion of some nurses who were skeptical about the service was perceived as a barrier, particularly among nurses with more years of work experience compared to nurses who graduated more recently:

“The service was easy to tell and then we were waiting, we hear that patients around us are dying and could easily have had volunteers supporting them. Until we learned that we also had to deal with the opinion of the nurse. That was new to us. So if you [the nurses] think: “yes, but it's my patient and I'm here anyway”, they will not call us if they think that way. While they did say what a nice service, how great that this exists, we also immediately resolved by saying that the service is not only for a patient who is alone, but also for a patient with family. So keep it open, just ask us. And if they had an opinion, then I just noticed: “you're not going to call me”.” (Coordinator A1, The Netherlands, in-depth interview)

Although the existence of a general volunteer service in the hospital was viewed as a facilitator in the CFIR dimension of the inner setting for implementation and recruitment of volunteers, the hierarchical structure within the hospital was experienced as posing a huge barrier. It was a challenge for the VCs to reach healthcare professionals on the wards to disseminate information about the service. Moreover, the working environment in the hospital characterized by shortages of personnel and a large number of flex workers (i.e. nurses) deployed on different wards depending on the needs of the ward, presented an additional barrier. The VCs therefore had to deal with nurses who were not fully engaged with a patient due to their brief presence on each ward.

“A coordinator cannot get that deep into care. You need an intermediary, in this case, the chaplains. Or a contact person who has been at family meetings, for example. But that [the route] takes a huge amount of time because the route is user-unfriendly: you have to go through a lot of layers, on every part of the day you have to deal with different people, this also differs per ward. Different people all the time, means that you have to explain things all over again. Also, if they have not passed it on to each other properly in the patient file, you get time pressure on the patient. Ideally, you should get rid of some of the layers.” (Coordinator A1, the Netherlands, in-depth interview)

A barrier regarding characteristics of individuals was to adapt to the diverse opinions held by various stakeholders within the hospital setting. Specifically, the VCs encountered difficulties during conversations about the volunteer service, which tended to move into different directions depending on whether they were held in a group or on a one-to-one basis. Additionally, the VCs had to deal with the views of individuals who joined the project team at a later stage, which impeded the implementation process. With regard to the characteristics of the intervention (score 5), the volunteer training and supervision sessions for volunteers were believed to foster a sense of friendship among the volunteers, which facilitated the continuity of the service.

Site B (Norway)

The implementation in the Norwegian site was mainly facilitated by the climate in the inner setting (score 3), positive beliefs about the volunteer service (score 5), and characteristics of individuals (score 4). One main facilitator was the perceived added value of the volunteer service for all stakeholders: the patients, relatives, nurses and physicians, and the hospital management (CFIR domain outer setting, score 2). The VCs considered the volunteer service to be beneficial for all those involved. Although some skeptical nurses worried about volunteers taking away their role, nurses who had established a closer relationship with their patients mostly asked for a volunteer:

“The third part I think is the nurses and the health care personnel working in the clinic and on the ward. Because it is a relief for them too. And I, what I see in this part is that when they call me to ask if a volunteer can be there, it is usually for a patient that they know very well, they have a relation to the patient and that goes to the feelings of the nurse. He or she they feel that “I know this patient, she is dying; I have a relation with her, I don’t want her to die alone…but I don’t have the time to sit there” and then they call us. I think that is an added value for this.” (Coordinator B1, Norway, in-depth interview)

The involvement of volunteers during the implementation process was one of the most important facilitators for implementation. The implementation is described as a democratic process in which volunteers are valued for their work and have a say in the decision-making process during the implementation of the service.

“[…] it is a democratic process, they have been into every decision, and they have discussed every topic around how to fill the role of a volunteer in our hospital so they own the project on the whole. They think about it, they read the information, they discuss how to do this, we change, if they want something changed and it seems like a good thing to do, we change. It is not about anyone’s prestige, it is about doing a good job and they decide how to do a good job in this. (Coordinator B1, Norway, in-depth interview)

A facilitator related to the nature of the volunteer service was that next to the VCs, healthcare staff also spread the word about the existence of a hospital volunteer service they found valuable.

