Communication about euthanasia in Dutch nursing homes

Abstract

In this research, we explore how competent nursing home residents in the Netherlands experience communication about euthanasia. Interviews were conducted with 15 nursing home residents. Three themes were found during data analysis: 1) The possibility to discuss euthanasia; 2) Interaction and 3) Anticipating the future. Whether or not euthanasia was discussed was influenced by the openness of the resident and the accessibility and openness of their medical practitioner. Important factors mentioned by respondents regarding interaction were the level of connectedness with others, the feeling of being understood and one’s own firmness in holding on to the option of euthanasia in the future. Regarding anticipating the future, respondents felt reassured in having an advance directive. They expressed a lack of certainty whether the medical practitioner would be willing to eventually perform euthanasia. As a practical implication, ACP may provide a pathway for improvement of communication about euthanasia with competent residents.

Box 1 Explanation of terminology and abbreviations

Euthanasia The Dutch Termination of Life on Request and Assisted Suicide (Review Procedures) Act distinguishes between termination of life on request and assisted suicide. In case of termination of life on request the physician administers the substance(s) to the patient. In case of physician assisted suicide, the physician hands the substance(s) to the patient, who ingests it. When using the term euthanasia in this article, we refer to both practices.

MAID      Medical Assistance in Dying

KNMG   Royal Dutch Medical Association

Verenso    Dutch Association of Elderly Care Physicians

V&VN            Dutch Professional association for nurses, caregivers and nursing specialists

NVVE      Dutch Right-to-Die Society

Introduction

Termination of life on request and (physician) assisted suicide is intensively debated in many countries (Kono et al., 2023; Orlova et al., 2023). The Netherlands established a law in 2002 (Dutch Termination of Life on Request and Assisted Suicide (Review Procedures) Act, 2002). Much experience has been gained since, leading to judicial interpretation, scientific research and a Code of Practice (Regional Euthanasia Review Committees, 2022a). The option of euthanasia is incorporated in general information on end-of-life decision-making, e.g. in brochures that were developed for both the general public and doctors in order to improve patient-doctor communication (KNMG, 2021). Euthanasia in the Netherlands is allowed for people who meet the due care requirements and have a medically classifiable condition. Euthanasia is not limited to age or to the phase of being terminally ill.

The number of reported cases in 2022 was 8720, which is 5.1% of the total number of deaths. The majority was reported by general practitioners (6148 cases) and a small number by elderly care physicians (265 cases). Regarding place of death, the majority was performed at home (6939 cases) and smaller numbers in nursing homes (512 cases) and care homes (317) (van der Heide et al., 2023). The medical background is mainly of a somatic nature (95.4%), being mostly incurable cancer and less frequently neurological disorders (Parkinson, ALS and MS, 615 cases) or an accumulation of age-related health problems (379 cases). The majority of persons is 60 years or older (Regional Euthanasia Review Committees, 2022b). Although the above shows that euthanasia occurs in nursing homes and care homes in the Netherlands, literature does not report on reasons for requesting euthanasia in this population. For all euthanasia cases it is known that important motivations are: no prospect of improvement, loss of dignity and severe symptoms (van der Heide et al., 2023). These can also be relevant to people in nursing homes and care homes.

In the Netherlands, the majority of residents of nursing and care homes are older people, however there is no age limit for receiving care in a nursing or care home. An increasing number of older people nowadays continue to live independently in their homes rather than moving to a care facility. Since the policy in the Netherlands focuses on staying at home as long as possible, the level of acuity is high for both nursing and care homes. As a result, nursing homes and care homes have become a place of residency for the eldest and most frail, often with multimorbidity. In a European study it was found that 38% of residents in Dutch nursing homes did not have dementia (Collingridge Moore et al., 2020). Each nursing home employs one or more physicians that specialized as elderly care physician. The medical staff may also consist of a nurse specialist or a physician assistant, also referred to as medical practitioners in this study, however, they are not qualified nor legally allowed to perform euthanasia.

Considering this situation, we wondered how residents experience communication about euthanasia in the nursing home setting. Research on end-of-life decision making and euthanasia in nursing homes has been mainly focused on patients with dementia (de Boer et al., 2011; Hendriks et al., 2017; van Soest-Poortvliet et al., 2015). However, we have found no studies on experiences of residents who are capable of communicating, assessing information about their situation and making decisions about their end of life, regarding communication about euthanasia in nursing homes.

Therefore, in this research we explore the experiences of competent nursing-home residents in relation to communication about euthanasia.

