End of life and death of residents: Experiences and practices of care facility directors in Portuguese residential care facilities

Abstract

Residential care facilities (RCFs) are places where older people live and usually die. This exploratory qualitative study aims to describe the experiences and practices of the directors of Portuguese RCFs regarding residents’ end of life and death. Data were obtained from 17 care facility directors (CFDs) who participated in three focus groups. Thematic data analysis was performed. The CFDs described their practices and experiences framed within three moments in the life journey of the residents in RCFs: admission and living in RCF; end of life and death; postmortem and new admission – continuing and occupying the vacancy. The results suggest that end of life and death are only addressed in the last days/hours of life of the resident. However, the CFDs’ approach throughout the stay of the residents in the RCF could allow for the expression of their wishes and wills, which could facilitate a good and dignified death.

Introduction

Residential care facilities (RCFs) in Portugal are institutions that provide permanent or temporary collective housing for people aged 65 or over or in situations of greater risk of dependency and/or autonomy (Ordinance No. 67/2012 of March 21, Article 1.2; Portuguese Ministry of Labor, Solidarity and Social Security [MTSSS], 2007). These institutions were meant to promote active and healthy aging, preserve family relationships, and promote social integration. RCFs in Portugal are not designed to be places for palliative or end-of-life care (Connolly et al., 2014; Nascimento et al., 2023). However, during the two last decades, long-stay residents have increased, while palliative care provision is not widely available. Moreover, in Portugal, RCFs are currently institutions where older adults usually go when facing multiple comorbidities, physical and/or cognitive deterioration, functional impairment and frailties, or lack of family support (National Institutes of Health, 2004; Afonso et al., 2022). Thus, RCFs are the places where those persons live their end of life, receive care, and die (Afonso et al., 2022; Lim et al., 2017; Stow et al., 2019; Verreault et al., 2018; Tan et al., 2014). In Portugal, exact numbers of deaths in RCFs are difficult to obtain because in current practice, the death certificate indicates the address where the person lived before admission to the RCF. However, it is estimated that at least 10% of people over 60 years of age experience death in RCFs in Portugal (Portuguese Medical Association, 2020). In this context, managing the deaths of residents is a topic that professionals and institutions need to take care of and prepare for.

Nevertheless, RCFs have full-time residents, many of whom have high levels of care needs, and operate without a core group of healthcare professionals and low ratios of staff per resident (Afonso et al., 2022; Gil, 2019). Ordinance No. 67/2012 establishes the minimum ratio of staff to residents: one care facility director (CFD), one social worker for leisure activities at part-time per 40 residents, one nurse per 40 residents, and one direct care worker per eight residents. The CFD must hold a degree in the field of social or health sciences and is responsible for running the institution, programming activities, supervising staff, and coordinating the individual care plan with the residents. In many RCFs, the CFD is often the only full-time member of the staff with a degree (Gil, 2019).

Further, the literature shows that in RCFs, it is common to avoid talking about the end of life and death to protect older residents and maintain hope in life (Balmer et al., 2022; Martins, 2019; Omori et al., 2022; Viftrup et al., 2021). However, these practices are described as not associated with a good and dignifying death (Österlind et al., 2011; Sallnow et al., 2022), as they restrict the opportunity for people to plan, organize personal affairs, and say proper goodbyes (Sallnow et al., 2022; Steinhauser et al., 2000; Poveda-Moral et al., 2021). Although there is little agreement concerning what good and dignifying death is, several studies have described some key elements (Meier et al., 2016). A good death has been described as a process that includes early identification of death proximity, pain and symptoms management, close relationships with family members, respect for life history, and preferences for the dying process (Campbell, 2020; Simões, 2013; Tenzek et al., 2022; Waldrop & Kirkendall, 2009). Some studies that addressed older adults’ perspectives about the meaning of a good death (Csikai and Maynard, 2020; Jorge et al., 2019; Tipwong et al. 2022) suggest its association with dying peacefully and without suffering, dying without worries (for instance, regarding material inheritances), and dying surrounded by loved ones or at home. Other factors have been associated with the meaning of a bad death, namely the lack of palliative care skills among the staff, excessive focus on treatment and rehabilitation, lack of human resources to care for people at the end of life, and unnecessary hospital referrals (Carlini et al., 2022; Fryer et al., 2016; Kasdorf et al., 2021; Morrison et al., 2021).

