Proxy, nurse, and physician needs regarding advance care planning by proxy for aged care residents lacking decision making capacity: an exploratory study

Proxy, nurse, and physician needs regarding advance care planning by proxy for aged care residents lacking decision making capacity: an exploratory 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 Proxy, nurse, and physician needs regarding advance care planning by proxy for aged care residents lacking decision making capacity: an exploratory study Laura Jones, Rachel Rutz Voumard, Florent Rhyner, Fiorella Figari Aguilar, and 2 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4943848/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 26 Sep, 2025 Read the published version in BMC Geriatrics → Version 1 posted 4 You are reading this latest preprint version Abstract Background Worldwide, populations are ageing. Together with improved home care and limited places in residential aged care facilities (RACF), this leads to people being admitted to RACF at more advanced ages and in increasingly fragile states of health, often with cognitive impairment. Advance directive completion rates are low, so many people are admitted to RACFs without having formally stated their wishes for care. Guidelines for advance care planning (ACP) in nursing homes exist, however they focus primarily on residents who maintain decision making capacity (DMC). Models are needed for people lacking DMC. We aimed to investigate the essential elements needed for ACP by proxy models (ACPbp) for RACF contexts. Methods We conducted a qualitative exploratory study into health care proxy, RACF nurse and physician needs for ACPbp models. We conducted semi-structured interviews with 19 health care proxies of 16 RACF residents lacking DMC, 3 focus groups with 23 RACF nurses and 3 focus groups with 13 physicians working in 9 RACFs. Results Health care proxies expressed the need for structured, accompanied communication about residents’ health state and potential future situations requiring decision-making. Nurses echoed this need, adding that they need specific training along with standardised processes and discussion guides for conducting ACPbp discussions, and standardised documentation. Physicians also mentioned the need for standardised processes and documentation to ensure efficient transfers between facilities and comprehensive documents in case of medical emergency. Such documents should be as short as possible, but also provide space to describe the resident’s values, life history and presumed will. Specifically trained personnel and time allocated specifically to ACPbp are key for implementation. Conclusions This study underscores the need for ACPbp in RACFs, gives broad guidelines and outlines the ethical frameworks for such a concept, by identifying the specific aspects necessary for the development of ACPbp models in this context. Trial Registration Not applicable Advance Care Planning Health Care Proxy Decision Making Capacity Qualitative Exploratory Dementia Background As global population ageing continues, more and more people are living with neurocognitive decline due to diseases such as dementia, which is a leading cause of dependence and disability ( 1 ). Over time, people being admitted to residential aged care facilities (RACF) are increasingly older, with more chronic multimorbidity and complicated treatments, and are more likely to live with extensive physical and cognitive impairments ( 2 ). However, although increasing numbers of RACF residents have dementia, and more assessments of comfort and care are conducted, their comfort while dying from dementia has not improved in the last 15 years ( 3 ), thus highlighting the need to improve care planning and end-of-life (EoL) care. Indeed, while RACF residents who maintain decision-making capacity (DMC) report that they trust their health care proxies and families making decisions on their behalf, the latter report feeling insecure and unsure about this role and consider it a burden ( 4 ). Advance Care Planning (ACP) is defined as a process in which people who possess decision-making capacity can reflect upon their values and wishes, document their anticipatory decisions for future medical care and nominate a health care proxy ( 5 ). ACP has been shown to increase patient and health care proxy satisfaction with care and communication and reduce both health care proxy and clinician distress ( 6 ) and decisional conflict, and improve concordance between patients and their health care proxies regarding treatment preferences ( 7 ). In addition, ACP participation promotes knowledge or, and compliance with EoL wishes in elderly people ( 8 ). However, in Switzerland, ACP rates are generally low ( 9 ), and older adults have substantial gaps in their knowledge about EoL care options and planning, a trend which increases with age ( 10 ). In addition, people who have higher EoL literacy are more likely to participate in ACP, and discuss EoL preferences ( 11 ). On the flip side, less than a third of older Swiss adults accurately assess likelihood of different places of death ( 12 ). Thus, the large majority of older adults are admitted to RACFs without having formally stipulated their treatment preferences, and many of them also lack DMC to make such anticipatory decisions. Lack of advance directives leads to increased hospitalisation rates, and decisions to forego hospitalisations of people with advanced dementia are often left until death is imminent ( 13 ). This population is thus at risk of receiving treatment which is discordant with their wishes. Indeed, even when 73% of RACF residents had orders not to be hospitalized, over 50% were in fact hospitalized, primarily due to orders being unclear, for symptom control and for further investigations ( 14 ), thus highlighting the necessity for planning processes specifically adapted to the RACF context, clear communication and documentation of the presumed wishes. Improvement of EoL care for people with dementia is an ethical imperative ( 15 ). Person-centred care and ACP and have been identified by a Delphi panel as a priority for the care of people with dementia ( 16 ), and the Delphi panel of the European Association for Palliative Care subgroup on ACP and dementia has produced a definition ‘a communication process adapted to the person's capacity, which includes, and is continued with, family if available’ ( 17 ). In addition, there is an increasing body of scientific literature providing recommendations for ACP in this context ( 18 ) ( 19 ) ( 20 ) and highlighting the necessary preconditions ( 21 ). Previous research shows that in RACF residents with dementia who maintain DMC, less than one quarter had completed an ACP, and concordance of reports of completing an ACP and an ACP being recorded in the resident’s medical file was low, thus emphasizing the need for ACP models promoting ‘discussion, documentation and accessible storage of ACP documents’ for this population ( 22 ). However, even when people with dementia in nursing homes are the subject of enquiry, such research often focuses on people who maintain decision-making capacity for medical treatment. The European Working Group of people with dementia have noted the need to extend the ACP definition to include people with diminished DMC and acknowledge the role of their social connections in ACP participation ( 23 ). An international Delphi panel has recently adapted initial ACP definitions, to include people with dementia, thus stating that ACP should be conducted with people with dementia and their families and health care teams and be an ongoing process of communication that continues with the family once the person with dementia is no longer able to participate ( 17 ). Advance care planning by proxy (ACPbp), for persons who have lost decision-making capacity, is driven by the health care proxy, who takes legal responsibility for decisions ( 24 ) and ‘represents the patient’s interests in specifying treatment preferences on behalf of a decisionally incapacitated patient’ (pg 761, 25). Volicer et al., (2002) have identified important aspects of ACPbp for people in aged care facilities. These recommendations include a meeting between the health care proxy and members of the care team as soon as possible after nursing home admission, consideration of the patient’s values, preferences and previously expressed goals, consultation of advance directives if they exist, documentation of plans by the treating physician and storing the plans in a place that is accessible, ongoing discussions about the patient’s needs and regular reviews of the plans. Despite such recommendations, many difficulties have been noted in initiating ACP for people with dementia, notably due to the incertitude about finding an appropriate time in the disease trajectory ( 26 ). Our previous research indicated that current care planning is highly variable and lacks standardised processes, that documents are developed by individual institutions depending on their needs, but that these may be difficult to interpret when needed ( 27 ). Furthermore, an analysis of ACP documents produced by proxy in German nursing homes reported widely variable contents and justifications for the decisions in such documents ( 28 ). Specific models of ACPbp are thus needed. The objective of this research