Death and Dying in Long-Term Care Facilities: The Perception of Occupational Therapists

Abstract

End-of-life care in long-term care facilities for older adults requires numerous skills. However, many professionals, including occupational therapists, feel unprepared to deal with death and dyingand have difficulties to attend to the real needs of the older adults and their families.This is a qualitative study anchored in phenomenologywhich had the objective to understand the perception of occupational therapists regarding death and dying inlong-term care facilities. Data were collected through focus groups and analyzed by thematic content analysis. A total of 12 occupational therapists participated in this study, and two themeswere generated: “The Experience of Death and Dying” and “The Occupational Therapist’s approach in Facing Death and Dying”. These results may contribute to improvingthe care provided to older adults in the process of death and dying.

Keywords

death long-term care facilities occupational therapists focus group perception

Advancements in technology have enabled individuals to live with chronic diseases and to die more slowly (Benson et al., 2018). However, the quality of care offered at the end of life needs to be improved in developed and developing countries (Pivodic et al., 2018). Death is an end-of-life phenomenon and dying is the process which precedes death. Although there is a worldwide movement to bring people closer to the theme of death, such as the growth of compassionate communities (Abel, 2018), death doulas (Rawlings et al., 2019, 2020) and death cafés (Miles & Corr, 2017), there may still be resistance from some health professionals to open dialogue on these themes (Omori et al., 2020). However, death and dying involve communication, care, and acceptance of something inevitable, in addition to requiring skills from the professionals who experience them (Kubler-Ross, 2009).

Many older adults with chronic illnesses have an extensive and complex trajectory of health/illness, with it being difficult to define if they are living with the illnesses or dying from them (L. Lloyd et al., 2011). Long-term care facilities for older adults are often the place of care for individuals approaching death (Krishnan, 2017; Marcella & Kelley, 2015; Pivodic et al., 2018). Older adults who die in long-term care facilities may present complex health conditions with multiple diseases and cognitive and functional impairment (Frahm et al., 2012; Honinx et al., 2019).

Furthermore, the imminent death of an older person not only represents a remarkable event in their life, but also in the lives of other residents, family members and the team who attend them (Thompson et al., 2019). Thus, offering comfort to older adults in the process of dying is also comforting for other residents, family members and employees (Sussman et al., 2017).

Providing care in an older adult’s final moments of life in long-term care facilities directly involves the occupational therapist who works on structuring the older adult’s routine and adapting the institutional context. Occupational therapists’ performance provides quality of life and dignity to those in the process of death (Warne & Hoppes, 2009). However, health professionals, including occupational therapists, are technically unprepared to face death and dying (Cagle et al., 2017; Hammill et al., 2014; Omori et al., 2020; Warne & Hoppes, 2009).

The literature addresses the experience of health professionals about death and dying in long-term care facility (e.g., Cable-Williams & Wilson, 2017; Marcella & Kelley, 2015; Omori et al., 2020). Despite the relevance of the topic, studies which discuss in depth the perception of occupational therapists about the experience of death and dying and their performance during this process are scarce (e.g., Hammill et al., 2019; Tavemark et al., 2019; Treggalles & Lowrie, 2018), and especially in the context of long-term care facilities. Greater knowledge about these perceptions may provide support for implementing actions which aim to increase the quality of the death and dying process of older adults. Despite being a culturally avoided topic, it should be widely discussed in order to prepare occupational therapists to deal with the difficult approach to death and its repercussions in the daily lives of those living in long-term care facilities. Therefore, the aim of this study was to understand the perception of occupational therapists regarding death and dying in long-term care facilities.

Methods

Study Design

This is a qualitative study anchored in social phenomenology (Schutz, 1972). This framework is based on understanding the action of subjects in the social world, considering the intersubjective relationships contained in their daily experiences. Phenomenology allows to deepen the subjects' experiences, especially when the focus of the study is related to questions of human existence (Schutz, 1972). The study was submitted to the Research Ethics Committee of the Universidade Federal de Minas Gerais and approved under CAAE opinion number: 0251817.0.0000.5149. Participants were informed about the research objectives, and signed the Free and Informed Consent Form.