Box 2 Due care criteria

By law, physicians who perform euthanasia or assist in suicide are committing a criminal offense. However, they are not criminally liable if they comply with the statutory due care criteria and notify the municipal pathologist of their actions.

The statutory due care criteria say that the physician must:

• be satisfied that the patient’s request is voluntary and well-considered;

• be satisfied that the patient’s suffering is unbearable, with no prospect of improvement;

• have informed the patient about their situation and prognosis;

• have come to the conclusion, together with the patient, that there is no reasonable alternative in the patient’s situation;

• have consulted at least one other, independent physician, who must see the patient and give a written opinion on whether the due care criteria set out above have been fulfilled;

• have exercised due medical care and attention in terminating the patient’s life or assisting in the patient’s suicide.

Methods

For reporting the design, the procedures and the results of the study we have used the COREQ criteria (“COnsolidated criteria for REporting Qualitative research”, 2007).

Design

The design is a qualitative study in which in-depth interviews with nursing home residents were performed, followed by thematic analysis.

Setting of the study

The residences included in the present study were ten nursing homes and three care homes which have a liaison with general practitioners (GP) having their own independent practice located in close vicinity. A nursing home resident receives daily care from care workers with different levels of qualification and competences, working in teams and shifts with one of them generally being the first contact for both client and relatives. Nursing homes are usually divided into open “somatic” wards and closed wards for people living with severe dementia. Care home residents have a lower need for care generally and live more independently. Both types of residents are visited by professional caregivers in their private room, where they also receive visitors. They meet with other residents in a public meeting space.

Study population

Initially we approached elderly care physicians to select and invite residents to participate in the study. The inclusion criteria were: competent residents, living permanently in a nursing home, who at least once in the past had discussed the topic of euthanasia explicitly with their medical practitioner, not as a concrete request, but as a serious issue potentially involving a request in the future. A minimum length of stay was not required. The inclusion criterion was that respondents were not temporarily admitted and had no perspective to live independently again in the future. Residents staying in a rehabilitation ward or in a hospice were excluded from this study.

Sampling was consecutive. In the sampling procedure, we aimed at reaching variation based on personal characteristics (gender, age, religious background, cultural background and type of illness). We also aimed at reaching variation among participating organizations and regions. Locations participating in this study did not have an explicit denomination, one location provided care for people with a specific cultural background. This approach resulted in the inclusion of 10 respondents living in a nursing home.

Secondly, we published a call in the digital newsletter of the NVVE (the Dutch Right-to-Die Society), followed by a call in its printed member magazine (Relevant), thus reaching out to residents directly. This led to the response of 6 potential respondents, living either in a nursing or a care home, of which 5 were included.

Data collection

In-depth interviews were carried out to create room for residents to express their experiences. We planned one in-depth interview per respondent and a second interview after an interval of at least six weeks in order to discuss life changes during that period or to ask additional questions. Data collection was stopped when no additional issues were identified from the data and all relevant themes and subthemes were explored. There were no drop-outs. If the first interview provided enough information a second interview was not held in order not to overburden the respondent. A follow-up interview was not always possible. The first interview with each respondent lasted from 40 minutes to 1 hour and 40 minutes. The second interview with some of the respondents lasted from 22 minutes to 1 hour and 28 minutes. The main researcher, having experience as a counselor within nursing homes and for this study acting as external PhD student, performed the interviews. As part of her PhD training program, she was instructed in qualitative methods. She did not know the respondents before the study. At least a week before, she had a face-to face appointment to introduce herself and give information about the aim of the study and duration of the interview. A topic list was used, based on the research question. The topic list was developed in an iterative process in which the first version was based on the research questions of the project as a whole. After the first interviews, the topic guide was slightly revised. The topic list was developed by the whole team, with expertise on end-of-life research and qualitative research. The interviews were audiotaped and transcribed verbatim by an independent third person and afterwards checked in detail by the first author who had performed the interviews. Directly after the interviews, field notes were made which helped during the analysis.

Box 3 Topic guide

Topic Guide Interview 1

Start of communication on euthanasia with medical practitioner

Relationship with the medical practitioner

Accessibility of the medical practitioner

Attitude of the medical practitioner toward euthanasia

Communication on euthanasia with care staff, family members and co-residents

Policy regarding euthanasia within the organization

Topic Guide Interview 2 (when applicable)

Developments over time since interview 1 regarding:

A Condition and personal circumstances of the respondent

B Further communication about euthanasia with the medical practitioner(s), the care staff, family members and co-residents