is to identify what is needed from an ACPbp intervention that is specifically designed to be used with health care proxies of RACF residents who no longer have DMC. Method Design This was a qualitative explorative study to identify the needs of health care proxies, residential aged care nurses and physicians for an ACPbp model designed specifically for use on behalf of RACF residents who no longer have decision-making capacity. Participants Potential RACFs were recruited through an e-mail sent to directors of care through the federation that connects them, and interested directors contacted the research team directly. Nurses from these RACFs were invited to participate in focus groups that were held during their work hours at the RACFs. Potential health care proxies of residents who no longer had medical decision-making capacity were identified by the head nurses of five RACFs (three of which participated in nurse focus groups). These health care proxies were sent an e-mail and contacted by telephone to ask for their permission to be contacted by a researcher who explained the study and sought their informed consent. Health care proxies were not paid to participate and were thanked with chocolates or book vouchers of modest value. Physicians working in RACFs were recruited through an e-mail sent to all members of the association which connects physicians working in RACFs, and interested physicians contacted the researchers directly. Participating physicians were reimbursed for their time at their hourly consultation rate. Data collection Face-to-face focus groups were conducted with RACF nurses in three RACFs. Moreover, focus groups were conducted with three groups of physicians in a tertiary hospital. The focus groups were centred around questions about the current planning practices for residents who no longer have medical DMC (published elsewhere ( 27 ), difficulties with the current practices, needs for the future, and the conditions that are needed to implement ACP in this context. Focus groups were conducted between July 2018 and September 2019. Face-to-face semi-structured interviews with health care proxies were conducted at a place of their choosing; at the RACF, in their homes or in the researchers’ offices. The interviewer asked questions related to the proxy’s experience in fulfilling this role on behalf of their loved one, the planning practices in the RACF, and their needs for the future. All focus groups and interviews were conducted in French, audio-recorded and transcribed by a professional transcriber. Two physicians (ERT, RJ) conducted the focus groups, one of whom was known to some physician participants, the other of whom was not known to the focus group participants. One researching psychologist (LJ), experienced in conducting interviews and not known to any of the participants, conducted the semi-structured interviews. Data analysis Three researchers, a physician in training (FR), a researching advanced practice nurse (FFA), and a researching psychologist- (LJ) read 20% of the data in parallel and identified themes independently. Identified themes were then discussed and a coding framework was developed iteratively by two coders (physician in training and researching psychologist). The remainder of the data was coded by Author 1 and discussed with FR and RJ. Themes were identified at a semantic level (Braun and Clarke, 2006), specifically related to the current planning practices ( 27 ) and needs for the future. The results pertaining to the needs for ACPbp models are presented here. Results Participant characteristics Table 1 here Table 1 Demographic characteristics of RACF nurses and nurse assistants (n = 23) (no other health professionals participated) Age Range = 25–62 years (m = 44.7, SD = 13.0) Years of experience working in RACF Range = 1–38 years (m = 12, SD = 10.7) Gender Female: n = 20 (86.9%) Male: n = 3 Palliative Care Training n = 9 (39.1%) m = mean, SD = standard deviation Table 2 here Table 2 Demographic characteristics of physicians (n = 13) Age Range: 35–66 years (m = 48.5, SD = 8.9) Years of experience as physician Range: 7–37 years (m = 15.1, SD = 9.1) Gender Female: n = 5, Male: n = 8 (61%) Training Palliative Care: 7 (53%) Geriatrics: 5 (38%) m = mean, SD = standard deviation Table 3 here Table 3 Demographic characteristics of health care proxies and RACF residents Health care proxies (n = 18) Age Range: 48–84 years (m = 67.5, SD = 10.2) Gender Female: 9 (50%) Male: 9 Relationship to resident (n) Brother 2 Son 5 Daughter 5 Wife 1 God child 2 In-laws (sister, brother) 2 State-nominated power of attorney (known to the resident) 1 Residents (n = 16) Age Range: 65–97 years (m = 87.6, SD = 9.9) Gender Female: n = 11 (78%), Male: n = 3 Time in RACF Range: 0.2-9 years (m = 3.6, SD = 2.0) m = mean, SD = standard deviation Advance care planning by proxy as an opportunity for increased communication All participant groups noted the need for more communication about death, EoL, wishes for future care, and treatment options for potential future health problems. These parties expressed different needs in terms of communication: health care proxies expressed the need for more communication about the health status of the person that they represent; nurses expressed the need for more information from health care proxies about the residents’ values and lives along with more communication from physicians about medical treatments; and physicians expressed a need for more exchange about the resident and their life and experiences in order to be able to plan for their future care. ACPbp presents an opportunity to meet these needs. The specific needs for such models are presented below. Process needs Standardised process Both RACF nurses and physicians noted the need for systematic planning processes for residents who no longer have medical DMC. Planning processes that are consistent across RACFs were seen as essential in ensuring that all parties know their roles and responsibilities and that information is transmitted efficiently. Furthermore, clear institutional processes would allow RACF staff to feel legitimised in broaching subjects of EoL care and treatment in emergency situations with health care proxies and residents, as these could be sensitive topics. All parties noted the importance of systematically discussing resident’s lives, and the benefits of standardised processes to ensure that such discussions are carried out in a timely manner. Furthermore, health care proxies mentioned that they would like regular meetings as part of a longitudinal planning process, in order to feel accompanied during decision-making and planning: “(…) to do maybe once a year, every 6 months, a little review, to tell us ‘well how it happened over there, do we add a medication, with the medications that she’s taking is she calm enough for the night? How is her life going in the RACF?’. To be better informed [yeah], it’s true, when we are at the RACF, I find it quite difficult to be able to discuss with a nurse and not… it’s no ideal, in the end you already have to go and look for them, then they are often busy, well, it’s often not the right moment” (Proxy interview 4, Proxy 4) “Well, I need to have some, some interviews, or meetings, ah, regular, it’s not me who has asked to ah, to talk […], the last was two years ago.” (Proxy interview 3, Proxy 3) Health professionals also highlighted the importance of systematic planning processes to promote efficiency, and to ensure that the time invested in developing planning processes is not doubling up on work being done in different institutions: “It’s a little bit, it’s almost absurd because finally, yeah, we reinvent the wheel each on our side.” (Physician FG 1, Physician 2) Health professional training RACF health professionals noted the need for specific training about advanced directives and ACP, so that they feel better equipped in conducting ACPbp discussions. Such training should detail how to implement ACPbp: “A new training that involves ah, the implementation of these types of advanced directives”’ Nurse FG 1, Nurse 2) However, in light of the time constraints, such a training should be succinct and practical: “I want to say, it shouldn’t be something that involves a training that’s too in-depth. If there is a training. What’s needed is something that’s practical.” (Nurse FG 1, Nurse 2) Discussion guides RACF nurses and physicians alike highlighted the need for guides for conducting ACPbp discussions which are reported as being delicate: “A sort of guidelines, but how to conduct something in a way which isn’t confronting for the family, it’s a delicate subject, after all.” (Nurse FG1, Nurse 4) Such guides were reported to give RACF nurses permission and legitimacy to carry out discussions, and to ensure that the discussions flow well and accompany the health care proxy in their reflections and decision-making on behalf of the resident. Such guides should also be flexible and easily adapted to the needs of the situation. One of the essential aspects of these discussion guides is the person’s values and beliefs as well as concrete situations which could arise: “Talk about values, beliefs, or not… ah, to know how the person sees the end of their life, because there are those who accept, me, my wife, she accepts everything, it’s life, right. Should we, well, talk about