“It turned out right for both of us”: A qualitative study about a preference for home death and actual place of death

Abstract

This qualitative study was conducted in Norway to explore couples’ preference for home death when one of the partners was dying from cancer, and what made home death possible or not. We conducted dyad interviews with five couples. After the patients’ death, the spouses participated in individual interviews. The data were interpreted using thematic narrative analysis. One patient died at home, and three died in a healthcare institution. The narratives show how interdependency and mutual care were important when dealing with home death. When care needs were manageable at home, home was perceived a safe place and the preferred place for death. When care needs were experienced to become unmanageable at home, the sense of safety changed and admission to a health care institution was considered the best option. Regardless of place of death, the spouses experienced the end to have turned out right for their partner and themselves.

Introduction

The (cancer) patient is often described as autonomous, active, and responsible, capable of knowing what he/she prefers, also when it comes to place of death (Driller et al., 2022; Thoresen & Røberg, 2022). In Norway, the context for this study, healthcare policy highlights that patients should die at home if they wish (Regjeringen, 2020). However, the choice discourse in end-of-life care policy and the empowered dying patient have been questioned (Borgstrom & Walter, 2015; Thoresen & Røberg, 2022), and more attention is paid to end of life as a family issue, mediated by family biography (Higginson et al., 2013), family dynamics and expectations (Broom & Kirby, 2013) and negotiations (Aurén-Møkleby et al., 2023). Patients may choose to die where it is most convenient, not only for the patient, but also for the family (MacArtney et al., 2016), and in the last phase of life, patients seem to have a pragmatic approach toward place of death (Pollock et al., 2023). However, among cancer patients worldwide, about 60% prefer to die at home (Fereidouni et al., 2021), and cancer patients who live with a partner are more likely to have a preference for home death as well as dying at their preferred place compared to those living on their own (Cai et al., 2020; Kjellstadli, 2020).

Preferences and decisions regarding place of death are shaped by patients’ and caregivers’ personal histories and are described as a contextual, personal, relational as well as conditional and flexible process (Gerber et al., 2019). Cancer caregivers are most often spouses (Lambert et al., 2016), and paying attention to living in patient–carer dyads can broaden our understanding, not only of the illness experience, but also of the relational aspects and importance of everyday life, especially during the end-of-life (Broom et al., 2020). We understand relationality as a primary and defining aspect of life (Sköld, 2021), and adopt a “relational view of autonomy, which takes inevitable human dependency and vulnerability into account” (van Nistelrooij et al., 2017, p. 643). Relationality in the present study applies to partnerhood and the shared everyday life of couples living together in their home (Sköld, 2021). From the perspective of partnerhood, we explore how a preference for, and the process of, home dying, are shaped and articulated by couples where one of the partners have a limited lifespan due to cancer.

To facilitate home deaths in Norway, primary healthcare services, in collaboration with specialized healthcare services, are expected to provide palliative and end-of-life care (Trier et al., 2022). In general, the municipal home care services (MHCS) provide and tailor the care for cancer patients living at home, preferably in collaboration with the patient’s general practitioner (GP) and, if available, palliative care teams in the specialist healthcare services (Regjeringen, 2020). The MHCS and specialist palliative care are publicly funded. Continuous round-the-clock service from healthcare personnel in the home is usually not offered by the MHCS.

As more cancer patients receive home-based care, the responsibilities of and strain on informal caregivers have probably grown (Kaasa et al., 2018); most care for the dying is the responsibility of the dying person and their family (Sallnow et al., 2022). The next-of-kin provide practical and emotional support at home, often without being sufficiently prepared for the care tasks (Kaasa et al., 2018; Mohammed et al., 2018). Also, familiarity with death is no longer common knowledge, especially in high-income and middle-income countries (Sallnow et al., 2022). Caring for a dying family member at home can provide a sense of reward, a possibility to give something back, but can also be perceived as an obligation, a task with challenges along the way (Goldblatt et al., 2019; Johannesen et al., 2023; Ongko et al., 2023; Thomas et al., 2018). The dying person’s preferred place of death may remain the same along the illness trajectory (Nysæter et al., 2022), but for some patients, this changes as the illness progresses (Gerber et al., 2019). Ideals and the realities regarding place of death are sometimes difficult to combine (Pollock et al., 2023).