Data analysis

During data analysis, the procedures of thematic analysis were followed (Braun & Clarke, 2022). The philosophical basis was a hermeneutic approach meaning that the data were coded and further analyzed focusing on the experiences of respondents and their way of meaning-making. The transcripts were analyzed using MAXQDA software. Data analysis started during data collection and was an ongoing process. In the first stage of analysis the interviews were carefully read making notes in the margin. In the second stage codes were in vivo ascribed to sentences (open coding). To ensure consistency of the coding procedure, the first eleven interviews were independently coded by the first and second author, after which comparison of the codes took place and differences were discussed until consensus was reached. In the third stage the open codes were combined into provisional themes. Subsequently in the fourth stage, these themes were compared per interview and discussed first with the second author and later with the other coauthors, all experienced in qualitative research. In an iterative process, codes of new interviews of respondent nine and onwards were added using the provisional themes. After fifteen interviews, no new provisional themes came up. Therefore, we decided to stop inclusion. In the fifth stage overarching themes and subthemes were developed in consultation with all coauthors, which resulted in a final framework of three main themes and seven subthemes. Finally, in the last stage themes and subthemes together with quotes were discussed with all coauthors, and the result section was written. As the process of analysis took place parallel to the data collection, respondents did not check the analysis.

Ethics statement

The IRB of Amsterdam VUmc declared that the research did not fall under the Dutch Law on Medical Research and checked informed consent and privacy issues (Letter of approval number 2018.642).

Results

We conducted in total 21 interviews with 15 respondents, 5 female and 10 male, ranging in age from 30-35 to 85-90. Six respondents were interviewed twice. Table 1 shows the respondents’ characteristics and the number of interviews with each respondent.

Table 1. Characteristics of respondents.

Nr	Gender	Age range	Civil status entry	Medical problem	Nursing or care home	Length of stay	Advance directive yes/no/intended
1	M	30–35	Single	Unknown/Pain	N	> 3m	Y
2	M	75–80	Widowed	ALS	N	< 1 y	Y
3	F	85–90	Widowed	MM/CM	N	1 y	I
4	F	60–65	Single	Parkinson	N	< 3m	Y
5	M	55–60	Divorced	MM/CM	N	3 y	Y
6	M	70–75	Divorced	Cancer	N	1.5 y	N
7	M	70–75	Divorced	MM/CM	N	1 y	N
8	M	60–65	Single	Hereditary Muscle	N	> 4 y	N
9	F	30–35	Single	Hereditary Muscle	N	3–4 y	Y
10	M	70–75	Widowed	Cancer	N	3.5 y	I
11	M	85–90	Widowed/Partner	Old age	C	2.5 y	Y
12	F	80–85	Divorced/Widowed	MS	C	5.5 y	Y
13	M	55–60	Divorced	MS	N	2 y	Y
14	F	75–80	Divorced	Old Age	C	1 y	Y
15	M	65–70	Single	MS	Nursing	2–3 y	Y

Note. The topic list did not include diagnosis or prognosis. Respondents referred to their health issues in general and/or the referring doctor provided a general indication. MS: Multiple Sclerosis. ALS: Amyotrophic Lateral Sclerosis. MM: multimorbidity. CM: comorbidity. Old Age: mild symptoms without a specific actual disease.

1 = Bob; 2 = Frank; 3 = Vida; 4 = Zelda; 5 = John; 6 = Liam; 7 = James; 8 = George; 9 = Lisa; 10 = Roger; 11 = Leo; 12 = Clare; 13 = Arthur; 14 = Alice; 15 = Owen. All names are fictional.

With regard to the experiences of residents concerning communication about euthanasia three main themes were identified: 1) the possibility to discuss euthanasia, 2) the interaction with others when talking about euthanasia and 3) anticipation on future decisions concerning euthanasia.

Box 4 Themes and subthemes

1. The possibility to discuss euthanasia

   Respondent’s openness toward others

   The accessibility and openness of the medical practitioner

2. Interaction with others

   Relational connectedness

   Understanding

   Sticking to one’s ideas

3. Anticipating on future decisions concerning euthanasia

   The advance directive as a means of reassurance

   Concern about the willingness of the medical practitioner to perform euthanasia

The possibility to discuss euthanasia

The possibility to discuss euthanasia includes two sub-themes. The first is the respondent’s openness toward others. The second is the accessibility and openness of the medical practitioner.