Participants and Recruitment

The recruitment process combined snowballing and convenience procedures. Sample was composed of Brazilian occupational therapists from the metropolitan area of the city of Belo Horizonte, Minas Gerais state, Brazil, who had been working in long-term care facilities for at least six months. The snowballing technique consists of identifying some subjects according to the study objective and asking them to indicate others, who in turn, will indicate others, and so on (Kirchherr & Charles, 2018). The first two occupational therapists invited to participate in this study were identified through a list of long-term care facilities registered by the city of Belo Horizonte. Next, new participants were successively indicated. One of the researchers invited the occupational therapists by telephone, explained the study’s objectives, the voluntary nature of participation and that they were free to withdraw at any time.

Data Collection

Data were collected in 2019 through focus groups. Focus groups were chosen because they are a useful collection method when a study seeks to discover the participants’ perceptions, ideas and experiences. Members can help each other to express, elaborate and reflect on the topic when addressing sensitive issues (Sussman et al., 2017). Thus, a focus group encourages debate among participants, enabling the topics to be discussed more than in an individual interview situation. A script was previously prepared for the focus group to guide the discussions. This script was prepared so that the first and more general questions addressed aging and death, and then more complex and specific questions were gradually introduced about the process of dying at the long-term care facilities and the approaches used by the occupational therapists.

The focus groups were moderated by a researcher from another professional area who did not know the occupational therapists participating in the groups, who had experience in carrying out this type of data collection and also relied on participation by another researcher who had the role of “observer.” The groups were held in an easily accessible place for the participants in a public university room prepared to receive them, and was a quiet space. Two groups were carried out with seven and five participants (Krueger & Casey, 2015) composed of occupational therapists from for-profit and non-profit institutions. The testimonies were recorded in audio by two pieces of equipment placed at strategic points in the room.

After completing the focus groups, the recordings were transcribed by one of the researchers, and then he and another researcher carefully reviewed the transcripts in order to ensure that all information was entered. The authors were concerned with maintaining methodological rigor throughout the research process (Graneheim & Lundman, 2004; Rose & Johnson, 2020; Shenton, 2004), and all three researchers (with experience in conducting qualitative studies) participated in the data analysis.

Data Analysis

The material was analyzed using the Thematic Content Analysis technique, for which the authors performed the six steps proposed by (Braun & Clarke, 2006): (a) familiarization with the data, where two of the researchers read and reread the material thoroughly; (b) coding, in which the authors determined and compared the codes; (c) generating the initial themes; (d) reviewing the themes to make sure that they answer the study question; (e) defining the scope and names of the themes; and (f) writing and contextualizing the analysis with the existing literature. A total of eight face-to-face meetings took place between the researchers to discuss and agree on the final categories. After extensive data analysis, the researchers concluded that the study objective was achieved and that there would be no need for further data collections.

Findings

A total of 12 occupational therapists participated in the focus groups. There were 9 women and 3 men, with an average age of 32.5 (26–51) years, with an average time of 8 (2–25) years since graduation and 5.33 (1–22) years of experience in long-term care facilities; nine of the occupational therapists are specialized in Gerontology or Older Adult Health and two work in non-profit institutions. The focus groups lasted 90 minutes each.

Next, two themes were generated from analyzing the focus groups: “The experience of death and dying,” and “The occupational therapist’s approach in facing death and dying.” Each theme has two categories, as shown in Figure 1.

Figure 1.

Themes and Categories.

Theme 1: The Experience of Death and Dying

The Inevitable Fact

According to occupational therapists, death and dying is present in the daily lives of those living in long-term care facilities. Despite this, there are different ways to face it according to the clinical condition of the older adult:

Because there are always people who pass away in a care facility. It’s part of the day-to-day … (Focus Group 2)

Sometimes, there is a terminal case, for example cancer, where we are seeing that person really dying, (…) and another case of an older person who does not have a diagnosis, has nothing, the flu dehydrates them and they die. (…) Accepting the death of an older person who is already in the process of death is one thing, and that which happens without expecting it is another. So we ask [referring to the second case]: “Oh no, but that was fast! Wow, but why?” (…) When the older person is already in the terminal phase, we involuntarily say: “Well, now they could rest … ” (Focus Group 1)

