Abstract
Context
Many family caregivers are not prepared for the death of their family member or friend. Palliative care services tend to emphasize the patients' preparation for death rather than caregivers' preparation for, or living after, death. Caregivers’ perspectives on anticipating and preparing for death are under-researched, despite preparation being associated with better bereavement outcomes.
Objectives
The objective was to explore family caregivers’ preparations for death.
Methods
A total of 16 family caregivers of people in receipt of palliative care participated in semi-structured, face-to-face interviews. Transcripts were coded and analyzed using grounded theory techniques.
Results
Analysis yielded two overarching themes: Here and Now centered on the caregivers’ focus on the multidimensional and all-consuming nature of caregiving for someone who is near death. Negotiating the Here/After described the tension the caregivers faced in vacillating between focusing on the care during the illness trajectory (Here) and worries and plans for the future (After).
Conclusion
This exploratory study is the first to focus solely on family caregivers’ experiences of preparing for a death. The caregivers described the complexities of trying to prepare while feeling overwhelmed with demands of caregiving throughout an unpredictable illness trajectory. The caregivers in the present study were cognitively prepared, some were behaviorally prepared, but emotional preparedness was challenging. Services should not assume that all family caregivers are well-prepared for the death. Caregivers would likely benefit from the assessment and promotion of their death preparedness.
Key Words
After a death, most bereaved caregivers adapt well to their loss, but about 6%–8% experience grief complications that may indicate elevated levels of distress and psychiatric symptomatology.
1
, 2
, 3
Caregivers' awareness of the impending death is operationalized as preparedness for death and anticipatory grief.4
Preparedness for death is usually defined as the caregiver's readiness for the impending death of the care recipient5
and sometimes defined as forewarning.6
The term anticipatory grief was proposed to describe the “grief work” that caregivers engage in before bereavement7
; however, anticipatory grief does not predict post-loss functioning and there are calls for it to be renamed pre-loss grief.6
Preparedness for death is a multidimensional construct that encompasses medical, psychosocial, spiritual, and practical matters.
8
One study used focus groups and surveys with patients, health care providers, and bereaved caregivers to show that preparation comprised medical knowledge (knowing what to expect about the patient's physical condition, knowing the doctor is comfortable talking about death) and practical issues (naming someone to make decisions, making financial arrangements, having treatment preferences documented).9
Another study based on interviews primarily with bereaved caregivers who had cared for terminally-ill patients described preparedness as having cognitive (awareness of symptoms and prognosis), affective (emotional preparation), and behavioral dimensions (engagement in tasks related to funeral planning, wills, and finances).10
Although family caregivers are typically forewarned of the death, they may not be prepared for it. Studies show that a large minority of bereaved caregivers, ranging from 16%
11
to 23%,5
report being unprepared for the patient's death. One study of current caregivers' preparedness for death showed that 17% felt unprepared for the impending death.12
Bereaved caregivers commonly report feelings of shock and trauma months after bereavement after terminal illness.13
Preparedness for death is important because caregivers' low preparedness is associated with post-death complicated grief, depression, and anxiety.6
, 14
, 15
, 16
This relationship between caregiving and post-death adjustment is overlooked.
17
, 18
, 19
Within palliative care research and practice, there is a tendency to assume that family caregivers are prepared for the death of the person for whom they care. Health professionals typically refer to deaths from illness as “expected”, 21
, 22
yet these deaths may be experienced as unexpected and shocking by caregivers who are focused on caregiving rather than preparing themselves for bereavement.13
Preparedness for death is measured using the Preparedness of Caregiving Scale23
or a single-item retrospective question.14
Although the Preparedness of Caregiving Scale is multidimensional, it was not developed for use in end-of-life care, and therefore does not address impending death. On the other hand, the single-item addresses impending death directly, but not the multidimensional nature of preparedness. Given that no study has focused solely on current caregivers' experiences of preparing for an impending death, we aimed to explore current family caregivers’ preparation for the death of the person for whom they care.Methods
Design
The caregiving and bereavement study is a longitudinal, prospective, mixed-methods study of family caregivers' bereavement.