The concept of a good death was examined from the bereaved family member’s perspective, resulting in the Opportunity Model for Presence during the End-of-Life Process (OMP-EOLP) (Tenzek et al., 2022). This model identifies key moments throughout the EOLP trajectory lived by close family members. This idea of a trajectory is relevant for our study, since CFDs accompany residents during their stay at the RCF. The OMP-EOLP comprises a timeline, starting from the relative being healthy and continuing through the death of the relative and into bereavement. Within this model, a good death comprises a family presence with the loved one (Tenzek et al., 2022). In this model, a bad death is associated with the family caregiver’s feelings of barriers to care and discontinuity of care (in terms of professional caregivers or place of care), if the death came as a shock or if the patient’s needs were not fulfilled (Tenzek et al., 2022).

Many studies have focused on end of life and death as a result of a terminal diagnosis or from natural causes that take place in palliative care or hospital settings. However, the topic has been rarely explored within RCFs, particularly in Portugal. In Portugal, there are no formal procedures regarding end of life and death in RCFs. Portuguese RCFs are monitored by the Portuguese Institute of Social Security (Instituto de Segurança Social, I.P. [ISS]), which provides guidelines through quality manuals (Ordinance No. 67/2012 of March 21, Article 19.1). The Manual of Key Processes for RCF (Manual de Processos Chave para ERPI; 2007) contains guidelines that include the dimensions of death and dying (recommended, not mandatory). The Manual recommends the use of the expression “completion of life cycle” instead of “death and dying” to avoid potential obstacles to adhering to healthcare plans (Models for Evaluating the Quality of Social Responses, 2007), showing that social norms prevent talking and dealing with death as a universal and inevitable process.

This study aims to describe the experiences and practices in Portuguese RCFs regarding the end of life and death of residents from the perspective of the CFDs. The results are relevant to identifying best practices and providing guidelines that may be useful for CFDs as well as for other RCF practitioners.

Methods

A qualitative approach was chosen to allow participants to express their experiences about a topic that is scarcely addressed, particularly in Portugal (Carlini et al., 2022; Fryer et al., 2016; Nascimento et al., 2023). A focus group is a research technique that collects data through group interaction (Kevern & Webb, 2001) and an effective way to explore participants’ practices and experiences. Further, it provides an interactive group setting, allowing for different experiences and practices to be shared. This method has been used by other authors in other countries to explore related topics, such as caring for dying residents (Fryer et al., 2016). Ethical approval for the study was granted by the Ethics Committee of Beira Interior University (CE-UBI Pj-2021 065:ID1115).

Procedures

The participants were intentionally and non-probabilistically recruited through an invitation sent by email by the first author in this study to her professional network, explaining the study objectives and the inclusion criteria. This invitation was reinforced by a phone call, during which the study was further explained and the inclusion criteria were confirmed. The inclusion criteria were having at least two years of professional experience as a CFD in an RCF and working as a CFD at the time of the focus group. Twenty-eight CDFs met the criteria and agreed to collaborate at this point. Informed consent was obtained, including video recordings of the focus groups. The participants were asked about the best day/time to perform the focus group. Three focus groups were scheduled, and the CFDs were distributed according to their availability. Three focus groups were conducted between February and March 2022 via the Zoom platform (due to the COVID-19 pandemic-related constraints still in force), lasting approximately 120 minutes each. However, only 17 CFDs showed up for the focus groups; the remaining 11 who previously confirmed their participation either reported not being available due to unexpected situations or did not respond to further communications.

The sessions were conducted by the first and second authors and recorded. At the beginning of each session, participation and sharing were encouraged; for instance, participants were asked to keep their microphones on to be more prompt to participate. They were also asked not to divulge any information mentioned in the focus group. Mentioning the names of the RCFs was avoided during the focus group sessions. The session records were stored in a password-protected folder, which will be deleted at the end of the study. The participant’s names were not used in the transcripts; they were substituted with a number.

