Mapping ethical issues encompassing end-of-life care for persons experiencing severe and persistent mental illness: a qualitative study

Mapping ethical issues encompassing end-of-life care for persons experiencing severe and persistent mental illness: a qualitative study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Mapping ethical issues encompassing end-of-life care for persons experiencing severe and persistent mental illness: a qualitative study loic Moureau, Monica Verhofstadt, Caressa Van Hoe, Joris Vandenberghe, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5699095/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 02 Jun, 2025 Read the published version in BMC Medical Ethics → Version 1 posted 11 You are reading this latest preprint version Abstract Background Persons experiencing severe and persistent mental illness (SPMI) represent a small but vulnerable group in mental health care and society. Research on this population is limited, despite significant ethical challenges in their care. These challenges include the severity of their illness, limited social networks, communication difficulties, impaired decision-making capacities, and, at times, disruptive behavior. Purpose This study aims to explore the ethical themes that emerge in the care of persons experiencing SPMI, both in general and at the end of life. Specifically, we examine which issues arise, how care teams address ethical dilemmas, who is involved in decision-making, and what ethical frameworks or practices are utilized. Methods We conducted 73 in-depth qualitative interviews with care users, family members, caregivers, care managers, and experts from the Flemish region of Belgium. The data were analyzed through content analysis to identify recurring themes and reflect on ethical practices. Results The findings reveal that while many facilities have ethical guidelines or advisory structures such as ethics committees, these are often not well known or not perceived as easily accessible to frontline staff. Ethical dilemmas are predominantly addressed at the team level, with some organizations employing reference personethics in the unit, "ethics pubs", or peer support mechanisms for challenging situations. The most frequently mentioned ethical issue was euthanasia, whereasothers included neglect in home settings, prolonged delays in initiating palliative care, and maintaining autonomy for care users. Resource allocation, both at the organizational and societal levels, was also identified as an ethical concern. Caregivers described tensions between creative, individualized care and institutional policies, whereasfamilies emphasized the shared responsibility in finding appropriate care. Conclusion Ethical care for persons experiencing SPMI demands attention to autonomy, collaboration, and resource distribution. Greater accessibility to ethical support systems and tailored approaches are needed to balance recovery-oriented care with a palliative care approach, ensuring dignity and respect for this vulnerable group. Severe and persistent mental illness (SPMI) ethics end-of-life care Introduction Persons experiencing severe and persistent mental illness (SPMI) form a small yet vulnerable group within mental health care. Although there is no consensus on a definition for SPMI, some researchers describe it using the "3 D’s"—disease, duration, and disability ( 1 ). Persons experiencing SPMI are diagnosed with one or more severe mental illnesses, such as schizophrenia, bipolar disorder, or severe depression. These conditions typically follow a chronic course, with medical and therapeutic interventions offering little to no improvement in quality of life or even worsening it ( 2 ). In addition to the illness itself, the disability it causes leads to significant suffering and challenges in daily life. Globally, depending on the criteria used, approximately 1% of the population lives experiencing SPMI ( 3 ). Statistically, persons experiencing SPMI face a significantly reduced life expectancy—up to 15 years shorter than the general population does—largely because of severe cooccurring somatic conditions like obesitas or dysphagia ( 4 – 7 ). This last observation makes concern toward end-of-life and care provision encompassing the dying process paramount. Recently, end-of-life care for persons experiencing SPMI, in several ways, has indeed garnered more attention in the international scientific literature. Central to the debate are topics such as the need for ‘palliative psychiatry’ ( 6 , 8 ), the provision of ‘regular’ palliative care ( 9 , 10 ), the potential application of a ‘palliative care approach’ ( 11 , 12 ), and the challenges of facilitating medical assistance in dying ( 13 ). Most of these concepts, such as palliative care, are directly related to care in the dying process, whereas others, such as ‘the palliative care approach’, are more loosely related to the end-of-life and focus more on the ‘philosophy’ from which care is provided. Delivering high-quality care to persons experiencing SPMI both in general and at the end of life involves numerous ethical challenges, including assessing decision-making capacity, managing disruptive behavior and self-stigma, and navigating a fragmented care landscape ( 14 ). In such cases, it may be advisable to organize ethics consultation. The purpose of these consultations is to help healthcare teams, patients, and families navigate complex moral dilemmas in clinical care. They provide a structured process to clarify ethical issues, explore underlying values, and offer guidance on decision-making. Their goal is to ensure that patient care aligns with ethical principles while supporting clear communication and fair, thoughtful resolution of challenging situations. In Belgium, as in many other countries, hospitals are legally required to have an ethics committee. This also applies to psychiatric hospitals. Broadly speaking, these committees have three tasks: providing guidance and advice on ethical aspects of hospital care; evaluating experiments involving human participants; and offering advice on individual cases where ethical questions arise ( 15 ). In various (psychiatric) hospitals or collaborative networks of facilities, there is often an ethics expert who coordinates ethics-related activities and sometimes provides training or facilitates moral case deliberation. This is a discussion in which participants collectively address an ethical issue from their work. They do so in a structured manner, using a specific discussion methodology and guided by a facilitator ( 16 ). Despite the growing body of literature offering reflections, recommendations, and highlighting difficulties regarding end-of-life care and ethical issues in persons experiencing SPMI, very little research has directly involved care users, relatives, and caregivers themselves ( 14 , 17 ). This study seeks to address this gap by exploring the experiences, needs, and expectations of care users, their relatives, and caregivers in relation to both end-of-life care and ethical issues in care. It also aims to capture the perspectives of managers and experts in ethics and palliative care on the subject. In Flanders, Belgium, these issues have been particularly pressing due to the legal framework permitting euthanasia on the basis of unbearable and irremediable psychiatric suffering since 2002 ( 18 ) and the development of the Oyster Care Model. Belgium is one of the few countries where euthanasia can be carried out on the grounds of suffering from an irremediable medical condition, including psychiatric disorders. However, in practice, there are many practical, medical, ethical, and legal discussions surrounding this issue ( 19 , 20 ). Questions arise regarding, among other things, whether a psychiatric condition can ever be considered irremediable and to what extent the psychiatric disorder influences the person’s capacity to make decisions when requesting euthanasia ( 20 ). Research has also shown that many psychiatrists are very cautious about performing euthanasia or providing advice regarding its implementation ( 21 ). Legal liability also plays a role in these discussions. As a result, the number of euthanasia cases based on psychiatric grounds is relatively small, although the numbers are increasing over time ( 22 ). The aforementioned Oyster Care model complements recovery-oriented care and uses the metaphor of a shell to represent a palliative approach for persons experiencing SPMI, focusing on quality of life, creativity, and a holistic view of the person ( 11 ). The model is, parallel to palliative care, based on four pillars: physical care adequately responding to the somatic impairments of these patients; psychological care changing the scope of therapy by focusing on mental comfort and well-being; social care providing a structure of daily activities and contacts; and existential care enhancing the experience of life as valuable and meaningful. The mission of the Oyster Care model is to adapt the environment as much as possible to the care user rather than the other way around. For example, a care recipient's hoarding tendencies are tolerated or sublimated to a certain extent. This approach also aims to reduce the use of restrictive or coercive measures. The model is dynamic, with care being scaled up or down according to the care user's rhythm. Developed in the context of euthanasia legislation, the model seeks to provide a full-fledged alternative equivalent to palliative care in the somatic healthcare sector. While this approach offers numerous benefits, it also raises ethical concerns, such as the risk of adopting a paternalistic or insufficiently recovery-oriented perspective ( 23 ). A careful balance must be struck to avoid adding stigma while acknowledging the complexity and severity of the suffering experienced by this population ( 24 ). Given the scarcity of studies that amplify the voices of all relevant stakeholders, we undertook a qualitative study in Flanders. Involving care users, relatives, caregivers, managers, and experts, we aim to contribute to the ethical obligation to include vulnerable persons experiencing SPMI in qualitative research, despite the additional challenges this may present ( 17 , 25 ). We focus on the following main research question: What are the ethical concerns and related themes facing persons with SPMI, especially regarding end-of-life discussions, as noted by the different stakeholders? Methodology A total of 73 participants, including 12 next-of-kin, 17 care users, 24 caregivers, and 20 managers and experts, were interviewed once about their experiences, needs, and expectations regarding end-of-life care for persons experiencing severe and persistent mental illness. Demographics of the participants are provided in Appendix 1. We also explored ethical issues related and unrelated to end-of-life care. The interviews were conducted in Dutch by two researchers (LM, male and MV, female), with backgrounds in care ethics and psychology, respectively, from July 2022 to May 2023. We reported our experiences elsewhere ( 17 ). The researchers who conducted the interviews both received training in qualitative research, and MV had experience conducting interviews with persons experiencing severe mental illness. The interviewees were not known by the interviewers. The subject matter and population were known and of interest to the interviewers because of previous research and professional activities. Assumptions and expected results of the qualitative research were noted beforehand, and similarities and differences were subsequently discussed by the researchers. The participants chose the interview locations, which were typically the ward or organization where they worked or lived—often for several years in the case of care users. The piloted semistructured interviews followed a preconstructed topic guide, provided in Appendices 2 and 3, covering themes such as care approaches, end-of-life care needs, ethical considerations, and existential questions. For caregivers, managers, and experts, there was direct experience with end-of-life issues and some aspects of medical ethics. However, for relatives and care users, the experiences were not always as explicit, although some relatives reflected on the care and death of a family member experiencing SPMI or had come into contact with medical ethics through their professional life. Occasionally, care users had experiences with advance care planning, requests for medical assistance in dying, or severe illnesses such as cancer, whereas for others, end-of-life discussions were more hypothetical. Although care users and families were not asked explicitly about ethics, they were asked about what good care means, what issues are important to them and what difficulties they have experienced in care. The inclusion and exclusion criteria can be found in Appendix 4. The interviews ranged from 30 minutes to more than two hours, averaging approximately one hour. The participants were purposely recruited from seven mental health care organizations across the five Flemish provinces in Belgium, representing a range of care settings, including residential care, assisted living, and ambulatory services. The participants were evenly distributed among these 7 organizations. These organizations operate from various therapeutic and existential frameworks, all of which provide some form of long-term and protective care for persons experiencing SPMI. The organizations were initially contacted via email and phone, and a contact person (e.g., a head nurse, therapist, or physician) was appointed to facilitate recruitment. Interested participants contacted the researchers directly to arrange interviews. Among all the participants, only two dropped out of the study. These two care users ultimately found it too difficult to bring their stories. In some cases, care users prefer to have a trustee present. Ethics approval was obtained from the central and local ethics committees involved with the facilities, and all participants provided informed consent. The interviews were audio-recorded, transcribed verbatim, and pseudonymized. Researchers LM and MV independently analyzed and coded the transcripts via a combination of inductive and deductive thematic content analysis in Qualicoder software ( 18 ). Differences in interpretation were discussed, and disagreements were resolved with input from the study supervisor AL. Data collection continued until thematic saturation was reached. However, the interviews did continue to ensure sufficient diversity in terms of age, gender and professional background. In two cases, the transcript was requested by the interviewee for review, but no further feedback