When a Desired Home Death Does Not Occur: The Consequences of Broken Promises

Abstract

Background:

Evidence shows that most people prefer to die at home; however, the majority of expected deaths occur away from home. Although home deaths require family caregiver (FCG) commitment and care, we understand very little about their experiences in this context.

Aim:

The study's aim was to gain a better understanding of the experiences of FCGs when circumstances prevented a desired home death for a family member with advanced cancer.

Design:

An interpretive description approach was used. Data collection involved semistructured interviews. Field notes and reflective journaling aided interpretive and analytical processes.

Setting/Participants:

The study was conducted in western Canada and included 18 bereaved FCGs.

Results:

FCGs were committed to the promises made to care for their family member at home until death. These promises were challenged by a lack of preparedness for caregiving, difficulty accessing professional support and information, and frustration with the inadequate help they received. The events that precipitated dying family members leaving their home for hospital or hospice were unexpected and often influenced by FCGs' lack of situation-specific knowledge and ability to cope with complex caregiving responsibilities. FCGs found it extremely challenging to reconcile with breaking their promise to care at home until death and many were unable to do so.

Conclusions:

FCGs' despair about not being able to keep their promise for a home death was related to complicated bereavement. Prospective studies of the experiences of FCGs who are aiming for home deaths are needed to identify both short- and long-term interventions to effectively support death at home.

Introduction

There is a strong societal movement towards home being considered the best place to die;^1–3 however, this requires the commitment and involvement of family caregivers (FCGs) with support from other family members and health care providers.^4–6 Challenges for FCGs include being adequately informed to provide care and make decisions;^5–9 developing and maintaining relationships with paid providers;¹⁰ accessing supports and navigating the health care system; and gaining knowledge regarding pain and symptom management as well as signs of impending death.^3,5 Proot and colleagues¹¹ found that health professionals are not always sensitive to the needs of FCGs and that supports are often insufficient to meet needs.

There are consequences for FCGs providing palliative care at home, and, in particular, when a desired home death does not occur. FCGs have expressed feelings of guilt and failure as well as complicated grief when a home death was not achieved.^12,13 Anecdotal observations suggest that some FCGs who do not achieve their goal of a desired home death may experience psychological difficulties and prolonged bereavement; however, this type of caregiving experience has not been systematically studied.

The aim of this study was to gain a better understanding of the experience of FCGs when circumstances prevented a desired home death for a family member with advanced cancer. For the purpose of this study, home was defined as an individual's house or apartment. FCGs were defined broadly as whoever the terminally ill individual said they were, including immediate family, friends and neighbors.¹⁴

Methods

A qualitative interpretive descriptive approach was chosen because of its ability to illuminate human experience and generate a meaningful interpretation to guide practice.¹⁵ The study received ethical approval. Bereaved FCGs were recruited through notices in local newspapers, churches, websites, and FCG support groups. Inclusion criteria were (1) an adult 19 years or older who provided care to a family member with advanced cancer in their home, (2) the death of the family member occurred in an acute care hospital or hospice, (3) FCG self-report of desire for home death by the FCG and/or dying family member, and (4) English speaking. Recruitment stopped when no new codes emerged during analysis and existing codes were confirmed. The final sample included 18 bereaved FCGs (see Table 1).

Table 1.

Description of Family Caregivers

FCG	n
Gender	Women – 13
	Men – 5
Age	Range: 23–91 years
Education	Less than high school – 1
	High school – 3
	Some postsecondary – 2
	College, diploma – 7
	University, degree(s) – 5
Place of residence	Urban – 15
	Rural – 3
Main activities (could choose more than one)	Caring for family – 4
	Working for pay – 4
	Going to school – 5
	Recovering from illness or disability – 3
	Unemployed, looking for work – 1
	Unemployed, not looking for work – 2
	Retired – 7
FCG report of own health in comparison to others of same age	Excellent – 6
	Very good – 5
	Good – 6
	Fair – 0
	Poor –1
Relationship to the dying person	Spouse – 8
	Child – 4
	Parent – 1
	Sibling – 3
	Other – 2
Cancer diagnosis of dying person	Gastrointestinal – 8
	Lung – 2
	Prostate – 2
	Non-Hodgkins Lymphoma – 1
	Melanoma – 1
	Kidney – 1
	Other – 2
	Primary unknown – 1
FCG proximity to dying family member	Same home as person cared for – 14
	Same community as person cared for – 2
	Different community than person cared for – 2
Duration of caregiving	10 days to 13 years
	Average: 22.6 months
Time between death and interview	2 months to 17 years
	Average: 3.96 years

FCG, family caregiver.