To our knowledge, there is a lack of studies that provide both a prospective and retrospective viewpoint on home death among cancer patients, specifically focusing on couples and bereaved partners. We argue that a methodology that allows for a coherent narrative about couples’ experiences of planning for and realizing or not realizing home death might contribute to a broader understanding about end-of-life at home and place of death as a relational matter.

Aim of the study

The aim of the present article is to develop insights into the broader and relational process of home deaths, as well as to explore what led to actual place of death. We pose the following research questions: (1) How do seriously ill cancer patients and their spouse reason and reflect upon a preference for home death? (2) Where did the patients die, and how do the bereaved describe and reflect upon the process that led to the actual place of death?

Materials and methods

The ill partner will for the remainder of the paper be referred to as patient, and his/her life partner to as spouse. Participants refers to all participants, i.e., patients, spouses, or dyads.

Study design

This study has a qualitative research design informed by interactionism focusing on how meaning is constructed and shaped within contexts and through social processes (Järvinen, 2017). In narratives, meaning and identity are created out of experience, often by moving back and forth to the past, present and future when telling one’s story (Riessman, 2008). Hence, we understand knowledge derived from our interview data as re- and co-constructions colored by time, existing understandings and values (Burr, 2015). Married couples where one of the partners was seriously ill with cancer and preferred home death participated in dyad interviews. After the patient had died, the spouse who had participated in the dyadic interview participated in an individual follow-up interview. The before–after design and the inclusion of both the patient and the spouse allowed us to explore home death as a preference and as something experienced within the dyad. In the analysis, we adopted a thematic narrative approach, which allowed for attention to detailed accounts as well as for an overarching storyline about home death (Riessman, 2008).

Setting and recruitment

To recruit participants, we collaborated with primary healthcare nurses from four municipalities and medical doctors from one specialist palliative care department, all located in the southeastern part of Norway. Inclusion criteria were couples living together, aged 18 years and older, where one partner had cancer and preferred home death and where the couple had been informed of the patient’s limited life expectancy.

Healthcare professionals introduced the study to eligible couples. If the couples were interested in participating, contact was established between MAM (the first author) and the couple. Between September 2021 and February 2023, 18 couples expressed interest in the study and received information. In 13 cases, we could not proceed with an interview. Seven patients worsened or died within a few days, three couples changed their minds regarding participation, and two couples failed to respond by telephone or e-mail after receiving the study information. One couple disagreed on whether to participate or not. Hence, five couples were included and interviewed. At the time of submitting the manuscript, four of the five patients had died, consequently four bereaved spouses have participated in the individual interviews.

Participants

Of the participants (n = 10), all were Norwegian born, except for one participant who had a Middle European background. The patients, two men and three women, were aged between 59 and 79 years. The spouses, three men and two women, were aged between 62 and 76 years. The couples either lived in an apartment in a city (n = 2) or in a house in a rural area (n = 3). All lived in heterosexual marriages and had been married for between 20 and almost 50 years. All had adult children living on their own. Three of the couples had grandchildren. The patients had been diagnosed with their current cancer between one and about 10 years earlier. Two patients had metastatic disease. The care needs varied from checking medications to administering enteral feeding or caring for stomas. Hence, the visits from the MHCS ranged from weekly to several times throughout the day and night. The couples could contact the MHCS by telephone around the clock and the cancer coordinator and the general practitioner (GP) on weekdays. Three patients had contact with a palliative care team. Eight of the participants were retired. One patient and one spouse were on sick leave. The participants’ (former) professions varied (craftsmen, healthcare personnel, organizational and administration workers, and academics).