concrete situations by saying in case of this, in case of that, what do we do?” (Proxy interview 3, proxy 3) A discussion guide should accompany health professionals in teasing out the resident’s presumed will: “(…) and, explain to them that it’s not them who need to make the decisions, that the best thing is really to reflect on what that person would have wanted” (Proxy interview 15, proxy 18) This was also highlighted by physicians who went one step further in noting that, by explicitly reconstructing the resident’s presumed will, and explaining that the health care proxy needs to make decisions about what the resident would have wanted, not what they think is the best for them, health care proxies may be relieved of some of the decisional burden. Another aspect of this is ensuring that the discussion is focused on the resident’s values, and checking that these values are in fact the resident’s and not the family/health care proxies: “I think that for helping the families, it’s really important to talk with them about the person’s values (emphasis added).” (Proxy interview 15, proxy 18) In addition, the changing nature of values was highlighted as a complexity in ACP bp discussions: “It’s true that to be able to work with the values of the person concerned, we agree. But right, as values change, it’s really complicated, right.” (Proxy interview 15, proxy 18) therefore, highlighting the necessity of ensuring that the values discussed are still relevant to base anticipatory decisions upon. In addition to discussions about the resident’s life, values, and treatments that they would or would not be willing to accept, physicians noted the importance of clearly discussing the medical indications for specific treatments for older RACF residents who already have limited autonomy and likely multiple morbidities: “We must be careful, too, before engaging, because if we have someone who is 97 years old and wants intensive care, it’s not certain that the hospital will provide it.” (Physician FG3, Physician 2) in order to ensure that health care proxies make decisions based on the information that is pertinent to each resident. Documentation When asked about needs in terms of documentation, both RACF nurses and physicians indicated that a short, clear, and simple document is needed: “short and simple […] it must be clear and able to be found” (Physician FG3, Physician 4) However, the concise forms should be adaptable and able to be personalized, with explanations about the specific patients and the decisions made, including the general attitude and care goal due to the unpredictable nature of the decisions: “P4: to leave space free for putting a…. P5:… explanations.. P4 : personal explanations P5 : because I think that we need a general attitude - and then I think that we must anticipate specific cases when they are predictable and then everything is coherent, well, still to have some boxes for very particular cases if… because … it’s in a panic and then if it’s the night shift… “ (Physician FG 1, Physicians 4 and 5) In addition to a general attitude to treatment, participants raised the issue of decisions specific to the RACF setting, which is both a home and a care institution. This applies specifically in relation to decisions to hospitalise or not, and to the levels of care at the hospital: “I don’t believe that we can predict everything in advance. I think that what is important is to have an idea of the general attitude and then after, well, if there is really a small detail and it’s not 3 am, we can re-discuss it when it comes up. But as you were saying it’s hospitalisation, not hospitalisation in case of emergency; it’s rare that we ask about resuscitation in the RACF.” (Physician FG 3, Physician 2) “We can’t anticipate these types of.. it becomes too complex, in fact. But I agree that if we already have a general idea between hosp-…. well, me, it’s intensive care ‘yes’ or ‘no’, hospital ‘yes’ or ‘no’, operate on a fracture ‘yes’ or ‘no’ and after I know around about the level, I want to say, but we are obliged to re-discuss [it] each time.” (Physician FG 3, Physician 1) All parties reiterated the need for effective documentation of contact persons, both related to the reference person within the RACF and the health care proxies and people to contact if the health care proxy is unavailable, and for this information to be updated when changes occur: “…what do we do? So who do we call? ‘first we call me, then my sister’ finally, so that they all agree and there is a sort of protocol like that.” (Physician FG 1, Physician 6) “I see that in the RACF it changes, hey, the head nurse, it’s the third one, finally, right, it’s like that. So, we don’t know who the reference person is anymore.” (Proxy int 3, HCP 3) Conditions/ general needs Time While nurses and physicians expressed the need for more information about various facets of the resident’s life and care, they stated an overwhelming need for more time to be able to conduct meaningful planning. They expressed that it would be ideal to have a more structured planning process, and that this would help them in caring for residents as closely to their wishes as possible, but that they would need time for this specific task to be factored into their workweek. In addition, this would need to be billable. RACF health professionals also stated that ideally time for ACPbp should be factored into off-care work time so that they are able to give undivided attention to the task. ACPbp facilitator In relation to the people best placed to facilitate ACPbp in RACFs, nurses and physicians noted the importance of an interprofessional approach. They highlighted the role of the RACF nurses as people who have daily contact with the residents, and more regular contact with health care proxies, and who are able to make many observations about the dynamics between relatives and residents and also about the residents’ preferences: “The reference nurse is well placed to… to start to talk about that because we must first discuss. We welcome the family, well, the resident and then the family […] so we have links to the family.” (Nurse FG 1, Nurse 5) It was noted that ACPbp would be best facilitated by a person who has more experience in the RACF, and more specialised training: “The head nurses [of the ward] have more training, I find, in all that. And so… and then dare a little more to assert themselves […] and conduct the interviews.” (Physician FG3, Physician 4) Furthermore, RACF nurses, due to their more consistent presence in the RACF, should be involved in ACPbp discussions to ensure better information transmission in case a decision is needed: “You aren’t there the evenings, you’re not there the weekend, when you come one or two times per week, it’s still the carer who is there, who spends time with the health care proxy […] I believe that teamwork there is so absolutely necessary and is we have good teams…” (Physician FG 3, Physician 3) Despite their concerns about how to find the time to include physicians and the added difficulty of coordinating ACP discussions in physician visits which are already very charged, both nurses and physicians highlighted the necessity of having physicians involved in such planning in order to firstly gain a better understanding of the residents’ life, values, and preferences, and, secondly, in order to discuss the medically indicated options for future potential treatments: “Me, I think that we could be more of a guide… already in the explanation of medical terms or with the treating physician. Explain to them the treatments that we can do at the RACF” (Nurse FG 2, Nurse 5) Information transmission All parties expressed the need for efficient information transmission in order to ensure that ACPbp is useful in conveying a person’s presumed wishes for treatment. Storing the ACPbp securely and in a system that is accessible to all those requiring the information is key: “the number of times that we started the advanced directives, when I worked at the hospital (as a nurse), and then we said ‘but, he did an advanced directive, it’s at the RACF’ […] We talk about a single medical file, an electronic record, all that, I find that it’s a shame that it’s not yet in place.” (Proxy interview 15, proxy 18) Discussion The themes identified in relation to needs for an ACPbp model related to the overall need for greater communication around care and treatment for people who no longer have medical DMC, the need for health care proxies to be accompanied through a reflection and decision-making process, and factors related to the specific details of an ACPbp intervention. These factors included: a standardised process, health professional training, discussion guides, and specific documentation. The highlighted need for specific documentation supports in der Schmitten et. al.’s calls for formal standards for advanced directives in nursing homes ( 28 ). Several conditions which would need to be fulfilled for such an intervention to be useful were also identified; time to conduct planning discussions and people trained to facilitate this process. Such ACPbp models could provide families and health care proxies with clear information and opportunities to discuss future problems, thus responding to recent calls for increasing family awareness of treatment options via ACP ( 29 ), thus reducing