Participants

This study comprises 17 participants, aged 28–56 years old, with 2–30 years of experience as CFDs in Portugues RCFs. Their areas of training were social work, nursing, gerontology, and psychology (Table 1).

Table 1. Participants’ characteristics.

Participants	Age	Gender	Academic Degree	Years of professional experience in RCFs	Years of professional experience as CFD
P1	42	F	* Psychologist	12	12
P2	51	F	Social worker	5	5
P3	56	F	Social worker	30	11
P4	34	F	Gerontologist	7	4
P5	55	F	Social worker	30	30
P6	30	F	Gerontologist	5	5
P7	31	F	Gerontologist	8	5
P8	43	F	Social educator	14	11
P9	40	F	Social worker	14	14
P10	36	F	* Gerontologist	13	13
P11	47	F	Psychologist	24	24
P12	28	F	* Gerontologist	6	6
P13	35	F	Social educator	13	12
P14	48	F	Social worker	20	15
P15	37	F	Social worker	14	14
P16	42	M	Social worker	14	9
P17	34	F	Nurse	2	2

* Reported having training in palliative care, end-of-life, and death.

Instrument

The focus group guide addressed the study aim and was based on a literature review (Kalu & Bwalya, 2017; Wilkinson, 2004), particularly OMP-EOLP (Tenzek & Depner, 2017, 2022). The participants were invited to share their practices and experiences: “As a CFD, can you please describe the end-of-life and death practices, considering the key stages in the journey of RCFs’ residents, from the admission to the occupation of vacancies by a new resident?” During sharing by the participants, the facilitators were flexible in listening to and exploring what the participants were sharing.

Data analysis

The participants’ interventions were recorded and transcribed verbatim. The data analysis was performed in European Portuguese. The transcriptions were analyzed using thematic analysis (Braun & Clarke, 2006, 2021), an appropriate methodology to identify experiences and practices and examine patterns (Braun & Clarke, 2006, 2021). In this specific example, the analyzed theme is "admission and living in RCF", and subthemes such as "initial interview: residents and/or relatives share death-related wishes and provide quality of life" were identified. The thematic analysis involved identifying patterns in the transcriptions related to these subthemes. A specific analysis example is presented “We try to make sure that the days they stay here are spent in the best way, having an active end of life, with a proper follow-up, and a good back-up” (P13). The highlighted quote emphasizes the importance of ensuring that residents have an "active end of life," with adequate follow-up and support. This thematic analysis allows for an understanding of the experiences and practices related to admission and living in RCF, by examining emerging patterns in the transcriptions and highlighting participants’ perceptions of crucial aspects such as quality of life and end-of-life support.

The data analysis was conducted as follows. The first author read the transcripts and mapped all the excerpts (with reference to the participant), considering the objectives of the study, which were shared with the fifth author. The fifth author analyzed the material and refined the mapping. The first and fifth authors then met to discuss the mapping and define the theme and subtheme designations until a consensus was reached through a process of successive refinement. To improve accuracy, the development of the analysis was discussed by all the authors. The results are presented using excerpts from the participants.

Results

The CFDs described three themes that encompass stages (key moments) in the journey of the RCFs’ residents, considering the CFDs’ experiences and practices related to the end of life and death: (i) admission and living in RCF: assuring quality of life; (ii) end of life and death: care and death management; and (iii) postmortem and new admission: continuing and occupying the vacancy. Each theme included subthemes (Table 2).

Table 2. Care facility directors’ practices and experiences regarding residents’ end-of-life and death: Themes and subthemes.

Themes and subthemes	Participants (n)
Admission and living in RCF: assuring quality of life
Initial interview: residents and/or relatives share death-related wishes	13
Providing quality of life	12
End-of-life and death: care and death management
End-of-life: care and communication with family	17
Death: managing until body removal	17
Postmortem and new admission: continuing and occupying the vacancy
Attending burial ceremonies: supporting mourning	17
Closing the formal process: admitting a new resident	12

Admission and living in RCFs: Assuring quality of life

The participants described the residents’ admission and living in RCFs, with a focus on assuring quality of life (Table 2), emphasizing two subthemes: (i) initial interview: residents and/or relatives share death-related wishes (13 participants) and (ii) providing quality of life (12 participants).