“That said, I would say that people who know about this, the department or clinics knowing…they are very positive. Yes, so we have not met anyone saying, “Oh no what’s this, we don’t want this”. They are very positive. People are calling me from unexpected clinics and ask me “Is it true that you have some volunteers who can do this and can do that.” For me that is very positive and kind of self-advertisement. They hear about it from other people.” (Coordinator B2, Norway, in-depth interview)

Site C (Slovenia)

In the Slovenian site, most barriers were identified in the inner setting (score -4). Typical for the Slovenian setting were patients who were not familiar with volunteering. The entire concept of EoL care volunteering had to be introduced in the hospital, requiring considerable effort from the VC and staff. The VC experienced difficulties to spread information to the healthcare professionals. Another barrier was the closure of the palliative care ward due to COVID-19 during implementation. Due to this, the volunteer service had to be adapted in order to be offered at other wards. Nevertheless, regular meetings with different groups of healthcare professionals were identified as a facilitator in this process. In addition, the VC experienced a feeling of trust among healthcare professionals during the hectic periods of the pandemic:

“And I think during these first years we did a lot of work during the COVID and the healthcare workers got to know us and I think there was an increase in trust also to me and [colleague] and that’s why the volunteer intervention was also more successful because they listened to what we want to say, what we think, what we suggest, and we kind of try new things. It is not easy here to implement something new because patients get many busy schedules. There are many things, which are going on here is a bit hectic, or it is just normal to be hectic with many things happening. “ (Coordinator C1, Slovenia, in-depth interview)

A facilitator in the outer setting (score 0) was that the volunteer service was considered to be an added value for patients, as the patient population consisted of patients with pulmonary diseases. The VC believed that volunteers could offer support by calming patients but were also aware that patients were vulnerable for infections by volunteers. A facilitator regarding characteristics of the intervention (score 3) was the quality of the training leading to gaining knowledge among the group of volunteers and feelings of enthusiasms. In addition, they felt connected with each other and were motivated, despite the volunteer training sessions taking place online:

“ And I think they have clear motivation why they want to help people at the end of life and this was I don’t know connected together. And they were here, they were available even if they cannot come here or they do not want to come here because of Covid for example, different reasons, but they were mentally here with us. I think this was also important. As a coordinator, it was a good feeling knowing you had someone you could call. They are not just like dropping out but they are here.” (Coordinator C1, Slovenia, in-depth interview )

With regard to characteristics of individuals (score 5), the VC experienced a lack of support and appreciation towards the volunteer service from the management level. However, the support they received from the head of nurses and physicians turned out be a facilitator. In addition, having a retired nurse among volunteers was a facilitator as she emphasized the importance of such a service to other volunteers and healthcare professionals. In addition, because of her experience with patients with pulmonary problems she could advice on volunteer tasks that could benefit this specific patient population, such as assistance to get fresh air.

Site D (Spain)

The implementation of EoL care volunteers in the hospital in Spain was coordinated by two coordinators from the volunteer department of a local hospice. The VCs described the implementation process as a learning process (score 4). Introducing themselves and the volunteer service to the staff in the hospital appeared to be challenging. Different strategies were needed to facilitate communication between volunteers, the volunteer department of the local hospice and the hospital. In addition, barriers in the inner setting (score 1) were the lack of support from the management level of the hospital, and uncertainty about their role in the development and implementation of the service, which delayed the implementation.

“It was like, you know as [name of hospice organisation] we are a very well-known organisation and it was.. Sometimes it was really difficult to get to a hospital when you are a well-known organisation and.. It was like sometimes the hospital was feeling like we were going to teach them. It was like if we were the best and they were the worst, something strange of the head of the organisation. That part was really difficult.” (Coordinator D1, Spain, in-depth interview)

A barrier in the outer setting was unfamiliarity with the concept of EoL care volunteering among healthcare staff and patients (score -1). However, the VC undertook activities to engage the wider public and to introduce the volunteer service, for example through the use of social media. This also facilitated recruitment of volunteers.

Although the staff in the hospital had a positive view on EoL care volunteering, a barrier was that staff were not available all the time, and volunteers found it challenging to communicate with them about patients:

“Sometimes we felt that they [hospital staff] wanted it [the volunteers] not all the time. Only in the time it was useful for them. Let me see if I can explain myself. Our volunteers go there in the afternoon from 5pm to 7pm. So the volunteers started maybe 20 minutes early to get into the hospital [..] But sometimes they felt that was not the best moment for the staff because it was a busy afternoon because they did not have enough time. It was one of the difficult ones because some volunteers were more open or who have more tools they could manage to get more information or let them go and get more information later.” (Coordinator D1, Spain, in-depth interview)

Site E (United Kingdom)

The inner setting (score 3) in the hospital in UK was characterized by a climate in which volunteering is highly valued and welcomed. EoL care volunteers had already been active in the hospital for a longer period. The support from the staff at the palliative care ward towards volunteers turned out to be an important facilitator. Volunteers being valued as part of the teams by the staff was important in the implementation, as they came back again which facilitated the patients to see the value of it. At wards other than the palliative care ward, raising awareness about the service was a challenge as they were not familiar with this type of volunteering. Therefore, it was noted that it took time for healthcare staff to become aware of the volunteer service’s availability to support their patients.

