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Abstract
Background Often, family members and friends gather around a dying hospice patient to say goodbye in what is known as a death vigil. The purpose of this study is to explore the stories and experiences of family caregivers of hospice patients who participated in death vigils.
Methods Qualitative analysis of interviews with 50 hospice family caregivers explored the experiences and memories affiliated with death vigils. Grounded in the Hospice Use Model, a Framework Analysis method was used to analyse transcripts and identify themes to answer the research questions.
Results Hospice family caregivers identified community resources, community health resources, hospice agency factors and individual patient and caregiver factors as impacting their participation in the death vigil and their memory of the experience.
Conclusions Family members perceived and remembered both positive and negative experiences during their death vigil. Their narratives included recommendations for change in the death vigil, including advice for others going through the vigil, changes in operational and clinical care during the vigil and policy changes needed to improve the experience.
- Hospice care
- End of life care
- Palliative Care
- Bereavement
- Communication
Data availability statement
Data are available upon reasonable request. Data available with Data Use Agreement.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Death vigil experiences are remembered by families and consist of both positive and negative feelings.
WHAT THIS STUDY ADDS
Family perceptions of the vigil are impacted by community resources, community health resources, hospice agency factors and individual patient and caregiver factors.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Caregiver narratives demonstrate there is room for improvement in the experience. These improvements have implications for new research, changes in education for families and policy changes for reimbursement.
Introduction
Every day across the USA, hospice families are sitting vigil as their loved one transitions from life to death. The act of holding vigil, the purposeful witnessing of the dying of a loved one, has been a longtime practice, yet little is known about the experience and how it is experienced and remembered by the family.1 As the final time family members spend with their loved ones, vigils hold a unique place in their memory and those perceptions can be lasting.2
Few studies have explored the family experience of keeping death vigils. Caswell and colleagues interviewed 34 bereaved individuals about their perceptions of death and dying as well as the death vigil. They found four components of the vigil in their stories: gathering, enacting the deathbed vigil, experiencing the vigil and the moment of death.1 However, other written accounts are primarily individual narratives.1 3 In 2003, Casarett et al surveyed hospice family members, exploring the vigil experiences in the final 24 hours. They found family satisfaction with hospice was high. They were able to identify four dimensions of care that were important to families: accessibility of staff, continuity of hospice personnel, anticipatory guidance and symptom management.4 Family members of hospice patients have unique vigil experiences, as the care provided by each hospice and its staff can vary, influencing how the deathbed vigil is guided and supported.2
This study aimed to explore hospice family caregivers’ experiences during the final week of life with their patients. We sought to answer three questions: (1) What were the vigil experiences of hospice family caregivers? (2) What were the factors that supported the vigil experience and the factors that were barriers to a quality vigil experience? (3) What recommendations do family members have for improving the vigil experience?
Conceptual model
The Hospice Use Model serves as a theoretical foundation for understanding the deathbed vigil in hospice.5 The model (see figure 1) suggests that the use of hospice care is influenced by dynamic interaction among three external factors (community, community healthcare resources and hospice agency factors) and individual factors for patients and caregivers. These factors affect the quality of the vigil and shape the dying experience for both patient and caregiver.5 The interaction between the external factors and patient/caregiver factors influences caregivers’ overall perception of the vigil experience with recommendations for improvement.
Flow chart.
Methods
Box 1 illustrates the semi-structured telephone interview guide used to discuss hospice caregivers’ deathbed vigil experiences. A snowball sampling approach was used to recruit participants beginning with an email to hospices asking them to provide information about the study to their former caregivers. The former caregivers were asked to contact the research team to participate. Once the participants were interviewed, we asked them to notify other former caregivers they knew and provide them with our contact information. All interviews were conducted by telephone and recorded by one author (AKD) and lasted approximately 30 min. Interviews were digitally recorded and transcribed.
Hospice family caregiver interview guide
First I would like to ask some basic demographic questions to get to know you.
When were you born?