24
Caregivers completed questionnaires at four time points—once before the death and three times post-death (three to four, six to seven, and nine to 10 months). After the first time point, before the death of the person, caregivers were invited to participate in an interview to explore preparation for the death of the care recipient. These interview data form the basis of this study. The qualitative component was informed by social constructionism, which acknowledges that “reality” is constructed rather than objective.25
Ethics approval was gained from South Metropolitan Heath Service, Bethesda Hospital, Hollywood Private Hospital, and Curtin University, and all participants provided informed consent. Three palliative care services participated—two in-patient services in a metropolitan area and one home-based service in a regional area. Family caregivers were eligible if they were adults, could read and communicate in English, and were caring for someone receiving palliative care who was described by the service as stable, with no present deterioration in health status. As stipulated by the ethics committees, nurses invited eligible family caregivers to participate in the study; response rates cannot be calculated because of these third-party invitations.
Data Collection
We developed a semi-structured interview schedule to explore caregivers' preparation for death. Questions included: To what extent do you feel prepared, when the time comes, for [name's] death? Is there anything that has helped you feel prepared? Is there anything you think would help you feel more prepared? Do you think being prepared will help you when the time comes?
The first author (an experienced end-of-life interviewer) conducted all interviews and optimized sensitivity in inquiring about emotionally difficult topics. Interviews were conducted at a mutually convenient time. Care was taken to demonstrate empathy, but not to assume understanding the participants’ lived experiences. Each participant received information about appropriate services and a $10 voucher to cover parking costs, in line with other studies of carers (e.g., Ref.
26
). All interviews were digitally audio-recorded and professionally transcribed. The first author checked all transcripts for accuracy.27
Data Analysis
Analysis of the interview transcripts commenced shortly after each interview. Analysis was driven by the three grounded theory techniques—coding, memoing, and diagramming.
28
Coding involved the inductive development of categories from the data, which were then linked into themes. Memo writing aided the exploration of commonalities and differences in the data. Diagramming resulted in a visual representation of the relationships between the codes, categories, and themes generated from the data pool and assisted in identifying relationships between them. The credibility, auditability, and fittingness of the analytic process were optimized via engaging in continual immersion in the data and maintaining an audit trail that included summaries and memos demonstrating data abstraction and reduction.29
The first author coded all transcripts and emerging categories, themes, and illustrative extracts were discussed as a team. Interviews and analysis occurred concurrently and continued until data saturation (where no new themes/categories were extracted from the data). The data are reported in line with the consolidated criteria for reporting qualitative research guidelines.30
Results
Sixteen caregivers participated in interviews lasting between 20 and 60 minutes (M = 42, SD = 11). Their ages ranged from 45 to 77 years (M = 64.44, SD = 8.55). Length of the patients’ illness ranged from one to 480 months (Mdn = 17.5) and the majority had a cancer diagnosis. The time from the interview to patient death ranged from one to 255 days (Mdn = 15). Period of caregiving ranged from three months to several years (Table 1). Analysis resulted in the following two overarching themes: 1) The Here and Now and 2) Negotiating the Here/After.
Table 1Demographics for Participants, n = 16
| Variable | N | % |
|---|---|---|
| Gender | ||
| Male | 4 | 25.0 |
| Female | 12 | 75.0 |
| Marital status | ||
| Single/never married | 1 | 6.3 |
| Married/de facto | 15 | 93.8 |
| Cultural background | ||
| Australian | 10 | 62.5 |
| Other English-speaking | 6 | 37.5 |
| Usual employment | ||
| Paid employment | 5 | 31.3 |
| Pensioner/retiree | 11 | 68.8 |
| Current employment | ||
| Paid employment | 5 | 31.3 |
| Pensioner/retiree | 10 | 62.5 |
| Other (carer's allowance) | 1 | 6.3 |
| Relationship to patient | ||
| Spouse/partner | 10 | 62.5 |
| Other family (adult child) | 5 | 31.3 |
| Other (friend) | 1 | 6.3 |
| Length of palliative care | ||
| Less than 1 week | 1 | 6.3 |
| Between 1 week & 1 month | 3 | 18.8 |
| Between 1 month & 6 months | 6 | 37.5 |
| Between 6 months & 1 yr | 3 | 18.8 |
| More than 1 yr | 3 | 18.8 |
| Broad diagnostic category | ||
| Cancer | 13 | 81.3 |
| Lung disease (e.g., scleroderma) | 3 | 18.8 |
Theme 1: The Here and Now
The Here and Now theme centered on the multidimensional nature of caregiving for someone who is near death and comprised four categories—privilege of caregiving, caregiving as all-consuming, family cohesion and conflict, and experiences of health and social services.