was provided here. The researchers made limited notes after the interviews, but these were not used further in the study. Results The results of this study regarding end-of-life care have been published elsewhere ( 26 ). Here, we focus on the ethical aspects of care, where we can distinguish between the overarching theme of 'ethics support' on the one hand and the content of ethical dilemmas and case studies as the second overarching theme on the other. As mentioned, a total of 73 participants were interviewed, including 12 next-of-kin, 17 care users, 24 caregivers, and 20 managers and experts, whose demographic data are presented in Appendix 1. With respect to ethics support, we discuss ethics at the organizational level, e.g., the role of the ethics committee, the ethics expert, and ethical advisory texts (I), and the role and initiatives related to ethics at the care team level (II). Concerning substantive ethical themes, we address, in order, euthanasia and other end-of-life dilemmas (III), refusal of care (IV), the fair allocation of resources in a palliative case (V), palliative sedation (VI), and ethical dilemmas concerning the Oyster Care model (VII). An overview of the different themes can be found in Appendix 5. Ethics support at the organizational and team levels: good practices and challenges In all mental health care facilities involved in this study, some form of ethics support was present. Each hospital has a local medical ethics committee, which is a legal requirement for all hospitals in Belgium. Additionally, each facility or its overarching organization employs an ethical expert. Although ethical advisory texts are available in all participating facilities to support care, particularly on the topic of euthanasia, our interviews revealed that these texts were almost exclusively referenced by individuals in management roles or those with specific expertise in ethics or spiritual care. Among other groups, such as family members or care users, these texts were never mentioned. Caregivers rarely referred to these guidelines as well. On the few occasions they did, it was primarily to cite the procedure regarding euthanasia in cases of unbearable and irredeemable psychiatric suffering. Throughout all the interviews with caregivers and individuals in leadership positions, it became apparent that forms of ethics support or ethics committees are relatively infrequently consulted. This is notable given that all caregivers reported encountering both minor and major ethical dilemmas in their work. We delve deeper into the nature of these dilemmas below. The reasons why ethics committees or ethical experts are not immediately consulted in many cases are varied. In some interviews, participants mentioned that they simply did not think about contacting the committee or expert in certain situations but would consider doing so in the future. Others have indicated that challenging situations are often extensively discussed during team meetings, which typically lead to a resolution. Nevertheless, others noted that presenting a case to the ethics committee is seen as the responsibility of a specific individual, such as a manager or physician, who might delay initiating this process. Additionally, some mentioned that responses from the committee or ethical experts can take considerable time, making it difficult to address urgent situations effectively. “ We also have someone with a tumor now, for example. This is very difficult. This person refused to be treated. (...) And that becomes very difficult. We are now at a stage where a biopsy has to be taken. It is a tumor, but we do not know if it is benign or malignant. In addition, of course, the patient has his rights as well. In the old days, when I started working, there was a lot more coercion (...). Today, you cannot do that. In addition, then you have our ethics committee. However, we are still waiting. Our doctor is also very busy. It does have to go a step further. I think to the central organization, the umbrella. They have an ethicist or a lawyer or a committee. So I think that should be discussed there how to what extent we can force her and what are we allowed to do. Are we allowed to sedate her and go to the hospital that way, for example? Or does it have to be voluntary? Therefore, we were allowed to answer that now and that takes a long time. In the meantime, the tumor is growing. Fortunately, she remains somewhat stable. ” (nurse, discussing barriers to ethics consultation) Notably, some caregivers, especially physicians, state that they feel quite alone in dealing with ethical dilemmas: “So yes, you are on your own (...). Sometimes, intervision moments are organized such that you can exchange with others and that can be gratifying. However, with a large part of the patients you have to figure it out alone.” (psychiatrist, discussing barriers to ethics consultation) Despite these experiences, which highlight barriers to seeking ethics support, several interviews described successful instances where caregivers consulted the ethical expert or ethics committee. In these cases, the support provided was perceived as helpful by the caregivers. Once again, euthanasia emerged as the most frequently discussed topic in this context, although situations involving care refusal or departmental policies were also mentioned. “This is especially when we truly have a case where we are at our wits' end. That’s something that of course happens more often, but when things truly do not go our way anymore. That has only happened twice since I have been working here. The case is then presented, the ethicist puts forward ideas that are completely out of the box, and there is honest, open talk. Without it, having to be purely rational or pragmatic. Thinking together goes differently with someone who is not involved in day-to-day care.” (nurse, discussing ethics consultation facilitators) Notably, one family member highlighted the ethics committee as a key factor in resolving a particularly complex end-of-life care trajectory for their sister, which we explore in greater detail below. During the interviews with caregivers and management staff, it became clear that various initiatives are underway in the facilities included in this study to further integrate ethics into care. For example, several institutions have appointed reference persons or ethics focal points at the departmental level. These individuals, either on a structural or ad hoc basis, facilitate moral case deliberation or peer consultation sessions with caregivers on the ward. They have also undergone additional training in care ethics. “For the staff, I also often lead the TVO. This means ‘time for ourselves’. (…) it is truly about what's on your mind, what are you struggling with? What were you impressed by or what do you think is positive? That can truly be anything. For example, if a patient hadn't said something to anyone that came in hard. That could be something like that. In addition, how do the team members react to it? Or you could say that you feel that you are always being pushed back, for example. Or a patient who does not truly do anything anymore, but then had a moment with you. That can be truly broad. (…) We do this for one hour every week ” (therapist, discussing ethics consultation facilitators) One facility also implemented an initiative where a group of care professionals voluntarily offered to support colleagues following challenging or traumatic events, such as incidents of aggression or suicide. In several facilities, working groups are also established to address specific complex themes, such as end-of-life care, advance care planning, or ethics. The latter group consists of staff members within the facility who provide support for particular cases or implement training initiatives related to ethical topics, including advisory texts. These working groups aim to bridge the gap between the workplace and the official ethics committee, thereby lowering the threshold for accessing ethics support. A notable initiative in one of the facilities was an "ethics pub", where all staff members, as well as family and loved ones, are invited to engage in informal discussions about ethical issues in care or at work at regular intervals. In this way, the ethical expert, who leads the initiative, can stay attuned to the topics that are relevant in care settings. Ethical themes in care for persons experiencing SPMI The most frequently mentioned ethical theme in this study was euthanasia . Although some care users and family members also referred to this issue, it is primarily the caregivers and managers who raise the topic. The topic of euthanasia can raise ethical dilemmas in various ways, as shown in our study. Some participants indicated that it sometimes concerns whether the request is well considered but also the acceptability of it in general, the impact on the team, or the location where it should be carried out. “With this woman, I truly felt like; she's so young, she still has so much potential. However, I also saw her intense suffering .” (counsellor, discussing euthanasia) “We once had a young woman of 30 who said she did not want to live anymore and wanted euthanasia. At first, we tought we had to buy time, and maybe her questions would disappear. However, the issue kept coming back, so we started exploring. So basically we are open to that.” (therapist, discussing euthanasia) “I find that a difficult question. I think: if it happens here, you link the two with each other: euthanasia and the ward. Then, you always have that image: this person has been put to sleep here. However, it may be more comfortable for the person themselves. To die in a place that they're used to.” (nurse, discussing euthanasia) In particular, doctors indicate that they find the topic difficult, whereas others are more open to it and sometimes find the request for euthanasia in persons experiencing SPMI to be understandable. “ I’m truly struggling with the topic of euthanasia. According to me, the patient is looking for someone who does not give up on him or her, who continues to feel that his or her life is worth living” ( psychiatrist, discussing euthanasia). “ Sometimes I can truly understand why someone chooses to get out after so many years. (…) Maybe as a doctor, I should take my role in that as well.” (psychiatrist, discussing euthanasia) Generally, the values of autonomy versus protection of (vulnerable) life and good care are key to the discussion. This can also be extended to other situations where end-of-life care was discussed during the interviews, for example, when a person experiencing SPMI has a life-threatening condition but refuses care. We had a patient who refused the DNR code because he did not see from his issues how serious his situation was. We then asked staff ethics experts to consult with the team, the family and the legal guardian (psychologist, discussing end-of-life decisions). Refusal of care is also highlighted as an important ethical dilemma, even outside the context of end-of-life care. “Therefore, these are also ethical issues with these kinds of patients whom we are confronted with. Yes, even now, someone died just last Friday I think, someone who did not open the door anymore. A man with a chronic alcohol problem, personality disorder, or depression I think the diagnosis must have been. Who also had cancer on top of that. However, who, despite repeatedly texting, ringing the doorbell, says: I do not want counseling from the mobile team. you keep knocking on the door, you go by again, you go knocking on the window. However, he told us to leave him alone. Now, it turns out that deceased. We feel that we went very far in that case, that it was truly interfering, intensive care. However, after a number of months it was decided: there are still so many people on the waiting list who are waiting, and this person can decide for himself. His death, was it an accidental fall from drunkness, was it because of his cancer or did he commit suicide? I do not know. We regularly have these cases, almost every month. Yes, maybe there is an extra person who can think about this independently of the team... That would certainly be useful in care units working with persons experiencing SPMI ” (psychiatrist, discussing care refusal) Another theme that was raised is the fair allocation of resources to a ward with a palliative patient: A lot of time goes into this. In addition, the time goes to one person. It is not going to the 43 others who are hospitalized in the ward. We then tried to counter that by involving patients as well. In addition, that in itself was a great story. However, on the other hand, we make the following reflection: Can or can’t you do this from an ethical point of view? Burden patients with this, following that process together? Additionally, you could say: let the patients choose for themselves. However, the whole ward becomes involved anyway. Even people who do not choose for it.” (ward coordinator, discussing recource allocation) A case study of a brother whose sister was very severely debilitated as a result of juvenile dementia is also noteworthy. Eventually, with the intervention of the ethics committee, palliative sedation was opted for because the living conditions for this person were not diagnosed as a result of the disease, and care became virtually impossible. Thus, the person was constantly in isolation and cried incessantly, with great impact on the caregivers and the other caregivers. The brother indicated that the dying process was exceptionally long, and the body was already beginning to partially die, while the woman was still alive. This had a particularly traumatic effect on all those involved… Another theme that emerged from various interviews was the use of the Oyster Care model and the ethical questions it raises, particularly regarding the handling of rules; the balance between distance and closeness between the care user and caregiver; and whether the care is sufficiently tailored to the needs and wishes of the care user. More specifically, some participants questioned the abandonment of certain principles of recovery-oriented care. “For example, how does our approach now relate to hospital rules? Or the legislation? A lot of what we want to do in the department is not in line with what they do in other departments or with common quality standards.” (psychologist, discussing Oyster Care) Sometimes I find that I am also letting go beyond my own boundaries. In addition, that is not okay. However, we have such a special bond with our people, and I notice that many colleagues do.” (nurse, discussing Oyster Care) “Oyster Care to me implies too little encapsulation or freezing