The interviews

All interviews were performed by MAM and were structured as a conversation with open-ended questions. The dyadic interviews took place in the couples’ homes. In dyadic interviews, participants can draw on each other’s statements and comments; hence the method was suitable for exploring the shared experiences of couples (Morgan et al., 2013) in this specific study on issues pertaining to home death. Also, the patients needed help and support from their spouses during the interviews due to their poor health condition. The dyadic interviews lasted between 30 and 90 min. The individual interviews with the spouses took place between 8 and 11 weeks after the patient’s death. Three spouses chose to be interviewed in their home whereas one preferred to meet in an office at the workplace of the interviewer. The individual interviews lasted between 30 and 50 min. The generation of data, that is, the number of participants and the length of the interviews, was guided by the concept of information power, which relates to dialogue quality, sample specificity, and analysis strategy (Malterud et al., 2016). In the dyadic interviews, the patients’ state of health and general condition also affected the duration of the interviews. At the end of each interview, MAM wrote short field notes, which included comments on the interaction, and for the dyadic interviews also whether there had been medical equipment in the home, and how the patient had been physically affected by the illness. All interviews were audio recorded and transcribed by MAM.

Ethical considerations

Ethical aspects had to be considered during the recruitment process, such as not being too forward and stressing the couple in a challenging situation, while the patient’s time was limited. Although all involved knew that death and dying would be the focus of the interviews, MAM was sensitive to whether the themes could upset the participants or cause distress. The participants were encouraged to contact the cancer coordinator or MAM if they needed further support or had questions.

The study was conducted in accordance with the Helsinki Declaration (World Health Organization [WHO], 2022). The research project was approved by the Regional Committee for Medical and Health Research Ethics of Eastern Norway (Project No. 95689) and the Norwegian Data Inspectorate for Research (Project No. 432421). The participants signed individual informed consent forms before the interviews started. The transcripts and audio recordings were stored at the University of Oslo on a secure research platform that complies with current privacy regulations. Only the authors had access to the material.

Data analysis

MAM initiated the analytical work by reading all the interview transcripts for re-familiarization with the texts. At the same time, the coauthors read the interview transcripts. Our immediate understandings and interpretations were then reflected upon and critically discussed in the research group.

We proceeded by drawing on the concept of thematic narrative analysis as described by Riessman (2008), working with each interview separately, “isolating and ordering relevant episodes into a chronological biographical account” (Riessman, 2008, p. 57). To explore the material for nuances, possible dilemmas, or contradictions, and to guide us in answering the research questions, we posed the following analytical questions: How did the couples display and articulate the preference for home death? How did the spouses understand what happened when the patient died? Next, MAM, GA, and LT advanced the analytical work: statements from all interviews were viewed in context, forming a narrative that shows similarities, diversities, and differences. To answer the research questions, a chronological timeline was constructed; this is reflected in the results section. The analysis and the analytical process were regularly discussed by all authors, allowing us to question and refine the interpretations.

Results

The results are structured as a storyline, presented in three temporally ordered phases showing the dynamics of preference and experience related to home death: “A safe place,” “One day at a time,” and “It turned out right for both of us.” In the first two sections, we present the results from the dyadic interviews. In the last section, we present the results from the individual interviews with the spouses. During the interviews, participants would go back and forth to issues, returning to topics important to them. Therefore, to construct an intelligible and coherent presentation, some quotations are combined from various parts of a specific interview. These instances are marked with an ellipsis within square brackets (i.e., […]). All names are pseudonyms.

A safe place

This first section will explore the reasons for a preference for home death, and how the couples talked about and envisioned the forthcoming death. In four of the five couples, the patient was the one who had initially stated that they wanted to die at home. This preference was supported by their spouse and adult children. However, it took some spouses time to adapt to the idea and take on new tasks and knowledge that were needed to care for the patient at home. In one case, the palliative care team had first mentioned home death as a possibility, an idea that the couple immediately favored.