Privilege of Caregiving
Caregivers noted many positives they experienced as carers, including feelings of gratitude and privilege and described caregiving as a gift to the care recipient.
I'm privileged that I can look after my father because there's a lot of people out there that would love to look after their family members, but they just can't afford to … I've just been lucky enough I've been able to do it. (ID9)
It's a pleasure to do. One of her biggest fears was that she never wanted to go to a nursing home and one of my greatest gifts out of all this is that I have kept her home for 4 months and it is privilege to do it. (ID4)
Caregiving as All-Consuming
Despite the privilege of caregiving, participants reported that caregiving consumed all aspects of their life and required juggling numerous demands. As such, the caregivers described the physical and emotional effects of caregiving and the considerable disruption to normal routines.
It's impacted my life totally. I have no social life … I do get very down at times [and when I do go out] I'm always looking at my watch to hurry back home again. There is no pleasure in that. (ID15)
I do the shopping, cooking, and taking her to the doctor. She had [service] to shower her, administer for medications. I get up and give her breakfast and leave her lunch prepared. I come back at 5.30 pm and cook dinner and then I finish the washing, ironing, and that sort of stuff. So for the last three months it's been like that and getting up to her 4–5 times a night. And working full-time. (ID4)
Family Cohesion and Conflict
Most participants described feeling supported by their families who assisted with, or supported them, in providing care. However, some participants did not have any family and sometimes the tasks of caregiving strained relationships with family members and friends.
The whole family is pretty supportive so it's been good. We just take it one week at a time. We do the roster for that week and juggle things around. (ID3)
It's been a bit of a strain between my husband and myself because I'm the only child; there is only me and mum relies on me for everything. (ID8)
Some of my friends have questioned why I'm doing it or called me mad for giving up my quality of life. You do get a backlash in that respect. (ID4)
Experiences of Health and Social Services
Most participants were satisfied with the quality of clinical care received by the care recipient. Participants described palliative care in glowing terms, and, in particular, noted the expert end-of-life knowledge and compassionate, honest communication style. However, other services ranged in quality; some doctors were described as blunt and lacking empathy and some hospitals were described as under-resourced. Difficulties with traveling to appointments, the costs of parking, and access to relevant information were noted.
[Palliative care] is unbelievably brilliant … I can talk to them because they are dealing with people like this every day who are going through the same thing. They can communicate with you. (ID12)
The oncologist was very abrupt and didn’t sugar coat nothing. One day she was on the phone talking to some other department about him and it was like he wasn’t even in the room. No compassion whatsoever. (ID2)
I feel [hospital] let him down to some extent. The doctor said he needed immediate attention but there were no beds and no staff so they let him go. (ID1)
It's a long way [from home] and it's expensive to park. It's costing us $100 a week. (ID8)
The main problem is that you have to know what's available before you can ask. Nothing is just offered. (ID11)
Theme 2: Negotiating the Here/After
Negotiating the Here/After describes the tension the caregivers faced in vacillating between focusing on the care during the illness trajectory (as described in the Here and Now theme) and worries and plans for a future that will include the death of the care recipient and its consequences (the After). This theme had four categories—unpredictable trajectory of illness, trying to prepare while being unable to plan, preparing while living with hope and fear, and self-reproachment over a future orientation.
Unpredictable Trajectory of Illness
Caregivers described differences between prognoses and the reality of the illness trajectory. Many ups and downs made it difficult to anticipate what might come next in the illness trajectory, when the death might occur, and its circumstances.