of the situation. However, maybe it is just me misunderstanding the word. However, of course, this now goes against the way I have worked with so many patients already experiencing SPMI. For so many patients, I have often still seen slightly more quality of life or, at some point, an opportunity to do something else that gave a tad more autonomy. However, Oyster Care is much more focused on cocooning. If that is an open cocoon, that is ok with me. If that is a cocoon that people can go to and back out of, that is ok with me.” (psychiatrist, discussing Oyster Care) Remarkably, these findings from caregivers partially align with the comments made by persons experiencing SPMI themselves, who sometimes indicated in conversations that the care they received was insufficiently challenging or that they had experienced aggressive behavior from other care users. “I actually have very little to do here. Sometimes, the caregivers especially like to be with each other. I cannot truly have conversations with the other residents” (care user, discussing Oyster Care) The theme was also raised that care for persons experiencing SPMI, as a vulnerable group, is an ethical responsibility. According to some participants, care for these vulnerable groups should not be subject to 'market thinking'. By this, it was meant that the care for vulnerable persons should not depend on a cost-benefit analysis. Rather, it is the moral duty of society to care for these persons, regardless of the 'costs'. This last point aligns well with a theme that frequently emerged among family members, for whom the search for appropriate care was often a difficult process. Many expressed a need for relief from their responsibilities toward their family members experiencing SPMI, for whom they could not or did not want to be solely responsible. “ It was truly difficult to find appropriate care for my son, even for someone who knows the healthcare system very well. It has taken years. (...) I no longer wanted to bear this responsibility alone. What also truly affected me was how many people, including family members, did not understand the situation and just stopped contacting me .” (mother, discussing Oyster Care) Discussion With regard to the ethics support system Ethics and ethics support are fundamental components of care, both at the level of the organization, team and individual. From the very conception of care, ethical and deontological considerations are inherent to the profession. This includes the Hippocratic Oath, which remains central to many physicians to this day, the Florence Nightingale Pledge for nurses, and the four basic principles of biomedical ethics formulated by Beauchamp and Childress( 27 ). Our research revealed that in all the facilities where we interviewed participants, some kind of ethics framework was in place. All facilities were connected to a local ethics committee, and there was always a central expert responsible for ethics support and policy regarding ethical issues. This was often concretized through ethical advisory documents. Despite this structural presence, our research indicates that these advisory bodies or individuals are not always well known or utilized by staff or other actors in care. While in some cases, existing channels are consulted and many facilities also focus on more accessible forms of ethics support, such as reference persons or local working groups, significant barriers remain in regard to utilizing these resources, even in very difficult and complex situations. This finding aligns with other scientific research regarding ethics consultation ( 28 , 29 ). In many cases, (unstructured) team discussions appear to be the primary resource that staff fall back on in challenging situations, although some caregivers, including physicians, reported feeling 'alone' with these issues. Therefore, it seems advisable for organizations to continue to focus on lowering the barriers to ethical dialog by, for instance, implementing ethics reference persons in teams, building ethics expertise within teams, and facilitating informal opportunities for stakeholders to discuss sensitive topics. Local referents or working groups can play a crucial bridging or liaison role between care practices and the ethics committee, mutually enhancing each other's functioning. Additionally, promoting existing initiatives and their functioning can be important. With regard to the ethical dilemmas and themes in care for persons experiencing SPMI Given that this study explored both end-of-life care and ethical issues, it is not surprising that many of the topics raised by participants as important ethical issues in the care of persons experiencing SPMI centered around end-of-life care. Euthanasia clearly emerged as the most prominent topic. The fact that this issue also receives significant attention in the media and public debate may play a role here. When a situation arises in care where a care user requests euthanasia, the results of this study indicate that it has a significant effect on caregivers. This often leads to peer consultation or ethical deliberation as part of a broader clarification process. Notably, the participants held differing attitudes toward euthanasia. In many cases, teams involve other specific organizations, such as LEIF, Vonkel and Reakiro, to further help clarify these cases 1 . From the data, we can infer that euthanasia, which is consistent with findings from other studies, is a topic that causes some division among care providers and has a significant impact( 20 , 21 ). A good understanding of the legislation, fostering communication among all stakeholders, and providing ethics support to help balance autonomy and the duty of care are recommended. In addition to euthanasia, care users in palliative situations also present ethical dilemmas. Several times, teams in psychiatric facilities are not always well equipped to support a palliative care user optimally, a finding that resonates with other research ( 30 ). Questions were raised about whether it is fair in terms of allocating resources to other care users and to what extent they can be involved in the process. Elsewhere, we discussed the importance of good collaboration with mobile palliative care teams, the development of sufficient expertise in somatic and palliative care within psychiatric facilities, and the possibility of temporarily adding extra personnel support to wards with a palliative case. A general practitioner or another physician with expertise in somatic care can play an important bridging role in this process ( 31 ). Following this theme, there were situations where doubts were expressed about initiating palliative care on the one hand or administering and progressing to palliative sedation on the other hand for one of the interviewees' family members. These situations also suggest that there may sometimes be a lack of knowledge about palliative care within mental health care, but they also highlight that ethics plays a crucial role in the decision-making process. The fact that some persons experiencing SPMI may have difficulty expressing themselves or possess reduced decision-making capacity adds complexity to end-of-life decisions, which inherently carry ethical sensitivity ( 32 ). Although a significant portion of the topics raised related to end-of-life care, other ethical issues in the care of persons experiencing SPMI were also mentioned. Several participants reported the dilemma and helplessness they experienced when a person neglected themselves or refused certain (basic) care. This observation aligns with research findings in other countries as well ( 9 ). Furthermore, four key ethical subthemes were mentioned in relation to the Oyster Care model, which can primarily be understood as a form of long-term care for persons experiencing SPMI, on the basis of several principles derived from palliative care, such as an emphasis on quality of life and creativity. These findings further nuance previous ethical reflections regarding the model ( 23 ). The first subtheme relates to a societal level, where care for the most vulnerable, such as persons experiencing SPMI, is viewed as an ethical duty by some participants. For some of them, care should not be entirely framed within a "market mentality," which is seen as a significant threat by some interviewees. A second subtheme concerns the tension between regulations and creativity: to what extent can and should rules be bent or broken in the interest of providing tailored and creative care, following the principles of a palliative care approach? A third subtheme can be described as the balance between distance and closeness between the caregiver and the care user. In our study, care for persons experiencing SPMI was often described as long-term care. The relationships between care users and caregivers are often characterized as very strong. However, this also creates the potential for boundaries to be crossed, for example, in the tolerance of disruptive behavior. Disruptive behavior between care users was also raised as an ethical issue by persons experiencing SPMI. Finally, there was repeated mention of whether the care remained sufficiently ambitious and adapted to the needs and wishes of the care user. This is also related to the autonomy of the care user. Some care users themselves indicated that care was not fully adapted to their needs, and from many stories shared by family members, it was evident that the search for appropriate care was long and difficult. There was a clear desire among family members to be at least partially relieved of their (perceived) responsibility. From these last elements, we can conclude that there is a need for further reflection on the Oyster Care model, its relationship with the general principles of recovery-oriented care, and the applicable regulations. At the local level, more attention could be given to ethics support, particularly in the development and application of (departmental) rules, client participation, treatment, and the management of disruptive behavior. Strengths and limitations of the study One of the strengths of this study is the inclusion of a broad range of stakeholders, including care users, their relatives, caregivers, managers, and experts in palliative and psychiatric care. This comprehensive approach allows for a nuanced understanding of the experiences, needs, and ethical issues associated with both care in general and end-of-life care for persons experiencing SPMI. By capturing the perspectives of all relevant actors, the study provides a well-rounded picture of the current state of care in Flanders and offers valuable insights for improving care at multiple levels—from individual care interactions to institutional policies. Another strength lies in the study’s focus on a highly vulnerable and often overlooked population. End-of-life care and ethical issues regarding persons experiencing SPMI remain underexplored areas in the philosophical, psychiatric and palliative care literature. This study contributes significantly to filling that gap by highlighting the unique challenges and opportunities involved in providing compassionate, ethical care to persons experiencing SPMI at the end of their lives. The ethical dilemmas surrounding euthanasia, advance care planning, Oyster Care and palliative care in psychiatric settings are especially valuable for shaping future research and policy development. However, the study is not without limitations. First, it is geographically limited to Flanders, Belgium, meaning that its findings may not be generalizable to other regions or countries with different legal, cultural, or healthcare frameworks.Within this region itself however, a good distribution was achieved. The unique legal landscape in Belgium, particularly with respect to euthanasia, may not reflect the experiences of other countries where assisted dying is not legally permitted. Another limitation is the relatively small sample size for certain subgroups, particularly care users and their relatives. While the study reached thematic saturation, the voices of care users may be underrepresented, especially given the reluctance of many care users to discuss end-of-life issues in depth. Notably, despite participating voluntarily and being informed about the topics to be discussed, care users often prefer to touch only briefly on the subject of end-of-life. During the interviews, they tended to focus more on daily care, hobbies, and social relationships. In contrast to caregivers and managers, care users were not explicitly asked about ethical issues but were instead inquired about matters they considered important or found challenging. This could lead to bias in the findings, where the perspectives of caregivers and experts may carry more weight. Future research should aim to engage a larger and more diverse group of care users to ensure that their voices are more prominently included. In general, we also observed that the results for caregivers and managers/experts were closely aligned, as the latter are often deeply involved in care and frequently have experience working as caregivers themselves; some caregivers also have (limited) management responsibilities. Additionally, the study relied on semistructured interviews, which, while valuable for exploring complex issues, may limit the comparability of responses across participants. The participants may have interpreted the questions differently, leading to variations in the depth and type of responses provided. A more structured approach to data collection, or the inclusion of additional qualitative methods such as focus groups, could have increased the richness of the data. Finally, the study focused primarily on residential care settings, meaning that the experiences of persons experiencing SPMI in nonresidential or community-based settings may not be fully captured. This limits the study’s ability to provide a comprehensive overview of end-of-life care for all persons experiencing SPMI, regardless of the care setting. Future studies should aim to include a broader range of care environments to ensure that the findings are applicable to all persons experiencing SPMI, regardless of their living situation. Conclusions and recommendations This study highlights the integral role of ethics and ethics support in the care of persons experiencing severe and persistent mental illness, particularly in relation to end-of-life care. Our findings indicate that while an ethics framework is present in all facilities, challenges remain in ensuring its widespread use. The barriers to accessing ethical support, despite the existence of advisory bodies, underscore the need for organizations to invest in lowering these