Initial interview

Residents and/or relatives share death-related wishes. The CFDs shared that the initial interview was usually conducted on the first day of the resident’s stay in the RCF to collect and provide general information to residents and relatives. They did not mention end of life or death at this time: “At the beginning, we don’t talk much about the end of life, as we want to deconstruct the idea that people come here [RCF] to die” (P17). However, participants mentioned that some residents and/or their relatives expressed some death-related wishes: “Some of them are already prepared for the end. They come with specific objects and clothes. They already have in the wardrobe a space to put those things they intend to take with them one day” (P14).

Providing quality of life

The CFDs stated that their goal was to provide quality of life for the residents, which involved developing a sense of belonging to the institution and offering pleasant moments: “We try to make sure that the days they stay here are spent in the best way, having an active end of life, with a proper follow-up, and a good back-up” (P13). Involving relatives in the RCF dynamics and activities was described as an indicator of quality of life: “We always involve the family from the beginning; this is very important because there is a whole pathway that must be worked from the start” (P10).

End of life and death: Care and death management

The participants described end of life and death as a period when the emphasis is on care and death management. This period went from when the resident’s death seemed imminent (the last days and/or hours), involved the moment of death, and ended with the removal of the body from the RCF (Table 2). This theme comprises two subthemes: (i) end of life: care and communication with family (17 participants); (ii) death: managing until body removal (17 participants).

End of life: Care and communication with family

When the death of a resident seemed imminent, the CFD priority was to ensure adequate healthcare. The CFDs relied on nursing professionals, particularly due to the absence of a full-time doctor, and some RCFs were supported by community palliative care teams. Often, this was a moment to ponder whether to refer to an emergency service. Three scenarios leading to referrals to emergency services were mentioned:

1. Family members, in an attempt to save the life of their loved ones, decided on the referral to emergency services. The CFDs mentioned difficulty in explaining to families the clinical and biopsychological drawbacks of the referral.

2. CFDs decided for the referral to avoid potential accusations of inadequate assistance from some relatives: “We really must refer to the hospital (…) with some families. I have been through several situations, some of them quite difficult” (P11).

3. CFDs, together with the healthcare team and family members, decided on the referral to emergency services as a measure to ensure resident comfort (in severe pain and/or require assistance beyond what the RCF can provide): “What really matters is that the person is on comfort measures” (P5).

During this end-of-life period, CFDs must manage communication with family members. Participants mentioned personal contacts with relatives to provide updates about the resident health situation: “I make a point of calling the family member in charge to let them know how the day was (…), how the situation was evolving” (P12). When death was imminent, most CFDs extended close relatives’ visiting hours, “allowing the family to accompany them 24 hours a day” (P5). Some participants mentioned that when the resident was on a shared bedroom, they often moved that person to a single room or a private space to allow family members to be more present in the last moments: “The person is removed from the comfort zone, the bedroom; but the family is given the possibility to be present” (P11).

Death: Managing until body removal

When the resident died, the CFDs informed family members, usually involving the healthcare team in the process: “Never, rarely alone… We take the multidisciplinary approach, me, the doctor, the nurse, and the psychologist” (P10). Some participants referred to the management of sudden deaths. They stated that trust in the institution was decisive for the acceptance of the sudden death by the family members: “If from the beginning we manage to build a trusting relationship, (…) regardless of whether the resident die suddenly or expected, (…) families are reassured” (P6). Following the notifications of family members, participants needed to inform and support the staff. Various supportive measures were identified, such as allowing staff breaks (“allowing the staff to go out and have a coffee,” P6), providing words of support and warmth, and sessions with a psychologist (when available) for emotional well-being. The participants considered the need to protect the other residents. Therefore, some measures were adopted. When a resident died, the CFDs ensured that the deceased was discreetly maintained: “A schedule is agreed with the mortuary agency for removing the body to ensure that the other residents do not see” (P6).

