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The Lived Experiences of Family Caregivers of Persons Dying in Home Hospice

Support, Advocacy, and Information Urgently Needed

McFarlane, Judith DrPH; Liu, Fuqin PhD

Author Information
Journal of Hospice & Palliative Nursing: April 2020 - Volume 22 - Issue 2 - p 145-151
doi: 10.1097/NJH.0000000000000632
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Abstract

Place of death in America is changing. An estimated 50% of Medicare beneficiaries died in the hospital in the 1980s, and fewer than 20% (19.8%) in 2015.1 Concurrently, hospice use was negligible in the 1980s and increased to 50% in 2015.1 It is also known that 80% of Americans want to die at home. Yet, approximately only 20% of Americans do die at home.2 Why is there a discrepancy between the low percentage of Americans who die in the home and the many more who want to do so? Age variation is a reported factor. Home death is highly desired among older persons, the age group most likely to die.3 Individual preference is not static. People's preference for place of death changes toward the home as their illness progresses.4

Although countries' health care resources partly explain the place of death of people,5 the probability of a person dying at home also depends on family care providers' willingness and capacity to offer hospice care.6 Family caregivers are heavily involved in provision of end-of-life care. Stajduhar7 reported that family caregivers can provide up to 80% of the end-of-life care. They are considered as backbone of hospice care during the last period of one's life.8 Thus, palliative home care is logical. Study shows that palliative home care is effective in enabling patients to spend the final period of their lives at home and reduced the consumption of hospital resources.9 However, home deaths have been decreasing and are forecasted to decrease further if no interventions are implemented to build home hospice care capacity.10,11

Although dying at home is considered a “good death,“5,12 there are different dimensions pertaining to what constitutes a good death. According to the Institute of Medicine, a good death is “one that is free from avoidable distress and suffering, for patients, family, and caregivers; in general accord with the patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical “standards.”13 Thus, it is important to note that factors affecting the preference of dying at home differ and health care needs to meet these preferences.14 There is ample evidence on home as the preferred location of death. Little is known about how well the home preference is met. Family members' lived experience can inform on the challenges and needs of family caregivers toward enabling a home death.

End-of-life care policies support the home as the most desirable place of death15,16; however, policies fail to acknowledge the impact of home hospice caregiving on the family.3 Hospice care standards focus on the dying person.17 No recommendations for family caregivers were found despite family caregiving during end of life required if persons are to die at home.18,19 Family caregiving for home-based hospice care until death requires many skills that are poorly described.3

To promote evidence-based policies and programs to enable home hospice death, there is an urgent need to understand the experiences of family caregivers. The purpose of this research is to learn what are the challenges family caregivers confront when they decide to deliver hospice care and during the actual delivery of the hospice care.

METHODS

Design

This study used descriptive phenomenology to document the experience of family caregivers as they delivered home hospice care. Developed by Husserl, descriptive phenomenology is both a philosophy and methodology used to explore and describe the lived experiences of individuals.20,21 Three philosophical underpinnings are key to descriptive phenomenology, and these are the natural attitude, intentionality, and the phenomenological reduction. According to Husserl,22,23 the natural attitude means experience occurs within the context of the world the individual is engaged with. From a phenomenological perspective, intentionality is consciousness of something as something. Husserl22,23 viewed intentionality as an individual's knowledge, experience, and perceptions of the world as a comprehensive intentional object. Phenomenological reduction is a process where suspension of one's own beliefs regarding the phenomenon of interest occurs. It was viewed by Husserl as a means of confirming epistemological assumptions about how knowledge is viewed within consciousness. Phenomenological reduction allows one to “go to the things themselves,” by bracketing the natural attitude to transcend subjective experience, theories, and suppositions.20 Through bracketing, the essence of the phenomena will be identified, which in turn allows the researcher to be open to the reality of the research participants.20,21

In recent years, phenomenology is increasing in popularity in nursing research. The traditional approach developed by Husserl experienced some evolutions since its inception. As a devotee of Husserl, Giorgi24 developed a data analysis framework to structure the phases of phenomenological research. Giorgi25 argues that his method of descriptive phenomenology based on Husserlian phenomenology is more faithful to the data. The study used face-to-face, in-depth, interview data collection method. The researchers developed the interview guide based on literature evidence26-29 and refined through expert opinion.