At the moment he's up and down like a yo-yo. He might have one good day and then he might have 3 or 4 really, really bad days. (ID10)
It's just a wait-and-see game. We just take one day at a time … you never know when it's coming. (ID11)
I've faced that a few times thinking he was going. I have thought it was going to happen, but it hasn’t happened and at the moment he seems to have plateaued a little bit. Now I just take it as it comes. I have no idea. And nobody will tell you anything. (ID15)
Trying to Prepare While being Unable to Plan
The unpredictable nature of the illnesses meant that participants had difficulties making and enacting plans. Participants who had previously been bereaved expressed that this did not help them feel more prepared. Those who had made plans typically focused on practical arrangements such as making wills and planning funerals. Most acknowledged that emotional preparedness was more difficult than practical preparedness, given the state of flux and fluidity.
About a month ago I thought she was going to die, to be honest. They gave her antibiotics and she's going really well now but, it sounds terrible to say it, but I was sort of planning things, you know, and now I've got to stop. (ID7)
I lost my dad very suddenly when I was 19. I wasn’t prepared for that. It was like being knocked unconscious and this one is like being strangled because you can't breathe. You know it's happening but you can't prepare for it; you don’t want it to happen. I'm not prepared for her not to be here, to never see her again. I'm not prepared for that. (ID14)
We've done a little bit of planning. We know mum's wishes for the Will and I'm executor of the Will … The other thing in the back of our minds is we need to prepare for the funeral. Apart from that I don’t know. (ID3)
We were going to organise the funeral [in advance] but I haven’t had time, you know? I haven’t had time to get on the computer, I haven’t had time to do anything and now I'm exhausted. I can't be bothered doing anything. (ID13)
I don’t think anything, to be honest, prepares you … I know that when it happens we will be sad so I suppose we are as prepared as we are ever going to be. (ID8)
Preparing While Living With Hope and Fear
Participants described attempting to prepare while experiencing hope concerning the care recipient's place and quality of death, but knowing there was no hope of recovery. They also expressed fear of the unknown, doubts about the preparations made, and concerns that engaging in too much preparation might “rush” the death. Some participants were fearful of the future without the care recipient. Participants who were religious were consoled by their beliefs while those who were not commented that having religious beliefs might have helped in providing them with hope.
I'm at peace that I've done everything I could possibly do for her and everything has been put in place exactly the way that she wants it to be. It was her wish to die at home but that's not going to happen. There is no hope. (ID4)
I wondered if I should put [his clothes] away in drawers and I thought, no, I know he is going to die, but I'm making death come closer because I'm putting things in bags. (ID13)
There is fear in the future of world without them in it. That's the only world I've ever known and I don’t know how to be in a world without them. I feel quite embryonic, to be honest, and new. (ID16)
Our faith has a big impact because if you have something to look forward to, there's hope. Terminal illness can take hope away but with is, what we believe, we still have that hope and something to look forward to. (ID5)
I don’t have any religious belief whatsoever. If only I was religious, if only I could believe, or even be half-convinced. (ID6)
Self-Reproachment Over a Future Orientation
Some participants expressed self-reproachment for looking toward the future. They described feelings of discomfort in looking for a new job or a romantic partner while the care recipient was still alive, guilt about looking forward to the end of caregiving and experiencing joy in life once again. Some also expressed concern that others might judge them if they “moved on” too quickly after bereavement.