What is your gender?
What is your highest educational degree?
What is your race and ethnicity?
What was your relationship with your hospice patient (daughter, spouse, etc)?
Now I would like to ask you about your hospice patient.
What was their diagnosis?
When did they die?
Where did they die (home, nursing home, inpatient hospice)?
Were they in an inpatient hospice facility or unit?
IF 9 is yes
Now that we know something about you, I would like to ask you about your caregiving experience. In particular, we are interested in your story of the final days before your loved one died.
9a. Which hospice facility or inpatient unit did your loved one die in?
9b. I would like to ask you about your hospice inpatient facility.
Can you share a brief description of the inpatient facility?
Did you have a hospice physician at the facility?
Did you find the physician helpful?
What are the biggest benefits of the facility to you personally?
What were the biggest challenges being involved with the facility?
9c. In this next part of the interview, I would like to ask you to think about the expense of the inpatient facility.
How were the costs of the inpatient facility covered?
Have you received any bills from the inpatient hospice facility?
Did the cost of the inpatient facility bother you in any way?
Would you recommend this to other hospice families?
IF 9 is No then start here.
Now we would like to hear your caregiving story, the story of the final days and hours of caring.
Looking back, can you describe the final week with your loved one?
How would you describe the final hours?
Can you tell me in as much detail as you can about your loved one’s final 24 hours?
What barriers prevented you from caring for them at home or made it most difficult?
What resources allowed you to take care of them at home or in the unit?
If you could change two things about the final hours with your loved one, what would they be?
What did the hospice staff do at their last visit that meant the most to you?
Is there something you wish would have been different at that final hospice visit?
What words of advice do you have for someone about to go into those final days/hours?
If you could suggest a change to Medicare on how we care for those who are dying and their family, what would it be?
Do you have any other thoughts you would like to share at this time? Is there anything else I should have asked that I did not?
A Framework Analysis approach based on the conceptual model of the Hospice Use Model was used.6 Two coders (DPO and MM) read through all transcripts to become familiar and identified initial codes and categories based on that familiarisation and the Hospice Use Model categories. Using the initial set of codes, the two coders individually coded 10% of the interviews using NVivo software.7 Both coders were former hospice professionals and one was a former hospice family caregiver (DPO). The two sets of coding were compared and there was agreement on 83% of the codes. After reviewing all coded narratives, the coders reached 100% agreement and finalised the codebook and definitions. The two coders then split the transcripts and individually coded the remaining sample. After all coding was complete, a coding report for each code was created and narratives were sorted by code. Based on step five of the framework analysis approach,6 each code and its narratives were analysed further to identify subthemes, potential overlaps and ways to group the data. Codes that were present in fewer than four cases were combined with related codes or grouped into a new code labelled ‘other’. Codes were then linked to the study research questions and frequencies established. Themes and subthemes were identified in alignment with the research questions. Themes and narratives were not exclusive in that participant narratives often fell into more than one theme (such as a narrative related to patient pain and respiratory distress). Percentages were rounded due to a small number of responses. The trustworthiness of the analysis was assured through the co-coding process, review and audit with the other team members and triangulation with published vigil case stories.1 3 Finally, an author and former hospice family caregiver (JB) reviewed the findings as a modified member check.
Results
A total of 50 caregivers who experienced the vigil in a variety of hospice settings (home, hospital, nursing home, inpatient hospice) participated in the study. Participants’ demographic information is summarised in table 1. Most caregivers were 60.5 years of age or older, and the primary setting was in the home (76%). Participants were mostly women (96%), non-Hispanic white (86%) and cared for their spouse (82%) who most often had cancer (50%) or dementia (26%). The average duration since patients’ death had been 1.8 years.
Demographic characteristics of family caregivers (FCGs) and patients
Based on the Hospice Use Model, the interview data were classified into five components: external factors (general community resources, community health resources, hospice service), individual patient factors, individual caregiver factors, perceptions of the vigil experience and recommendations for change in the vigil experience. Within some factors, themes emerged from the data that elaborated on those factors. Data saturation was reached as no additional codes were identified after 40 transcripts. Tables 2–5 present all factors, themes and subthemes with definitions and frequency.