Study Setting and Participants

This study was set in a large urban area with a population exceeding 4 million. Following institutional review board approval, purposive sampling was used to recruit participants. Participants were purposively sampled to ensure recruitment of family caregivers with a lived experience of providing home-based hospice care. Family caregivers who are English speaking and had offered home-based hospice care for a minimum of 5 days to the person who died at home were recruited. The study was initially advertised through a large hospice facility to reach potential participants who had a lived experience of the phenomenon. The hospice facility mailed a total of 220 study letters to family caregivers, who met the study criteria, in its databases, which resulted in a total number of 8 responses from potential participants. Additionally, the researchers also used snowball sampling via local community centers and churches, which resulted in 10 responses. Phone screening was conducted to check eligibility before the face-to-face interview. A total of 18 potential participants responded to the study invitation; all 18 met the inclusion criteria. Prior to commencing interviews, informed signed consent was obtained by the researchers. Recruitment lasted for 6 months when the study analysis reached saturation. Demographic information of participants indicated diversity of backgrounds. The 18 caregivers ranged from 36 to 81 years of age, with a median of 61 years. Twelve caregivers (67%) were female, and 6 (33%) were male. Among the 18 caregivers, 11 (61%) were a spouse, or ex-spouse, to the deceased, and 7 (39%) were a child of the deceased. Regarding ethnicity, 15 (83%) of the caregivers identified as white, 2 caregivers (11%) identified as black/African American, and 1 caregiver (6%) identified as Latino. The deceased ranged in age from 44 to 92 years, with a median of 78 years. The number of days the deceased received home hospice ranged from 5 to 120 days, with a median of 11 days.

Data Collection

Researcher M. conducted the interviews. Each interview took place at a private location and lasted between 30 and 70 minutes. The interview guide had 4 open-ended questions. Participants were asked to describe their experiences with providing home-based hospice care to family members, starting from making the decision to bring the person home to the time when the person died. Their experiences with the challenges they faced were of particular interests to the researchers. This overall framework of structuring the interview questions aligns with the philosophical principle of intentionality, in which the participants' experience of providing home-based hospice care was viewed as a comprehensive intentional object. Said another way, participants' consciousness may be understood as being intentionally directed toward the object, which is the provision of home-based hospice care. The opening question was “As a primary provider of hospice care in the home, what challenges did you experience when deciding to deliver hospice?” A follow-up question was “Please describe how you handled each challenge.” Then, participants were asked to describe challenges they experienced when delivering the hospice care and how they handled each challenge. After the participants talked about their experience of the challenges, they were asked, “What do you recommend for a positive hospice experience for family members?” Lastly, participants were asked to describe how their hospice care experience impacted them.

The interviewer further clarified and elucidated the descriptions of phenomenon provided by the participants. During the interview, the interviewer was mindful to adopt a neutral body position and tone of voice to avoid influencing participant responses. The technique of establishing rapport with participants to make them feel at ease during the interview was implemented. The interviewer also suspended any prior conceptualizations of personal assumptions about providing home-based hospice care in order to stay true to the concept of bracketing in descriptive phenomenology. This practice of bracketing occurred from the beginning of data collection until after data analysis was complete. Additionally, the interviewer also wrote field notes during the interview. Periodic debriefing among research team members also took place to enhance phenomenological reduction. All interviews were audio-recorded and transcribed verbatim according to standard qualitative methods.21

Data Analysis

Data analysis of the study used Giorgi's25 4 stages phenomenological approach with an iterative process. The 2 primary researchers conducted data analysis separately and reconciled the findings afterward. The 4 stages include the following: (1) the researchers immersed themselves in the data to get a sense of the participants' descriptions of phenomenon; (2) the researchers divided data into concepts that involved the extraction of individual meaning units; (3) the researchers arranged and expressed data into commonalities of participants' descriptions; and (4) the researchers articulated themes with concepts representing the essence of the phenomenon.