Data collection

Data were collected through a single semistructured, audiorecorded interview in a place of choice (e.g., home, café). Open-ended questions were constructed to explore the caregiving experiences of the participants. Probes were used to explore experiences in more depth, clarify issues, and fill gaps. During interviews conducted in the later stages of this research, questions were included to verify and elaborate preliminary interpretations of the data. Field notes were kept and reflective journaling was maintained in order to guide and document the interpretive description process.¹⁶ Due to potential risks associated with recalling experiences, all participants were provided with a list of available psychological support services.

Data analysis

Interviews were transcribed verbatim. Data collection and constant comparative analysis occurred concurrently.¹⁶ Initial coding resulted in the identification of codes representing discrete aspects of the experience under investigation. These codes were compared and contrasted within and between accounts to identify patterns and relationships in the data, which resulted in a coding framework. Once the coding framework was stable, all transcripts and field notes were coded using QSR International's NVivo 8 qualitative analysis software. Codes were then subject to constant comparison to confirm and elaborate patterns, variations, and dimensions of the FCGs' experiences.^15,17 An interpretive description was developed that included both common patterns and unique aspects of the experience of providing palliative care at home when a home death was desired but did not occur.

Findings

The promise to provide a home death was a dominant and consistent theme in FCG narratives. These promises, however, were challenged by a lack of preparedness for caregiving, difficulty with accessing professional support and information, and frustration with the inadequate help they received. The major themes represented in the FCGs' experiences revolved around their promises: (1) the promise to care for their family member at home until death, (2) unprepared for keeping the promise, (3) pushed beyond capacity, and (4) shattered promises.

The promise to care for their family member at home until death

For many FCGs, it was when they were given tangible proof that the cancer was progressing that they made their promise to care for their ill family member at home until death. Their promise was unconditional and made without hesitation. Once the promise was made, FCGs were steadfast in their efforts to keep it.

The promise idealized the notion of dying at home. It was rooted in the living aspect of dying; being in the comfort and privacy of home spending meaningful time together surrounded by the love of family and friends. One FCG explained:

So my husband said, “I just couldn't imagine saying goodbye to you in a hospital, or having the end, and knowing I was in a strange place and maybe hadn't made it or whatever, to get [home].”…. He just didn't want to be alone…. I was determined I'd keep him at home. (91 years, female)

Unprepared for keeping the promise

FCGs took up the job of caregiver despite having only a vague idea of what the work entailed. It was similar to being thrust into a new position with little or no orientation to what is involved. Discussions with health professionals regarding what FCGs could experience when caring for the dying at home seldom occurred. And even when these conversations occurred, critical information was not necessarily given. One FCG spoke about this limited interaction with their family physician:

It was really hard, because we knew [my husband] was going to die, he wanted to die at home and I wanted him here…. I had talked to [the family doctor] about…whichever one of us went first, we wanted a home death. And he understood that, that was okay, but then it wasn't discussed [further]…by anyone. (74 years, female)

FCGs were unprepared for the amount of work involved, such as arranging and taking their ill family member to medical appointments, managing the laundry and the meal preparation, and maintaining constant communication with family, friends, and health care providers. They had not anticipated physical care such as managing incontinence, bathing, and medications and worried continuously whether they were doing the right things. Yet, at the same time FCGs were often reluctant to talk about their caregiving challenges with health professionals, fearing that their ill family member would not be allowed to remain at home. Over time, FCGs exhausted their personal resources and came to understand that they needed help in order to fulfill their promise to care until death at home.

Unfortunately, when FCGs reached out for help they were frequently unsuccessful. They experienced delays in accessing care, difficulty obtaining adequate support, and variability in responsiveness from health professionals. One FCG explained her loss of trust in the health care system's ability to respond to her family's needs and resulting feelings of frustration and isolation. She understood from the community nurses that help would be available if they experienced a crisis and required guidance or assistance. However, family calls to the nurses often went unanswered; they were too busy and unable to come to the home on short notice.