External factors impacting the vigil experience, n=41
Individual patient factors impacting the vigil experience, n=35
Individual caregiver factors impacting the vigil experience, n=38
Recommendations to improve the vigil experience, n=40
External factors contributing to the vigil experience
The Hospice Use Model identifies three external factors related to hospice use, including general community factors, community health resources and hospice agency factors. External factors contributing to the vigil experience were noted by 41 (82%) participants. General community resources that supported the involvement in the vigil were identified by 2 (5%) of participants. In contrast, 4 (10%) of participants noted general community resources that made involvement more difficult. In both cases, these resources were non-healthcare related. An example of general community factors’ impact on the vigil is shared below:
There were many organizations that did help me during that time because I wasn’t making enough to actually pay full rent and still buy groceries and we still had a 14-year-old child here at home. (Participant (P)1062)
In contrast,
I had to work at least four hours a day and there was not Internet and bad cell service in my mother’s home. (P1125)
A second external factor involved community health resources that offered health-related items or services. Of the 41 participants noting external factors, 3 (7%) identified helpful community health resources. Conversely, the lack of these health resources was noted in a narrative by one participant as an external factor making the vigil harder. Participant examples included:
I was part of an Alzheimer’s Association caregiver group, and I found several online sources for support groups and webinars. I treated it like my job. I did something like that every day to take care of me. To help me understand what was coming next. (P1049)
In contrast:
If I could have chosen for the last 36 hours to happen in a facility … where I could just focus on sitting next to her … so that I could just not be worried about trying to keep her out of pain, I would have. (P1125)
The final external factor impacting the vigil experience involved Hospice agency characteristics, mentioned by all participants noting any external factors. 30 (73%) participants noted helpful hospice services while 18 (44%) indicated that hospice services were not helpful in assuring a quality vigil experience. Asked specifically about their hospice agencies’ assistance, participants shared contrasting experiences with hospice during the vigil.
Knowing you have that resource that you can call day or night, and they’re never mad at you for calling. They never make you feel stupid, they're never like, “Oh, just put a band-aid on it, it’'ll be fine.” They’'re there, and whether they care or not, they act like they care, and that’s a big part of it. (P1005)
In contrast, more than one-third indicated dissatisfaction with hospice services, primarily their lack of availability to help.
Hospice is available by phone, but … it takes a while for hospice to come …. If hospice could have been there, especially that last week, if they could have been there every hour or every other hour or more often, that would have been helpful. (P1008)
There were four themes related to the hospice agency factors detailing the situations that influenced satisfaction and the perception of hospice as helpful or not helpful. The first theme mentioned by 14 (35%) of the 41 participants who noted external factors impacting the vigil, exemplifies narrative comments that related to the helpfulness of hospice staff during the vigil. In contrast, staff shortages or perceptions the staff was overworked and unavailability during the vigil were noted by 12 (29%) of participants who identified external factors. Table 2 provides exemplars.
The second theme relative to the hospice agency factors involved hospice nurse consistency and was noted by 2 (5%) of all participants noting external factors. Family members reported developing strong relationships with their primary nurse and having their ‘regular’ hospice nurse come when the patient was dying was considered ideal. When a different nurse came or when a nurse did not make it ‘in time’ before the death, 6 (15%) of family members reported being disappointed (see table 2).
Third, in four cases (10%) the educational materials offered by hospice were mentioned as external hospice agency factors that were supportive and informative. Examples of information that helped family members anticipate what could be expected in the final days and hours of the vigil. In contrast, a lack of education was also identified as a frustration with 1 (2%) respondent who stated they were ill-prepared to know what to expect during the vigil. There were six participants whose family members were in an inpatient hospice where staff were responsible for managing the physical care in peaceful surroundings. All six of those participants had narratives that showed satisfaction with the inpatient hospice experience, there were no contrasting themes for inpatient participants (see table 2).
