Alzheimer disease, the most common type of dementia, is currently the sixth leading cause of death in the United States and the third leading cause of death, after cardiovascular disease and cancer, in older adults.1 Dementia is an incurable disease, progressing from mild cognitive impairment to advanced disease. Advanced dementia, the final stage of the disease, is characterized by severe memory deficits, feeding difficulties, minimal verbal abilities, inability to ambulate independently or perform any activities of daily living, and urinary and fecal incontinence. The most common symptoms at the end of life are difficulty swallowing, weight loss, aspiration, and breathing difficulties.2
Nursing homes (NHs) serve as an important location for providing end-of-life care for patients with advanced dementia. In the United States, more than half of those with dementia died in NHs.3 However, research suggests that end-of-life care in NHs is not optimal. Residents with advanced dementia often experience frequent hospital transfers, low hospice utilization, poor symptom management, and a lack of psychosocial support for themselves and their families at the end of life.4-6
Hospice in the United States is a Medicare-funded insurance benefit designed to provide end-of-life care to Americans with a life expectancy of 6 months or less. Most NHs (93.3%) have an active hospice contract to augment the care provided to residents at the end of life.7 Hospice has been shown to improve the care of dying NH residents including reducing the risk of end-of-life hospitalizations.8 However, hospice utilization is low among NH residents.9
Caring for dying patients can be emotionally demanding for clinicians in any setting. In NHs, previous research has focused on the experiences of nurses and certified nurse assistants (CNAs) providing end-of-life care for NH residents.10-12 These studies suggest that these providers often develop strong relationships with residents and report significant grief and bereavement when residents die.10,12 These challenges lead to staff burnout, negatively impact the care of residents, and affect NH staff recruitment and retention.10,12 However, missing from previous studies are the experiences of other staff members such as social workers, speech and language pathologists, dieticians, chaplains, and administrators who do not provide daily direct care but work with residents and their families in other capacities in NHs. In addition, previous studies have included residents who have died of all causes, not only dementia. The experience of caring for residents dying with advanced dementia may differ owing to the protracted trajectory of extreme cognitive and functional disability and challenges related to communication, mobility, and the need to rely on family members for care decisions.
In this context, this study leveraged data generated from a large qualitative study, Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE), to examine the perceptions of NH staff of various disciplines caring for dying residents with advanced dementia at the end of life.13 The team examined these data to describe NH staff perceptions related to the transfer of these residents to the hospital, the role of Medicare hospice providers, and their personal experiences caring for these residents.
A secondary qualitative analysis of data collected from the parent study, ADVANCE, was used to address the study aims.14 The ADVANCE study methods were described in detail elsewhere.13 In summary, the ADVANCE study was a large qualitative study to elucidate factors related to NH organizational culture and proxy perspectives contributing to regional and NH variations in the intensity of care of NH residents with advanced dementia, particularly related to the management of feeding problems and decisions about hospital transfers. The study used 2016–2017 Minimum Data Set information to identify regions of the country with high and low intensity of tube feeding and hospital transfer as well as NHs within these regions with high and low intensity of these interventions.13 At the time that this study was conducted, the ADVANCE study had conducted observations and interviews in 13 NHs, generating 275 hours of observations and interviews with 158 NH providers from varied disciplines. The study reported here specifically focused on NH staff's perceptions and experiences about caring for residents with advanced dementia who are very near the end of life (ie, dying).
Setting and Sample
At the time of analysis, 13 NHs were recruited from hospital referral regions in 4 states (New York, Massachusetts, Alabama, and Georgia) in the southeastern and northeastern regions of the United States for the ADVANCE study.13 These states were selected purposefully as being in diverse regions of the country with known variations in the intensity of advanced dementia care with regard to tube feeding and hospital transfer rates as determined from the National Minimum Data Set. Eligible NHs had at least 85 beds and more than 10 residents with advanced dementia. In each NH, nurses (n = 2), CNAs (n = 2), social workers (n = 1), administrators (n = 1), and medical providers (physicians, physician assistants, and nurse practitioners) (n = 2) as well as a chaplain, a dietician, and a speech and language pathologist, when available, were interviewed. To be eligible for inclusion in the study, staff had to be at least 21 years old, able to communicate in English, and involved in the care of residents with advanced dementia for at least 2 months. The study was approved by the institutional review board at Advarra. Verbal informed consent was obtained before data collection.
Semistructured interviews were conducted in person by doctorally trained researchers in a private location at the NH (84%) or, when necessary, via telephone (16%). For this study, the team analyzed data generated from the following questions: How are decisions made about whether residents with advanced dementia receive their end-of-life care in the NH versus being sent to the hospital? What do you see as the positives and negatives of residents with advanced dementia being cared for in the NH during their final days? What has been your experience providing end-of-life care to residents with advanced dementia?