Methodological Rigor

To ensure the study rigor and trustworthiness, Lincoln and Guba's30 framework of quality criteria was used. The researchers employed several strategies to strengthen the trustworthiness of the study. These strategies were guided by the concepts of credibility, dependability, confirmability, authenticity, and transferability.30,31 The researchers maintained philosophical congruency in the identification of the problem, the design of the study, and the execution of the study. The researchers used an audit trail to enhance credibility and dependability. Two researchers (researcher M. and researcher L.) independently verified the transcription and conducted data analysis. Member checking was conducted with 6 caregivers in order to ensure credibility, confirmability, and authenticity. Although transferability or generalizability is not the goal of qualitative research, the researchers kept comprehensive notes, documentation of codes, and quality check notes to enable future comparisons.

Through Giorgi's approach to data analysis, the researchers sought to learn about the challenge family caregivers confront when they decide to deliver hospice care and during the actual delivery of the hospice care. In the research planning stage, the researchers reflected on their own philosophical beliefs regarding bracketing and decided that suspension of their own beliefs about home-based hospice care was possible. This period of self-reflection in the initial stages of research design is important in the process of bracketing. The researchers also practiced the technique of paying full attention to what the participant has to say during data collection. The focus is about the participants and their own lived experiences. Throughout the research process, the researchers were mindful of the goal to elucidate the essences of caregivers' experiences solely through description of participant narratives. These research activities align with descriptive phenomenology, in which understanding the essence of a phenomenon can occur by thoroughly describing it in detail.21 As a result, the study rigor is also enhanced.

FINDINGS

After transcribing each of the interviews, the 2 researchers individually read all transcripts multiple times to identify significant statements that occurred repeatedly. Six overall themes emerged: (1) Hospice Decision Is Guided by Physicians; (2) Resistant to Hospice and Death by Patient and Family; (3) Caregiving is Exhausting; (4) Conflict of Pain, Comfort, and Any Opioid; (5) Needing Support to Survive; and (6) No Regrets and Peace of Mind Follow Death.

Hospice Decision Is Guided by Physicians

The decision for home hospice begins with a physician-family talk. Physicians inform families there is nothing more the doctors can do. Caregiver 6 said, “She (doctor) gave us the talk,” “I do not think there's anything more we can do for you.” All 18 family caregivers reported home hospice was decided by a physician. The family did not request hospice; the physicians recommended. The physician initiated the decision-making process, and all the families complied, explaining “Not my decision, but the physician's decision. The hospital told us that the hospital could not do any more for him, that they would put him under hospice care… It was not my decision … It was decided for me” (6).

Resistant to Hospice and Death by Patient and Family

The decision for home hospice, made by the physicians, was met with resistance by both dying person and family. Caregiver 2 explained, “He did not want interventions but when it came down to you are not going to make it, he wanted to be admitted [to hospital]… he did not want to die… ‘I'm not dying.’” An example of the dying person not wanting to enter hospice care:

I do not want to do that [hospice].” I do not believe what you [physician] say… I'm going to live… He was against this process (hospice) that when the hospice nurses would come, he would not even talk to them… He wanted them (family) to believe that he was fine and that he was going to get through this.

Resistance to hospice from family members adds stress for caregivers. One family caregiver described her daughter's resistance this way: “She (daughter) put him (dying person) in the car and took him to store and made him push (the cart)” (4).

Continued resistance to hospice and death from the dying person and family can cause added tension and stress for the caregiver. Participant 5 best described this tension:

My brother-in-law said to my husband [dying person], “Why don't you just get up and walk more?” I looked at him (brother-in-law) and I said, “Why are you telling him that?” My brother-in-law replied, “Because he just needs to snap out of this…” His mama kept trying to feed him… They (family) didn't want to believe he was dying.

Caregiving Is Exhausting

Caregiving is exhausting of mind and body. Extreme fatigue was reported by all caregivers in the study. Family caregiver 1 used the strongest wording to describe the exhaustion: “Fatigue of caring during the daytime and the nighttime… It evolved to being a 24/7 operation… overwhelming… killing us.”