Individual patient factors impacting the vigil experience
In alignment with the Hospice Use Model, 35 (70%) of all study participants noted individual patient factors that impacted the vigil experience in one of three ways enabling/predisposing items, symptoms and final breath experiences. Five (14.2%) of all participants who noted individual patient-related factors identified patient predisposing or enabling factors that existed outside the vigil experience but impacted it in a positive way.
Mom had enough room in her house, so we could put the bed in the living room and make her comfortable, and it wasn’t like a flight of stairs, and she had electricity and running water, so that was like a great blessing. (P1125)
31 (88.5%) of the 35 participants noting individual patient factors provided narratives indicating the impact of patient symptoms as a factor for the vigil experience.
As soon as she turned her over, all the stuff just started coming out of my mom. It was so horrible, and then she [nurse] showed us how to suction it. Then, she told us we needed to do it every 30 minutes. She showed us what to do, and she even had us demonstrate how to do it to make sure we were doing it correctly. (P1000)
Within this factor, we identified four types of patient symptoms. More than half (51%) of caregivers noted pain, 18 (51%) commented on respiratory changes, 10 (24%) individuals had narratives related to restlessness/delirium and 5 (12%) had other miscellaneous symptoms affecting the vigil experience. Exemplars of these themes are noted in table 3.
The third patient factor was the family’s memory of the final breath, as 18 (51%) hospice caregivers described their patient’s final breath as impactful to the vigil experience. The often vivid descriptions of the final breaths of patients were noted as bringing peace to the patient.
We called everybody into the room. … we basically all just stood there and just held her hands, and talked to her, and told her that we were gonna be okay, and that it was okay to go … all the things that the wonderful nurses help you with to be able to say. Then, basically, she just—she opened her eyes, and then she took a big breath, and that was it.(P1000)
Individual caregiver factors impacting the vigil experience
Two individual caregiver factors, enabling and predisposing factors and individual caregiving factors affecting the vigil, were reported as influencing the vigil experience by 38 (76%) of all participants. The first individual caregiving factor involves enabling and predisposing factors outside of the hospice experience reported by 28 (74%) participants and are illustrated in the following example:
It wasn’t our first go around with this group of hospice nurses. We used them previously with my aunt and then another friend of the family my mom was taking care of. They’'re great people. (P1005)
This factor had five themes that emerged including the value of established social support (14, 37%), work flexibility (4, 11%), family members (4, 11%), independent financial resources (6, 16%) and other and individual caregiver factors (5, 11%). Exemplars of these themes appear in table 4.
Aligned with the Hospice Use Model, the second factor impacting the vigil involved individual caregiver factors, as 38 participants had narratives describing specific caregiving experiences that impacted their involvement in the vigil.
My mom has been a caregiver for older people for a long time, and as all of them had started passing away, we had a lot of medical equipment we just started taking to [community agency], donating and stuff. (P1005)
These individual caregiving factors include eight subthemes providing additional insight. 24 (63%) of all study participants identified the administration of medication as an influence on the vigil. The second factor involves narratives directly related to challenges with the physical demand of care for patients noted by over half (55.2%) of participants. General non-specified stress was also noted by over half (55%) of participants. Another individual caregiver experience theme involved narratives related to fatigue and/or a lack of sleep by more than one-third (37%) of participants. Finally saying goodbye (34), wanting to know when the vigil would end (26%) and bereavement support (27%) were noted by participants. A variety of other caregiving experiences were mentioned by 5 (13%) participants. Table 4 provides exemplars of each caregiver factor theme.