Respondent’s openness toward others

Regarding their own openness toward others, respondents refer to four groups: the medical practitioner, care workers, co-residents, and family members and friends. Respondents mentioned to be open toward their medical practitioner. Bob stated: “Well, to the doctor. You know – that I am still thinking about it and that it is still very much a possibility. Yes, I was just open about it.” In general, respondents said they took the initiative to talk about euthanasia. Often, they addressed the subject in the first meeting with the medical practitioner after admission to the nursing home. Bob remembered: “And I started about it with him at quite an early stage. I was here about a month, maybe, and then I already started talking about it.” Bob also mentioned bringing up the subject with the coordinating care-worker, who subsequently referred to the medical practitioner: “She was the first person with whom I spoke about it. She was also the person who said I should discuss it openly with the doctor here.” Another respondent, Liam, introduced the subject to the medical practitioner asking for information: “So, I said, I have a question: I would eventually go for euthanasia. What’s the process for it?” Often respondents mentioned conversations with their former GP, Lisa said: “Um, well, at first, I simply went to the GP. And then I just discussed it with the GP.”

Regarding care workers, respondents mentioned the importance of a personal connection with specific persons. Clare said: “So, we have a lot of contact and in that way, you develop a special bond with each other. I have told her on occasion that if I really can’t cope anymore, I would like euthanasia.” A reason for being reluctant toward care workers to be open about euthanasia was confidentiality. Arthur remarked: “No, with most of them I don’t reckon they would keep certain matters confidential. So …”

Usually respondents did not involve co-residents. A first reason mentioned was that euthanasia is a private matter. James said:” No, I deliberately don’t do that because it’s a personal matter.” A second reason was that co-residents were often not able to communicate about it. Frank said:

But there are roughly twenty rooms and I’m sure that I’m the only one who’s still got all their marbles. The rest have Parkinson’s or dementia…Well, I’m not going to discuss matters with them. I mean, most of the people here can’t even write their own signature anymore. So, should I be raising issues that are not an option for them? I think in that situation you should keep your mouth shut.

Regarding co-residents, having a personal connection is again important. John mentions regarding the contact with a co-resident: “We get along very well. That person asks me every day how I’m doing, how my sugar levels are. But he knows, and others too, they know I don’t really want to carry on anymore.” Some respondents said they talked openly with co-residents about euthanasia, but felt they were an exception. Clare said “They sometimes ask me my opinion and then I give my opinion. There are always four of us eating together, usually at the same table. But I’m the only one who talks about euthanasia.”

Toward family members, openness of the respondent mostly meant informing them about their views concerning euthanasia in the future. Bob told: “So, I wanted to make sure other people were aware of my views on the matter, so they could take that into account, that it was a reasonable option.” When a respondent had little contact with family members, openness seemed less likely. Liam talks about the contact with his brother: “I’ve only spoken to him twice since I’ve been here. He doesn’t come to visit or anything like that (…). Q. Right. So he’s not aware of your wish for euthanasia either? A. No.”

In sum: respondents considered euthanasia to be a topic that can not to be discussed with everybody. They generally take the initiative to bring it up in the conversation with their medical practitioner, but are selective in involving others to talk about it, such as family, co-residents and care workers.

Accessibility and openness of the medical practitioner

A second sub-theme regarding the possibility to discuss euthanasia, especially with the medical practitioner, concerns the accessibility and the openness of the latter. Respondents mentioned time-pressure as a limiting factor for accessibility, both in general and in relation to the conversation about euthanasia. According to Zelda: “Well, she never has much time. She’s busy and has to visit other patients.” Lisa is waiting already a long time to talk about it with the medical practitioner and expressed concern: “I think it just takes too long, and so we end up never getting round to that conversation.”

After the first conversation about euthanasia, follow-up varied. A very limited number of respondents mentioned meetings were scheduled periodically. Bob told: “We basically sat down together to talk once a month – or sometimes it was once every six weeks – and now we’ve basically agreed that if it gets more serious, I should say so and then we can discuss it again.” Zelda experienced discontinuity, because the doctor with whom the wish for euthanasia was discussed before, was now on maternity leave: “I have the feeling, there is an agreement with the doctor who went on maternity leave. That agreement was made and you guys will pick this up again in November. At the moment, the whole thing is kind of on hold.” In some cases, the desired response did not come at all because the medical practitioner did not follow up on the first conversation initiated by the respondent. Being asked “But did you then have a follow-up talk with him?,” Liam answered: “Not with him. He came along and I haven’t seen him again since.”