One common and significant reason why the five patients wanted to die at home was the option to be close to and spend time with family, particularly the spouse, children, and grandchildren. The couples described that it was more convenient for the children to just “pop by” and how the home worked as a family hub in quite a different way compared to gathering around the sick person in a hospital or a nursing home. In other words, being at home maintained close relations and was associated with having time for talking and being together. In the dyad interview with Mia and Ron, Mia talked about the importance of being together and how she envisioned her deathbed. She depicted herself lying in bed, surrounded by her children and Ron, who “sit and hold me when I leave—when I leave the world.” Mia had lived with a severe form of cancer for about a year and had been told how her death would probably be “easy.” She related the following, with support from Ron:

Mia: I don’t want the hospital system influencing when I die. I don’t think it will be an ugly death or that it will be very difficult. I think it will be like the doctor said. You get weaker and weaker, and then you fall asleep. Therefore, I want to have my family around me. So, it’s a desire to have them with me, without too many professionals running the show.

Ron: We don’t need that. I manage that.

During the interview, Mia returned to how her death should be arranged, emphasizing the role of her family: “We need to prepare ourselves to make a good situation, and, therefore, I think that we can take charge ourselves, as a family.”

Closely related to the significance of being with their loved ones, was the meaning embedded in spending time in familiar surroundings. Using the well-known living room and comfortable chair, falling asleep in one’s own bedroom with the view one loves, and maintaining a homely atmosphere and everyday routines, such as smoking at the kitchen table, lying in the living room together watching a film, or inviting friends over, were important to the patients.

Abe, one of the patients, had lived with symptoms of cancer for a long time. Gradually, his breathing had been highly affected, yet the symptoms were still manageable at home. When asked about his preference to die at home, Abe emphasized the importance of a “safe place,” and how he and his wife Sue stood together in this situation. He explained:

The stays I’ve had in hospital up until now, they haven’t been good. I’ve had some bad experiences and that’s probably also a reason why I want to be at home: avoid the hospital. […] I want to be here, and Sue wants me here. Here I have my family, here I have everything I know. Here I have the food I want. I sleep where I want, mostly in a chair in the living room. So, understand me, all the security is here.

With the unknown process of dying ahead, we understand the patients’ preferences for being with their loved ones in the familiar family home associated with a feeling of safety and control. Control is also related to Mia’s and Abe’s references to the hospital. If possible, they did not want to die there. For Abe, this was because he had had some previous bad experiences; for Mia, this was perhaps because she was a healthcare professional herself who knew that the hospital context and routines could be incompatible with her end-of-life wishes. However, the help and support from professional health care made the preference to stay at home possible, given that the five patients received help and some of them received daily care. Some of the patients needed substantial medical and practical support from both their spouse and professionals, and the care need may have foreshadowed how the very end of life and death could become challenging to manage. However, this did not take away the hope for home death but was part of an overall uncertainty related to whether home death would be possible to realize.

How home within a couple’s present situation was perceived a safe place was related to the patient’s illness story and their shared biography and experiences. Next we present how the couples perceived the future, a future that they were unsure about.

One day at a time

When the couples talked about home death, this was always communicated as a preference with caveats. From the patient’s perspective, the concern was related to becoming a burden for their spouse, mostly associated with the bodily care being “too” much, such as dealing with bodily fluids and the demanding physical care tasks, such as moving to and from a bed or chair. The spouses communicated uncertainty related to whether they had the knowledge and skills needed to provide good enough care in the end-of-life phase.

Beth and Carl openly shared their concerns about home death. Beth, the patient, frequently needed help with changing positions or when she felt nauseous. Her condition could change quickly, and the changes caused severe discomfort and pain. Carl had poor health himself and worried about whether he was able to provide good enough care for Beth.