Family members may choose not to visit or help. When family help is sought by the caregiver, the help may be denied, or offered with guilt or anger. Lack of family help and support adds to caregiver burden. One caregiver described family resistance in the following way:

They (family) did not want to deal with it (death) because their easy way out was, “Well, I do not know what to do with him” …None of us want this job, taking care of our parents… None of my family was going to step up (3).

The dying person may also resist assistance from others adding further burden to the caregiver as explained by the wife caring for her dying husband.

We have a lady to come to clean him and he wouldn't even want the lady—“Why she coming to clean me? Why you can't do it?” I said, “Sweetheart, she is just helping me.” I said, “I can't do this by myself” (5).

Additionally, the dying person may resist restrictions of mobility and comfort treatments, adding to further caregiver fatigue. Participant 1 best described this situation:

He insisted on getting up by himself to go to the bathroom, “Get me out of this damn bed.” …He was so hard-headed and unwilling to ring his bell for us that he got up once and fell… He would not play by anyone's rules other than his own (1).

Nonetheless, family caregivers did not resist the dying person's decisions. Caregiver 2 explained, “You have a person who does not want a feeding tube, and I could not talk him into that,” “I tried to accept him where he was; to be angry or fight with him did not make sense.” Family resistance and strife may not end at death. Not able to reach resolutions on preparing for and after death can cause additional emotional strain and exhaustion for the caregiver. Caregiver 5 talked about family strife:

His family was very mad at me, they fought me, they almost didn't want to come to the funeral… They didn't come (to viewing), and that made me feel so bad, so bad… We (family) argued the whole week; at one point, they (family) wanted me to give them $4000 more to bury him… My oldest son is not speaking to me right now, and that hurts so bad.

Conflict of Pain, Comfort, and Morphine

Comfort care and pain management are central to hospice care. Morphine is frequently given but may be met with fear and ambivalence by the dying, the caregiver, and family members, resulting in conflict. Caregiver 10 explained, “The whole point is for them not to be in any pain.” Yet, family members disagree on the dying person being “too calm or comfortable,” as the caregiver elaborated:

The morphine finally calmed him… [Daughter said] “Don't give him morphine because if you give him morphine that means he going to die” …I [caregiver] say, “I cannot let him be in this kind of turmoil” …The sister-in-law said, “That morphine, it got him glazed; he is not talking no more.” I said, “I can't blame it on the morphine” (5).

Family members are reluctant to give morphine because of their fear of addiction. They worry about overdose and adverse effects. Lack of trust and knowledge contributed to this fear. Caregiver 6 stated, “We (dying person and caregiver) were both worried about an addiction… The nurse said, ‘Honey, you do not have enough time to develop a dependency. You will not get addicted.’” On the other hand, a caregiver explained morphine use in this way: “I know hospice is not in the assisted suicide profession, but sometimes it's the same thing… The only reason I did not give him an overdose [morphine] was did not know what the side effects would be” (6). Interestingly, the worry about morphine addiction also happened among hospice care staff. Family care providers were criticized for giving too much morphine. Caregiver 8 described, “I got criticized by hospice that I was giving him too much morphine because I was trying to stay ahead of the pain.”

Needing Support to Survive

All caregivers voiced the enormity of the workload and the feeling of barely surviving. Caregiver 8 said, “This is an impossible task… All I did was try to survive.” Another caregiver described home-based hospice care as being in a survival mode. Main reasons are lack of preparation and not having assistance:

People need better preparation of what they are going to experience. Not just go in there and think, okay, I'm going to have help, but the truth is you do it all… We had to clean him… we had to change his diaper (14).

All caregivers reported the need for financial assistance to pay care attendants. Caregivers reported spending thousands of dollars from personal funds. Caregiver 4 provided a weekly estimate, “Twelve and thirteen hundred dollars a week came from savings and working.” Caregiver 9 said, “$30 000 or maybe more from my pocket.” Another caregiver 7 talked about hourly rate for getting services, “We had a service at $22 an hour; 60, 70, 80 hours a week starts to add up.” Frequently, the cost was incurred to provide relief so caregivers could sleep. Caregiver 1 said, “We paid $1000 a week just to get a good night's sleep.