Next to accessibility, openness of the medical practitioner was deemed important. Respondents considered medical practitioners to be open when they received an answer to their questions. Bob said: “And she [the elderly care physician] was very open with me. Yeah, just answered all the questions nicely and said they had experience with this; this wasn’t the first time.” Sometimes the medical practitioner asked a respondent about euthanasia having read the medical file transferred by the former GP. Arthur had the following experience: “So, then the question was posed of how did you arrange it all? Well, there’s a special form for that purpose. And I signed that and it’s in my medical records file, hopefully.” With Clare, the medical practitioner explicitly referred to their past experiences with euthanasia: “No, not my doctor. From the start when we had that conversation, he said ‘You can always come to me. I helped someone only recently,’ he told me then, ‘and I’m open for it.’” Other respondents experienced that the medical practitioner took a distance. James related this to the religious background of the institution: “He was very distant about it at the time from what I remember. After all, that man has a board of directors above him who follow the word of God, the Bible. They are all very clear about it here.”

Interaction

Respondents also expressed how they experienced the interaction with others, especially the medical practitioner and family members, with regard to euthanasia. Regarding interaction, three subthemes were identified: relational connectedness, understanding, and sticking to one’s ideas.

Relational connectedness

Respondents mentioned the importance of having a good connection with the medical practitioner. They said to be positive about feeling at ease and even being able to make a joke about death. Zelda felt: “So I don’t have to be really careful about what I say and what I don’t say.” She told being able to make a joke with the doctor recently, when talking to her about how they once brought her to bed and they noticed she had incredibly cold feet: “I said I should probably get used to that. I said that too to the doctor. ‘Oh’, she said, ‘you’re a morbid one’. So it made her laugh too. It’s good that I can have a joke with her.” Bob mentioned to appreciate being listened to by the elderly care physician: “They certainly listened more than adequately to what I had to say.” When asked why he used these terms, he answered: “Well, I think ‘adequate’ sounds as if it’s only just good enough, but we had proper conversations – they listened properly, and I think that’s definitely worth a compliment.”

Respondents showed discontent when the medical practitioner did not take them seriously, either concerning medical questions in general, or concerning the topic of euthanasia. Regarding the latter, James said: “I think I have a right to an answer from him. But he won’t give me one, because I think he just wriggles out of it and comes up with some fancy story.” Respondents often compared the relationship with the medical practitioner working in the nursing home to their relationship with the general practitioner in the former home situation. The appreciation in those cases was generally in favor of the former GP. Liam expressed it as follows: “I expect something quite different from a doctor. From my own GP, at any rate. He did visit regularly when I was sick. Your own GP!”

The interaction with family members was sometimes experienced as easy and sometimes not. Causes for the latter were emotions of the family member or not being used to talk about certain matters with each other. Bob said that he could talk to a certain extent with both his parents: “Yes, I think I’d find it easier to discuss it with my father—he is a bit more down-to-earth and less emotional.” And comparing them further: “But right, when I spoke to my mother about it—I could always talk to her too, don’t get me wrong—but she did become a bit emotional.” And Arthur said: “I find it somewhat easier with my children than with my parents.” Being asked why, he answered: “I think it’s to do with my upbringing. In general, we didn’t use to discuss such things.”

Understanding

Respondents also mentioned the presence or absence of understanding regarding their potential wish for euthanasia from the medical practitioner. George told: “She just took it positively, including the reasons. So, she could fully understand the logic, that I knew what was ahead for me.” Roger had another experience with the medical practitioner: “Shocked. It was almost unheard of for someone to ask for the end of life in some kind of way. People here die naturally and that’s how it should be.”

Conversations with care workers were more scarce. Respondents noticed the same in the interaction however: while some keep a distance, others react with understanding. Frank: “So, they talk about it openly here. The people I talk to don’t say ‘Oh, you can’t do that’ or anything like that. They say, ‘I’d do the same thing in your situation’. Even though it is a Christian institution.”

In conversations with co-residents, also more scarce, respondents mentioned not always receiving understanding. Clare explained to a fellow resident that she was not bothered about the pain, because she just can get a different type of medicine: “But I do want to recognize you when I see you, to know you’re [name], and I really want to be able to do that. If that’s no longer the case, I don’t want to carry on.” She told about his reaction: “Well, he couldn’t understand that at all.”

Respondents mostly experienced understanding of family, like George from his sister: “She said, I always knew you wouldn’t let it get as far as my brother, who’s now in a wheelchair.” Respondents also mentioned that family supported their decisions. This goes beyond merely accepting the respondent’s views. Frank told about his children: “They support me, only one has a bit of difficulty with it. But well, that one also said, ‘We don’t want you to go through the same as what Uncle [name] went through’, so…” On the other hand, respondents sometimes mentioned their children being opposed to their wish for euthanasia. Like Alice: “Then I discussed with my children whether they wanted power of attorney so that if I get dementia, I immediately want euthanasia. But my daughter-in-law said, ‘No, we’re not going to murder anyone’.”