barriers. Practical recommendations include enhancing the visibility of ethics support channels, implementing reference persons for ethics, fostering team-based ethics expertise, and providing informal spaces for dialogue on sensitive topics. Ethical dilemmas, particularly those surrounding euthanasia, palliative care, and self-neglect, were central to the discussions. While euthanasia remains a key ethical issue, further attention should be given to the unique complexities in mental health care, such as reduced decision-making capacity in persons experiencing SPMI. The study also highlights the need for better integration of palliative care in psychiatric settings, particularly through collaboration with external palliative care teams and the development of somatic care expertise within psychiatric facilities. Additionally, the research identifies key ethical themes in long-term care models such as Oyster Care, including the tension between market-driven care and societal responsibility and the balance between regulatory constraints and the need for creative care solutions. To address these concerns, further reflection is needed on how the principles of recovery-oriented care can be better integrated with the existing regulatory frameworks. Finally, our findings suggest that there is a need for more comprehensive training and resources related to palliative care within mental health settings and for organizations to reflect on their care models to better support the autonomy and quality of life of persons experiencing SPMI, especially at the end of life. Further research should explore these themes in diverse care settings and with a broader range of stakeholders, e.g., exploring care users’ moral intuitions regarding specific topics or including more experts-by-experience, to ensure inclusive, compassionate, and ethical care for persons experiencing SPMI. Abbreviations SPMI: Severe and Persistent Mental Illness LEIF: LevensEinde InformatieForum Declarations ● Ethics approval and consent to participate The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The study was approved by the central ethics committee KU Leuven Belgium (unique number: B3222021000688) and by the local ethics committees associated with the facilities where the study took place. Written informed consent was obtained from all individual participants. For privacy reasons, pseudonymization was used when the quotes included in this document were displayed. ● Consent for publication All participants in this study provided written consent for the pseudonymized publication of the data. ● Availability of data and materials The data that support the findings of this study are available from KU Leuven, but restrictions apply to the availability of these data, which were used under licence for the current study and so are not publicly available. The data are, however, available from the corresponding author upon reasonable request and with the permission of the authorized ethics committee. ● Competing Interests Not Applicable ● Funding This publication came about with the support of the KU Leuven Special Research Fund (BOF) (grant number: ebc7b31d-c18d-4d94-9639-cfdb561abcdf). ● Authors' contributions (I) Conception and design: Loïc Moureau (II) Administrative support: Loïc Moureau (III) Provision of study materials or patients: Loïc Moureau (IV) Collection and assembly of data: Loïc Moureau, Monica Verhofstadt (V) Data analysis and interpretation: Loïc Moureau, Monica Verhofstadt (VI) Manuscript writing: All authors. (VII) Final approval of manuscript: All authors. ● Acknowledgements We extend our sincere thanks to all the participants in the research, as well as to the organizations that commit and allocate staff to conduct the interviews. Clinical trial number: not applicable. References Zumstein N, Riese F. Defining Severe and Persistent Mental Illness—A Pragmatic Utility Concept Analysis. Front Psychiatry. 2020;11. Coulter A. Schuermeyer, Isabel, Sola, Christopher. Evaluating Ineffective Treatments: A Proposed Model for Discussing Futility in psychiatric Illness. Harv Rev Psychiatry. 2021;29(3):240–5. James S, Abate D, Abate K, Abay S, Abbafati C, Abbasi N, et al. Global, regional, and national incidence, prevalence, and years lived with disability for 354 diseases and injuries for 195 countries and territories, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet. 2018;392:1789–858. De Hert M, Cohen D, Bobes J, Cetkovich-Bakmas M, Leucht S, Ndetei DM, et al. Physical Illness in Patients with Severe Mental Disorders. Ii. Barriers to Care, Monitoring and Treatment Guidelines, Plus Recommendations at the System and Individual Level. World Psychiatry. 2011;10(2):138–51. Donald EE, Stajduhar KI. A Scoping Review of Palliative Care for Persons with Severe Persistent Mental Illness. Palliat Support Care. 2019;17(4):479–87. Trachsel M, Irwin SA, Biller-Andorno N, Hoff P, Riese F. Palliative Psychiatry for Severe and Persistent Mental Illness. Lancet Psychiatry. 2016;3(3):200–200. Woods A, Willison K, Kington C, Gavin A. Palliative Care for People with Severe Persistent Mental Illness: A Review of the Literature. Can J Psychiatry. 2008;53(11):725–36. Levitt S, Cooper RB, Gupta M, Kirby J, Panko L, Rosenbaum D, et al. Palliative psychiatry: research, clinical, and educational priorities. Annals Palliat Med. 2024;13(3):542–57. Butler H, O’ Brien AJ. Access to specialist palliative care services by people with severe and persistent mental illness: A retrospective cohort study. Int J Ment Health Nurs. 2018;27(2):737–46. Ebenau AF, Dijkstra BAG, Huurne C ter, Hasselaar GJ, Vissers KCP, Groot CM. Palliative Care for Patients with Substance Use Disorder and Multiple Problems: A Qualitative Study on Experiences of Healthcare Professionals, Volunteers and Experts-by-Experience. BMC PALLIAT CARE. 2020;19(1):8–8. Decorte I, Verfaillie F, Moureau L, Meynendonckx S, Ballaer KV, Geest ID et al. Oyster Care: An Innovative Palliative Approach towards SPMI Patients. Front Psychiatry. 2020;11. Strand M, Sjöstrand M, Lindblad A. A palliative care approach in psychiatry: clinical implications. BMC Med Ethics. 2020;21(1):29–8. van Veen SMP, Ruissen AM, Beekman ATF, Evans N, Widdershoven GAM. Establishing irremediable psychiatric suffering in the context of medical assistance in dying in the Netherlands: a qualitative study. Can Med Association J (CMAJ). 2022;194(13):E485–91. Moureau L, Verhofstadt M, Liégeois A. Mapping the ethical aspects in end-of-life care for persons with a severe and persistent mental illness: A scoping review of the literature. Front Psychiatry. 2023;14:1094038–1094038. Koninklijk besluit (1994, 12 augustus) tot wijziging van het koninklijk besluit van 23 oktober 1964 tot bepaling van de normen die door de ziekenhuizen en hun diensten moeten worden nageleefd. Belgisch Staatsblad, 27 september 1994. [Internet]. Available from: http://www.ejustice.just.fgov.be/cgi_loi/change_lg.pl?language=nl&la=N&cn = 1994081264&table_name = wet. What is Moral Case Deliberation [Internet], Amsterdam UMC. Available from: https://www.vumc.nl/research/ethiek-recht-humaniora/dienstverlening-support/ethiek-support-ethics-support/wat-is-moreel-beraad-what-is-moral-case-deliberation.htm#:~:text=Een%20Moreel%20Beraad%20is%20een,met%20behulp%20van%20een%20gespreksleider Carlsson IM, Blomqvist M, Jormfeldt H. Ethical and Methodological Issues in Qualitative Studies Involving People with Severe and Persistent Mental Illness Such as Schizophrenia and Other Psychotic Conditions: A Critical Review. Int J Qualitative Stud Health Well-Being. 2017;12(Suppl 2):1–10. Verhofstadt M, Pardon K, Audenaert K, Deliens L, Mortier F, Liégeois A, et al. Why adults with psychiatric conditions request euthanasia: A qualitative interview study of life experiences, motives and preventive factors. J Psychiatr Res. 2021;144:158–67. Verhofstadt M, Moureau L, Pardon K, Liegeois A. Ethical perspectives regarding Euthanasia, including in the context of adult psychiatry: a qualitative interview study among healthcare workers in Belgium. BMC Med Ethics. 2024;25:60. Nicolini ME, Kim SYH, Churchill ME, Gastmans C. Should euthanasia and assisted suicide for psychiatric disorders be permitted? A systematic review of reasons. Psychol Med. 2020;50(8):1241–56. Verhofstadt M, Audenaert K, Van Den Broeck K, Deliens L, Mortier F, Titeca K, et al. Belgian psychiatrists’ attitudes towards, and readiness to engage in, euthanasia assessment procedures with adults with psychiatric conditions: A survey. BMC Psychiatry. 2020;20(1):374–374. EUTHANASIE – Cijfers. van 2023 [Internet]. FCEE; Available from: https://overlegorganen.gezondheid.belgie.be/nl/documenten/persbericht-fcee-euthanasie-cijfers-van-2023 Liégeois A, Moureau L. Aspects éthiques des soins crustatifs. Revue d'éthique et de théologie morale. 2023; 318(3): 67–87. Lindblad A, Helgesson G, Sjöstrand M. Towards a palliative care approach in psychiatry: do we need a new definition? J Med Ethics. 2019;45(1):26–30. Van Hoe C, Moureau L, Verhofstadt M. How to engage people experiencing severe and persistent mental illness in qualitative research: a descriptive and reflexive analysis. Int J Qualitative Stud Health Well-being. 2024;19(1):2408817. Moureau L, Verhofstadt M, Hoe CV, Vandenberghe J, Van Audenhove C, Liégeois A. Discussing end-of-life care for persons experiencing severe and persistent mental illness: a qualitative study among stakeholders in Flanders. Annals Palliat Med. 2025;14:114–27. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 8th ed. New York: Oxford University Press; 2019. De Panfilis L, Merlo DF, Satolli R, Perin M, Ghirotto L, Costantini M, et al. Clinical ethics consultation among Italian ethics committee: A mixed method study. PLoS ONE. 2019;14(12):e0226710–0226710. Haltaufderheide J, Gather J, Juckel G, Schildmann J, Vollmann J. Types of Ethical Problems and Expertise in Clinical Ethics Consultation in Psychiatry – Insights From a Qualitative Empirical Ethics Study. Front Psychiatry. 2021;12:558795–558795. den Boer K, de Veer AJE, Schoonmade LJ, Verhaegh KJ, van Meijel B, Francke AL. A systematic review of palliative care tools and interventions for people with severe mental illness. BMC Psychiatry. 2019;19(1):106. Moureau L, Tansens A, Desimpele L, Verdeé T, Delepeire J. Omgaan met zorgweigering bij een persoon met een ernstige psychiatrische aandoening en een levensbedreigende ziekte: een casusbespreking. Tijdschrift voor Geneeskunde en gezondheidszorg. 2024;80:156–66. Butler H, O’Brien AJ. Access to specialist palliative care services by people with severe and persistent mental illness: A retrospective cohort study. Int J Ment Health Nurs. 2018;27(2):737–46. Appendix. 1: Demographics. Caregivers. managers and experts (n = 44). Footnotes LEIF (End-of life information forum) is, according to their own website, an open initiative of people and associations striving for a dignified end of life for all, with respect for the patient's will being paramount. LEIF also trains healthcare professionals, including physicians, to engage around end-of-life questions and decisions (including euthanasia). Vonkel presents itself as a drop-in house and meeting place for those dealing with death, dying, and grief. Reakiro is, according to their website, a place you can go as a person with a desire for euthanasia because of unbearable mental suffering due to a psychiatric condition. All three organizations operate in the Flemish region, Belgium. Additional Declarations No competing interests reported. Supplementary Files Appendix1demographics.docx Appendix2interviewguidecaregivers.docx Appendix3interviewguidecareusers.docx Appendix4inclusioncriteria.docx appendix5overviewofthemes.docx Cite Share Download PDF Status: Published Journal Publication published 02 Jun, 2025 Read the published version in BMC Medical Ethics → Version 1 posted Editorial decision: Revision requested 19 May, 2025 Reviews received at journal 03 May, 2025 Reviews received at journal 28 Apr, 2025 Reviewers agreed at journal 27 Apr, 2025 Reviews received at journal 24 Apr, 2025 Reviewers agreed at journal 24 Apr, 2025 Reviewers agreed at journal 24 Apr, 2025 Reviewers invited by journal 22 Apr, 2025 Editor assigned by journal 22 Apr, 2025 Submission checks completed at journal 08 Apr, 2025 First submitted to journal 31 Mar, 2025 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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10:56:42","extension":"docx","order_by":3,"title":"","display":"","copyAsset":false,"role":"supplement","size":22024,"visible":true,"origin":"","legend":"","description":"","filename":"Appendix4inclusioncriteria.docx","url":"https://assets-eu.researchsquare.com/files/rs-5699095/v1/833b101474ac50ae1ec66e71.docx"},{"id":81199639,"identity":"9eb71201-99c8-424b-acec-a876b6162da3","added_by":"auto","created_at":"2025-04-23 11:04:42","extension":"docx","order_by":4,"title":"","display":"","copyAsset":false,"role":"supplement","size":25826,"visible":true,"origin":"","legend":"","description":"","filename":"appendix5overviewofthemes.docx","url":"https://assets-eu.researchsquare.com/files/rs-5699095/v1/2aa07bfae0c6c0f0d9ac35be.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Mapping ethical issues encompassing end-of-life care for persons experiencing severe and persistent mental illness: a qualitative study","fulltext":[{"header":"Introduction","content":"\u003cp\u003ePersons experiencing severe and persistent mental illness (SPMI) form a small yet vulnerable group within mental health care. Although there is no consensus on a definition for SPMI, some researchers describe it using the \"3 D\u0026rsquo;s\"\u0026mdash;disease, duration, and disability (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Persons experiencing SPMI are diagnosed with one or more severe mental illnesses, such as schizophrenia, bipolar disorder, or severe depression. These conditions typically follow a chronic course, with medical and therapeutic interventions offering little to no improvement in quality of life or even worsening it (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). In addition to the illness itself, the disability it causes leads to significant suffering and challenges in daily life. Globally, depending on the criteria used, approximately 1% of the population lives experiencing SPMI (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). Statistically, persons experiencing SPMI face a significantly reduced life expectancy\u0026mdash;up to 15 years shorter than the general population does\u0026mdash;largely because of severe cooccurring somatic conditions like obesitas or dysphagia (\u003cspan additionalcitationids=\"CR5 CR6\" citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). This last observation makes concern toward end-of-life and care provision encompassing the dying process paramount.