When a death occurred in a shared room and during the night, “The person who died stays there as if they were asleep, and the other resident most of the time doesn’t even notice. If it occurs during the day, we try to get the other resident into the activity room” (P17). This period ended with the removal of the body from the RCF. Some CFDs reported active participation in the preparation of the body to ensure proper procedures. Some mentioned, as part of the respectful handling of the deceased, “(…) a concern covering the body, (…), always providing a cross, a candle, and an image of the Virgin Mary in the room” (P11).

Postmortem and new admission: Continuing and occupying the vacancy

Postmortem and new admissions comprised continuing and occupying the vacancy. It involved: (i) attending burial ceremonies: supporting mourning (17 participants), and (ii) closing the formal process: admitting a new resident (12 participants).

Attending burial ceremonies: Supporting mourning

CFDs usually attended burial ceremonies, together with staff members and, in some cases, residents. This collective representation conveyed institutional support and a meaningful presence: “The institution is represented both by the technical team and by the general staff and also a meaningful presence of residents” (P11). Informing other residents was usually handled after body removal and before ceremonies. Some CFDs just informed other residents who were close to the one who died, individually or in group: “We talk to that group (…) and they approach us, and we actually sit there, with the closest group, and we explain to them” (P17). Other participants intentionally concealed the death, pretending nothing had happened. Despite these efforts, residents perceived the absence of the deceased person, particularly when the person who died was actively engaged in shared spaces and activities. When a resident asked, the CFDs privately shared the death and provided emotional support, usually drawing on “positive memories of the resident” (P16). However, CFDs mentioned that residents often faced the death of another resident with seemingly some “indifference,” particularly residents who had experienced multiple losses. Moreover, residents seemed to be “prepared,” dealing in a lighter way and apparently keeping emotional distance: “Someone who is 80/90 years old has had many losses; they deal with it in a lighter way” (P3).

Family members’ responses to the death of a loved one were diverse. Some accepted the loss, engaging in positive reminiscence during funerals: “At the funeral, we have had situations of being there with the family and remembering happy, real moments” (P16). Others, even if death was expected, expressed feelings of revolt and denial: “(…) they blame everything and everyone” (P3). In the latter situation, the CFDs responded by emphasizing the quality of life provided until the very end: “The person had quality of life until the very end, they were supported, we did everything that should be done. This reassures the family” (P16).

Closing the formal procedure: Admitting a new resident

Participants expressed a dilemma in the closure of the formal process, since they must balance not pressuring grieving families with administrative and financial procedures. CFDs reported an average waiting period, ranging from one week to one month, for families to collect the personal belongings of the deceased and close the formal process. This period aimed to provide families with sufficient time for grieving while fulfilling administrative procedures: “(…) we wait sometimes a month, sometimes a week, sometimes two weeks, for the family to come and collect the personal belongings of the deceased, because we felt it was the most appropriate” (P11). Upon the death of a resident, the CFDs initiated admission of a new resident. This involved a strategic selection considering factors such as room profile and internal changes: “(…) what I do is look at the waiting list, work out which three candidates I will take to the administrative board within the profile of the room where the vacancy arose or within the changes I can make internally.”

Discussion

This study addresses the experiences and practices in Portuguese RCFs regarding the end of life and death of residents from the perspective of the CFDs. The findings suggest three themes that portray a timeline in the residents’ journey at RCFs: (i) admission and living in RCF – assuring quality of life; (ii) end of life and death – care and death management; and (iii) postmortem and new admission – continuing and occupying the vacancy.

The results portray a timeline from admission to occupancy of the vacancy by a new resident. The OMP-EOLP created from the bereaved family member’s perspective also describes a timeline from being healthy to bereavement (Tenzek et al., 2022). A parallel may be made between the OMP-EOLP and our results. The admission and living in the RCF is comparable to being healthy, since it entails the period older adults live in the RCF before the end of life and death become imminent. However, residents are not usually “healthy” when admitted, since most of them opt for an RCF due to multiple comorbidities, functional impairment, and frailties (Afonso et al., 2022; National Institutes of Health, 2004). The CFDs in this study described this period with an emphasis on quality of life, which has been identified as one of the most important outcomes of care services for older adults (van Leeuwen et al., 2019). CFDs’ practices seem to separate quality of life from preparing a good death. However, some literature has shown that quality of life and preparing a good death can be concurrent, for instance, by giving time to the person and his/her family to organize personal affairs and express preferences for the dying process (Carlini et al., 2022; Kasdorf et al., 2021; Poveda-Moral et al., 2021; Sallnow et al., 2022; Steinhauser et al., 2000; Tenzek et al., 2022). In fact, at admission, some residents and/or relatives share death-related wishes, which can be perceived as a sign that those residents and their families want to express end-of-life and death wishes.