[Mother] couldn't phone anybody else [frustrated laugh] because she had already been turned away once [by the nurses]. And all it takes really is once to get, “I am too busy, take him to the hospital.” So, we don't ask again. (50 years, female)

Pushed beyond capacity

FCGs were unprepared for the impact of caregiving. FCGs were available 24/7 to their family members and as the magnitude of the work increased, they all became exhausted. At the same time, they became more desperate to fulfill their promise for a home death. They explained that it did not matter how much time it took or how intense the requirement for caregiving became—what mattered was fulfilling their promise. Under the strain of caregiving, often around the clock, the consequences of being unprepared and pushed beyond capacity—relationally, physically, and emotionally—were acute.

Every day, I would set the alarm for every two hours and give him more meds. And sometimes I would sleep downstairs…. But you are so conscious of him moving around, you may as well be in the same room. And I think that is why I had this little episode that sent me to the Emerg, just kind of hit the wall. I had numbness and tingling in one hand and a dizzy spell, and I just thought, you know, this isn't right. I need to check this out. As it was, I think it was just God saying, you can't do this 24/7. (67 years, female)

Shattered promises

For the FCGs in this study, caregiving without adequate support became too difficult. The occurrence of unexpected events such as increased pain, sudden weakness, seizures, breathlessness, confusion, and agitation disrupted their already compromised ability to provide care at home. In these situations, FCGs again reached out for help by calling the hospital, 911, or community and palliative nurses, and were all told to bring their family member into hospital or that it was time for hospice. Addressing the concerns at home was not an option.

For the majority of FCGs, the move of their family member to hospital or hospice was constructed as temporary, just like previous visits. There was an expectation to return home. A few FCGs struggled with awareness that this would likely be a permanent move to hospital or hospice and their family member would die away from home. Even when FCGs were in hospital or hospice, many did not recognize the signs of impending death. One FCG stated, “Nobody said to me, look we should talk about what you might face at the end (91 years, female).”

Although death of their family member in hospital or hospice was described as peaceful, most FCGs were devastated by having let their family member down. Even the few FCGs who realized they had reached the limit of their ability to care at home experienced feelings of unbearable guilt, betrayal, and failure. The distress that death away from home caused was vividly recalled several months to 17 years after the event. One FCG explained that she had cared for her husband for over two years and had never once considered he might die away from home. She described the point when the nurses told her she could not care at home anymore and that her husband should go to hospice.

I felt like I failed him. I still feel that way. We've been together almost, well, 49 years. And the one thing, I mean he didn't ask much of me, and I couldn't do it [softly crying]. (70 years, female)

FCGs believed that if they had support to help them think clearly through the problems they were facing or had been more prepared for caregiving, their family member could have died at home. Further, in hindsight, they believed that if simple interventions such as an IV for hydration, a catheter, a suction machine, oxygen or medications had been offered, they would have been able to keep their promise.

Discussion

This study adds to the small but growing body of research on FCGs who care for a family member dying at home by detailing the experiences of FCGs when they are unable to keep their promise to care at home until death. The promise to provide a home death was of vital importance to the FCGs, a finding supported by others.³ However, this is one of the first studies to describe the consequences of FCGs' deep commitment to keeping their promise. Not only did these promises create a lack of flexibility for caregiving, there were significant and long-term consequences to FCGs when the promise was broken. They experienced profound feelings of guilt, betrayal, disappointment, loss, remorse, and regret. Although the length of time since death may have influenced recall of experiences, the in-depth narratives provided by participants suggest these experiences were still vivid in memory. This study found, as did Stajduhar,¹² that FCGs idealized dying in the home. The archetype regarding dying is about enjoying last days and hours through quiet conversation and finally dying peacefully and comfortably with family present. It was within this idealized picture that FCGs made the promise to care for their dying family member; however, this archetype did not acknowledge their reality of caring for the dying. Similar to other studies, FCGs were unprepared for the enormity of the physical, emotional, and relational challenges of caregiving at the end of life and lacked timely and effective support from health professionals when they needed it most.^11,18–20 Although many FCGs received a variety of palliative services, the support often did not match their needs.

There were few reports of conversations occurring between health professionals and FCGs about caregiving. Farber and colleagues²¹ note that health professionals do a disservice when these conversations are not valued as an expected part of care. What has not been adequately described in the literature is the finding that many FCGs were hesitant to discuss concerns or raise questions with health professionals. Fears that their family member would be removed from their home if health professionals were made aware of the difficulties they were facing with caregiving often deterred FCGs from asking for help. Witnessing their family members' suffering added to caregiving burden. Unrelieved physical suffering was the tipping point that led to leaving the home for care and the shattered promise. Other researchers have recognized the psychological anguish and helplessness FCGs may experience when witnessing their family members' distress.¹³ Hudson¹⁹ found that FCGs who are poorly prepared for their caregiving role have a markedly decreased ability to comfort and relieve suffering of their family member.