With regard to the characteristics of the service (score 4), there were strict views on the role and boundaries of what a volunteer can or cannot do in the context of end of life. Education and awareness about this among volunteers and staff were identified as facilitators. A good working relationship between the VC, volunteers and staff at the ward was an important facilitator in the CFIR domain of characteristics of individuals:

“I think something that’s really important that has been positive is the relation between the volunteer service staff and the staff within the palliative care department and the staff in the ward where the volunteers work. Having good communication and good working relationship is really important. And I would say we definitely have that and without that I think that would hinder the implementation and the service as a whole, but we work really well together and can go to each other if we have questions or concerns. […] I think that’s really important, and everyone is aware of what those volunteer role boundaries are and the purpose of the volunteer and what they need support wise in order to succeed in that role.” (Coordinator E1, United Kingdom, in-depth interview)

This study investigated the facilitators and barriers to the implementation of a novel form of EoL care volunteering: in inpatient hospital settings. Pilots in five hospitals in five European countries were involved. Using the CFIR model, both generic and site-specific barriers and facilitators regarding implementation were identified. Similar influences across sites were the COVID-19 pandemic delaying the implementation process, and the necessity to raise awareness about the new volunteer service due to lack of recognition among hospital staff about the added value of EoL care volunteers. Site-specific facilitators influencing the implementation were the presence of a general volunteer service in the hospital, quality of the volunteer training, and involving volunteers themselves in promoting the service. Education and awareness for healthcare professionals about the role, conceptualization and added value of, and boundaries in interacting with volunteers were also identified as facilitators. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders, unfamiliarity with the concept of EoL care volunteering in the hospital and negative views among nurses about this source of care in the hospital. Moreover, a lack of support from healthcare professionals and the management, and uncertainty among VCs regarding their role during implementation were also perceived as barriers.

Complexity of implementing community care

Within the literature, volunteering is considered a unique source of providing community care, in addition to professional and family care at the end of life [ 6 , 9 , 27 ]. However, by incorporating community care (EoL care volunteering) into the highly specialised environment of a hospital, particular challenges and considerations can be expected due to clashes in cultures of care. In all hospitals, implementation of such a service appeared to be a complex and time-consuming process. This was partly caused by the COVID-19 pandemic and the measures restricting access of volunteers to hospitals [ 28 ], but mainly also by other barriers related to the inner and outer organisational context, the intervention itself, and characteristics of individuals involved.

In this sense, the findings of the present study fit into the theoretical model of dissemination and implementation of healthcare innovations developed by Greenhalgh and colleagues [ 29 ], which served as the foundation for the development of the CFIR model. According to Greenhalgh et al., implementation is viewed as a complex process organised under certain components such as communication and system readiness, while interactions of these components occur within the social, political and organisational context. Using the CFIR model, it was possible to identify why VCs experienced certain barriers and facilitators during the implementation process, such as nurses expressing positivity about the service while being convinced that caring for patients was their own job.

Inner setting

Although it is challenging to evaluate the impact of socio-cultural site-specific aspects on the implementation of the five services, unfamiliarity with EoL care volunteering in the hospital and negative views among nurses about volunteers in all sites, required serious time and communicative efforts of all VC’s. In site A (the Netherlands), this was even more complicated since the VCs had no direct links to clinical staff and thus encountered challenges to reach staff from various levels at the clinical wards. In addition, due to the working culture among healthcare professionals (i.e. flex workers) in this hospital, the VCs had to deal with nurses who had little information about patients and changing staff, as also demonstrated in another study about experiences of volunteers [ 12 ]. In contrast, it was found that nurses in the Norwegian site who had established a good relationship over time with their patients mostly asked for a volunteer. These findings indicate the importance of analysing the interaction of implementation components with social, political and organisational contexts, including working conditions of available staff, for understanding the differences in utilization of the volunteer service in different hospital settings. A clear conceptualization of “being there” may prevent a medical, nursing or task-oriented understanding of the contribution of volunteers to care in hospital contexts [ 6 ] and may increase constructive collaboration with professionals.