The OMP-EOLP period of continuing through the death of the relative seems similar to the “end of life and death” in our study. However, the “continuing through the death” period is portrayed as a long period, while the “end-of-life and death” period in RCFs seems to be short, comprising the last days and/or hours of the resident’s life, the death, and ending with the removal of the body from the RCF. The OMP-EOLP was designed for healthcare settings in which people go when they are suffering from a clinically severe and terminal situation. A RCF is a residential place for living, not meant for the death and dying of residents. However, in general, it is good that a person dies in a place designed for living instead of moving around or being moved through different facilities, since this portrays discontinuity of care and comes with an additional burden for relatives and the dying person (Tenzek et al., 2022). The third period in the OMP-EOLP involves bereavement, which in RCFs comprises port-mortem and new admissions, involving attending burial ceremonies and closing the formal process, with admitting a new resident. It is an intense period for CFDs in practical and emotional terms, but it is a short period, comprising a maximum of one month.

CFDs place a great emphasis on living in RCF and assuring quality of life in the trajectories of residents in RCFs from admission to a new admission receive. End of life and death and postmortem and new admission in RCFs seems a compressed process, probably occurring in less than one month, considering that, according to our participants, end of life and death entail last days/hours, and mortem and new admission may take a maximum of one month.

Overall, our findings suggest a “pact of silence” (Lemus-Riscanevo et al., 2019) around resident’s end of life and death in RCFs. The conspiracy/pact of silence has been described in palliative care as communication failures “typical of limited life expectancy prognosis,” which may be explicit or implicit (Lemus-Riscanevo et al., 2019, p. 24). Silence can occur in two forms (Lemus-Riscanevo et al., 2019): conspiracy (involves family members and health-care teams who withhold full or partial information from the patient), or pact (patient, relatives, and health-care team agree not to talk about the disease process, despite having this information). In RCFs, our results suggest an implicit pact of silence that involves all staff, including CFDs, other residents, residents who are at the end of life, and their relatives. Even when death occurs, that pact remains regarding other residents, involving pretense (not saying when not asked). However, the presence of close relatives tends to be assured in RCFs at the end of life and death, as well as privacy, and even the presence of other close residents in burial ceremonies, which are good practices (Balmer et al., 2022; Tenzek et al., 2022; Zimmermann & Rodin, 2004). The pact of silence is well-intentioned, and even aligns with some Portuguese social norms around death and dying (Jordão & Leal, 2014). However, negative consequences are overlooked, such as ignoring a person’s preferences, hindering proper goodbyes, and limiting person-centered care at the end of life, which have been reported as care dehumanization (Lemus-Riscanevo et al., 2019).

Considering the CFDs’ accounts, some residents in several ways express their willingness to approach issues related to end of life and death. For instance, some express wishes at the initial interview; others seem prepared and dealing in a light emotional way with another resident’s death; or some seem indifferent to someone else’s death in the RCF. Quality of life can be extended to embrace end of life and death. Nevertheless, CFDs are not well prepared and may need proper training to address these topics, as well as a better understanding of their own relationship with death (Lemus-Riscanevo et al., 2019). RCFs and CFDs probably need to extend assuring quality of life to involve the end of life and death. Death is inevitable and a part of life. Having a good and dignifying death is part of a good life. Death is an integral part of a long life (Österlind et al., 2011). With a lack of trained staff and considering the common way of avoiding talking about death, CFDs could ponder discussing advance directives of will with residents, which could allow staff to be aware of resident’s living wills (Sallnow et al., 2022). As this is a more biomedical document, it can serve to understand whether the residents want or do not want to talk about end of life and death or to express some preferences.