The findings point to complexities in defining a good death. The majority of FCGs described their family member's moment of death as peaceful and comfortable, reflecting the tendency toward positive perceptions of the deaths of family members observed by others.²² This may be one mechanism FCGs use to carry on in bereavement. However, it must be noted that the majority of FCGs in this study also experienced the death of their family member with intense feelings of regret because they were unable to keep their promise for a home death. FCGs found it extremely challenging to reconcile with breaking their promise to care at home until death, and many were unable to do so. Kristjanson and Aoun¹³ suggest that memories regarding the palliative care experience may follow family members in the bereavement period, have the potential to complicate their grief, and may leave them with feelings of regret. Many of the FCGs in this study showed signs of complicated bereavement. This finding extends our understanding of one factor that may be associated with complicated bereavement (i.e., a broken promise to care until death at home). However, the finding must be viewed with some caution, because the experience of complicated bereavement may have influenced caregivers to volunteer for the study. Nevertheless, this study supports the importance of including a bereavement assessment regarding a promise to provide a home death and the extent to which this promise was realized. Further, it supports the need for additional quality indicators for care at the end of life beyond those apparent in the literature, such as family perspectives of care and preferred place of death.²³

Many countries have begun to organize their health care systems around the belief that home is the best place to die, but similar to Canada, necessary supports are not keeping pace.^2,24 FCGs' involvement in caregiving is increasingly considered essential and expectations regarding their involvement in care are expanding at an unprecedented rate.²⁵ In this context, family members' choices about becoming caregivers may be preempted and the wishes of the dying person may be privileged, creating significant burden that lasts beyond death. This study highlights that, even with intense commitment to home death, this may be extraordinarily difficult to achieve. Other researchers have noted a discrepancy between FCGs' expectations and the amount and type of professional support that can be realistically provided in the home to support a home death.^26,27 However, one recent study found that palliative medical emergencies can be successfully managed at home with telephone support or, more commonly, a home visit.²⁸ This suggests it may be possible to avoid leaving home for care even when there are symptom crises.

Implications

End-of-life care policy supports individuals having a choice regarding desired place of death.²⁹ The attention to choice must be extended to family members who provide the care on which home death rests. Choice implies that there is discussion and reasonable options, and that there are resources available to support the decisions made. According to this study, the decision to care at home until death was made with minimal involvement from health professionals, and supportive resources were often unavailable when they were needed most. Decision aids have been found to be useful in relation to other health issues and may be a fruitful avenue of investigation to support decision making about home deaths.³⁰ In addition, the study findings indicate that prospective studies of the experiences of FCGs who are supporting home deaths are needed to identify caregiver needs and the outcomes of both short- and long-term interventions aimed at effectively supporting FCGs. Documenting the experiences of FCGs who are able to provide home deaths may also be helpful in determining the factors that make it possible for them to fulfill their promises. Health professionals need to determine if a promise to care at home until death has been made and address the implications of this promise, including the possibility that home death may not be possible. Discussion must occur with both patient and FCG about illness progression, anticipated caregiving needs, how needs may change over time, and resources that can be mobilized to support the promise. Potential limitations in needed support for caregiving must be acknowledged and the promise revisited so that expectations regarding home death can be adjusted as required. Prospective studies of the experiences of FCGs who are aiming for home deaths are needed to identify both short- and long-term interventions to effectively support death at home.

Conclusion

The experiences of FCGs reported in this study highlight the long-standing consequences when they made a promise to care at home until death that they could not keep. The potential of inadequate support leading to increased suffering for both dying family members and their FCGs cannot be ignored. As hospice palliative care is increasingly shifted into homes and caregiving responsibilities handed over to family members, adequate resources and supports must be in place and accessible when they are needed. A commitment to “good” death being home death without an equivalent commitment to preparing and supporting FCGs creates unacceptable suffering and burden for one of the most vulnerable groups in our society.

Footnotes

Acknowledgments

We thank all of the participants for their time and for sharing their experiences. We would also like to acknowledge Dr. P. Cash and Ms. C. Robinson for their contributions to the research process.

This research was supported by a Master's Fellowship from the Psychosocial Oncology Research Training Program and a grant from the Canadian Association of Nurses in Oncology, both to Lorrianne Topf.

Author Disclosure Statement

The authors declare no competing financial interests exist.

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