unwanted hospital transfers for RACF residents at EoL. The results of this study highlight need for standardised ACPbp documentation, and also stipulate the information that such as document should contain. The recommendations for ACPbp documentation are coherent with Malhotra’s (2021) recommendations that ACP discussions with caregivers of people with dementia should elicit general goals of EoL care, and also more specific decisions which arise commonly ( 30 ). However, this is only one aspect of the ACPbp process. Much attention was given to the need to develop discussion guides, thus reinforcing the importance of ACPbp as a relational process in which specific discussions conducted by specialised health care professionals are needed. By developing discussion guides which explore a resident’s presumed will, and discussing medical indication and treatment possibilities, ACPbp models can also provide the necessary tools for clinicians to carefully investigate and elicit caregiver ‘misconceptions regarding the illness and specific treatments’ ( 30 ) and thus reduce fears of making wrong decisions. Through specific discussion guides, ACPbp models may provide the focused training and for engaging in sensitive EoL planning discussions, which has been called for in previous research ( 31 ). The results of this study also support the implementation of ACPbp in RACFs via an interprofessional team; reference nurses for their knowledge of the resident, and physicians in order to discuss medical indication and predictable health events. This model could go some way to alleviate the time-related stress that has been reported by physicians ( 32 ), thus reducing barriers to ACP initiation. However, further research is necessary to investigate the roles of people lacking DMC in this process and to develop specific recommendations for deciding on when to include these people in such discussions. Previous research has shown that while residents with dementia are grateful when involved in discussing their care, they had difficulty reporting what was discussed ( 33 ). The aforementioned needs provide valuable information about the essential contents of ACPbp models for the RACF context, however, implementation strategies should consider the needs of RACF staff who need to engage in discussions which are emotionally laborious, with previous research noting a lack of support mechanisms in place to support staff conducting ACP discussions in RACF settings ( 31 ). Readiness is a key factor in participation in standard ACP and is mentioned in the very definition of ACP ( 34 ). Readiness to participate in highly variable in the general population of older people and their health care proxies ( 35 ), thus stages of change models ( 36 ) may be useful. It is therefore reasonable to hypothesise that readiness may play an important role for both health professionals conducting ACPbp ( 37 ) and health care proxies making decisions on behalf of their loved ones, and should thus be taken into consideration and used to adapt information provision. Many factors necessary for implementing ACP in nursing homes, such as selecting reference persons, information provision for all involved, mentoring, and models for ACP conversations and documents have also been identified ( 38 ). Limitations This study was conducted in Switzerland, where an insurance-based health system dictates time allocated to specific treatments and consultations, and where individuals have a large liberty in choosing their health care providers. The needs identified in this study are thus partly a function of the health system, however they may also be applied to similar highly developed health systems. The participants in this study participated voluntarily, thus introducing a self-selection bias as they are likely to be health professionals and health care proxies who are interested and invested in the topic and therefore may have a more favourable view of the topic. Conclusion This study has identified the needs for planning care of residents who no longer have DMC, from the perspectives of health care proxies, RACF nurses, and physicians. The need for standardised documentation, specifically trained health professionals, guides for ACPbp discussions, and the necessity of dedicated time to conduct ACPbp were highlighted. This information is valuable for the development of new models of ACPbp and accompanying all parties involved in this process. Declarations Ethics approval and consent to participate The Ethics Commission of the Canton of Vaud (Switzerland) assessed this project and waived the need for ethics approval as the project did not involve patients and did not involve medical data. Consent for publication All participants in this study completed a voluntary informed consent form. The data presented here are anonymised and coded in accordance with the consent form completed by participants. Availability of data and materials The datasets generated or analysed during the current study are not publicly available as these data are qualitative and publishing them may provide enough information to identify the participants. Selected extracts have been translated and anonymised for publication here. Data will be made available upon reasonable request from the corresponding author for the purposes of verification. Competing interests The authors have no competing interests to declare. Funding This research was funded by the Chair of Geriatric Palliative Care, Lausanne University Hospital. Authors contributions LJ: Designed the study, collected the data, analysed the data, prepared manuscript. RR: Designed the study, prepared manuscript. FFA: Analysed the data, prepared the manuscript. FR: Participated in data collection, analysed the data, reviewed the manuscript. ERT: Designed the study, participated in data collection, reviewed the manuscript. RJJ: Designed the study, participated in the data collection, prepared the manuscript. Acknowledgements The authors wish to acknowledge the participants in this study for so generously giving their time and sharing their experiences. References World Health Organization. First WHO ministerial conference on global action against dementia: meeting report, WHO Headquarters, Geneva, Switzerland, 16-17 March 2015: World Health Organization; 2015. Ng R, Lane N, Tanuseputro P, Mojaverian N, Talarico R, Wodchis WP, et al. Increasing complexity of new nursing home residents in Ontario, Canada: A serial cross‐sectional study. Journal of the American Geriatrics Society. 2020;68(6):1293-300. Miranda R, Smets T, Van Den Noortgate N, Deliens L, Block LVdJIJoER, Health P. Higher Prevalence of Dementia but No Change in Total Comfort While Dying among Nursing Home Residents with Dementia between 2010 and 2015: Results from Two Retrospective Epidemiological Studies. 2021;18(4):2160. Bollig G, Gjengedal E, Rosland JHJPM. They know!—Do they? A qualitative study of residents and relatives views on advance care planning, end-of-life care, and decision-making in nursing homes. 2016;30(5):456-70. Rietjens JA, Sudore RL, Connolly M, van Delden JJ, Drickamer MA, Droger M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. 2017;18(9):e543-e51. McMahan RD, Tellez I, Sudore RL. Deconstructing the complexities of advance care planning outcomes: what do we know and where do we go? A scoping review. Journal of the American Geriatrics Society. 2021;69(1):234-44. Malhotra C, Shafiq M, Batcagan-Abueg APM. What is the evidence for efficacy of advance care planning in improving patient outcomes? A systematic review of randomised controlled trials. BMJ open. 2022;12(7):e060201. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. Bmj. 2010;340:c1345. Vilpert S, Borrat-Besson C, Maurer J, Borasio GD. Awareness, approval and completion of advance directives in older adults in Switzerland. Swiss medical weekly. 2018;148(2930). Vilpert S, Borasio GD, Maurer J. Knowledge Gaps in End-of-Life Care and Planning Options Among Older Adults in Switzerland. International Journal of Public Health. 2022;67:1604676. Meier C, Vilpert S, Wieczorek M, Borrat-Besson C, Jox RJ, Maurer J. End-of-life health literacy, knowledge and behaviours towards advance care planning among older adults: cross-sectional evidence from Switzerland. BMJ Public Health. 2024;2(1). Meier C, Vilpert S, Borasio GD, Maurer J, Jox RJ. Perceptions and knowledge regarding medical situations at the end of life among older adults in Switzerland. Journal of Palliative Medicine. 2023;26(1):35-46. Lamberg JL, Person CJ, Kiely DK, Mitchell SL. Decisions to hospitalize nursing home residents dying with advanced dementia. Journal of the American Geriatrics Society. 2005;53(8):1396-401. Nemiroff L, Marshall EG, Jensen JL, Clarke B, Andrew MKJJotAMDA. Adherence to “no transfer to hospital” advance directives among nursing home residents. 2019;20(11):1373-81. Hughes JC, Jolley D, Jordan A, Sampson EL. Palliative care in dementia: issues and evidence. Advances in Psychiatric Treatment. 2007;13(4):251-60. van der Steen JT, Radbruch L, Hertogh CM, de Boer ME, Hughes JC, Larkin P, et al. White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care. Palliative medicine. 2014;28(3):197-209. van der Steen JT, Nakanishi M, Van den Block L, Di Giulio P, Gonella S, in der Schmitten J, et al. Consensus definition of advance care planning in dementia: A 33‐country Delphi study. Alzheimer's & Dementia. 