In addition to the financial need, emotional support to confirm the worth of caregiving and a confidant who solicited the caregiver's well-being was strongly voiced as needed by many caregivers. For example, participant 8 verbalized, “I just needed a verbal coach. I needed affirmation that I was doing the best that could be done and that, yes, it's hard—yes, this is difficult, and yes, you are doing a good job.”

No Regrets and Peace of Mind Follow Death

Despite the struggles of family caregiving, many confirm lack of regrets and a peacefulness that occur following death. Caregiver 3 said, “I have no regrets… he went very peacefully, and that is all you can ask.” Caregiver 7 talked about having “a lot of peace of mind.” Caregiver 2 described this as follows: “I have no fear of death—my kids have no fear of death,” whereas participant 12 talked about hospice as a good experience, “There are people that think, oh, no I do not want to do that, oh no, And I'm like, ‘Why not?’ It's what I would want too. Now that I've gone through with it, gone through this (hospice) experience, I'm even more for hospice.”

DISCUSSION

Place of death matters to a good death, but family caregivers and their capacity are essential to make a good death possible. This study sought to provide insights from the experiences of family caregivers who offered home hospice and a home death. The overall findings highlighted the high value of home hospice caregiving as family caregivers expressed having no regrets and a peace of mind after death. Caregiving for a home death may help with bereavement.32 The overall findings also confirmed the need to better support family caregivers. The findings agree with the report by Benson et al33 that dying at home presents many challenges for family members. The challenges faced by the caregivers are enormous and include physical exhaustion, emotional stress, social isolation, and financial burden. The urgent need to better support caregivers is consistent with the literature,26,28,34 yet no randomized controlled trials were identified that tested the efficacy of support and advocacy toward resiliency and decreased stress for family home hospice caregivers.

This study indicates the need for more family and dying person involvement in hospice decision. While the literature evidence supports the need for home-based models of hospice,12 the question remains on how to best initiate and conduct the conversation between the health care providers, the dying, and family caregivers. Advance care planning and early hospice enrollment are essential.32 Family and dying person resistance to death and associated stress may be reduced with collaborative decision making between health care providers, family, and the dying.35,36 Stress can negatively impact caregiver quality of life.37

Additionally, this study confirms the dying person may not want nonfamily offering physical care, such as bathing and toileting, indicating the need for extra support and affirmation by hospice staff as to the difficulty of the caregiving role. Respite care for the caregiver is needed, especially at night, to reduce exhaustion and prevent physical and mental fatigue that can result in caregiver stress. More education on pain management, especially on opioids, is indicated. An opioid, such as morphine, is known by the lay public as a powerful drug for pain relief that can be addictive, slow respirations, and cause death. Considerable education and support are needed from hospice staff to educate the caregiver and family regarding dosage and usefulness of any opioid.

Caregivers repeatedly stated the high financial costs of paid care attendants. This finding aligns with the literature report that family caregivers must be recognized and integrated in care delivery and decision making, and supportive services must be expanded and made more widely available to family caregivers.38 Financial assistance for help with toileting, medications, safe transfers, and night assistance is urgent, as is the need for an advocate to focus on the caregiver and offer affirmation, empathetic listening, and supportive encouragement. Efficacy testing of an advocate role toward better coping, mental, and physical health of the caregivers of home hospice care is urgently needed.

Limitations

While strategies were used to strengthen trustworthiness, transferability is a limitation to this study in 2 ways. First, although data saturation was achieved, the sample size was small. Second, the study sample did not reflect the general population composition with regard to race and education. Third, the study talked only to persons who chose hospice; the researchers do not know the experiences of families when the physician initiates hospice discussion and the family refuses. Despite these limitations, the researchers believe this study offers insight into the experiences and urgent needs of family caregivers who provide home hospice until death and as such may be a first such study of a burgeoning group of essential health care providers in America.

Acknowledgments

The authors thank Pastor Mark Miles for helping to secure participants.

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Keywords:

challenges; family caregivers; home hospice

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