It should also be noted that a good patient-nurse relationship may introduce a risk for selection bias and unequal access to the volunteer service. For instance, patients who may experience difficulties to establish a relationship with nurses, for example due to language barriers, may be seen as less likely to be supported by a volunteer than those who have no or less difficulty establishing relationships. Themed sessions about equity or unconscious bias for volunteer coordinators and hospital staff is recommended to ensure equal access to volunteer support. In addition, recruiting a diverse group of volunteers may help minimize the risk of selection bias and unequal access [ 30 ].

One finding was that among all sites, only the Dutch VCs experienced challenges during conversations with individuals who had negative opinions about the volunteer service. This may be due to the prevailing idea in the Netherlands that death should not take place in the hospital, but at home or in community places such as a hospice. This meant that patients had a short length of stay in the hospital and therefore there was a narrow window of time to offer the volunteer service. However, it has been suggested that bringing community care to the hospital not only helps to fill the social gaps when a patient lacks visiting family, but might also lead to better transfers of patients back to a hospice or to their home [ 31 ]. In addition, even for short periods of admission to the hospital, volunteers in healthcare may have the capacity to improve patients’ experiences of care [ 32 ]. This may be even more important in the light of a growing population with palliative care needs [ 33 ].

Involvement of important individuals

The findings of this study indicate that implementation of EoL care volunteering in the hospital setting requires involvement of stakeholders in a way that enables medical and EoL care volunteering to co-exist. On the one hand, it is important to address the views of nurses about the role and boundaries of volunteers while emphasizing the knowledge that volunteers do not replace the role of paid staff [ 11 ]. On the other hand, volunteers should not only be informed, guided and enabled to perform their role [ 34 ], but also involved in decision-making during implementation. In our study, an organisational facilitator was that volunteers in site B (Norway) were from the beginning involved in decision-making about approaches and how to work the service. This approach may imply that EoL care volunteers may be viewed as equal members of the healthcare team [ 11 ]. A previous study has suggested that despite volunteers being regularly informed on how patient care was organised, they still had no decision-making power and were not regularly invited to contribute to how patient care was organised [ 35 ]. It is recommended to further explore how trust and equal partnerships between volunteers and paid staff can be built and sustained [ 1 ]. These factors are modifiable and should therefore be considered in order to improve EoL care volunteering in hospital settings [ 36 ].

Strengths and limitations

This study has several strengths. To our knowledge, this is one of the first studies to present findings on implementation aspects of EoL care volunteering in the hospital setting. Previous studies have mainly focused on experiences of volunteers, providing insight on the training needs of volunteers, and the difficulties and benefits of fulfilling the role of a volunteer in the hospital setting [ 12 , 13 , 37 ]. Another strength of our study is that the study group was able to collect qualitative data in an international context. In addition, collection of data was done by combining different methods such as a focus group, in-depth one-to-one interviews and data from preformed documents and logbooks.

A limitation of this study is that due to the international nature of the project, it was not feasible to conduct ethnographic research in the sites. Observation of (non)verbal interactions may provide more in-depth knowledge about the implementation process. However, the CFIR is based on relevant implementation theories in a variety of disciplines [ 22 ] and offered a clear structure for data collection and analysis. Further research is needed to investigate how innovations involving EoL volunteering should be adapted to the context of the hospital, especially in light of the trend that many people die in hospitals in middle- and high- income countries [ 38 ]. Another limitation is that the interviews were conducted with VCs who were in varying stages of implementation due to the impact of the pandemic. Consequently, the complete range of experiences for those who had started the implementation of the volunteer service shortly before the interviews took place not have been fully captured. Therefore, there may be additional facilitators and barriers that were not presented in the findings. Nevertheless, this study provides insights into the factors that contribute or hinder implementation of EoL care volunteer services in hospitals, highlighting areas for further investigation.

One limitation of the study may be related to the potential bias resulting from the VCs being part of an international project. On the one hand, it is plausible that the VCs may have been particularly motivated, leading to positive attributions of feelings and experiences regarding the process. On the other hand, they may have felt pressure to aim for a successful implementation of the service, potentially leading to negative attributions of meaning to the implementation process. It is possible that VCs have overlooked certain barriers or facilitators. However, it is important to note that a substantial number of both facilitators and barriers across all dimensions of the CFIR framework was identified. Therefore, it is not expected that this has affected the findings.