2024;20(2):1309-20. Dening KH, Jones L, Sampson EL. Advance care planning for people with dementia: a review. International Psychogeriatrics. 2011;23(10):1535-51. Piers R, Albers G, Gilissen J, De Lepeleire J, Steyaert J, Van Mechelen W, et al. Advance care planning in dementia: recommendations for healthcare professionals. BMC palliative care. 2018;17:1-17. Harrison Dening K, Sampson EL, De Vries K. Advance care planning in dementia: recommendations for healthcare professionals. Palliative Care: Research and Treatment. 2019;12:1178224219826579. Gilissen J, Pivodic L, Smets T, Gastmans C, Vander Stichele R, Deliens L, et al. Preconditions for successful advance care planning in nursing homes: A systematic review. International journal of nursing studies. 2017;66:47-59. Bryant J, Sellars M, Waller A, Detering K, Sinclair C, Ruseckaite R, et al. Advance care planning participation by people with dementia: a cross-sectional survey and medical record audit. BMJ supportive & palliative care. 2022;12(e3):e464-e8. Monnet F, Diaz A, Gove D, Dupont C, Pivodic L, Van den Block L. The perspectives of people with dementia and their supporters on advance care planning: A qualitative study with the European Working Group of People with Dementia. Palliative Medicine. 2024:02692163231219915. Jox RJ. Lost decisional capacity- lost chance of Advance Care Planning? Bioethica Forum. 2016;9(3):109-10. Volicer L, Cantor MD, Derse AR, Edwards DM, Prudhomme AM, Gregory DCR, et al. Advance Care Planning by Proxy for Residents of Long‐Term Care Facilities Who Lack Decision‐Making Capacity. Journal of the American Geriatrics Society. 2002;50(4):761-7. Song D, Yu T, Zhi S, Chang C, Sun J, Gao S, et al. Experiences and perspectives on the optimal timing for initiating advance care planning in patients with mild to moderate dementia: A Meta-synthesis. International Journal of Nursing Studies. 2024:104762. Jones L, Rhyner F, Rutz Voumard R, Figari Aguilar F, Rubli Truchard E, Jox RJ. “What Is the Most Important to Them?” Swiss Health Care Proxies, Nurses, and Physicians Discuss Planning Practices for Aged Care Residents Who No Longer Have Medical Decision-Making Capacity. Gerontology. 2024;70(2):173-83. in der Schmitten J, Jox RJ, Pentzek M, Marckmann G. Advance care planning by proxy in German nursing homes: Descriptive analysis and policy implications. Journal of the American Geriatrics Society. 2021;69(8):2122-31. Sopcheck J, Tappen RM. Nursing home resident, family, and staff perspectives on hospital transfers for end-of-life care. OMEGA-Journal of Death and Dying. 2023;86(3):1046-68. Malhotra C, Mohamad H, Østbye T, Pollak KI, Balasundaram B, Malhotra R, et al. Discordance between dementia caregivers’ goal of care and preference for life-extending treatments. 2021. Spacey A, Scammell J, Board M, Porter S. A critical realist evaluation of advance care planning in care homes. Journal of Advanced Nursing. 2021;77(6):2774-84. Somal K, Foley T. General practitioners’ views of advance care planning: a questionnaire-based study. Irish Journal of Medical Science (1971-). 2022:1-10. Goossens B, Sevenants A, Declercq A, Van Audenhove C. Shared decision-making in advance care planning for persons with dementia in nursing homes: a cross-sectional study. BMC geriatrics. 2020;20(1):1-8. Sudore RL, Heyland DK, Lum HD, Rietjens JAC, Korfage IJ, Ritchie CS, et al. Outcomes that Define Successful Advance Care Planning: A Delphi Panel Consensus. J Pain Symptom Manage. 2017. Fried TR, Bullock K, Iannone L, O'leary JR. Understanding advance care planning as a process of health behavior change. Journal of the American Geriatrics Society. 2009;57(9):1547-55. Prochaska JO, Velicer WF. The transtheoretical model of health behavior change. American journal of health promotion. 1997;12(1):38-48. Konno R, Inoue K, Matsushita Y, Hashimoto K, Wiechula R, To T, et al. Barriers to Advance Care Planning in Older Adults With Dementia, Their Families and Healthcare Professionals: An Umbrella Review of Qualitative Evidence. Research on Aging. 2024:01640275241227909. Gilissen J, Pivodic L, Gastmans C, Vander Stichele R, Deliens L, Breuer E, et al. How to achieve the desired outcomes of advance care planning in nursing homes: a theory of change. BMC geriatrics. 2018;18:1-14. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 26 Sep, 2025 Read the published version in BMC Geriatrics → Version 1 posted Editorial decision: Revision requested 26 Aug, 2024 Editor assigned by journal 23 Aug, 2024 Submission checks completed at journal 23 Aug, 2024 First submitted to journal 20 Aug, 2024 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. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4943848","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":345126001,"identity":"c50e88f5-5538-4c86-91ee-3ebaf32e9c22","order_by":0,"name":"Laura Jones","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAAzUlEQVRIiWNgGAWjYBACAwjFBiIYHzA2gGge4rUwG5CiBaJPgjgt7GfMPvxg4JMzZ29/VvFzx+HEBvazB/Br4ckxntnDwGZs2XPG7GbvGaAWnrwEAg7LMQa6hC1xw40cttuMbYeNGSR4DPBr4X9jzPgHpOX+82fFxGmRyDFmhtjCYMYM1CJHhJZnxcwyBmzGBmdyjCV729Ll2Hhy8Gux70/ezPim4picwfHjDz/8bLPm4Wc/g18L1K5jCDYbEepBoIZIdaNgFIyCUTAiAQD7JjvSbdd8LwAAAABJRU5ErkJggg==","orcid":"","institution":"Chair of Geriatric Palliative Care, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland","correspondingAuthor":true,"prefix":"","firstName":"Laura","middleName":"","lastName":"Jones","suffix":""},{"id":345126003,"identity":"e2a7a23d-4f6f-4681-8d76-d6d8ecd39977","order_by":1,"name":"Rachel Rutz Voumard","email":"","orcid":"","institution":"Palliative and supportive care service, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland","correspondingAuthor":false,"prefix":"","firstName":"Rachel","middleName":"Rutz","lastName":"Voumard","suffix":""},{"id":345126004,"identity":"abc73833-2510-4d94-9079-0f94baf7e257","order_by":2,"name":"Florent Rhyner","email":"","orcid":"","institution":"Chair of Geriatric Palliative Care, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland","correspondingAuthor":false,"prefix":"","firstName":"Florent","middleName":"","lastName":"Rhyner","suffix":""},{"id":345126005,"identity":"e319a3c0-3622-42f0-8993-c4cee1364fea","order_by":3,"name":"Fiorella Figari Aguilar","email":"","orcid":"","institution":"Department of Geriatrics, Rehabilitation and Palliative Care, Neuchâtel Hospital Network, Neuchâtel, Switzerland","correspondingAuthor":false,"prefix":"","firstName":"Fiorella","middleName":"Figari","lastName":"Aguilar","suffix":""},{"id":345126006,"identity":"05c888b4-843e-4d47-a79e-3ebd10e1b09a","order_by":4,"name":"Eve Rubli Truchard","email":"","orcid":"","institution":"Chair of Geriatric Palliative Care, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland","correspondingAuthor":false,"prefix":"","firstName":"Eve","middleName":"Rubli","lastName":"Truchard","suffix":""},{"id":345126007,"identity":"abd39fc7-cfb7-4cec-ac68-02e9db16cbc6","order_by":5,"name":"Ralf J Jox","email":"","orcid":"","institution":"Chair of Geriatric Palliative Care, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland","correspondingAuthor":false,"prefix":"","firstName":"Ralf","middleName":"J","lastName":"Jox","suffix":""}],"badges":[],"createdAt":"2024-08-20 09:33:28","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4943848/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4943848/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12877-025-06354-1","type":"published","date":"2025-09-26T15:58:21+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":92430664,"identity":"a61a752c-a490-44b3-9f97-8fb475071d96","added_by":"auto","created_at":"2025-09-29 16:07:26","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":640911,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4943848/v1/0533b426-281f-4ec2-9fb1-68f95c33d260.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Proxy, nurse, and physician needs regarding advance care planning by proxy for aged care residents lacking decision making capacity: an exploratory study","fulltext":[{"header":"Background","content":"\u003cp\u003eAs global population ageing continues, more and more people are living with neurocognitive decline due to diseases such as dementia, which is a leading cause of dependence and disability (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). Over time, people being admitted to residential aged care facilities (RACF) are increasingly older, with more chronic multimorbidity and complicated treatments, and are more likely to live with extensive physical and cognitive impairments (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e). However, although increasing numbers of RACF residents have dementia, and more assessments of comfort and care are conducted, their comfort while dying from dementia has not improved in the last 15 years (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e), thus highlighting the need to improve care planning and end-of-life (EoL) care. Indeed, while RACF residents who maintain decision-making capacity (DMC) report that they trust their health care proxies and families making decisions on their behalf, the latter report feeling insecure and unsure about this role and consider it a burden (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAdvance Care Planning (ACP) is defined as a