I think that when an institutionalized older person dies, but they are in a situation of greater fragility, this is more accepted (…). (Focus Group 2)

The way people who are close to the older adult (other residents, relatives, employees and managers of the long-term care facilities) deal with death and dying was identified as a factor which influences the experience of occupational therapists:

It’s not easy to deal with when a person does not accept [death] (…) Many families deny it: “no, he is fine, look here!”. And … we clearly see that it’s not. Denial is difficult to overcome. We can’t access the family … (Focus Group 1)

I work at two facilities. One of these is one which silences death, nor can we talk about it. The other is not like that … The whole team is informed about a death, the older adult residents are told, the family actively participates in the process (…). There is comfort for the family and the team. (Focus Group 1)

The Occupational Therapist Dealing With Death

Participants reported learning by experiencing death. However, there is a greater difficulty in dealing with it when the older adult dies when the occupational therapist is actually at the institution. Thus, there is a lack of familiarity with death:

The first deaths are worse (…). I think we start to learn from the beginning (…). So, [the professional] has already learned from the death of the another older woman that they experienced previously. (Focus Group 1)

You experience death on the day you are at the institution, and the resident passes away with you, which is different from when the older person passes away when you are not at the institution, working on the day (…) And then, everything is done calmly, the death passes, (…) So, these two experiences are different. (…) (Focus Group 1)

(….) we experience it a lot, but we don’t get used to it. (Focus Group 2)

The proximity of the occupational therapist to the older adult they provide care for was another aspect mentioned by the participants:

… my perception of death is very much linked to the proximity that I have with the patient, for example, if I provide individual care to them (…) or I already spent more time with them, participating in the group, and they are needed in the group, then we miss them more. (Focus Group 1)

… if you have direct contact with that patient, you need information about their life story so you know what else that person might want [in relation to death and dying] (…). (Focus Group 1)

Occupational therapists reported the need and importance for technical and personal preparation:

The most important is the orientation, it is the study of death. When we study that … we understand better. (Focus Group 2)

When I started studying palliative care, it helped me a lot. I felt much more empowered. (Focus Group 2)

Taking care of yourself is essential. Not just with therapy. (…): therapy and some source of spirituality. Leisure … having moments outside the institution. (…) a moment to disconnect, to distance, it helps to strengthen me. (Focus Group 2)

Theme 2: The Occupational Therapist’s Approach in Facing Death and Dying

Preparing for the Inevitable

Participants discussed strategies used in facing death and dying, among them are the early approach and spirituality:

Working with death in the institution cannot only be when the older adults enter the palliative care process or terminal phase. It must be work done beforehand, so that the person can have the opportunity to say what they want to happen, what has meaning to them. (Focus Group 1)

The practice of spirituality, I also think that it is a way for us to approach this theme, with comfort in the belief of each one. (Focus Group 1)

In addition, preparing for death and dying by occupational therapists should include discussions with the staff working at the long-term care facilities and with family members.

When you have a strong team, a team that talks, that knows how to deal [with death], it helps a lot. Teamwork strengthens us … we are all in the same situation together. (Focus Group 2)

There has to be a conversation with the family. You should have a previous conversation, even if it is about an older person who is not in palliative care (…) because the conduct that will take place depends on the family’s decision. (Focus Group 1)

And how am I going to return this to this older woman who is asking that she just wants to see her son at the end of her life before dying, and her son won’t come? (Focus Group 1)

Facing the Inevitable

In order to face the inevitable, occupational therapists highlighted welcoming and elaborating on death and dying:

If that fear of dying is very intense, we try to work on this issue. (…) one of the things which is part of our professional practice is to make them [the older person] learn to deal with death, with that struggle and mourning (…) Having possible interventions to bring this older person to life. (Focus Group 2)

I think we have to provide this space for these discussions [about death]. Together with them [the older adults] and with the family. (…) we should not deny this phase during groups or in individual visits. (…). (Focus Group 2)

Encouragement to continue meaningful and everyday activities was also mentioned:

Listening to what the older person does and talking and trying to provide them with pleasure [meaningful activities], satisfaction, within the routine, within the most basic, most everyday activities … (Focus Group 1)

Finally, the participants highlighted the help in planning practical issues arising from death:

There are some older people who want to plan everything about their own death, keep everything organized, choose the color of the flower. (…) Leaving something for someone, inheritance … (Focus Group 2)

Discussion

Phenomenology helped researchers to understand the meanings attributed by occupational therapists to death and dying in long-term care facilities. The results showed that death and dying are processes influenced by the social and cultural group. The act of dying includes a symbolic aspect in addition to being a biological phenomenon inherent to human beings. Even though occupational therapists consider death as inevitable and they are professionals who work with aging, there is difficulty in facing the life phase in which there is greater proximity to death in a natural way. Therefore, death presents itself as a phenomenon full of values and meanings, and is often seen as a taboo and a synonym for failure.

The first theme comprised the meanings attributed by occupational therapists to death and dying based on the lived experiences. According to occupational therapists, there is more acceptance of death when the older person presents a situation of greater frailty or an incurable disease because death is more expected in these situations when compared to a sudden death of a healthy older person. Professionals have a longer time to prepare and accept death in situations when the older people have an incurable disease or are frail, as the older person “is experiencing the process of death” (Focus Group 1), in contrast to sudden death where there are no signs that death is coming. In addition, occupational therapists associated the death of an older adult from an incurable disease with a feeling of rest. Thus, the professionals who work at the long-term care facilities had a more positive view of death when they perceive it as a relief from pain and suffering (Boerner et al., 2015). Although death is part of the human life cycle, it causes questions when it is not announced: “Oh no, but why?” and a feeling of discomfort for occupational therapists.

The meaning of death and dying is influenced by the actions of those who are closer to the person involved. In the present study, it was possible to observe how interactions with family members and with other long-term care facility employees and managers influenced the experience of occupational therapists. According to the participants, there is greater difficulty in approaching families when the family denies the death process of the older person. Many behaviors related to this process depend on the opinion of family members, and it is essential that they are aware of the older person’s condition in order to be collaborators in their death and dying (Tavemark et al., 2019). When family members do not deal well with the topic of death, there is a difficulty in discussing desires and preferences in end-of-life care (Sussman et al., 2017).

Regarding managers and other long-term care facility employees, the participants stressed that there is no consensus on how to deal with death and dying. Death is perceived as a taboo in some long-term care facilities, a veiled issue for both professionals and the older residents. There are long-term care facilities which traditionally conceal information regarding the death of an older person from the professionals and from the other older residents in the long-term care facilities, which can contribute to pathological grief (Marcella & Kelley, 2015; Schulz, 2017). By silencing death, the long-term care facilities demonstrate a lack of recognition that the residents and employees are affected by the losses, denying them the opportunity to express their sadness (Marcella & Kelley, 2015).

On the other hand, occupational therapists also emphasized that there are long-term care facilities where the death and dying topic is approached in an open manner, bringing more comfort and safety to the older residents, family members, other residents of the facility and staff. When there is an open space to discuss issues related to death and dying, there is greater comfort for those involved in dealing with such issues (Sussman et al., 2017). Therefore, death and dying at the long-term care facilities are collectively built by the interaction between the older adults, family members, employees and managers, and this construction interferes in the death experience by occupational therapists.

Occupational therapists face and reaffirm their own finitude when dealing with the death of the older people: “It has to do with me, how I face myself, because death will happen” (Focus Group 1). Thus, when experiencing death and dying, therapists often reflect on their own mortality and acquire learning to deal with subsequent situations. Each experience of death and dying affects and changes the perception of these professionals and puts them more in touch with the reality of their finitude. In this sense, they reported that the experience of the first deaths were more difficult, but served as experience and learning: “I really came to understand when I went through the first death” (Focus Group 2). Occupational therapists who work in end-of-life care view death experiences as something enriching for their professional and personal development (Treggalles & Lowrie, 2018). Despite the participants reporting learning, difficulty in dealing with death in a natural way was clear. In the discourse, it is noticed that occupational therapists try to pass the idea of death as “part of life” (Focus Group 1); there is the persistence of a lack of being used to dealing with death and dying when they report the experiences in the long-term care facilities.