Overall perceptions of the vigil experience
Caregivers described the final 7 days as both ‘beautiful’ and ‘traumatic’. Nearly half of the participants provided narratives indicating their satisfaction with the vigil experience. The majority of those interviewed (34%) provided narratives indicating their vigil experience as positive. However, 20% of all participants felt the vigil was less than ideal and reported their experience as negative. Seven (14%) additional participants had mixed responses and feedback. Below are two different participant examples:
My husband had the death that he would have wanted. Nobody wants death really. He had privacy. He had dignity. He was in his home. (P1002)
If there was any way to make him more peaceful those last few days, that would have been great. I think they tried all the meds they had in their toolbox and some just made it worse. (P1022)
Recommendations for change
Lastly, caregivers were asked for recommendations to improve the vigil experience. 38 (76%) participants shared narratives and responses fell into three recommendations. First, 36 (72%) participants shared advice for others going through a vigil experience.
If I could have had someone else there who knew this process …. Like I would have been happy continuing to deliver the medicine if I could just have had someone there who’d seen it before, who’d seen something—who had seen it like this before and could say, “This is normal”. (P1125)
The advice had two themes: stay with your loved one (50%) and ask for help (42%). Those exemplars can be found in table 5.
The second recommendation of participants to improve the vigil involved changes in clinical and operational care during the vigil by 4 (11%)participants.
… you should be the spouse or the whatever. Maybe there needs to be a someone a little bit stronger that could help you, if possible, because you’re giving him all the meds. You’re still taking care of him, if you don’t have anybody else to come in and help do that. (P1059)
The third recommendation involved changes that 33 (86.8%) participants felt were needed in policy to make the vigil easier. One participant noted with this narrative.
… I think the whole medical system in the US is broken and that people—the nurse told me, “You know, your husband has Medicare”, or “People who come in with insurance, it’s a business here”. People who don’t have money, they can come in which I think is—it’s good
The recommendation for change involved four themes: more resources from hospice (86.8%), the need for an alternative to home hospice (13%), financial help for caregivers (13%) and other (24%) recommendations that included a variety of suggestions related to issues such as patient certification/recertification, cultural influences, medical equipment.
Discussion
The stories of the vigil experience for hospice family caregivers provide several lessons and opportunities for improvement. The rich nature of the data with specific examples was filled with emotion, as caregivers’ vigil experiences left strong memories of their overall hospice experience. These narratives are consistent with those found by Casarett et al4 and Caswell et al,1 the two previously documented studies on the hospice vigil experience. Our findings aligned with Casarett and Caswell’s findings.1 4 In contrast to these studies, the Hospice Use Model provides a framework to make a deeper assessment of the experience and identify ways to improve the vigil experience for others. These data were consistent with Casarett et al who noted the prevalence of reported respiratory distress, and the terminology and descriptions in his study suggested a lack of understanding about dyspnoea, death rattle and agonal breathing, specifically.4
While the majority of participants were satisfied with their hospice experience, one-third (36%), identified hospice experiences that complicated the vigil by issues with inadequate staffing, symptom management and education. Hospice agencies can use the recommendations from this study to improve their services. While some require regulatory change, such as the intermittent nature of care, others speak to the quality of their service.
Family caregivers are suffering during the vigil and are asking for more than the intermittent care designed in the US hospice benefit. The overwhelming consensus was that more services are required as expressed by 86.8% of participants, including more continuous care and alternative care settings. It is unreasonable to expect family members to give up their jobs to care for their loved ones for an unknown period of time, doing skilled things they are not trained for or physically able to manage, in a home setting that may not be suitable or safe. The lack of sleep, frustrations and fear of administering narcotics, the need to suction their loved ones every 30 min, the distress in hearing and trying to manage numerous symptoms and the physical need to lift, turn and move a patient present a lot of strain and stress on caregivers, especially those who are older.
Medicare Hospice has a continuous care provision in the hospice reimbursement guidelines but is provided to only 1.8% of hospice patients.8 9 This provision allows for around-the-clock skilled nursing care from the hospice agency, however, the service requires extensive documentation to demonstrate ‘skilled care’. Additional challenges include that the level happens after 8 hours of delivered care and that billing be for a ‘calendar day’ rather than a 24-hour period. Finally, staffing this level of care in a time of severe staff shortages is nearly impossible in many areas as hospice nurse shortages are well documented. These reasons may explain why only 1.8% of hospice care fell into this level.