process in which people who possess decision-making capacity can reflect upon their values and wishes, document their anticipatory decisions for future medical care and nominate a health care proxy (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). ACP has been shown to increase patient and health care proxy satisfaction with care and communication and reduce both health care proxy and clinician distress (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e) and decisional conflict, and improve concordance between patients and their health care proxies regarding treatment preferences (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). In addition, ACP participation promotes knowledge or, and compliance with EoL wishes in elderly people (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eHowever, in Switzerland, ACP rates are generally low (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e), and older adults have substantial gaps in their knowledge about EoL care options and planning, a trend which increases with age (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). In addition, people who have higher EoL literacy are more likely to participate in ACP, and discuss EoL preferences (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). On the flip side, less than a third of older Swiss adults accurately assess likelihood of different places of death (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e). Thus, the large majority of older adults are admitted to RACFs without having formally stipulated their treatment preferences, and many of them also lack DMC to make such anticipatory decisions. Lack of advance directives leads to increased hospitalisation rates, and decisions to forego hospitalisations of people with advanced dementia are often left until death is imminent (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e). This population is thus at risk of receiving treatment which is discordant with their wishes. Indeed, even when 73% of RACF residents had orders not to be hospitalized, over 50% were in fact hospitalized, primarily due to orders being unclear, for symptom control and for further investigations (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e), thus highlighting the necessity for planning processes specifically adapted to the RACF context, clear communication and documentation of the presumed wishes.\u003c/p\u003e \u003cp\u003eImprovement of EoL care for people with dementia is an ethical imperative (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). Person-centred care and ACP and have been identified by a Delphi panel as a priority for the care of people with dementia (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e), and the Delphi panel of the European Association for Palliative Care subgroup on ACP and dementia has produced a definition ‘a communication process adapted to the person's capacity, which includes, and is continued with, family if available’ (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). In addition, there is an increasing body of scientific literature providing recommendations for ACP in this context (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e) (\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e) (\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e) and highlighting the necessary preconditions (\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e). Previous research shows that in RACF residents with dementia who maintain DMC, less than one quarter had completed an ACP, and concordance of reports of completing an ACP and an ACP being recorded in the resident’s medical file was low, thus emphasizing the need for ACP models promoting ‘discussion, documentation and accessible storage of ACP documents’ for this population (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eHowever, even when people with dementia in nursing homes are the subject of enquiry, such research often focuses on people who maintain decision-making capacity for medical treatment. The European Working Group of people with dementia have noted the need to extend the ACP definition to include people with diminished DMC and acknowledge the role of their social connections in ACP participation (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). An international Delphi panel has recently adapted initial ACP definitions, to include people with dementia, thus stating that ACP should be conducted with people with dementia and their families and health care teams and be an ongoing process of communication that continues with the family once the person with dementia is no longer able to participate (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eAdvance care planning by proxy (ACPbp), for persons who have lost decision-making capacity, is driven by the health care proxy, who takes legal responsibility for decisions (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e) and ‘represents the patient’s interests in specifying treatment preferences on behalf of a decisionally incapacitated patient’ (pg 761, 25). Volicer et al., (2002) have identified important aspects of ACPbp for people in aged care facilities. These recommendations include a meeting between the health care proxy and members of the care team as soon as possible after nursing home admission, consideration of the patient’s values, preferences and previously expressed goals, consultation of advance directives if they exist, documentation of plans by the treating physician and storing the plans in a place that is accessible, ongoing discussions about the patient’s needs and regular reviews of the plans. Despite such recommendations, many difficulties have been noted in initiating ACP for people with dementia, notably due to the incertitude about finding an appropriate time in the disease trajectory (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e). Our previous research indicated that current care planning is highly variable and lacks standardised processes, that documents are developed by individual institutions depending on their needs, but that these may be difficult to interpret when needed (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). Furthermore, an analysis of ACP documents produced by proxy in German nursing homes reported widely variable contents and justifications for the decisions in such documents (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). Specific models of ACPbp are thus needed. The objective of this research is to identify what is needed from an ACPbp intervention that is specifically designed to be used with health care proxies of RACF residents who no longer have DMC.\u003c/p\u003e "},{"header":"Method","content":"\u003cp\u003eDesign\u003c/p\u003e\u003cp\u003e This was a qualitative explorative study to identify the needs of health care proxies, residential aged care nurses and physicians for an ACPbp model designed specifically for use on behalf of RACF residents who no longer have decision-making capacity.\u003c/p\u003e\u003cp\u003eParticipants\u003c/p\u003e\u003cp\u003ePotential RACFs were recruited through an e-mail sent to directors of care through the federation that connects them, and interested directors contacted the research team directly. Nurses from these RACFs were invited to participate in focus groups that were held during their work hours at the RACFs.\u003c/p\u003e\u003cp\u003ePotential health care proxies of residents who no longer had medical decision-making capacity were identified by the head nurses of five RACFs (three of which participated in nurse focus groups). These health care proxies were sent an e-mail and contacted by telephone to ask for their permission to be contacted by a researcher who explained the study and sought their informed consent. Health care proxies were not paid to participate and were thanked with chocolates or book vouchers of modest value.\u003c/p\u003e\u003cp\u003ePhysicians working in RACFs were recruited through an e-mail sent to all members of the association which connects physicians working in RACFs, and interested physicians contacted the researchers directly. Participating physicians were reimbursed for their time at their hourly consultation rate.\u003c/p\u003e\u003cp\u003eData collection\u003c/p\u003e\u003cp\u003eFace-to-face focus groups were conducted with RACF nurses in three RACFs. Moreover, focus groups were conducted with three groups of physicians in a tertiary hospital. The focus groups were centred around questions about the current planning practices for residents who no longer have medical DMC (published elsewhere (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e), difficulties with the current practices, needs for the future, and the conditions that are needed to implement ACP in this context. Focus groups were conducted between July 2018 and September 2019.\u003c/p\u003e\u003cp\u003eFace-to-face semi-structured interviews with health care proxies were conducted at a place of their choosing; at the RACF, in their homes or in the researchers’ offices. The interviewer asked questions related to the proxy’s experience in fulfilling this role on behalf of their loved one, the planning practices in the RACF, and their needs for the future.