Audio-recorded interviews were transcribed verbatim. Each transcript was reviewed for accuracy by a researcher and uploaded into NVivo 12.0, a qualitative data management software program for analysis. Data were analyzed by a team of 5 researchers: 3 PhD-prepared researchers; 1 MD, MPH; and a PhD candidate. Using a qualitative descriptive methodology,14,15 members of the research team independently used thematic analysis to report identified patterns or themes within the data.16 The team reviewed individual coding and reached a consensus on reported themes by discussion. The primary author reviewed open-ended responses coded under the theme “end of life and perceptions of hospice” and developed subthemes that addressed the research questions proposed in this report. Subthemes were then presented to the entire research team and discussed until consensus was reached.
A total of 158 staff were interviewed. Ninety-one percent were female; participants' race/ethnicity was as follows: 60% White, 26% Black/African American, 6% Asian, 6% others, and 2% unreported. The median age was 48 years. Participants included 12 directors of nursing, 35 nurses, 23 nursing assistants, 12 administrators, 16 prescribing providers, 10 dieticians, 11 speech-language pathologists, 3 occupational therapists, 14 social workers, 4 chaplains, and 18 other staff. All but 1 of 13 facilities in the ADVANCE study had contracts with outside hospice providers.
Site of End-of-Life Care for Residents With Advanced Dementia
When staff were asked about whether residents with advanced dementia should receive their end-of-life care in the NH or be transferred to the hospital, regardless of role, almost all staff preferred that residents spend their last days in the NH. They reported several benefits of having residents cared for in the NH. First, they felt that they could provide holistic care. In addition, many reported that the NHs was home to residents and that they should be allowed to die in their “homes.” Finally, they reported that staff in their NHs provide more personalized end-of-life care for residents and their families compared with what they would receive in the hospital. A director of nursing said:
If they're in the dying process, again I think it's a lot more important for the resident to stay here where they've been and where they may have people that love them and take care of them and have that bond with them that people in the hospital doesn't have.
Staff also described the NH as providing holistic or comprehensive care that focused on all of the residents' needs and not only their disease process. For example, a director of nursing said:
Nursing homes focus on that whole person. We're trying to address your social needs, your medical needs, and every need you got. We're holistic. The hospital is focusing on your disease. This one disease.
Staff often described the NH as being home to residents. Residents usually spent their later years leading up to death in NHs, and staff considered them family and the NH their home. This made the NH a more comfortable site for terminal care. One administrator put it this way:
It is their home. I won't say it's quieter necessarily, but I hope it's less clinical. It's not as cold. There's some level of home. It's more comfortable. It's around people that you know and that you've known and that know you and both staff and other residents who you've known as opposed to going somewhere where people don't know you and where everything is in constant transition as opposed to where it's not. I think that is the biggest difference.
A nurse practitioner said:
I think that they should be cared for here. Personally, because even though they're a resident, they're family here. They go to the hospital, someone's in and out however many hours, but here they're not just our residents, they're our family members and they may have five people go and check on them within five minutes because it's like a revolving door.
Some staff described the NH as providing personalized end-of-life care that was tailored to each resident and honored residents' choices and preferences. A CNA described it here:
I would say here because you know, it's more, here it's more personal, I think. I'm not saying care in the hospital is bad, but it just has so many in and out in and out and care at a nursing home, you have that personal care. You have, you know, personal relationships with your residents, and then you have a lot of one on one, so I think in a nursing home it would be better.
Perceptions of Hospice Care
Irrespective of role, NH staff held different perceptions about outside hospice providers. Some staff members felt that hospice referral was beneficial and provided additional care and support that NH staff were unable to provide. However, other staff members held negative attitudes toward hospice. These staff members felt that hospice was duplicative of the care they already provided suggesting that the resources spent on hospice would be better spent on supporting the care they were providing. In addition, some staff reported that hospice interfered with the relationships they had with residents and families resulting in suboptimal care.
Staff who held positive perceptions of hospice reported that hospice provided additional care for residents with advanced dementia generally directed at comfort and palliation at the end of life. They also appreciated that hospice could provide additional support for families of residents. When asked whether the NH uses hospice, 1 administrator said,
…Yup. I love hospice. I think it's a wonderful benefit. I wish more people could have more of that one on one and attention. I mean I've seen people where we didn't think it would be long at all and then they blossom, and they just had that extra love and attention.
A social worker said:
Hospice is one of the greatest things ever for end-of-life care for advanced dementia.… The building I came from before we had a different company that did hospice there and the care that they provided was outstanding. It was just outstanding care. I have seen them come in and hold hands and sit with a person and read scripture and just be there in that moment for that person. Sometimes when they would be there passing alone, just the care that they provide is just phenomenal and then also they provide a lot of support for families during that time.