\u003c/p\u003e \u003cp\u003eRecently, end-of-life care for persons experiencing SPMI, in several ways, has indeed garnered more attention in the international scientific literature. Central to the debate are topics such as the need for \u0026lsquo;palliative psychiatry\u0026rsquo; (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e), the provision of \u0026lsquo;regular\u0026rsquo; palliative care (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e), the potential application of a \u0026lsquo;palliative care approach\u0026rsquo; (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e), and the challenges of facilitating medical assistance in dying (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). Most of these concepts, such as palliative care, are directly related to care in the dying process, whereas others, such as \u0026lsquo;the palliative care approach\u0026rsquo;, are more loosely related to the end-of-life and focus more on the \u0026lsquo;philosophy\u0026rsquo; from which care is provided.\u003c/p\u003e \u003cp\u003eDelivering high-quality care to persons experiencing SPMI both in general and at the end of life involves numerous ethical challenges, including assessing decision-making capacity, managing disruptive behavior and self-stigma, and navigating a fragmented care landscape (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e). In such cases, it may be advisable to organize ethics consultation. The purpose of these consultations is to help healthcare teams, patients, and families navigate complex moral dilemmas in clinical care. They provide a structured process to clarify ethical issues, explore underlying values, and offer guidance on decision-making. Their goal is to ensure that patient care aligns with ethical principles while supporting clear communication and fair, thoughtful resolution of challenging situations.\u003c/p\u003e \u003cp\u003eIn Belgium, as in many other countries, hospitals are legally required to have an ethics committee. This also applies to psychiatric hospitals. Broadly speaking, these committees have three tasks: providing guidance and advice on ethical aspects of hospital care; evaluating experiments involving human participants; and offering advice on individual cases where ethical questions arise (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn various (psychiatric) hospitals or collaborative networks of facilities, there is often an ethics expert who coordinates ethics-related activities and sometimes provides training or facilitates moral case deliberation. This is a discussion in which participants collectively address an ethical issue from their work. They do so in a structured manner, using a specific discussion methodology and guided by a facilitator (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eDespite the growing body of literature offering reflections, recommendations, and highlighting difficulties regarding end-of-life care and ethical issues in persons experiencing SPMI, very little research has directly involved care users, relatives, and caregivers themselves (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). This study seeks to address this gap by exploring the experiences, needs, and expectations of care users, their relatives, and caregivers in relation to both end-of-life care and ethical issues in care. It also aims to capture the perspectives of managers and experts in ethics and palliative care on the subject.\u003c/p\u003e \u003cp\u003eIn Flanders, Belgium, these issues have been particularly pressing due to the legal framework permitting euthanasia on the basis of unbearable and irremediable psychiatric suffering since 2002 (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e) and the development of the Oyster Care Model.\u003c/p\u003e \u003cp\u003eBelgium is one of the few countries where euthanasia can be carried out on the grounds of suffering from an irremediable medical condition, including psychiatric disorders. However, in practice, there are many practical, medical, ethical, and legal discussions surrounding this issue (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Questions arise regarding, among other things, whether a psychiatric condition can ever be considered irremediable and to what extent the psychiatric disorder influences the person\u0026rsquo;s capacity to make decisions when requesting euthanasia (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e). Research has also shown that many psychiatrists are very cautious about performing euthanasia or providing advice regarding its implementation (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Legal liability also plays a role in these discussions. As a result, the number of euthanasia cases based on psychiatric grounds is relatively small, although the numbers are increasing over time (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe aforementioned Oyster Care model complements recovery-oriented care and uses the metaphor of a shell to represent a palliative approach for persons experiencing SPMI, focusing on quality of life, creativity, and a holistic view of the person (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). The model is, parallel to palliative care, based on four pillars: physical care adequately responding to the somatic impairments of these patients; psychological care changing the scope of therapy by focusing on mental comfort and well-being; social care providing a structure of daily activities and contacts; and existential care enhancing the experience of life as valuable and meaningful. The mission of the Oyster Care model is to adapt the environment as much as possible to the care user rather than the other way around. For example, a care recipient's hoarding tendencies are tolerated or sublimated to a certain extent. This approach also aims to reduce the use of restrictive or coercive measures. The model is dynamic, with care being scaled up or down according to the care user's rhythm. Developed in the context of euthanasia legislation, the model seeks to provide a full-fledged alternative equivalent to palliative care in the somatic healthcare sector. While this approach offers numerous benefits, it also raises ethical concerns, such as the risk of adopting a paternalistic or insufficiently recovery-oriented perspective (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). A careful balance must be struck to avoid adding stigma while acknowledging the complexity and severity of the suffering experienced by this population (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eGiven the scarcity of studies that amplify the voices of all relevant stakeholders, we undertook a qualitative study in Flanders. Involving care users, relatives, caregivers, managers, and experts, we aim to contribute to the ethical obligation to include vulnerable persons experiencing SPMI in qualitative research, despite the additional challenges this may present (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e). We focus on the following main research question: What are the ethical concerns and related themes facing persons with SPMI, especially regarding end-of-life discussions, as noted by the different stakeholders?\u003c/p\u003e"},{"header":"Methodology","content":"\u003cp\u003eA total of 73 participants, including 12 next-of-kin, 17 care users, 24 caregivers, and 20 managers and experts, were interviewed once about their experiences, needs, and expectations regarding end-of-life care for persons experiencing severe and persistent mental illness. Demographics of the participants are provided in Appendix 1. We also explored ethical issues related and unrelated to end-of-life care. The interviews were conducted in Dutch by two researchers (LM, male and MV, female), with backgrounds in care ethics and psychology, respectively, from July 2022 to May 2023. We reported our experiences elsewhere (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). The researchers who conducted the interviews both received training in qualitative research, and MV had experience conducting interviews with persons experiencing severe mental illness. The interviewees were not known by the interviewers. The subject matter and population were known and of interest to the interviewers because of previous research and professional activities. Assumptions and expected results of the qualitative research were noted beforehand, and similarities and differences were subsequently discussed by the researchers.\u003c/p\u003e \u003cp\u003e The participants chose the interview locations, which were typically the ward or organization where they worked or lived\u0026mdash;often for several years in the case of care users. The piloted semistructured interviews followed a preconstructed topic guide, provided in Appendices 2 and 3, covering themes such as care approaches, end-of-life care needs, ethical considerations, and existential questions. For caregivers, managers, and experts, there was direct experience with end-of-life issues and some aspects of medical ethics. However, for relatives and care users, the experiences were not always as explicit, although some relatives reflected on the care and death of a family member experiencing SPMI or had come into contact with medical ethics through their professional life. Occasionally, care users had experiences with advance care planning, requests for medical assistance in dying, or severe illnesses such as cancer, whereas for others, end-of-life discussions were more hypothetical. Although care users and families were not asked explicitly about ethics, they were asked about what good care means, what issues are important to them and what difficulties they have experienced in care. The inclusion and exclusion criteria can be found in Appendix 4.\u003c/p\u003e \u003cp\u003eThe interviews ranged from 30 minutes to more than two hours, averaging approximately one hour. The participants were purposely recruited from seven mental health care organizations across the five Flemish provinces in Belgium, representing a range of care settings, including residential care, assisted living, and ambulatory services. The participants were evenly distributed among these 7 organizations. These organizations operate from various therapeutic and existential frameworks, all of which provide some form of long-term and protective care for persons experiencing SPMI. The organizations were initially contacted via email and phone, and a contact person (e.g., a head nurse, therapist, or physician) was appointed to facilitate recruitment. Interested participants contacted the researchers directly to arrange interviews. Among all the participants, only two dropped out of the study. These two care users ultimately found it too difficult to bring their stories. In some cases, care users prefer to have a trustee present.\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eEthics approval\u003c/strong\u003e \u003cp\u003e was obtained from the central and local ethics committees involved with the facilities, and all participants provided informed consent. The interviews were audio-recorded, transcribed verbatim, and pseudonymized. Researchers LM and MV independently analyzed and coded the transcripts via a combination of inductive and deductive thematic content analysis in Qualicoder software (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e). Differences in interpretation were discussed, and disagreements were resolved with input from the study supervisor AL. Data collection continued until thematic saturation was reached. However, the interviews did continue to ensure sufficient diversity in terms of age, gender and professional background. In two cases, the transcript was requested by the interviewee for review, but no further feedback was provided here. The researchers made limited notes after the interviews, but these were not used further in the study.\u003c/p\u003e \u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eThe results of this study regarding end-of-life care have been published elsewhere (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e). Here, we focus on the ethical aspects of care, where we can distinguish between the overarching theme of 'ethics support' on the one hand and the content of ethical dilemmas and case studies as the second overarching theme on the other. As mentioned, a total of 73 participants were interviewed, including 12 next-of-kin, 17 care users, 24 caregivers, and 20 managers and experts, whose demographic data are presented in Appendix 1.\u003c/p\u003e \u003cp\u003eWith respect to ethics support, we discuss ethics at the organizational level, e.g., the role of the ethics committee, the ethics expert, and ethical advisory texts (I), and the role and initiatives related to ethics at the care team level (II). Concerning substantive ethical themes, we address, in order, euthanasia and other end-of-life dilemmas (III), refusal of care (IV), the fair allocation of resources in a palliative case (V), palliative sedation (VI), and ethical dilemmas concerning the Oyster Care model (VII). An overview of the different themes can be found in Appendix 5.\u003c/p\u003e\n\u003ch3\u003eEthics support at the organizational and team levels: good practices and challenges\u003c/h3\u003e\n\u003cp\u003e In all mental health care facilities involved in this study, some form of ethics support was present. Each hospital has a local medical ethics committee, which is a legal requirement for all hospitals in Belgium. Additionally, each facility or its overarching organization employs an ethical expert.\u003c/p\u003e \u003cp\u003eAlthough ethical advisory texts are available in all participating facilities to support care, particularly on the topic of euthanasia, our interviews revealed that these texts were almost exclusively referenced by individuals in management roles or those with specific expertise in ethics or spiritual care.\u003c/p\u003e \u003cp\u003eAmong other groups, such as family members or care users, these texts were never mentioned. Caregivers rarely referred to these guidelines as well. On the few occasions they did, it was primarily to cite the procedure regarding euthanasia in cases of unbearable and irredeemable psychiatric suffering.\u003c/p\u003e \u003cp\u003eThroughout all the interviews with caregivers and individuals in leadership positions, it became apparent that forms of ethics support or ethics committees are relatively infrequently consulted. This is notable given that all caregivers reported encountering both minor and major ethical dilemmas in their work. We delve deeper into the nature of these dilemmas below.