Limitations
This study is limited by the typical boundaries of qualitative research. Results should not be generalised to every individual, hospice agency or community. The snowball sampling was not representative despite being nationwide. The participants were nearly all non-Hispanic, white females, which severely limits the results. Finally, it is unknown how many unique hospices were referenced as the identity of hospice agencies was not collected. In summary, results need cautious interpretation.
Conclusion
Despite the limitations of the study, these results present several opportunities for significant improvement in clinical practice, research and policy for the final days in hospice. The contrasting themes and exemplars demonstrate a variance with the vigil experience which includes a variance between hospice agencies regarding the frequency of services, clinical practice interventions and agency policies and the interpretation of federal policies. While the ‘overall satisfaction’ seems to be high, it does still offer room for improvement.
Caregiver stories identify improvements needed in hospice clinical practice during the vigil period. For example, these stories show an inconsistency in the definitions of agonal breathing, Cheyne-Stokes breathing and the death rattle. When looking at the respiratory changes reported by caregivers it is clear that they have heard some of these terms from their hospice team however, there is inconsistency in how they were defined by the team. Interventions for various challenges appear to be inconsistent as for instance some caregivers talk about suctioning while others do not mention it. Finally, there is an opportunity to improve the educational materials given to caregivers. Some mention written materials they were given, however, the theme of more education clearly shows that more could be done.
Research into the prevalence, standard practice guidelines and health of the caregivers can be valuable as policy is being made. For example, it would be valuable to know how many hospice caregivers panic and call the ambulance or take their patients to the emergency room in the final days. Additional questions should assess if the emotional response changes over time and what the impact of years bereaved on perceptions of the vigil experience?
These narratives point to key concerns that support a significant change in the underlying tenets of the hospice Medicare benefit. Symptom management is a central goal of hospice care, and it is clear that the final week of life is filled with serious unmanaged symptoms. Additionally, educational materials, as well as focused interventions regarding symptoms in the final week are needed. Caregivers specifically spoke to the value of educational materials that helped them understand, and they also spoke to the value of knowing when something is ‘normal’. However, it is questionable why these patients were not receiving continuous home care or inpatient care given their need for skilled care such as suctioning every 30 min or the titration of opioids for pain management. It is not ideal to expect an older female spouse to forgo sleep in order to do these things, even if it is only a matter of 48 hours. The physical and mental health impact of the vigil on caregivers is unknown but clearly something worthy of investigation.
Data availability statement
Data are available upon reasonable request. Data available with Data Use Agreement.
Ethics statements
Patient consent for publication
Ethics approval
This study involves human participants and was approved by Washington University in St. Louis - Human Research Protection Office. IRB# 202207089. Participants gave informed consent to participate in the study before taking part.
Footnotes
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Contributors DPO contributed to the overall study including intellectual idea, supervision of data collection, data analysis, interpretation, first manuscript draft, final approval of manuscript and guarantor. MM and JB were involved in the data analysis, interpretation and editing of the manuscript. AKD was involved in recruitment, data collection, trustworthiness, secondary coding and editing. KTW was involved in trustworthiness assessments, data interpretation and editing. PHW was involved in securing the funding, project planning, data interpretation, manuscript preparation and feedback, recruitment and editing. We also acknowledge the work of Joanna Helmkamp who processed reimbursement, transcripts, record organisation and manuscript pieces. We especially acknowledge the open and honest sharing of what at times was emotional reactions of the hospice caregivers providing the data for this study.
Funding This research was supported by The Foundation for Barnes-Jewish Hospital and Hospice Foundation of the Ozarks. Grant number N/A.
Competing interests None declared.
Provenance and peer review Not commissioned; internally peer reviewed.