Others appreciated hospice as an important tool that reduced burdensome interventions such as tube feedings and hospital transfers that may not improve patient comfort at the end of life. When asked about transferring residents with advanced dementia to the hospital, some staff members appreciated hospice as a resource that helped them keep residents in the NH. A staff member expressed her perception that hospice helped avoid unnecessary hospital transfer in this way:
Absolutely, yeah because that's one of the things they always say in our evaluation is “unless you need to set a bone or get stitches or something, your loved one will not be going to the hospital.” Under hospice care, if you want that then you have to revoke hospice.
Some staff members used hospice as an alternative to hospital transfers. A nurse said:
They [family] don't want to relocate either because they'll say we really like your facility. That's when they'll choose. “Well let's do hospice. Will mom have to leave?” We say, “No, hospice will come in and that her last time during her transition phase someone will be at her bedside, so she won't go alone.” And they say well we like the staff, we like the care you've rendered, let her stay and we'll take hospice…
When asked about tube feeding at residents' end of life, a speech pathologist said:
When they get to that part, most of the time they put them on hospice and so then the speech pathologist is not involved. If they're not on hospice then they're going to go all the way to the part of whether they need a feeding tube.
In contrast, some staff members felt that hospice care did not offer additional benefits to the residents. They described hospice care as being expensive, duplicative of the care they provided themselves, and that hospice staff could not provide the same care for residents as NH staff could. One staff member (licensed practical nurse) suggested the resources used to pay for hospice could be better spent on existing staff. He said:
I know they would, certain insurances cover hospice in that, I do find that, like I said, sometimes I don't feel it's very helpful because they, in this type of setting, they come in for an hour or a day, the nurses.… Almost as if the facility itself was able to provide that extra staffing, rather than an outside company, we all know, this is a business, so, you know, staffing, but, rather than allocating that money to an outside company, maybe allocating it to, to the ones that are end of life and having aids that, voices that they're familiar with, faces that they're familiar with.
A physician described “comfort care” without hospice this way:
So, for me comfort care is often hospice without the agency. For whatever reason, the person doesn't subscribe or sign on to the hospice benefit, but they want everything focused on their comfort.… So typically I would say that comfort care is almost the same as hospice care except for the people without the agency. Hospice with a little “h” instead of a big “H.”
Personal Experience of Providing End-of-Life Care
All staff, regardless of role, described experiencing difficult emotions while providing end-of-life care for residents with advanced dementia. They reported feeling “hurt” and experiencing great “sadness” and “grief.” These emotions emanated from 2 perspectives: an attachment with the residents that was as strong as love and family, and bearing witness to residents' decline toward death. Although almost all staff described these emotions, nurses and CNAs described them more poignantly.
A nurse described her experience administering morphine to dying residents as love. She said:
They're [residents] gasping for breath. You can't allow somebody to gasp for breath because you want them here with you. It's like putting a stocking over your head and you can't breathe and you're tying the stocking tight. You can't do that to somebody. Love is sympathy. Love is empathy. Love is kind.
Two CNAs described feeling hurt and broken when asked about their experiences providing end-of-life care:
I get close to them, I do just like your family. So, I break down—I am a big baby but I gotta have that relationship with them. So that's one of my weaknesses. I don't consider it a weakness at all. I definitely don't. That is emotional right now. I get close to a resident. That is the only part right here, getting close, so attached to them and they pass away. Heartbroken.
…because then you care for them for so long, they're like family and to see them go, it breaks your heart. It does. Well, me, it breaks my heart.
Another nurse said:
Our girls are really good, and we're nurses, and we get attached and I think that we do a good job of being there for our families, but I think we're suffering just as much as they are.
For some staff, witnessing the decline of residents who come in with mild dementia and progress to death takes a toll on them. Another staff member (CNA) shared her experience. She said:
It hurts because starting out, they start eating, laughing, and talking with me and then all of a sudden it just goes to where they're not talking and not eating and just everything starts fading away. That's a hurting feeling to see something like that happen.
Most of the dementia-related care in the United States (66.9%) is provided by NH staff.17 This study sought to understand the perceptions of NH staff of different professions about the site of death and hospice care and their perceptions related to providing end-of-life care for residents with advanced dementia. The study found that almost all staff reported that the NH was a preferred site of care for residents with advanced dementia compared with a hospital. Staff overwhelmingly felt that the NH provided more holistic, resident-centered care, focused on not only the residents' disease but also their comfort and family support. The study also highlights the depth of intense emotions experienced by staff suggesting that strategies to address their grief are necessary.