Recommendations

Based on the findings of this study, it is recommended to increase awareness and provide education among healthcare professionals regarding the role and benefits of EoL care volunteers in the hospital setting. This can be achieved through training programs addressing the conceptual core of EoL care volunteering organised by collaboration of VCs and healthcare professionals in hospitals. Regular communication and research about the value and cost-effectiveness of EoL care volunteering in the hospital respectively is also needed [ 11 ]. In addition, further research should explore effective strategies for promoting EoL care volunteering in hospitals and understanding the cultural and contextual factors that influence the implementation of such services. Such research could involve a multi-stakeholder approach to gain insights from healthcare professionals from the management level to frontline staff, volunteers, patients, and their families.

Availability of data and materials

Possibilities for sharing data can be discussed upon request, by contacting the corresponding author (BY).

Abbreviations

The Consolidated Framework for Implementation Research

Volunteer coordinator

End of life

The Netherlands

United Kingdom

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Acknowledgements

The authors wish to thank the volunteer coordinators for their cooperation in this study.

iLIVE consortium

Simon Allan 9 , Pilar Barnestein-Fonseca 7,10 , Mark Boughey 11 , Andri Christen 12 , Nora Lüthi 12 , Martina Egloff 12 , Steffen Eychmüller 12 , Sofia C Zambrano 12,29 , Gustavo G De Simone 13 , Eline E C M Elsten 1,14 , Eric C T Geijteman 1,14 , Iris Pot 14 , Carin C D van der Rijt 14 , Carl Johan Fürst 15,16 , Birgit H Rasmussen 15 , Maria E C Schelin 15,16 , Christel Hedman 15,16,19 , Gabriel Goldraij 17 , Svandis Iris Halfdanardottir 18 , Valgerdur Sigurdardottir 18 , Tanja Hoppe 20 , Melanie Joshi 20 , Julia Strupp 20 , Raymond Voltz 20, 26–28 , Maria Luisa Martín-Roselló 7,21 , Silvi Montilla 22 , Verónica I Veloso 22 , Vilma Tripodoro 13,22 , Katrin Ruth Sigurdardottir 3,23 , Hugo M van der Kuy 24 , Lia van Zuylen 25 , Berivan Yildiz 1 , Agnes van der Heide 1 , Misa Bakan 2 , Michael Berger 6 , John Ellershaw 5 , Claudia Fischer 6 , Anne Goossensen 8 , Dagny Faksvåg Haugen 3,4 , Rosemary Hughes 5 , Grethe Skorpen Iversen 3 , Hana Kodba-Ceh 2 , Ida J Korfage 1 ,Urska Lunder 2 , Stephen Mason 5 , Tamsin McGlinchey 5 , Beth Morris 5 , Inmaculada Ruiz Torreras 7 , Judit Simon 6 , Ruthmarijke Smeding 5 , Kjersti Solvåg 3 , Eva Vibora Martin 7 .

1 Department of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.

2 Research Department, University Clinic of Respiratory and Allergic Diseases Golnik, Golnik, Slovenia.

3 Regional Centre of Excellence for Palliative Care, Western Norway, Haukeland University Hospital, Bergen, Norway.

4 Department of Clinical Medicine K1, University of Bergen, Bergen, Norway.

5 Palliative Care Unit, Institute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK.

6 Department of Health Economics, Center for Public Health, Medical University of Vienna, Wien, Austria.

7 CUDECA Institute for Training and Research in Palliative Care, CUDECA Hospice Foundation, Malaga, Spain.

8 Informal Care and Care Ethics, University of Humanistic Studies, Utrecht, The Netherlands.

9 Arohanui Hospice, Palmerston North, New Zealand.

10 Group C08: Pharma Economy: Clinical and Economic Evaluation of Medication and Palliative Care, Ibima Institute, Malaga, Spain.

11 Department of Palliative Care, St Vincent's Hospital Melbourne, Fitzroy, Victoria, Australia.

12 University Center for Palliative Care, Inselspital University Hospital Bern, University of Bern, Bern, Switzerland.

13 Research Network RED-InPal, Institute Pallium Latinoamérica, Buenos Aires, Argentina.

14 Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus MC University Medical Center Rotterdam, Rotterdam, The Netherlands.

15 Institute for Palliative Care at Lund University and Region Skåne, Lund University, Lund, Sweden.

16 Division of Oncology and Pathology, Department of Clinical Sciences, Lund University, Lund, Sweden.

17 Internal Medicine/Palliative Care Program, Hospital Privado Universitario de Córdoba, Cordoba, Argentina.

18 Palliative Care Unit, Landspitali—National University Hospital, Reykjavik, Iceland.

19 Research Department, Stiftelsen Stockholms Sjukhem, Stockholm, Sweden.

20 Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.