Beth: I think home death is a good possibility for those who can manage it. But it takes resources, and someone needs to provide that. Family cannot do that because they are already exhausted. I’d like to make it happen if it had been unproblematic for them, but I don’t know what it takes. I don’t understand those processes at the end.

Carl: There is probably no-one except the professionals who know what to expect. I guess everyone has a kind of insecurity when it comes to the practical care, not to mention the mental. You feel a need for more medical experience …

Their conversation shows the complexity of managing end-of-life and death at home and points to insecurity related to practical and psychological concerns. That is to say, Beth was too ill, Carl lacked medical experience, and the condition was manageable in the present, but Carl was uncertain whether it would be manageable the next day or the next week. What Beth and Carl related was also recognizable among other couples. For the five couples, it seemed to be constant work to balance the hope for home death with being reality oriented and taking responsibility for their own life (and death) and their spouse’s well-being.

Even if the illness was predictable to some extent, the participants talked about an unpredictable illness trajectory that had to be considered when discussing home death. Abe pointed to how the considerations inevitably involved both himself and Sue through alternating use of “I” and “we” as he explained the following:

If it’s possible to die at home, without too much pain and worries for others, we will try that. I know I’m getting worse and worse and worse. I take one day at a time and then we adjust accordingly. We must take it as it comes. There is nothing wrong with changing your mind. And I have been told all along by the personnel from the home care and the palliative care ward that we can change our minds at any time. They support us.

The “one day at a time” approach, which was adopted by all participants, kept open both the option of home death and the option to reevaluate the preference for home death. In addition, this might illustrate people’s struggles to understand the needs related to dying and death: they may feel helpless and uncertain about the further trajectory, what it will demand from them, how they will manage, and how they will be affected.

In the following and last part, we follow the spouses when they, in retrospect, describe and reflect upon what happened in the end.

It turned out right for both of us

The patients died between 5 and 24 days after the dyad interviews. One patient died at home, and three died in hospital or a hospice. The spouses remembered that the preference for home death was regularly assessed as the patient’s illness progressed. The question that they had to consider was whether it was still possible to meet and manage increased symptoms and care needs in a satisfactory and responsible manner, either by intensified care from the MHCS and/or by the spouse. At this point, the most essential aspect was to feel safe and to trust that the patient would get the best possible care and symptom relief and that the spouse would not be worn out. For one patient, Ian, this was compatible with staying and finally dying at home. His wife, Deb, who had a nursing background, had provided end-of-life care in her work. Therefore, when Ian’s condition changed dramatically, she felt confident to continue caring for Ian at home. Ian relied on Deb, and she relied on her own expertise and how they would get professional healthcare support when needed. She explained:

He was going to the toilet and fell on the floor. I thought, “Now it’s happening,” because his fists and face turned blue. I managed to lay him in a stable side position and called the nurse. She came right away, and we helped him up and into bed. […] The children and grandchildren were in the kitchen while we washed him and had that urine catheter inserted. The nurse gave morphine because he had pain in his chest, and it was hard for him to breathe. And he lies and suddenly he looks at me and says, “You know what’s going to happen now?” “Yes, Ian, I know what’s going to happen now,” I said, “and we want it to be in the best way possible for you and for us around.”

As the excerpt shows, Deb handled Ian’s acute deterioration, although she instantly thought she would lose her husband there and then. To (re-)enter her professional role in a personally demanding situation made her safe and gave a sense of control. “It was just a matter of taking action,” she said. In Deb, the family had a guide throughout Ian’s illness and death trajectory, and they had explicitly told her afterwards that, if not for her, they would have felt unsafe and afraid of doing something wrong. At this point, the very end of life, everything was at stake, and it is easy to understand the family’s worries about making mistakes. Nonetheless, although Deb acknowledged her own importance and competence, she had also needed support herself. Home death for Ian had been teamwork, she said, and underscored that the help from and availability of the cancer coordinator and the MHCS had been invaluable. Later that same day, Ian died at home, surrounded by his loved ones. “Quiet and calm,” Deb said. “Just the way he wanted.”