\u003c/p\u003e\u003cp\u003eAll focus groups and interviews were conducted in French, audio-recorded and transcribed by a professional transcriber. Two physicians (ERT, RJ) conducted the focus groups, one of whom was known to some physician participants, the other of whom was not known to the focus group participants. One researching psychologist (LJ), experienced in conducting interviews and not known to any of the participants, conducted the semi-structured interviews.\u003c/p\u003e\u003ch2\u003eData analysis\u003c/h2\u003e\u003cp\u003eThree researchers, a physician in training (FR), a researching advanced practice nurse (FFA), and a researching psychologist- (LJ) read 20% of the data in parallel and identified themes independently. Identified themes were then discussed and a coding framework was developed iteratively by two coders (physician in training and researching psychologist). The remainder of the data was coded by Author 1 and discussed with FR and RJ. Themes were identified at a semantic level (Braun and Clarke, 2006), specifically related to the current planning practices (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e) and needs for the future. The results pertaining to the needs for ACPbp models are presented here.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eParticipant characteristics\u003c/p\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e here\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDemographic characteristics of RACF nurses and nurse assistants (n\u0026thinsp;=\u0026thinsp;23) (no other health professionals participated)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRange\u0026thinsp;=\u0026thinsp;25\u0026ndash;62 years\u003c/p\u003e \u003cp\u003e(m\u0026thinsp;=\u0026thinsp;44.7, SD\u0026thinsp;=\u0026thinsp;13.0)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYears of experience working in RACF\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRange\u0026thinsp;=\u0026thinsp;1\u0026ndash;38 years\u003c/p\u003e \u003cp\u003e(m\u0026thinsp;=\u0026thinsp;12, SD\u0026thinsp;=\u0026thinsp;10.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale: n\u0026thinsp;=\u0026thinsp;20 (86.9%) Male: n\u0026thinsp;=\u0026thinsp;3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePalliative Care Training\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003en\u0026thinsp;=\u0026thinsp;9 (39.1%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"2\"\u003em\u0026thinsp;=\u0026thinsp;mean, SD\u0026thinsp;=\u0026thinsp;standard deviation\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e here\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDemographic characteristics of physicians (n\u0026thinsp;=\u0026thinsp;13)\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRange: 35\u0026ndash;66 years (m\u0026thinsp;=\u0026thinsp;48.5, SD\u0026thinsp;=\u0026thinsp;8.9)\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eYears of experience as physician\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRange: 7\u0026ndash;37 years (m\u0026thinsp;=\u0026thinsp;15.1, SD\u0026thinsp;=\u0026thinsp;9.1)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eFemale: n\u0026thinsp;=\u0026thinsp;5, Male: n\u0026thinsp;=\u0026thinsp;8 (61%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eTraining\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePalliative Care: 7 (53%) Geriatrics: 5 (38%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"2\"\u003em\u0026thinsp;=\u0026thinsp;mean, SD\u0026thinsp;=\u0026thinsp;standard deviation\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eTable\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e here\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eDemographic characteristics of health care proxies and RACF residents\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"4\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cdiv align=\"char\" char=\".\" class=\"colspec\" colname=\"c4\" colnum=\"4\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eHealth care proxies (n\u0026thinsp;=\u0026thinsp;18)\u003c/em\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eRange: 48\u0026ndash;84 years (m\u0026thinsp;=\u0026thinsp;67.5, SD\u0026thinsp;=\u0026thinsp;10.2)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale: 9 (50%) Male: 9\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eRelationship to resident (n)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eBrother\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eSon\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eDaughter\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eWife\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eGod child\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eIn-laws (sister, brother)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eState-nominated power of attorney\u003c/p\u003e \u003cp\u003e(known to the resident)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"char\" char=\".\" colname=\"c4\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cem\u003eResidents (n\u0026thinsp;=\u0026thinsp;16)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAge\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eRange: 65\u0026ndash;97 years (m\u0026thinsp;=\u0026thinsp;87.6, SD\u0026thinsp;=\u0026thinsp;9.9)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eGender\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eFemale: n\u0026thinsp;=\u0026thinsp;11 (78%), Male: n\u0026thinsp;=\u0026thinsp;3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTime in RACF\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eRange: 0.2-9 years (m\u0026thinsp;=\u0026thinsp;3.6, SD\u0026thinsp;=\u0026thinsp;2.0)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c4\"\u003e\u0026nbsp;\u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"4\"\u003em\u0026thinsp;=\u0026thinsp;mean, SD\u0026thinsp;=\u0026thinsp;standard deviation\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eAdvance care planning by proxy as an opportunity for increased communication\u003c/h2\u003e \u003cp\u003eAll participant groups noted the need for more communication about death, EoL, wishes for future care, and treatment options for potential future health problems. These parties expressed different needs in terms of communication: health care proxies expressed the need for more communication about the health status of the person that they represent; nurses expressed the need for more information from health care proxies about the residents\u0026rsquo; values and lives along with more communication from physicians about medical treatments; and physicians expressed a need for more exchange about the resident and their life and experiences in order to be able to plan for their future care. ACPbp presents an opportunity to meet these needs. The specific needs for such models are presented below.\u003c/p\u003e \u003cp\u003eProcess needs\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eStandardised process\u003c/h2\u003e \u003cp\u003eBoth RACF nurses and physicians noted the need for systematic planning processes for residents who no longer have medical DMC. Planning processes that are consistent across RACFs were seen as essential in ensuring that all parties know their roles and responsibilities and that information is transmitted efficiently. Furthermore, clear institutional processes would allow RACF staff to feel legitimised in broaching subjects of EoL care and treatment in emergency situations with health care proxies and residents, as these could be sensitive topics. All parties noted the importance of systematically discussing resident\u0026rsquo;s lives, and the benefits of standardised processes to ensure that such discussions are carried out in a timely manner. Furthermore, health care proxies mentioned that they would like regular meetings as part of a longitudinal planning process, in order to feel accompanied during decision-making and planning:\u003c/p\u003e \u003cp\u003e\u0026ldquo;(\u0026hellip;) to do maybe once a year, every 6 months, a little review, to tell us \u0026lsquo;well how it happened over there, do we add a medication, with the medications that she\u0026rsquo;s taking is she calm enough for the night? How is her life going in the RACF?\u0026rsquo;. To be better informed [yeah], it\u0026rsquo;s true, when we are at the RACF, I find it quite difficult to be able to discuss with a nurse and not\u0026hellip; it\u0026rsquo;s no ideal, in the end you already have to go and look for them, then they are often busy, well, it\u0026rsquo;s often not the right moment\u0026rdquo; (Proxy interview 4, Proxy 4)\u003c/p\u003e \u003cp\u003e\u0026ldquo;Well, I need to have some, some interviews, or meetings, ah, regular, it\u0026rsquo;s not me who has asked to ah, to talk [\u0026hellip;], the last was two years ago.\u0026rdquo; (Proxy interview 3, Proxy 3)\u003c/p\u003e \u003cp\u003eHealth professionals also highlighted the importance of systematic planning processes to promote efficiency, and to ensure that the time invested in developing planning processes is not doubling up on work being done in different institutions:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;It\u0026rsquo;s a little bit, it\u0026rsquo;s almost absurd because finally, yeah, we reinvent the wheel each on our side.