Burdensome hospital transfers for NH residents with advanced dementia continue to occur at the end of life.18 These transfers are often avoidable for residents with advanced dementia, for whom comfort is the goal of care.18 Our findings suggest that NH staff perceptions on the site of death were consistent with overall goals of care for residents with advanced dementia, that is, promoting comfort and reducing burdensome, expensive, and unnecessary hospital transfers at the end of life. However, previous research also suggests that despite staff's desire for residents to remain in the NH, hospital transfers may occur when staff do not feel equipped to manage acute changes in conditions that often occur at the end of life.19
Previous studies have shown that residents with advanced dementia enrolled in hospice had better treatment of pain and dyspnea and were less likely to be hospitalized in the last month of life.8 Moreover, families reported greater satisfaction with resident care.20 Although hospice utilization in NHs is rising, only 16% of enrollees had a primary diagnosis of dementia.21 Hospice is intended to augment, not replace, the usual NH care. However, NH staff in this study reported mixed perceptions of hospice care consistent with findings from previous studies.10,11 Some had positive perceptions of hospice including it being additive to the care they provided themselves, helping to reduce burdensome interventions at the end of life, and providing better psychosocial support not only for residents but also for their families. However, others described it as duplicative, expensive, and disruptive of established relationships and care that NH staff provided to residents at their end of life. These negative perceptions of hospice care could be explained by NH culture, NH staff misunderstanding the role of hospice, and poor communication between hospice and NH staff that can lead to poor care coordination at the end of life.11 Attitudes toward hospice care held by NH staff are known to impact referrals to hospice for residents.22 Thus, it is important to educate NH staff on the role of hospice and to engage both NH and hospice staff in continuous dialogue on how to improve communication between both groups and foster good care coordination.
Study participants, regardless of profession, overwhelmingly expressed experiencing difficult emotions while providing end-of-life care. Previous studies have also shown that direct care staff experience considerable stress from bereavement associated with the death of their patients.12 The emotional impact and stress experienced by staff can often lead to staff burnout and high attrition and subsequently contribute to poor quality of end-of-life care.10,12,23 Although existing research has focused on direct care staff emotions at the end of life of their patients,10,12 this study demonstrates that other NH staff experience similar strong emotions. These findings suggest the importance of interventions designed to provide not only emotional but also physical, psychological, and spiritual support to NH staff to help them cope with grief and increased stress from providing end-of-life care.
These findings have important care implications. Despite the difficult emotions experienced by providing end-of-life care for residents with advanced dementia, NH staff still preferred the NH as a site of death for residents. They emphasized person-centered comfort care as the goal for residents with advanced dementia. This finding suggests that NH staff may welcome strategies that support their ability to provide palliative care for residents with advanced dementia in the NH rather than transferring them to the hospital. However, research also suggests that to provide palliative care in the NH, staff need support to engage in advance care planning, address family disagreement in end-of-life decision making, comfort those with challenging behaviors, and recognize and manage pain.22-28 Hospice and palliative care experts may serve as consultants and provide education and support in these areas. Moreover, as family decision-makers are the major drivers of where residents receive end-of-life care, NH staff must also focus on establishing trust with family members and include them in end-of-life care planning.29,30 Future research should focus on policies and interventions that target NH resources and staff to support their skill in the management of acute illness for residents with advanced dementia at the end of life, as well as tools that improve NH and hospice communication and care coordination.
This study has limitations. First, this was an ancillary analysis of data generated from the main ADVANCE study. The aim was to better understand facility and regional differences in tube feeding and hospital transfer rates for NH residents with advanced dementia. Although staff were not directly questioned about their perceptions of hospice, they provided a rich perspective on hospice and their experiences caring for residents who died with advanced dementia. In addition, the qualitative nature of the study does not allow the researchers to draw conclusions about correlations. Nonetheless, we did not see a pattern in responses based on their roles. Finally, these data were collected before the COVID-19 pandemic. It is likely that, given the death toll among both NH residents and staff, there is an even more urgent need to address grief experienced by NH staff. Although the findings may not be generalizable, they do provide new insights into the depth of emotions held by NH staff in multiple roles and evidence that staff, regardless of role, may be affected by grief associated with the loss of residents with advanced dementia.
Nursing homes are an important location for end-of-life care for residents with advanced dementia. Most research and policy interventions have focused on providing quality end-of-life care for residents in NHs. To achieve this goal, there is a need to understand the perceptions and experiences of the staff who provide care at residents' end of life. This is especially important during the unprecedented COVID-19 pandemic where more than one-third of all US COVID-related deaths have occurred in NHs.31,32
Taken together, findings from this study show that NH staff believed that residents with advanced dementia should receive end-of-life care in the NH. Whereas some had very positive perceptions of hospice, others found hospice duplicative, expensive, and disruptive of usual care. They also reported caring for residents with advanced dementia to be emotionally taxing.
Strategies to improve end-of-life care for NH residents with advanced dementia should include ensuring that NHs have the resources to manage acute illness in the facility as well as improving communication and care coordination between hospice and NH staff. Finally, it is important to provide the necessary psychosocial support to NH staff to deal with the emotional toll of providing end-of-life care.
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