\u003c/p\u003e \u003cp\u003eThe reasons why ethics committees or ethical experts are not immediately consulted in many cases are varied. In some interviews, participants mentioned that they simply did not think about contacting the committee or expert in certain situations but would consider doing so in the future. Others have indicated that challenging situations are often extensively discussed during team meetings, which typically lead to a resolution. Nevertheless, others noted that presenting a case to the ethics committee is seen as the responsibility of a specific individual, such as a manager or physician, who might delay initiating this process. Additionally, some mentioned that responses from the committee or ethical experts can take considerable time, making it difficult to address urgent situations effectively.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eWe also have someone with a tumor now, for example. This is very difficult. This person refused to be treated. (...) And that becomes very difficult. We are now at a stage where a biopsy has to be taken. It is a tumor, but we do not know if it is benign or malignant. In addition, of course, the patient has his rights as well. In the old days, when I started working, there was a lot more coercion (...). Today, you cannot do that. In addition, then you have our ethics committee. However, we are still waiting. Our doctor is also very busy. It does have to go a step further. I think to the central organization, the umbrella. They have an ethicist or a lawyer or a committee. So I think that should be discussed there how to what extent we can force her and what are we allowed to do. Are we allowed to sedate her and go to the hospital that way, for example? Or does it have to be voluntary? Therefore, we were allowed to answer that now and that takes a long time. In the meantime, the tumor is growing. Fortunately, she remains somewhat stable.\u003c/em\u003e\u0026rdquo; (nurse, discussing barriers to ethics consultation)\u003c/p\u003e \u003cp\u003eNotably, some caregivers, especially physicians, state that they feel quite alone in dealing with ethical dilemmas:\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;So yes, you are on your own (...). Sometimes, intervision moments are organized such that you can exchange with others and that can be gratifying. However, with a large part of the patients you have to figure it out alone.\u0026rdquo;\u003c/em\u003e (psychiatrist, discussing barriers to ethics consultation)\u003c/p\u003e \u003cp\u003eDespite these experiences, which highlight barriers to seeking ethics support, several interviews described successful instances where caregivers consulted the ethical expert or ethics committee. In these cases, the support provided was perceived as helpful by the caregivers. Once again, euthanasia emerged as the most frequently discussed topic in this context, although situations involving care refusal or departmental policies were also mentioned.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;This is especially when we truly have a case where we are at our wits' end. That\u0026rsquo;s something that of course happens more often, but when things truly do not go our way anymore. That has only happened twice since I have been working here. The case is then presented, the ethicist puts forward ideas that are completely out of the box, and there is honest, open talk. Without it, having to be purely rational or pragmatic. Thinking together goes differently with someone who is not involved in day-to-day care.\u0026rdquo;\u003c/em\u003e (nurse, discussing ethics consultation facilitators)\u003c/p\u003e \u003cp\u003eNotably, one family member highlighted the ethics committee as a key factor in resolving a particularly complex end-of-life care trajectory for their sister, which we explore in greater detail below.\u003c/p\u003e \u003cp\u003eDuring the interviews with caregivers and management staff, it became clear that various initiatives are underway in the facilities included in this study to further integrate ethics into care. For example, several institutions have appointed reference persons or ethics focal points at the departmental level. These individuals, either on a structural or ad hoc basis, facilitate moral case deliberation or peer consultation sessions with caregivers on the ward. They have also undergone additional training in care ethics.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;For the staff, I also often lead the TVO. This means \u0026lsquo;time for ourselves\u0026rsquo;. (\u0026hellip;) it is truly about what's on your mind, what are you struggling with? What were you impressed by or what do you think is positive? That can truly be anything. For example, if a patient hadn't said something to anyone that came in hard. That could be something like that. In addition, how do the team members react to it? Or you could say that you feel that you are always being pushed back, for example. Or a patient who does not truly do anything anymore, but then had a moment with you. That can be truly broad. (\u0026hellip;) We do this for one hour every week\u003c/em\u003e\u0026rdquo; (therapist, discussing ethics consultation facilitators)\u003c/p\u003e \u003cp\u003eOne facility also implemented an initiative where a group of care professionals voluntarily offered to support colleagues following challenging or traumatic events, such as incidents of aggression or suicide.\u003c/p\u003e \u003cp\u003eIn several facilities, working groups are also established to address specific complex themes, such as end-of-life care, advance care planning, or ethics. The latter group consists of staff members within the facility who provide support for particular cases or implement training initiatives related to ethical topics, including advisory texts. These working groups aim to bridge the gap between the workplace and the official ethics committee, thereby lowering the threshold for accessing ethics support.\u003c/p\u003e \u003cp\u003e A notable initiative in one of the facilities was an \"ethics pub\", where all staff members, as well as family and loved ones, are invited to engage in informal discussions about ethical issues in care or at work at regular intervals. In this way, the ethical expert, who leads the initiative, can stay attuned to the topics that are relevant in care settings.\u003c/p\u003e\n\u003ch3\u003eEthical themes in care for persons experiencing SPMI\u003c/h3\u003e\n\u003cp\u003eThe most frequently mentioned ethical theme in this study was \u003cb\u003eeuthanasia\u003c/b\u003e. Although some care users and family members also referred to this issue, it is primarily the caregivers and managers who raise the topic.\u003c/p\u003e \u003cp\u003eThe topic of euthanasia can raise ethical dilemmas in various ways, as shown in our study. Some participants indicated that it sometimes concerns whether the request is well considered but also the acceptability of it in general, the impact on the team, or the location where it should be carried out.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;With this woman, I truly felt like; she's so young, she still has so much potential. However, I also saw her intense suffering\u003c/em\u003e.\u0026rdquo; (counsellor, discussing euthanasia)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;We once had a young woman of 30 who said she did not want to live anymore and wanted euthanasia. At first, we tought we had to buy time, and maybe her questions would disappear. However, the issue kept coming back, so we started exploring. So basically we are open to that.\u0026rdquo;\u003c/em\u003e (therapist, discussing euthanasia)\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;I find that a difficult question. I think: if it happens here, you link the two with each other: euthanasia and the ward. Then, you always have that image: this person has been put to sleep here. However, it may be more comfortable for the person themselves. To die in a place that they're used to.\u0026rdquo;\u003c/em\u003e (nurse, discussing euthanasia)\u003c/p\u003e \u003cp\u003eIn particular, doctors indicate that they find the topic difficult, whereas others are more open to it and sometimes find the request for euthanasia in persons experiencing SPMI to be understandable.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eI\u0026rsquo;m truly struggling with the topic of euthanasia. According to me, the patient is looking for someone who does not give up on him or her, who continues to feel that his or her life is worth living\u0026rdquo; (\u003c/em\u003epsychiatrist, discussing euthanasia).\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eSometimes I can truly understand why someone chooses to get out after so many years. (\u0026hellip;) Maybe as a doctor, I should take my role in that as well.\u0026rdquo;\u003c/em\u003e (psychiatrist, discussing euthanasia)\u003c/p\u003e \u003cp\u003eGenerally, the values of autonomy versus protection of (vulnerable) life and good care are key to the discussion.\u003c/p\u003e \u003cp\u003eThis can also be extended to other situations where end-of-life care was discussed during the interviews, for example, when a person experiencing SPMI has a life-threatening condition but refuses care.\u003c/p\u003e \u003cp\u003e \u003cem\u003eWe had a patient who refused the DNR code because he did not see from his issues how serious his situation was. We then asked staff ethics experts to consult with the team, the family and the legal guardian\u003c/em\u003e (psychologist, discussing end-of-life decisions).\u003c/p\u003e \u003cp\u003e \u003cb\u003eRefusal of care\u003c/b\u003e is also highlighted as an important ethical dilemma, even outside the context of end-of-life care.\u003c/p\u003e \u003cp\u003e \u003cem\u003e\u0026ldquo;Therefore, these are also ethical issues with these kinds of patients whom we are confronted with. Yes, even now, someone died just last Friday I think, someone who did not open the door anymore. A man with a chronic alcohol problem, personality disorder, or depression I think the diagnosis must have been. Who also had cancer on top of that. However, who, despite repeatedly texting, ringing the doorbell, says: I do not want counseling from the mobile team. you keep knocking on the door, you go by again, you go knocking on the window. However, he told us to leave him alone. Now, it turns out that deceased. We feel that we went very far in that case, that it was truly interfering, intensive care. However, after a number of months it was decided: there are still so many people on the waiting list who are waiting, and this person can decide for himself. His death, was it an accidental fall from drunkness, was it because of his cancer or did he commit suicide? I do not know. We regularly have these cases, almost every month. Yes, maybe there is an extra person who can think about this independently of the team... That would certainly be useful in care units working with persons experiencing SPMI\u003c/em\u003e\u0026rdquo; (psychiatrist, discussing care refusal)\u003c/p\u003e \u003cp\u003eAnother theme that was raised is the fair \u003cb\u003eallocation of resources\u003c/b\u003e to a ward with a palliative patient:\u003c/p\u003e \u003cp\u003e \u003cem\u003eA lot of time goes into this. In addition, the time goes to one person. It is not going to the 43 others who are hospitalized in the ward. We then tried to counter that by involving patients as well. In addition, that in itself was a great story. However, on the other hand, we make the following reflection: Can or can\u0026rsquo;t you do this from an ethical point of view? Burden patients with this, following that process together? Additionally, you could say: let the patients choose for themselves. However, the whole ward becomes involved anyway. Even people who do not choose for it.\u0026rdquo;\u003c/em\u003e (ward coordinator, discussing recource allocation)\u003c/p\u003e \u003cp\u003eA case study of a brother whose sister was very severely debilitated as a result of juvenile dementia is also noteworthy. Eventually, with the intervention of the ethics committee, \u003cb\u003epalliative sedation\u003c/b\u003e was opted for because the living conditions for this person were not diagnosed as a result of the disease, and care became virtually impossible. Thus, the person was constantly in isolation and cried incessantly, with great impact on the caregivers and the other caregivers. The brother indicated that the dying process was exceptionally long, and the body was already beginning to partially die, while the woman was still alive. This had a particularly traumatic effect on all those involved\u0026hellip;\u003c/p\u003e \u003cp\u003eAnother theme that emerged from various interviews was the use of the \u003cb\u003eOyster Care\u003c/b\u003e model and the ethical questions it raises, particularly regarding the handling of rules; the balance between distance and closeness between the care user and caregiver; and whether the care is sufficiently tailored to the needs and wishes of the care user. More specifically, some participants questioned the abandonment of certain principles of recovery-oriented care.\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;For example, how does our approach now relate to hospital rules? Or the legislation? A lot of what we want to do in the department is not in line with what they do in other departments or with common quality standards.\u0026rdquo;\u003c/em\u003e (psychologist, discussing Oyster Care)\u003c/p\u003e \u003cp\u003e\u003cem\u003eSometimes I find that I am also letting go beyond my own boundaries. In addition, that is not okay. However, we have such a special bond with our people, and I notice that many colleagues do.\u0026rdquo;\u003c/em\u003e (nurse, discussing Oyster Care)\u003c/p\u003e \u003cp\u003e\u003cem\u003e \u0026ldquo;Oyster Care to me implies too little encapsulation or freezing of the situation. However, maybe it is just me misunderstanding the word. However, of course, this now goes against the way I have worked with so many patients already experiencing SPMI. For so many patients, I have often still seen slightly more quality of life or, at some point, an opportunity to do something else that gave a tad more autonomy. However, Oyster Care is much more focused on cocooning. If that is an open cocoon, that is ok with me. If that is a cocoon that people can go to and back out of, that is ok with me.