The professionals signaled there were different situations: knowing the news of death versus experiencing it during their work shift. The latter situation may be associated with a feeling of helplessness by the occupational therapist, considering that, according to Ådland et al. (2019), the doctor has a central role at the time of death. On the other hand, it is essential that the health team is present at the time of death and dying, as it is an opportunity to comfort and to show affection to the dying older person (Thompson et al., 2019).

Closer interaction between therapist and an older person modulates the experience of death and dying. The results showed that the occupational therapists felt death more intensely when having closer contact in individual consultations and/or a longer experience period with the older adult. The pain and grief of the professional is greater when the relationship with the older adult is closer and care is provided for longer (Boerner et al., 2015).

The participants also reported that establishing a bond makes it possible to gain more information about the older adult and to offer better care in the process of death and dying. It is important to have regular contact with clients in the process of dying so that the occupational therapist is able to know their preferences and desires and act more effectively (Tavemark et al., 2019). Proximity to the older person enables better assistance in death and dying, although it is associated with greater regret in relation to death.

Dealing with death and dying is a complex and challenging task, so occupational therapists need to be prepared. Participants reported that seeking knowledge in the field of Thanatology had a positive impact on the way of dealing with these processes. Participants also cited palliative care study as an aid and training tool. In this sense, it is essential to improve the training of occupational therapists in undergraduate and graduate courses to improve their ability to meet the needs of clients in end-of-life care (Hammill et al., 2017; Talbot-Coulombe & Guay, 2020), including knowledge about aging, frailty and death (Persson et al., 2018). In addition, training in palliative care should help professionals deal with stress and feelings generated from death and dying. Specialized education and training enable professionals to increase their skills and sense of confidence in providing better care at the end of life (Schulz, 2017).

In addition to technical training, participants pointed out the need to adopt personal care measures to better deal with death and dying. These measures included undergoing therapy, seeking leisure and spiritual activities. Self-knowledge can help professionals stay mentally healthy and be able to perform their duties better (Treggalles & Lowrie, 2018). Personal care strategies for professionals to deal with feelings of loss can range from therapy to relaxation exercises and informal conversations with coworkers (Schulz, 2017). Spirituality is identified as one of the factors which can help and support in facing the situation of death in the daily lives of health professionals (Sartori & Battistel, 2017). Therefore, even claiming that death is recurrent in long-term care facilities, occupational therapists need to prepare themselves to deal with the emotional burden of death and dying.

The second theme highlighted the meanings attributed by occupational therapists to the approaches used in facing death and dying, highlighting preparation and coping with death. Accepting the fact that “we are all going to die”, meaning that death is something inherent, inevitable and natural to human beings, allows the occupational therapist to address this issue early with the older people. There will be more time for elaborating on life and death. However, there is a lack of prior preparation in the long-term care facilities for the end of life and Early Care Planning should be discussed and put into practice with residents (Persson et al., 2018). Studies argue that an early approach would avoid feelings of fear and stimulate the fulfillment of desires (Collins et al., 2018; A. Lloyd et al., 2016). In this sense, the participants mentioned the spirituality of the older adults as a tool to help reduce conflicts related to the process of death and dying. In addition, spirituality helps the residents deal with stress and fear of death (Misiorek & Janus, 2019). When approaching older adults about finitude, occupational therapists reaffirm old age as a phase of re-signifying life and preparing for death.

Occupational therapists should consider the significance that other team members and family members attribute to death. Death and dying become less difficult if those around you open up to dialogue. Participants emphasized the need for effective communication with long-term care facilities professionals and family members. Team collaboration is essential and is a resource for identifying signs that precede death of an older adult (A. Lloyd et al., 2016). Clients in the process of dying have an easier time engaging in daily activities when the team works with a common goal (Tavemark et al., 2019). The family must also be present and involved in the death process (Thompson et al., 2019) to be a collaborating agent and defender of the older adult’s wishes (Gonella et al., 2019; Tavemark et al., 2019). Therapists reported the need for dialogue with family members even if the older adult is not yet in palliative care. It is noteworthy that the long-term care facilities presented different realities with regard to family participation, with some cases of older people with little or no family support. In these cases, interactions between occupational therapists and the family can be limited, exacerbating the silence around this theme in institutions.