21 Group CA15: Palliative Care, IBIMA Institute, Malaga, Spain.

22 Institute of Medical Research A. Lanari, University of Buenos Aires, Buenos Aires, Argentina.

23 Specialist Palliative Care Team, Department of Anaesthesia and Surgical Services, Haukeland University Hospital, Bergen, Norway.

24 Department of Clinical Pharmacy, Erasmus MC, University Medical Center, Rotterdam, The Netherlands.

25 Department of Medical Oncology, Amsterdam University Medical Center, Amsterdam, The Netherlands.

26 Center for Integrated Oncology Aachen Bonn Cologne Dusseldorf (CIO ABCD), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.

27 Clinical Trials Center (ZKS), Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.

28 Center for Health Services Research (ZVFK), Faculty of Medicine and University Hospital, Cologne, Germany.

29 Institute for Social and Preventive Medicine (ISPM), University of Bern, Bern, Switzerland.

This work is supported by the European Union's Horizon 2020 Research and Innovation Programme under Grant agreement no. 825731.

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• Simon Allan
• , Pilar Barnestein-Fonseca
• , Mark Boughey
• , Andri Christen
• , Nora Lüthi
• , Martina Egloff
• , Steffen Eychmüller
• , Sofia C. Zambrano
• , Gustavo G. De Simone
• , Eline E. C. M. Elsten
• , Eric C. T. Geijteman
• , Carin C. D. van der Rijt
• , Carl Johan Fürst
• , Birgit H. Rasmussen
• , Maria E. C. Schelin
• , Christel Hedman
• , Gabriel Goldraij
• , Svandis Iris Halfdanardottir
• , Valgerdur Sigurdardottir
• , Tanja Hoppe
• , Melanie Joshi
• , Julia Strupp
• , Raymond Voltz
• , Maria Luisa Martín-Roselló
• , Silvi Montilla
• , Verónica I. Veloso
• , Vilma Tripodoro
• , Katrin Ruth Sigurdardottir
• , Hugo M. van der Kuy
• , Lia van Zuylen
• , Berivan Yildiz
• , Agnes van der Heide
• , Misa Bakan
• , Michael Berger
• , John Ellershaw
• , Claudia Fischer
• , Anne Goossensen
• , Dagny Faksvåg Haugen
• , Rosemary Hughes
• , Grethe Skorpen Iversen
• , Hana Kodba-Ceh
• , Ida J. Korfage
• , Urska Lunder
• , Stephen Mason
• , Tamsin McGlinchey
• , Beth Morris
• , Inmaculada Ruiz-Torreras
• , Judit Simon
• , Ruthmarijke Smeding
• , Kjersti Solvåg
•  & Eva Vibora-Martin

Contributions

AG conducted the interviews and focus group interview, BY took field notes during the focus group interview. BY performed the qualitative analyses, drafted and revised the article. AVDH, AG, GSI, DFH, RS, CF, JS, MB, TMG, JE, EVM, IRT critically reviewed the manuscript for important intellectual content and provided feedback on versions of the manuscript. iLC contributed to the design of the study. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Berivan Yildiz .

Ethics declarations

Ethics approval and consent to participate.

The study has been conducted in accordance with national and international regulations and guidelines, including the Declaration of Helsinki, and the International Conference on Harmonisation (ICH) guidance on Good Clinical Practice (GCP). The iLIVE study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries:

Medical Research Ethics Committees United (MEC-U) (R20.004), The Netherlands.

Regional Committee for Medical and Health Research Ethics South East D (35035), Norway.

Komisija Republike Slovenije za Medicinsko etiko (0120–129/2020/3), Slovenia.

Comité de Ética de la Investigación Provincial de Málaga, Hospital Regional Universitario de Malaga, Spain.

Health Research Authority (HRA) and Health and Care Research Wales (HCRW) (272927), UK.

Written informed consent was obtained from all individual participants in this study.

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Yildiz, B., van der Heide, A., Bakan, M. et al. Facilitators and barriers of implementing end-of-life care volunteering in a hospital in five European countries: the iLIVE study. BMC Palliat Care 23 , 88 (2024). https://doi.org/10.1186/s12904-024-01423-5

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Published : 02 April 2024

DOI : https://doi.org/10.1186/s12904-024-01423-5

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