\u0026rdquo;\u003c/em\u003e (psychiatrist, discussing Oyster Care)\u003c/p\u003e \u003cp\u003eRemarkably, these findings from caregivers partially align with the comments made by persons experiencing SPMI themselves, who sometimes indicated in conversations that the care they received was insufficiently challenging or that they had experienced aggressive behavior from other care users.\u003c/p\u003e \u003cp\u003e\u003cem\u003e\u0026ldquo;I actually have very little to do here. Sometimes, the caregivers especially like to be with each other. I cannot truly have conversations with the other residents\u0026rdquo;\u003c/em\u003e (care user, discussing Oyster Care)\u003c/p\u003e \u003cp\u003eThe theme was also raised that care for persons experiencing SPMI, as a vulnerable group, is an ethical responsibility. According to some participants, care for these vulnerable groups should not be subject to 'market thinking'. By this, it was meant that the care for vulnerable persons should not depend on a cost-benefit analysis. Rather, it is the moral duty of society to care for these persons, regardless of the 'costs'.\u003c/p\u003e \u003cp\u003eThis last point aligns well with a theme that frequently emerged among family members, for whom the search for appropriate care was often a difficult process. Many expressed a need for relief from their responsibilities toward their family members experiencing SPMI, for whom they could not or did not want to be solely responsible.\u003c/p\u003e \u003cp\u003e\u0026ldquo;\u003cem\u003eIt was truly difficult to find appropriate care for my son, even for someone who knows the healthcare system very well. It has taken years. (...) I no longer wanted to bear this responsibility alone. What also truly affected me was how many people, including family members, did not understand the situation and just stopped contacting me\u003c/em\u003e.\u0026rdquo; (mother, discussing Oyster Care)\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003e \u003cb\u003eWith regard to the ethics support system\u003c/b\u003e \u003c/p\u003e \u003cp\u003eEthics and ethics support are fundamental components of care, both at the level of the organization, team and individual. From the very conception of care, ethical and deontological considerations are inherent to the profession. This includes the Hippocratic Oath, which remains central to many physicians to this day, the Florence Nightingale Pledge for nurses, and the four basic principles of biomedical ethics formulated by Beauchamp and Childress(\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e Our research revealed that in all the facilities where we interviewed participants, some kind of ethics framework was in place. All facilities were connected to a local ethics committee, and there was always a central expert responsible for ethics support and policy regarding ethical issues. This was often concretized through ethical advisory documents.\u003c/p\u003e \u003cp\u003eDespite this structural presence, our research indicates that these advisory bodies or individuals are not always well known or utilized by staff or other actors in care. While in some cases, existing channels are consulted and many facilities also focus on more accessible forms of ethics support, such as reference persons or local working groups, significant barriers remain in regard to utilizing these resources, even in very difficult and complex situations. This finding aligns with other scientific research regarding ethics consultation (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e). In many cases, (unstructured) team discussions appear to be the primary resource that staff fall back on in challenging situations, although some caregivers, including physicians, reported feeling 'alone' with these issues. Therefore, it seems advisable for organizations to continue to focus on lowering the barriers to ethical dialog by, for instance, implementing ethics reference persons in teams, building ethics expertise within teams, and facilitating informal opportunities for stakeholders to discuss sensitive topics. Local referents or working groups can play a crucial bridging or liaison role between care practices and the ethics committee, mutually enhancing each other's functioning. Additionally, promoting existing initiatives and their functioning can be important.\u003c/p\u003e \u003cp\u003e \u003cb\u003eWith regard to the ethical dilemmas and themes in care for persons experiencing SPMI\u003c/b\u003e \u003c/p\u003e \u003cp\u003eGiven that this study explored both end-of-life care and ethical issues, it is not surprising that many of the topics raised by participants as important ethical issues in the care of persons experiencing SPMI centered around end-of-life care. Euthanasia clearly emerged as the most prominent topic. The fact that this issue also receives significant attention in the media and public debate may play a role here. When a situation arises in care where a care user requests euthanasia, the results of this study indicate that it has a significant effect on caregivers. This often leads to peer consultation or ethical deliberation as part of a broader clarification process. Notably, the participants held differing attitudes toward euthanasia. In many cases, teams involve other specific organizations, such as LEIF, Vonkel and Reakiro, to further help clarify these cases\u003csup\u003e1\u003c/sup\u003e.\u003c/p\u003e \u003cp\u003eFrom the data, we can infer that euthanasia, which is consistent with findings from other studies, is a topic that causes some division among care providers and has a significant impact(\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e, \u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). A good understanding of the legislation, fostering communication among all stakeholders, and providing ethics support to help balance autonomy and the duty of care are recommended.\u003c/p\u003e \u003cp\u003eIn addition to euthanasia, care users in palliative situations also present ethical dilemmas. Several times, teams in psychiatric facilities are not always well equipped to support a palliative care user optimally, a finding that resonates with other research (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). Questions were raised about whether it is fair in terms of allocating resources to other care users and to what extent they can be involved in the process.\u003c/p\u003e \u003cp\u003eElsewhere, we discussed the importance of good collaboration with mobile palliative care teams, the development of sufficient expertise in somatic and palliative care within psychiatric facilities, and the possibility of temporarily adding extra personnel support to wards with a palliative case. A general practitioner or another physician with expertise in somatic care can play an important bridging role in this process (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eFollowing this theme, there were situations where doubts were expressed about initiating palliative care on the one hand or administering and progressing to palliative sedation on the other hand for one of the interviewees' family members. These situations also suggest that there may sometimes be a lack of knowledge about palliative care within mental health care, but they also highlight that ethics plays a crucial role in the decision-making process. The fact that some persons experiencing SPMI may have difficulty expressing themselves or possess reduced decision-making capacity adds complexity to end-of-life decisions, which inherently carry ethical sensitivity (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAlthough a significant portion of the topics raised related to end-of-life care, other ethical issues in the care of persons experiencing SPMI were also mentioned. Several participants reported the dilemma and helplessness they experienced when a person neglected themselves or refused certain (basic) care. This observation aligns with research findings in other countries as well (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e).\u003c/p\u003e \u003cp\u003e Furthermore, four key ethical subthemes were mentioned in relation to the Oyster Care model, which can primarily be understood as a form of long-term care for persons experiencing SPMI, on the basis of several principles derived from palliative care, such as an emphasis on quality of life and creativity. These findings further nuance previous ethical reflections regarding the model (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe first subtheme relates to a societal level, where care for the most vulnerable, such as persons experiencing SPMI, is viewed as an ethical duty by some participants. For some of them, care should not be entirely framed within a \"market mentality,\" which is seen as a significant threat by some interviewees.\u003c/p\u003e \u003cp\u003eA second subtheme concerns the tension between regulations and creativity: to what extent can and should rules be bent or broken in the interest of providing tailored and creative care, following the principles of a palliative care approach?\u003c/p\u003e \u003cp\u003eA third subtheme can be described as the balance between distance and closeness between the caregiver and the care user. In our study, care for persons experiencing SPMI was often described as long-term care. The relationships between care users and caregivers are often characterized as very strong. However, this also creates the potential for boundaries to be crossed, for example, in the tolerance of disruptive behavior. Disruptive behavior between care users was also raised as an ethical issue by persons experiencing SPMI.\u003c/p\u003e \u003cp\u003eFinally, there was repeated mention of whether the care remained sufficiently ambitious and adapted to the needs and wishes of the care user. This is also related to the autonomy of the care user. Some care users themselves indicated that care was not fully adapted to their needs, and from many stories shared by family members, it was evident that the search for appropriate care was long and difficult. There was a clear desire among family members to be at least partially relieved of their (perceived) responsibility.\u003c/p\u003e \u003cp\u003eFrom these last elements, we can conclude that there is a need for further reflection on the Oyster Care model, its relationship with the general principles of recovery-oriented care, and the applicable regulations. At the local level, more attention could be given to ethics support, particularly in the development and application of (departmental) rules, client participation, treatment, and the management of disruptive behavior.\u003c/p\u003e\n\u003ch3\u003eStrengths and limitations of the study\u003c/h3\u003e\n\u003cp\u003eOne of the strengths of this study is the inclusion of a broad range of stakeholders, including care users, their relatives, caregivers, managers, and experts in palliative and psychiatric care. This comprehensive approach allows for a nuanced understanding of the experiences, needs, and ethical issues associated with both care in general and end-of-life care for persons experiencing SPMI. By capturing the perspectives of all relevant actors, the study provides a well-rounded picture of the current state of care in Flanders and offers valuable insights for improving care at multiple levels\u0026mdash;from individual care interactions to institutional policies.\u003c/p\u003e \u003cp\u003eAnother strength lies in the study\u0026rsquo;s focus on a highly vulnerable and often overlooked population. End-of-life care and ethical issues regarding persons experiencing SPMI remain underexplored areas in the philosophical, psychiatric and palliative care literature. This study contributes significantly to filling that gap by highlighting the unique challenges and opportunities involved in providing compassionate, ethical care to persons experiencing SPMI at the end of their lives. The ethical dilemmas surrounding euthanasia, advance care planning, Oyster Care and palliative care in psychiatric settings are especially valuable for shaping future research and policy development.\u003c/p\u003e \u003cp\u003eHowever, the study is not without limitations. First, it is geographically limited to Flanders, Belgium, meaning that its findings may not be generalizable to other regions or countries with different legal, cultural, or healthcare frameworks.Within this region itself however, a good distribution was achieved. The unique legal landscape in Belgium, particularly with respect to euthanasia, may not reflect the experiences of other countries where assisted dying is not legally permitted.\u003c/p\u003e \u003cp\u003eAnother limitation is the relatively small sample size for certain subgroups, particularly care users and their relatives. While the study reached thematic saturation, the voices of care users may be underrepresented, especially given the reluctance of many care users to discuss end-of-life issues in depth. Notably, despite participating voluntarily and being informed about the topics to be discussed, care users often prefer to touch only briefly on the subject of end-of-life. During the interviews, they tended to focus more on daily care, hobbies, and social relationships. In contrast to caregivers and managers, care users were not explicitly asked about ethical issues but were instead inquired about matters they considered important or found challenging. This could lead to bias in the findings, where the perspectives of caregivers and experts may carry more weight. Future research should aim to engage a larger and more diverse group of care users to ensure that their voices are more prominently included. In general, we also observed that the results for caregivers and managers/experts were closely aligned, as the latter are often deeply involved in care and frequently have experience working as caregivers themselves; some caregivers also have (limited) management responsibilities.\u003c/p\u003e \u003cp\u003e Additionally, the study relied on semistructured interviews, which, while valuable for exploring complex issues, may limit the comparability of responses across participants. The participants may have interpreted the questions differently, leading to variations in the depth and type of responses provided. A more structured approach to data collection, or the inclusion of additional qualitative methods such as focus groups, could have increased the richness of the data.\u003c/p\u003e \u003cp\u003eFinally, the study focused primarily on residential care settings, meaning that the experiences of persons experiencing SPMI in nonresidential or community-based settings may not be fully captured. This limits the study\u0026rsquo;s ability to provide a comprehensive overview of end-of-life care for all persons experiencing SPMI, regardless of the care setting. Future studies should aim to include a broader range of care environments to ensure that the findings are applicable to all persons experiencing SPMI, regardless of their living situation.