Sticking to one’s ideas

Many respondents emphasized that they were firm during conversations about euthanasia. In discussion with the medical practitioner, they said to hold on to their position, like Frank who tried to make sure he does not get talked into something: “He knows how I feel about it and respects that. It’s my decision and he accepts that.” For Frank his firmness is underlined by the advance directive. When asked: “Did you hand over the statement already?,” he confirmed: “Yes, because my position on this isn’t going to change.” Zelda mentioned that she constantly reminded herself to persevere, in view of her personal future perspective.

I’m going to keep telling myself: if you don’t do it, you’ll regret it later. If this situation stays the same, there’s no future in this. You carry on like this for years and well, what’s the point? So I keep that clearly in mind all the time.

Also in the interaction with family and friends, respondents did not want to be persuaded to refrain from asking for euthanasia. In talking with George: “Within the family, I just want to keep it to myself and my one sister, and I don’t want any further discussion. This is simply my choice, my decision.”

Anticipation on future decisions concerning euthanasia

Respondents anticipated on a future situation in which euthanasia might be performed. They mentioned the relevance of the advance directive and uncertainty about the willingness of the medical practitioner to perform euthanasia.

The advance directive as a means of reassurance

To support their wish for euthanasia, respondents mentioned they had drawn up an advance care directive. Like Leo: “I have a wish list. It did take me a year, you know, to formulate it in such a way that it was sufficiently straightforward, leaving out the hassle, the unnecessary things.” For the majority of the respondents, the advance directive dated from the period before they came to live in the nursing home. This was discussed with their former General Practitioner. Lisa told: “And then I just discussed it with the GP. I just said, ‘In the end, I’ll want an advance directive’.” Arthur mentioned that the medical practitioner in the nursing home asked new questions, contrary to his expectations:“Well, at first, I thought, huh, hang on, I thought I’d arranged all this. It was all OK, wasn’t it? Then there was a new doctor coming up with a whole load of problems.” Bob considered the advance directive only relevant, if there was a loss of his ability to express himself adequately. “No, I don’t remember us talking about the euthanasia statement, but we did talk about my wish for euthanasia and, because I’m fairly good at expressing myself, I think they probably didn’t feel much need to have something like that.” Some respondents prepare the necessary papers when living in the nursing home, like Roger: “And the statement I need and have to sign and so on. I want that all dealt with. Then I’ll know there will come a time when I decide, this is it. I’ll be able to say ‘Yes, that’s it’.”

Respondents expected that an advance directive would be necessary in the future, like Vida: “Yes, but that’s why I want to arrange it properly via the NVVE, so when the time comes, I don’t first have to talk to loads of people to fight for my euthanasia.” And for George: “Yes, the doctor [name] said that too, that with my signature it will be clear to everyone in the future that I’m of sound mind now. That it’s documented. Legally documented, shall we say.” Respondents expected also that action will be taken in accordance with the wishes as declared, although they did not know how it will be organized exactly. Lisa answered when asked about what will happen to the advance directive: “Well, I don’t know, but I think that at a certain point it really happens, and the wheel will be set in motion for that person.” And when subsequently asked who gets that started: “Simply put, everything gets started here, so, eh…” Arthur remarked: “Right, but that was more a question for me of letting anyone organize it. We’ve stated on paper that it’s allowed to happen, and whether person A or person B does it, doesn’t really matter to me.”

Some respondents mentioned the importance of regular consultations with the medical practitioner to discuss the content of the advance directive. One did so every year. Alice was not completely sure about what to expect in case of dementia: “Because I understand if that’s the case, if you get dementia and you signed that statement every year, then euthanasia is still possible. But well, they’re a bit vague on that subject, so I don’t know exactly.”

Concern about the willingness of the medical practitioner to perform euthanasia

Respondents mentioned a concern that the medical practitioner might not be inclined to cooperate in the future. Bob was happy that the current doctor was apparently not against euthanasia.

When you move into a nursing home you lose your own GP and you never know what kind of doctors you’ll get and whether they are prejudiced against euthanasia. So, that’s why I was pleased to hear that here it wasn’t the case.

Vida indicated not being sure about the doctor’s attitude: “Her attitude wasn’t that she objected to it, but take it from me, on the one hand they can say A but on the other hand perhaps B, I don’t know. So I’ll find out once I get those papers.”

Although respondents had discussed euthanasia with the medical practitioner, they often did not explicitly ask about the willingness of the practitioner to perform euthanasia, because this was regarded as a sensitive issue. Like Frank: “I said, ‘Can I expect problems here?’ He said, ‘We can always find a way round’. So, I’m not going to ask him loads of questions; that’s not the kind of person I am.” And Leo: “Oh right, so if a patient asks a doctor a question like that, the doctor says, ‘I won’t abandon you’. I think this is a question of trust.”