It's horrible to think the only way it's going to end is if she dies. And that's horrible because I don’t want that. I feel guilty thinking that. (ID14)
I'm having thoughts which in some ways trouble me. I'm going to go back to work and yesterday I was thinking of typing up a job application. And she isn’t cold yet and there I'm thinking [pause] it, it, it appals me. I actually don’t want to be on my own for the rest of my life and I've been thinking of, um, I know some people and [I think], oh they're a lovely person. But when you're in a partnership you think of lovely people [pauses]; when you're not in a partnership you think of lovely people in a different way. (ID6)
I feel bad that I'm looking forward to joy. I'm aware I'm a bit flat and I want to feel that spark in life again [but] sometimes I can feel the vacuum that is going to be there. (ID16)
I worry about her family looking at me to see what I'm going to do, and what is a reasonable amount of time to put things in motion. (ID7)
Discussion
Much of the caregivers' experience in the Here and Now is well-established in the caregiving literature,
31
, 32
including positive aspects of caregiving,33
, 34
physical and emotional exhaustion,35
, 36
experiences of social and professional support,35
, 36
and restrictions on the ability to engage in social and recreational activities.37
The caregivers understood that the care recipient's illness was terminal and therefore were forewarned of the death. However, being forewarned does not mean the caregiver is prepared. The study adds an understanding of the complexities of trying to prepare while feeling overwhelmed with demands of caregiving throughout an unpredictable illness trajectory. The unpredictable trajectory of the illness and feeling consumed by the care complicated preparations for the death and explains why a substantial minority of family caregivers are not prepared for the death of their family member.5
, 11
, 12
To be well-prepared, caregivers must be cognitively, behaviorally, and emotionally prepared.10
The caregivers in the present study were cognitively prepared (i.e., were aware of the impending death), some were behaviorally prepared (e.g., had engaged in funeral planning), but emotional preparedness was challenging. These components of preparedness may have different trajectories. The vacillation between a focus on the illness and demands of caregiving (Here) and the preparations for the future (After) has hallmarks of the Dual Process Model of grief, which describes the oscillation between loss and restoration foci as central to grief processes.38
The data show that, for family caregivers, the oscillation between foci occurs before bereavement. Given that a loss orientation after bereavement is predictive of grief complications,39
future research could investigate if caregivers' focus on the loss at the expense of restoration foci may also predict these deleterious outcomes.It is important that palliative care services do not assume that all family caregivers are well-prepared, particularly emotionally. Preparedness for death requires good communication between caregivers and their health care team
10
and is associated with being well informed about the impending death, engagement in financial arrangements, and participating in patient care,11
and better bereavement outcomes.14
, 15
, 16
Caregivers of patients who engaged in Advance Care Planning report feeling more prepared16
and Advance Care Planning could provide a mechanism for promoting preparedness for death,40
particularly if it encompasses the multidimensional nature of preparedness. A continuum of support, from caregiving to post-death, lends itself to palliative care services that have the opportunity to assess caregivers' grief and provide support, or refer appropriately, before the patient's death.41
, 42
, 43
Although there are tools to assess caregivers' preparations for caregiving,44
preparedness for death is typically assessed subjectively and the multidimensional nature of preparedness is overlooked. The provision of targeted support is important because palliative care services are challenged by decisions about whom to offer bereavement interventions, what supports to offer, when to offer them, and for how long.45
Palliative care research is difficult because of recruitment issues and ethical considerations.
46
Nevertheless, caregivers usually characterize participation in research as helpful and not harmful.46
, 47
, 48
, 49
Although the sample size was small and non-random, caregivers were drawn from several palliative care services across a large geographical area and data saturation was reached. Time from the interviews to the death varied widely, despite all patients being palliative and described as “stable” by their palliative care service, and this is likely due to the difficulties in prognostication.50
The average duration of interviews was less than of interviews with bereaved caregivers (e.g., Ref. 35
), and this is likely due to caregiving tasks limiting opportunities for data collection.46
We considered the effects of length of illness, time from interview to death, and demographic variables on the data, but did not identify such patterns due to the sample size. These could be investigated in larger studies. Further exploration of the effect of preparation for death on bereavement outcomes would help services to provide appropriate supports to family caregivers.Disclosures and Acknowledgments
The authors acknowledge and express their deepest gratitude to the participants of this study. The authors thank the palliative care services for their interest in this research and for assisting them in recruiting participants.
This study was funded by an Australian Research Council Discovery Early Career Researcher Award (DE120101640) awarded to Lauren J. Breen.
The authors declared no potential conflicts of interest.
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Publication history
Published online: February 27, 2018
Accepted:
February 20,
2018
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© 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc.
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