For the three other patients who died, the increasing symptom burden overruled the possibility to remain and die at home. Ken, Liz’s widower, experienced that eventually there had not been an option to choose one way or the other. When Liz’s stoma leaked both day and night, causing challenges and worries for both Ken and Liz, a transition to the palliative care ward was inevitable. “Liz probably wanted to die at home, but it wasn’t possible in a painless and … how shall I put it … a nice way,” Ken said. “The illness reached a limit, so it really was the illness that decided,” he summarized. In the end, an escalating illness trajectory and an overly demanding care burden for the spouse gave the couples no options. The decisions, or altered decisions, reflected mutual care but also how the couples’ preferences for home death were settled and unsettled at the same time. When the physical care needs became overwhelming and the overall situation became unmanageable, the patient stated—typically out of care for the spouse and to secure adequate care for themselves—that an admission was needed. Carl, Beth’s widower, indicated as follows: “She worried about me because I struggled. She saw that I was tired and irritated, so she wanted to go to the hospice. I think part of the reason was that she wanted to relieve me.”

Abe died, leaving Sue not long after they had participated in the dyad interview. Abe’s illness deteriorated, the MHCS visited more often, and more medical equipment was needed in the home. Abe could no longer sleep in his armchair but had to use the hospital bed that was placed in the living room. Sue recalled how Abe’s deterioration and intensified symptoms caused him an all-encompassing experience of losing control and that he probably became increasingly afraid. The MHCS had regularly talked with Abe about whether he should remain at home or be admitted to the palliative ward at the hospital. When Abe deteriorated, the question was once again raised. Sue remembered:

He died on a Friday. On Wednesday, the nurse asked if he wanted to be admitted or stay at home. It was the last chance to go, as he was so weak. At first, he said, “No,” and I knew he was thinking about me. I said, “If you don’t think about me, what do you want then?” “Then I want to go,” he said. […] I took it to heart that he said no because of me. He was not supposed to do that. But that’s the way he was. He was very caring. […] It probably changed for him, and then I had to let him go. I didn’t want him to stay at home because of me. I wanted him to decide. […] It was hard to see him suffer. That’s why I wanted him to go to the hospital.

From what Sue articulated, we understand how she, Abe, and the MHCS came to a joint understanding that an admission was the best option. However, no-one explicitly addressed this but left it to Abe to communicate his “wish.” Upon reaching this point, much was at stake, as the decisions were final. Abe, like some of the other patients, had difficulties making an independent autonomous decision. Like the excerpt shows, preferences, turning points, and decisions are relational and contextual. Sue and the MHCS understood how the question had to be rephrased to allow an answer that was more in line with Abe’s increasing care needs, rather than what he considered to be his wife’s needs.

When the bereaved reflected on how the end turned out, they seemed to be at peace with what had happened. Knowing how the last days proceeded underpinned a recognition and acceptance of the changes that had occurred. Although all had hoped for a peaceful death at home, this was not always possible. Sue, Abe’s widow, explained:

The way it developed in the palliative care ward, I probably wouldn’t have managed it at home. It was too much. He had to be looked after all the time. […] You have no experience, so you don’t know how bad it will be to watch: that’s what was difficult. If he’d just stayed calm and fallen asleep, it would have been different.

When the situation escalated, this could cause emotional strain for the spouse. Although many had been informed about possible death scenarios, this was not sufficient to manage what happened when the patient died. Sue seemed unprepared for how Abe’s suffering affected her. Carl shared a similar experience concerning Beth: “The last day she was in a coma, yet she struggled a lot at the end. It did hurt to see her having a hard time.”