According to several respondents the medical practitioner did not always explicitly express their personal point of view concerning performing euthanasia. When asked “But do you think he’s the person who will be carrying out the euthanasia if you want that? Has he said something…?” Liam answered: “He hasn’t talked about that.”

Some respondents mentioned the medical practitioner referred to the formalities involved. Zelda told: “She did say to me, ‘You do need to go through all the formalities so that I don’t end up with a lawsuit’. And I can understand that.” Some of respondents mentioned knowing to have to ask their doctor about the willingness to perform euthanasia or to refer them, for example Alice: “Or she’d refer me to the end-of-life clinic. Because I said, ‘If you don’t do it, will you guarantee me that you’ll refer me to an end-of-life clinic?’.”

Discussion

This article presents the experiences of competent nursing home residents concerning communication about euthanasia. Respondents talked without holding back to their doctor, but were otherwise selective with whom they speak about their wish for euthanasia. In general, respondents started the conversation with the doctor themselves, usually sooner rather than later. Respondents had varying experiences with regard to the accessibility of the doctor in general and regarding communication about euthanasia specifically. A good relationship was seen as a prerequisite for openness toward care workers, relatives, and co-residents. With regard to discussing euthanasia with care workers, confidentiality also played a role. In the communication about euthanasia, respondents considered relational connectedness important as well as a relaxed atmosphere, being taken seriously and being listened to by the medical practitioner. Contact with family members was sometimes experienced as emotionally difficult. The idea of future euthanasia was said to be often, but not always, received with understanding from family members. Respondents also mentioned receiving support from family members. Respondents said they took a firm stand on their wish for euthanasia and did not want to be persuaded otherwise. Most respondents saw the advance directive as a tool for the future in which euthanasia could be a real option. Many said that the willingness of the medical practitioner to actually perform euthanasia was not explicitly discussed. Based on these results, we will discuss three issues that seem to play a role with regard to communication about euthanasia in the nursing home.

A need for follow-up conversation

Most respondents had addressed euthanasia themselves in their communication with a medical practitioner in the period before becoming a resident. Their advance directive was a clear sign of their firm position and of their thoughts about their future. When encountering a new medical practitioner, they tended to bring up the subject of euthanasia again. Respondents seemed to believe that by taking these actions they had organized everything properly.

But, whereas writing an advance directive can create the expectation that euthanasia is properly arranged, further communication toward the end of life over time is required as in practice more or less unpredictable health situations can arise. This follow-up communication may not always be obvious, given the mentioned limited accessibility of the medical practitioner for the resident. In addition, various respondents were not aware that having a written advance directive as such may not suffice. Recent research shows that only half of Dutch citizens know that physicians do not have to adhere to a written euthanasia directive (van der Heide et al., 2023). The apparent lack of attention toward the need for follow-up conversation after a first discussion about the advance directive or after an initial question about euthanasia may contribute to a wrong assumption or may negatively impact the resident’s feeling of having control on their end of life.

The context of the nursing home

There are many differences between living at home and staying in a nursing home residence. As mentioned in the introduction, euthanasia is performed not very often in the latter context. We will address some aspects of this specific context that may be relevant.

A person faces major challenges when moving into a nursing home (McCabe et al., 2021; Sherwin & Winsby, 2011; Waldrop & Meeker, 2012). These include meeting a new medical practitioner, as moving into a nursing home involves a change from one’s general practitioner to a medical practitioner employed by the organization. There is no free choice of doctor as is the case in the home situation. We have seen that nursing staff often acts as go-between for the resident toward the medical professional, whereas in the home situation a person can make a phone-call in order to ask for an appointment themselves. So, when it comes to communication about euthanasia, people have to make a new start. Making acquaintance with a new medical practitioner implies having to again address euthanasia as a specific and sensitive topic sooner or later. Residents in our study said it is easier to have a discussion about euthanasia, when they feel there is a connection. This refers to communication with both medical practitioners (Dees et al., 2013; Snijdewind et al., 2014) as well as care-workers (Evenblij et al., 2019; Witkamp & Mouris, 2023). The importance of relational connectedness and understanding on the one hand and being firm during conversations about euthanasia on the other hand indicates that relational support and individual autonomy are not mutually exclusive, but presuppose one another (Mackenzie, 2021). Residents mentioned several times that they think religious belief of the management or the medical practitioner might influence the possibility of euthanasia being possible in the organization (Green et al., 2022; Omori et al., 2022). Residents seem to have been socialized into the idea that their wish for euthanasia is a sensitive topic and not one to be discussed freely. Nursing homes guidelines regarding euthanasia within an organization are found to be sometimes stricter than the law (Hesselink et al., 2012).