The occupational therapist’s approach to face the complex issues surrounding death and dying must be broad. The participants highlighted the relevance of welcoming and providing care with a focus on elaborating life and preparing for death. According to the professionals, discussions should be encouraged, and the older adults should be helped to elaborate their own death and grief, both in individual and in group care. In addition, the professionals emphasized the need to promote moments of welcoming and listening so that the older adults express their fears, clarify doubts, expose their feelings and reflect on the types of treatments they want or not to perform. Providing spaces for expression and talking about their feelings can minimize pain and meet the demands of the older adults. Having an open communication channel to address death and dying contributes to better care at the end of life (Tavemark et al., 2019; Thompson et al., 2019).

Death affects the daily activities of people who are dying. Thus, occupational therapists must help the older adults develop new forms of interaction, new perspectives for themselves and the world around them. In this sense, the participants highlighted the encouragement of daily and significant activities which will provide the older adults with a feeling of self-confidence, independence, satisfaction, and well-being. Occupational therapists who work in the process of death and dying need to maximize their client’s ability to participate in daily activities so that they can make the best use of the current period of their lives (Badger et al., 2016). Therefore, stimulating meaningful activities improves quality of life and helps people live and die with dignity (Tavemark et al., 2019).

Occupational therapists also pointed out that they should help the older adults to plan their time left, in addition to organizing practical questions about death and dying. For some older people, death can mean an opportunity for reconciliation, for elaborating regrets and resolving disputes. According to the participants, there are older people who want to schedule their funeral and grant their family access to their assets. A qualitative study carried out with older people diagnosed with terminal illnesses corroborates these results, pointing out examples of measures related to the end of life such as funeral planning, transmitting knowledge to family members and distributing material goods and those with sentimental value (Lala & Kinsella, 2011). Thus, preparing for death enables reconciliation with family members, sharing life stories and family decision-making (Hammill et al., 2019; Tavemark et al., 2019).

Study Limitations

A limitation of this study was the small number of focus groups of occupational therapists working in non-profit institutions. However, there was care taken by the researchers to put the same number of these professionals in the two focus groups to minimize this limitation.

Conclusion

The accounts of occupational therapists revealed that the experience of death and dying permeates the daily lives of those living in long-term care facilities in a complex and conflicting way. Death is part of everyday life, but it is hidden in some institutions. Occupational therapists report that death is inevitable, but fear it will happen when they are present. It is natural, but requires a lot of technical and personal preparation. The approach to death and dying requires action strategies from these professionals which reach the real needs of residents, including end-of-life demands. Therefore, this discussion should be expanded at the long-term care facilities and involve residents, family members and employees, aiming at better care for long-term care facility residents.

Footnotes

Acknowledgments

The authors would like to acknowledge the occupational therapists who consented to participate in this study.

Author Contributions

All authors participated in study design, data collection, data analysis and writing the manuscript.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Carolina de S. Figueiredo

Author Biographies

Carolina de S. Figueiredo is an Occupational Therapist, Universidade Federal de Minas Gerais, Brazil. PhD Student—Rehabilitation Sciences Program, Universidade Federal de Minas Gerais, Brazil. Manager of a Long Term Care Facility in Belo Horizonte, Brazil.

Efigênia F. Ferreira is a Dentist, Universidade Federal de Minas Gerais. PhD—Animal Science/Epidemiology, Universidade Federal de Minas Gerais , Brazil. Full Professor, Dentistry School, Universidade Federal de Minas Gerais, Brazil.

Marcella G. Assis PhD, has Undergraduate degree in Occupational Therapy and doctorate at Demography. Full Professor, Occupational Therapy Department. Faculty, Graduate Program in Rehabilitation Sciences, School of Physical Education, Physical Therapy and Occupational Therapy, Universidade Federal de Minas Gerais, Brazil.

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