When the patients were admitted to palliative care, the spouses had the option to step in and out of the situation physically and mentally to get some respite. Around-the-clock professional health care provided the patient with medical-care security and gave the couple a sense of safety. In addition, being cared for as next-of-kin, having someone to talk to, getting things explained, or simply just being offered a meal had been important. Accordingly, when the bereaved spouses looked back and reflected on what had happened, it seemed easier for them to find comfort in and give meaning to how the end had turned out. Sue concluded: “It turned out right for both of us. It was a change, but it was right.”

Discussion

The findings show how being in familiar surroundings with loved ones motivated a wish for home death as long as home was perceived as safe. The preference for home death and what led to the actual place of death were anchored in the relational and the contextual, the couple’s interdependency, and a sense of safety. The relational and contextual perspective will be further highlighted in the discussion.

As the analysis indicates, to continue life as “normal” as possible was valued by the patients and their spouses, although the preconditions for everyday life were changed. The familiarity and safety that home provided were important because many of the couples perceived the process from the known life to the unknown (i.e., the death trajectory and death itself) as uncertain. Home was a place to be close to loved ones, a place to remain self-governed and to be in control with family members’ assistance. This finding is in line with other studies pointing to how home offers a chance to be seen as a person, uphold identity, and be in charge when life is coming to an end, underscoring how home is more than just a physical location (Funk et al., 2023; Nysæter et al., 2022; Rainsford et al., 2018). The significance of relationality resonates with Sköld’s (2021) empirical and philosophical study on grief. In analyzing interviews with bereaved life partners, Sköld elaborates on what it means to be a person, and how personhood and partnerhood are related. Personhood can be understood as being someone, as being seen by the other, one’s partner, one’s life witness. In partnerhood, the persons are mutually seen, they share their lives, the space and time, and a home (Sköld, 2021). Without idealizing partnerhood, Sköld’s point is that being each other’s life partners and life witnesses may contribute to a deeper, mutual understanding and experience of belonging. We suggest that preferences for home death articulated by the participants in the present study can be understood along these lines: time together in the familiar home is existentially important. Everyday life and time together in the familiar home “carries massive existential weight” (Sköld, 2021, p. 117).

In the end, one patient died at home, and three died in a palliative care ward or a hospice. As described in the literature (Rainsford et al., 2018; Seal et al., 2015), a deterioration of the illness and increased care needs changed the sense of safety and activated a reevaluation of home death for the patients in the present study. Hence, despite its familiarity and “safety,” home can also be a place one can feel vulnerable, as demonstrated in our study, and also aligning with previous studies (MacArtney et al., 2016). When caring for a dying person at home, the carer has to balance the caring responsibilities with paying attention to their loved ones’ and their own emotional distress (Ongko et al., 2023), which points to the carer also being vulnerable. When the patient was moved to a healthcare institution, this provided a “new” safety for the couple and respite to the spouse, and appreciation for being cared for by the healthcare professionals in the institution to which the patient had been admitted was emphasized by the spouses. Also, the relocation of place for end-of-life care and death was reflected upon as an unavoidable progression of the illness, something that lay beyond their control. The couples adopted what Pollock et al. refer to as a “pragmatic approach to place of death” (Pollock et al., 2023, p. 8).

Family carers can feel guilty if they fall short of fulfilling the dying person’s wishes (Neto, 2022; Sallnow et al., 2022). Similar to what Pollock et al. describe (2023), our analysis indicates that the preference for home death was “an aspiration rather than a strong commitment” (Pollock et al., 2023, p. 8). When the couples in the present study adopted such an approach, this made it easier for the bereaved spouses to understand and reconcile with what had happened, and none expressed a sense of failure about not realizing home death for their loved one. The mutual care the spouses had for each other was reflected in the decisions made at the very end. These findings are not unique. Previous research also describes how ill and dying people who are cared for at home worry about burdening their family and how informal carers can have doubts about whether they will manage to give their loved one proper care (Aurén-Møkleby et al., 2023; Gerber et al., 2019; MacArtney et al., 2016; Pollock et al., 2023). Nonetheless, our findings highlight once again that autonomy and decisions in the end-of-life setting at home are about “me, you, and us” rather than “me.”