Theoretical implications

Approach from the Perspective of CFDs: This study contributes to understanding the experiences and practices in Portuguese RCFs, especially concerning the end of life and death of residents, from the perspective of CFDs. This may enrich existing literature on end-of-life care and death management in residential care contexts. Development of Temporal Themes: The identification of three themes describing a timeline in residents’ journeys in RCFs - admission and living, end of life and death, and postmortem and new admission - offers a conceptual framework that can inform future research and theorization on the aging and dying process in residential contexts.

Parallels with the OMP-EOLP: Comparing the results of this study with the OMP-EOLP (End-of-Life Planning Model) highlights similarities and differences in transition processes throughout the end of life, providing valuable insights into end-of-life care practices in different care contexts.

Practical implications

Emphasis on Quality of Life: The results underscore the emphasis of CFDs on residents’ quality of life, from admission to new admission. This suggests the importance of policies and practices that promote a holistic approach to ensuring residents’ well-being and comfort at all stages of the aging process.

Challenges in Transitioning to End of Life: The compression of the end-of-life and death process in RCFs may pose practical and emotional challenges for CFDs. This highlights the need for additional support and resources to effectively manage these transitions and provide quality care to residents and their families.

Approach to the Pact of Silence: The identification of a "pact of silence" surrounding residents’ end of life and death suggests the need for reflection on communication practices and the promotion of a culture of openness and transparency regarding these issues. This may involve implementing training in effective communication and patient-centered care practices for CFDs and other healthcare teams.

These theoretical and practical implications can inform future policies, practices, and interventions to improve end-of-life care and death management in RCFs, aiming to enhance the quality of life and well-being of residents and their families.

Research limitations and perspectives

This study has some limitations. The study involved 17 participants from the first author’s professional network. A larger number would be desirable for a more comprehensive view of the practices and experiences related to end of life and death in RCFs. In addition, involving participants out of the author network would allow for a greater diversity of practices and experiences. This study focused on the insights of the CFDs and, therefore, did not cover those of other staff and stakeholders. Future studies could obtain the views of other professionals, residents, and family members. In this study, the focus group was used; future studies may draw on more ethnographic methodologies to gain access to a deeper and more comprehensive understanding of the end of life and death of RCFs’ residents.

Conclusion

The theoretical implications of this study, particularly the identification of temporal themes and the emphasis on the CFD perspective, provide insights that can be applied across multiple RCFs to improve end-of-life care and death management practices. Understanding the temporal themes identified in the study provides a framework for understanding the journey of residents in RCFs as they approach the end of life. This framework can be used by RCFs to develop standardized protocols and guidelines for managing transitions during the end-of-life phase. By recognizing the distinct phases, from admission to postmortem and re-admission, RCFs can adapt care plans and interventions to meet the evolving needs of residents and their families. Incorporating the CFD perspective provides a broad point of view. By recognizing the role and expertise of CFDs, RCFs can promote interdisciplinary collaboration and communication among the various stakeholders involved in end-of-life care. This collaboration can lead to more holistic, person-centered approaches to care, addressing not only medical needs but also the emotional and spiritual aspects of the dying process.

The study’s conclusions highlight the importance of policies and practices that prioritize quality of life throughout aging and the end of life. RCFs can use this information to advocate for policy changes that support comprehensive, compassionate care for older adults in residential settings. This may involve implementing training programs for healthcare professionals, strengthening communication strategies and promoting advanced care planning initiatives. The identification of challenges, such as the “pact of silence”, highlights the need for RCFs to address the communication barriers surrounding end-of-life discussions. By promoting open dialogue and transparency, RCFs can empower residents and their families to express their preferences and make informed decisions about their care. This may involve educational campaigns, support groups and training initiatives aimed at improving communication skills among professionals.

In summary, the theoretical implications of this study offer important information for the development of policies, practical guidelines, and interdisciplinary collaboration in RCFs. By recognizing the temporal dynamics of end-of-life care and integrating the perspectives of

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by national funds through FCT - Fundação para a Ciência e a Tecnologia, I.P., within CINTESIS R&D Unit [UIDB/4255/2020 and UIDP/4255/2020] and within the scope of the project RISE [LA/P/0053/2020].