\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eConclusions and recommendations\u003c/h2\u003e \u003cp\u003eThis study highlights the integral role of ethics and ethics support in the care of persons experiencing severe and persistent mental illness, particularly in relation to end-of-life care. Our findings indicate that while an ethics framework is present in all facilities, challenges remain in ensuring its widespread use. The barriers to accessing ethical support, despite the existence of advisory bodies, underscore the need for organizations to invest in lowering these barriers. Practical recommendations include enhancing the visibility of ethics support channels, implementing reference persons for ethics, fostering team-based ethics expertise, and providing informal spaces for dialogue on sensitive topics.\u003c/p\u003e \u003cp\u003eEthical dilemmas, particularly those surrounding euthanasia, palliative care, and self-neglect, were central to the discussions. While euthanasia remains a key ethical issue, further attention should be given to the unique complexities in mental health care, such as reduced decision-making capacity in persons experiencing SPMI. The study also highlights the need for better integration of palliative care in psychiatric settings, particularly through collaboration with external palliative care teams and the development of somatic care expertise within psychiatric facilities.\u003c/p\u003e \u003cp\u003eAdditionally, the research identifies key ethical themes in long-term care models such as Oyster Care, including the tension between market-driven care and societal responsibility and the balance between regulatory constraints and the need for creative care solutions. To address these concerns, further reflection is needed on how the principles of recovery-oriented care can be better integrated with the existing regulatory frameworks.\u003c/p\u003e \u003cp\u003eFinally, our findings suggest that there is a need for more comprehensive training and resources related to palliative care within mental health settings and for organizations to reflect on their care models to better support the autonomy and quality of life of persons experiencing SPMI, especially at the end of life. Further research should explore these themes in diverse care settings and with a broader range of stakeholders, e.g., exploring care users\u0026rsquo; moral intuitions regarding specific topics or including more experts-by-experience, to ensure inclusive, compassionate, and ethical care for persons experiencing SPMI.\u003c/p\u003e \u003c/div\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eSPMI: Severe and Persistent Mental Illness\u003c/p\u003e\n\u003cp\u003eLEIF: LevensEinde InformatieForum\u003cstrong\u003e\u003cbr\u003e\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003e● Ethics approval and consent to participate\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013). The study was approved by the central ethics committee KU Leuven Belgium (unique number: B3222021000688) and by the local ethics committees associated with the facilities where the study took place. Written informed consent was obtained from all individual participants. For privacy reasons, pseudonymization was used when the quotes included in this document were displayed.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e● Consent for publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll participants in this study provided written consent for the pseudonymized publication of the data.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e● Availability of data and materials\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe data that support the findings of this study are available from KU Leuven, but restrictions apply to the availability of these data, which were used under licence for the current study and so are not publicly available. The data are, however, available from the corresponding author upon reasonable request and with the permission of the authorized ethics committee.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e● Competing Interests\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot Applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e● Funding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis publication came about with the support of the KU Leuven Special Research Fund (BOF) (grant number: ebc7b31d-c18d-4d94-9639-cfdb561abcdf).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e● Authors\u0026apos; contributions\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e(I) \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; Conception and design: Lo\u0026iuml;c Moureau\u003c/p\u003e\n\u003cp\u003e(II)\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Administrative support: Lo\u0026iuml;c Moureau\u003c/p\u003e\n\u003cp\u003e(III)\u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;Provision of study materials or patients: Lo\u0026iuml;c Moureau\u003c/p\u003e\n\u003cp\u003e(IV)\u0026nbsp; \u0026nbsp; \u0026nbsp;\u0026nbsp;Collection and assembly of data: Lo\u0026iuml;c Moureau, Monica Verhofstadt\u003c/p\u003e\n\u003cp\u003e(V)\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;Data analysis and interpretation: Lo\u0026iuml;c Moureau, Monica Verhofstadt\u003c/p\u003e\n\u003cp\u003e(VI) \u0026nbsp; \u0026nbsp; \u0026nbsp;Manuscript writing: All authors.\u003c/p\u003e\n\u003cp\u003e(VII) \u0026nbsp; \u0026nbsp; Final approval of manuscript: All authors.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;● Acknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe extend our sincere thanks to all the participants in the research, as well as to the organizations that commit and allocate staff to conduct the interviews.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eClinical trial number: not applicable.\u003c/strong\u003e\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eZumstein N, Riese F. 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How to engage people experiencing severe and persistent mental illness in qualitative research: a descriptive and reflexive analysis. Int J Qualitative Stud Health Well-being. 2024;19(1):2408817.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMoureau L, Verhofstadt M, Hoe CV, Vandenberghe J, Van Audenhove C, Li\u0026eacute;geois A. Discussing end-of-life care for persons experiencing severe and persistent mental illness: a qualitative study among stakeholders in Flanders. Annals Palliat Med. 2025;14:114\u0026ndash;27.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBeauchamp TL, Childress JF. Principles of Biomedical Ethics. 8th ed. New York: Oxford University Press; 2019.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDe Panfilis L, Merlo DF, Satolli R, Perin M, Ghirotto L, Costantini M, et al. Clinical ethics consultation among Italian ethics committee: A mixed method study. PLoS ONE. 2019;14(12):e0226710\u0026ndash;0226710.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHaltaufderheide J, Gather J, Juckel G, Schildmann J, Vollmann J. Types of Ethical Problems and Expertise in Clinical Ethics Consultation in Psychiatry \u0026ndash; Insights From a Qualitative Empirical Ethics Study. Front Psychiatry. 2021;12:558795\u0026ndash;558795.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eden Boer K, de Veer AJE, Schoonmade LJ, Verhaegh KJ, van Meijel B, Francke AL. A systematic review of palliative care tools and interventions for people with severe mental illness. BMC Psychiatry. 2019;19(1):106.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMoureau L, Tansens A, Desimpele L, Verde\u0026eacute; T, Delepeire J. Omgaan met zorgweigering bij een persoon met een ernstige psychiatrische aandoening en een levensbedreigende ziekte: een casusbespreking. Tijdschrift voor Geneeskunde en gezondheidszorg. 2024;80:156\u0026ndash;66.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eButler H, O\u0026rsquo;Brien AJ. Access to specialist palliative care services by people with severe and persistent mental illness: A retrospective cohort study. Int J Ment Health Nurs. 2018;27(2):737\u0026ndash;46.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eAppendix. 1: Demographics.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCaregivers. managers and experts (n\u0026thinsp;=\u0026thinsp;44).\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Footnotes","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003e LEIF (End-of life information forum) is, according to their own website, an open initiative of people and associations striving for a dignified end of life for all, with respect for the patient's will being paramount. LEIF also trains healthcare professionals, including physicians, to engage around end-of-life questions and decisions (including euthanasia). Vonkel presents itself as a drop-in house and meeting place for those dealing with death, dying, and grief. Reakiro is, according to their website, a place you can go as a person with a desire for euthanasia because of unbearable mental suffering due to a psychiatric condition. All three organizations operate in the Flemish region, Belgium.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-medical-ethics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"meth","sideBox":"Learn more about [BMC Medical Ethics](http://bmcmedethics.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/meth/default.aspx","title":"BMC Medical Ethics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Severe and persistent mental illness (SPMI), ethics, end-of-life care","lastPublishedDoi":"10.21203/rs.3.rs-5699095/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5699095/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003cbr\u003e\nPersons experiencing severe and persistent mental illness (SPMI) represent a small but vulnerable group in mental health care and society. Research on this population is limited, despite significant ethical challenges in their care. These challenges include the severity of their illness, limited social networks, communication difficulties, impaired decision-making capacities, and, at times, disruptive behavior.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003ePurpose\u003c/strong\u003e\u003cbr\u003e\nThis study aims to explore the ethical themes that emerge in the care of persons experiencing SPMI, both in general and at the end of life. Specifically, we examine which issues arise, how care teams address ethical dilemmas, who is involved in decision-making, and what ethical frameworks or practices are utilized.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003cbr\u003e\nWe conducted 73 in-depth qualitative interviews with care users, family members, caregivers, care managers, and experts from the Flemish region of Belgium. The data were analyzed through content analysis to identify recurring themes and reflect on ethical practices.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003cbr\u003e\n The findings reveal that while many facilities have ethical guidelines or advisory structures such as ethics committees, these are often not well known or not perceived as easily accessible to frontline staff. Ethical dilemmas are predominantly addressed at the team level, with some organizations employing reference personethics in the unit, \"ethics pubs\", or peer support mechanisms for challenging situations. The most frequently mentioned ethical issue was euthanasia, whereasothers included neglect in home settings, prolonged delays in initiating palliative care, and maintaining autonomy for care users. Resource allocation, both at the organizational and societal levels, was also identified as an ethical concern. Caregivers described tensions between creative, individualized care and institutional policies, whereasfamilies emphasized the shared responsibility in finding appropriate care.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e\u003cbr\u003e\nEthical care for persons experiencing SPMI demands attention to autonomy, collaboration, and resource distribution. Greater accessibility to ethical support systems and tailored approaches are needed to balance recovery-oriented care with a palliative care approach, ensuring dignity and respect for this vulnerable group.\u003c/p\u003e","manuscriptTitle":"Mapping ethical issues encompassing end-of-life care for persons experiencing severe and persistent mental illness: a qualitative study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-04-23 10:56:37","doi":"10.21203/rs.3.rs-5699095/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-05-19T09:59:12+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-05-03T05:15:58+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-04-28T06:48:23+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"128775130922250753775986056831562243119","date":"2025-04-27T16:30:12+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-04-24T17:49:52+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"288860630214297299175535619173099522213","date":"2025-04-24T17:33:36+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"153830240543324781200746034358935198175","date":"2025-04-24T13:21:38+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-04-22T12:40:44+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-04-22T07:50:48+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-04-08T11:19:25+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Medical Ethics","date":"2025-03-31T17:11:15+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-medical-ethics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"meth","sideBox":"Learn more about [BMC Medical Ethics](http://bmcmedethics.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/meth/default.aspx","title":"BMC Medical Ethics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"52865670-ff7e-436a-aa83-601c157a09f9","owner":[],"postedDate":"April 23rd, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-06-09T16:01:24+00:00","versionOfRecord":{"articleIdentity":"rs-5699095","link":"https://doi.org/10.1186/s12910-025-01234-0","journal":{"identity":"bmc-medical-ethics","isVorOnly":false,"title":"BMC Medical Ethics"},"publishedOn":"2025-06-02 15:57:24","publishedOnDateReadable":"June 2nd, 2025"},"versionCreatedAt":"2025-04-23 10:56:37","video":"","vorDoi":"10.1186/s12910-025-01234-0","vorDoiUrl":"https://doi.org/10.1186/s12910-025-01234-0","workflowStages":[]},"version":"v1","identity":"rs-5699095","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5699095","identity":"rs-5699095","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}