As not all participating patients died in their home, it may be relevant to ask whether the preference for home death had been unrealistic or insufficiently accommodated or not. Some people do experience dying at home as a peaceful and manageable process, as did Ian and his family in the present study. To receive end-of-life care at home and die at home are political matters, in Norway and elsewhere (Ågren et al., 2023; Borgstrom & Walter, 2015; Regjeringen, 2020). However, uncritical “praise” for home death with the association with yesteryear’s ways of dying has rightly been challenged, as many patients today are sicker, care responsibilities are more complex, and it is hard to understand the practical, physical, and emotional realties of death and dying (Abel, 2017; Neto, 2022; Sathiananthan et al., 2021). In terms of the present study, we argue that the preference for home death was a reasonable preference related to being human and in relation to the known self, the people one has loved, and the surroundings one has appreciated—all that home constituted.

Strengths and limitations

Given the rapidly deteriorating illness trajectory, along with human vulnerability when life is about to end, we consider it a strength that many couples showed interest in the study and that we managed to include five couples. The novelty of the study is also strengthened by the interviews with the spouses, where they could elaborate on their experiences retrospectively and have an opportunity to reflect on what had happened as a continuation of their shared history. Furthermore, we argue for the findings’ credibility, as the data from the interviews were varied and nuanced, showing contradictions and resemblances, with the individual statements complementing each other for a broad narrative about home death. Although this study focused exclusively on cancer patients and preference for home death, it underscores the significance of being an “us” when a couple experiences illness within the dyad. Hence, we consider the relational dynamics reflected in this study’s findings relevant for other illness and healthcare contexts.

The study has limitations that need to be addressed. When doing dyadic interviews, there is a risk that one participant can be dominant, thereby holding back the other participant, especially if interviewed about a sensitive topic (Polak & Green, 2016). When interviewing the couple together, the spouse was not given an opportunity to express issues they might not have wanted to raise in front of their dying partner, which might have had implications for the findings. That said, dyadic interviews are like any other interview, contextual and relational (Kvale & Brinkmann, 2015); people normally adjust what they say according to the recipient and setting, and hence, this premise accompanies all kinds of interview studies.

The participants consisted of a homogeneous group in terms of age, ethnic background, sexual orientation, and duration of relationship. Narrative methodology is not intended to illuminate all narratives related to a phenomenon and accordingly the data material will never be exhaustive (Riessman, 2008); hence it is important to acknowledge that we might have missed out on significant cultural and socio-economic variations of experience, preferences, and understandings.

For the participating couples, home death was regarded as a possible choice if the situation was manageable. We are aware that home is not a safe place for everybody for various reasons, and that many do not live in strong and loving relationships or have access to a care model that provides healthcare services and security. In our view, these are important dimensions to address in future research about patients’ end-of-life preferences.

Conclusion

The narratives of the couples showed that a preference for home death was anchored in a shared life biography, shaped by time and experiences. From this perspective, the couples envisioned a possible home death by taking a pragmatic approach. When symptom control and care needs could be sufficiently managed at home, home was perceived as a safe place based on familiarity, relations, and autonomy. As the illness progressed and entailed increasing care needs and symptoms, other dimensions of feeling safe gained importance and led to decisions to be transferred to a healthcare institution. The constant (re-)evaluation of preferred place for end-of-life care and death was shaped by mutual care and interdependency regardless of whether the patient died at home or in a healthcare institution.

Acknowledgments

We thank the participants, the healthcare professionals, and the user group for their contributions to the study.

Disclosure statement

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

Additional information

Funding

This work was supported by the Dam Foundation under Grant 2021/FO347421. The Norwegian Cancer Society was the applicant organization.