The role of family

In this study respondents’ relatives usually were their children or, in case of the younger residents, their parents. Residents experienced understanding and often support from these relatives with regard to their views on euthanasia. Family members may play a valuable helpful role in communication about euthanasia with the doctor and care staff (Thoresen & Lillemoen, 2016). Relatives and a resident have an emotional relationship, which makes the topic of euthanasia sensitive, for both parties (Laperle et al., 2022). These findings resonate with earlier observations (Boven et al., 2023; Roest et al., 2019; Snijdewind et al., 2014). Family could play a more important part in the patient-physician-family triad (Boerner et al., 2013; Gómez-Vírseda et al., 2020).

Relevance of advance care planning

Combining our reflections on the need for follow up conversation, the context of the nursing home and the role of family, we find reason to suggest that, as a practical implication, stimulating advance care planning (ACP) might help to bridge the gap between the initiative of a resident to have a conversation about euthanasia and further developments regarding their health and their -potentially changing- perspective toward the end of life (Engelhart et al., 2022; Engle, 1998; Gonella et al., 2023; Happ et al., 2002; Lees & Andrew, 2023; van Wijmen, 2018).

ACP aims to enhance patient autonomy and continuous conversations about the end of life. Whereas it is not legally prohibited for practitioners to raise the subject, they are not inclined to do so either. When a patient initiates—whether or not in an early stage—(van der Plas et al., 2021) to talk about euthanasia, a follow-up must be provided by the “main practitioner or central care provider” (Boddaert et al., 2017). It is important to bear in mind that for a resident it is not always easy to start and continue communication about end-of-life issues in general and euthanasia in particular. Research amongst Huntington disease patients found a contrast between the ACP recommendation to discuss goals and wishes for the future and the tendency of patients to keep the future at a distance (Ekkel et al., 2021).

Decisions regarding euthanasia require an ongoing process of communication between at least two parties involved (Rietjens et al., 2017; Roest & Leget, 2023) within (national) judicial requirements (Ho et al., 2021) and the broader context of palliative care. Although the initiative to talk about euthanasia may be considered to lie with the patient (Onwuteaka-Philipsen et al., 1995), this does not take away the responsibility for the overarching end of life communication process by the medical practitioner or central care provider (Kastbom et al., 2019), including the role of care workers (Denier et al., 2010; Omori et al., 2022) and also the management of the nursing home (Onwuteaka-Philipsen et al., 2007).

It appears that an existing advance directive or the wish to draw one up, may be a good starting point for conversations about goals and preferences for future care (Ekkel et al., 2022; van der Heide et al., 2023), whereas entry into a nursing home might be a good starting point seen from the perspective of providing (multidisciplinary) care (Verenso & V&VN, 2017).

Strengths and limitations

A strength of this study is that it is, to our knowledge, the first to explore the experiences of competent ­nursing home residents in relation to communication about euthanasia having in-depth interviews. The majority of participating respondents were of older age, but also some younger residents are included in the study. There are also limitations. We included not only nursing home residents, but also three residents of a care home. The decision to stop inclusion after fifteen interviews was based on the preliminary themes. Although this decision was deliberate, the number of respondents was still relatively small. A main challenge in this study was finding respondents. Given the numbers of euthanasia cases in nursing homes and the frailty of the study population, this was not unexpected. Yet, organizations and medical professionals also seemed reluctant to ask residents to participate because of the sensitivity of the subject. The group of included participants was also comparatively homogeneous. All respondents had a Dutch nationality and family background. All respondents were single when entering the nursing home and the majority of them were male. Factors such as gender, having a partner or not, age, diagnosis and prognosis, the complexity of a person’s situation with regard to the medical assessment and the possible influence of belief systems, should be further investigated (Lemiengre et al., 2008; Onwuteaka-Philipsen et al., 1995).

Conclusion

Respondents’ experiences show a need for more room for conversation on end-of-life decisions and communication about euthanasia within the setting of the nursing home. Openness toward and understanding of their views regarding euthanasia are important for residents. While the advance directive seems to be the end of a process for the resident, it could function as a starting point within ACP. Communication about euthanasia in nursing homes requires careful attention for the needs of residents. Integrating the topic of euthanasia explicitly in the ACP-approach may enhance both the process and the quality of end-of-life decision making and conversation.

Disclosure statement

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

Additional information

Funding

The author(s) reported there is no funding associated with the work featured in this article.