\u0026rdquo; (Physician FG 1, Physician 2)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eHealth professional training\u003c/h2\u003e \u003cp\u003eRACF health professionals noted the need for specific training about advanced directives and ACP, so that they feel better equipped in conducting ACPbp discussions. Such training should detail how to implement ACPbp:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;A new training that involves ah, the implementation of these types of advanced directives\u0026rdquo;\u0026rsquo; Nurse FG 1, Nurse 2)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eHowever, in light of the time constraints, such a training should be succinct and practical:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;I want to say, it shouldn\u0026rsquo;t be something that involves a training that\u0026rsquo;s too in-depth. If there is a training. What\u0026rsquo;s needed is something that\u0026rsquo;s practical.\u0026rdquo; (Nurse FG 1, Nurse 2)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eDiscussion guides\u003c/h3\u003e\n\u003cp\u003eRACF nurses and physicians alike highlighted the need for guides for conducting ACPbp discussions which are reported as being delicate:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;A sort of guidelines, but how to conduct something in a way which isn\u0026rsquo;t confronting for the family, it\u0026rsquo;s a delicate subject, after all.\u0026rdquo; (Nurse FG1, Nurse 4)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eSuch guides were reported to give RACF nurses permission and legitimacy to carry out discussions, and to ensure that the discussions flow well and accompany the health care proxy in their reflections and decision-making on behalf of the resident. Such guides should also be flexible and easily adapted to the needs of the situation. One of the essential aspects of these discussion guides is the person\u0026rsquo;s values and beliefs as well as concrete situations which could arise:\u003c/p\u003e \u003cp\u003e\u0026ldquo;Talk about values, beliefs, or not\u0026hellip; ah, to know how the person sees the end of their life, because there are those who accept, me, my wife, she accepts everything, it\u0026rsquo;s life, right. Should we, well, talk about concrete situations by saying in case of this, in case of that, what do we do?\u0026rdquo; (Proxy interview 3, proxy 3)\u003c/p\u003e \u003cp\u003eA discussion guide should accompany health professionals in teasing out the resident\u0026rsquo;s presumed will:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;(\u0026hellip;) and, explain to them that it\u0026rsquo;s not them who need to make the decisions, that the best thing is really to reflect on what that person would have wanted\u0026rdquo; (Proxy interview 15, proxy 18)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThis was also highlighted by physicians who went one step further in noting that, by explicitly reconstructing the resident\u0026rsquo;s presumed will, and explaining that the health care proxy needs to make decisions about what the resident would have wanted, not what they think is the best for them, health care proxies may be relieved of some of the decisional burden. Another aspect of this is ensuring that the discussion is focused on the resident\u0026rsquo;s values, and checking that these values are in fact the resident\u0026rsquo;s and not the family/health care proxies:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;I think that for helping the families, it\u0026rsquo;s really important to talk with them about the \u003cem\u003eperson\u0026rsquo;s values\u003c/em\u003e (emphasis added).\u0026rdquo; (Proxy interview 15, proxy 18)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIn addition, the changing nature of values was highlighted as a complexity in ACP bp discussions:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;It\u0026rsquo;s true that to be able to work with the values of the person concerned, we agree. But right, as values change, it\u0026rsquo;s really complicated, right.\u0026rdquo; (Proxy interview 15, proxy 18)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003etherefore, highlighting the necessity of ensuring that the values discussed are still relevant to base anticipatory decisions upon.\u003c/p\u003e \u003cp\u003eIn addition to discussions about the resident\u0026rsquo;s life, values, and treatments that they would or would not be willing to accept, physicians noted the importance of clearly discussing the medical indications for specific treatments for older RACF residents who already have limited autonomy and likely multiple morbidities:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;We must be careful, too, before engaging, because if we have someone who is 97 years old and wants intensive care, it\u0026rsquo;s not certain that the hospital will provide it.\u0026rdquo; (Physician FG3, Physician 2)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003ein order to ensure that health care proxies make decisions based on the information that is pertinent to each resident.\u003c/p\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eDocumentation\u003c/h2\u003e \u003cp\u003eWhen asked about needs in terms of documentation, both RACF nurses and physicians indicated that a short, clear, and simple document is needed:\u003c/p\u003e \u003cp\u003e\u0026ldquo;short and simple [\u0026hellip;] it must be clear and able to be found\u0026rdquo; (Physician FG3, Physician 4)\u003c/p\u003e \u003cp\u003eHowever, the concise forms should be adaptable and able to be personalized, with explanations about the specific patients and the decisions made, including the general attitude and care goal due to the unpredictable nature of the decisions:\u003c/p\u003e \u003cp\u003e\u0026ldquo;P4: to leave space free for putting a\u0026hellip;.\u003c/p\u003e \u003cp\u003eP5:\u0026hellip; explanations..\u003c/p\u003e \u003cp\u003eP4 : personal explanations\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003eP5 : because I think that we need a general attitude - and then I think that we must anticipate specific cases when they are predictable and then everything is coherent, well, still to have some boxes for very particular cases if\u0026hellip; because \u0026hellip; it\u0026rsquo;s in a panic and then if it\u0026rsquo;s the night shift\u0026hellip; \u0026ldquo; (Physician FG 1, Physicians 4 and 5)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIn addition to a general attitude to treatment, participants raised the issue of decisions specific to the RACF setting, which is both a home and a care institution. This applies specifically in relation to decisions to hospitalise or not, and to the levels of care at the hospital:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;I don\u0026rsquo;t believe that we can predict everything in advance. I think that what is important is to have an idea of the general attitude and then after, well, if there is really a small detail and it\u0026rsquo;s not 3 am, we can re-discuss it when it comes up. But as you were saying it\u0026rsquo;s hospitalisation, not hospitalisation in case of emergency; it\u0026rsquo;s rare that we ask about resuscitation in the RACF.\u0026rdquo; (Physician FG 3, Physician 2)\u003c/p\u003e\u003cp\u003e\u0026ldquo;We can\u0026rsquo;t anticipate these types of.. it becomes too complex, in fact. But I agree that if we already have a general idea between hosp-\u0026hellip;. well, me, it\u0026rsquo;s intensive care \u0026lsquo;yes\u0026rsquo; or \u0026lsquo;no\u0026rsquo;, hospital \u0026lsquo;yes\u0026rsquo; or \u0026lsquo;no\u0026rsquo;, operate on a fracture \u0026lsquo;yes\u0026rsquo; or \u0026lsquo;no\u0026rsquo; and after I know around about the level, I want to say, but we are obliged to re-discuss [it] each time.\u0026rdquo; (Physician FG 3, Physician 1)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eAll parties reiterated the need for effective documentation of contact persons, both related to the reference person within the RACF and the health care proxies and people to contact if the health care proxy is unavailable, and for this information to be updated when changes occur:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;\u0026hellip;what do we do? So who do we call? \u0026lsquo;first we call me, then my sister\u0026rsquo; finally, so that they all agree and there is a sort of protocol like that.\u0026rdquo; (Physician FG 1, Physician 6)\u003c/p\u003e\u003cp\u003e\u0026ldquo;I see that in the RACF it changes, hey, the head nurse, it\u0026rsquo;s the third one, finally, right, it\u0026rsquo;s like that. So, we don\u0026rsquo;t know who the reference person is anymore.\u0026rdquo; (Proxy int 3, HCP 3)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eConditions/ general needs\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eTime\u003c/h2\u003e \u003cp\u003eWhile nurses and physicians expressed the need for more information about various facets of the resident\u0026rsquo;s life and care, they stated an overwhelming need for more time to be able to conduct meaningful planning. They expressed that it would be ideal to have a more structured planning process, and that this would help them in caring for residents as closely to their wishes as possible, but that they would need time for this specific task to be factored into their workweek. In addition, this would need to be billable. RACF health professionals also stated that ideally time for ACPbp should be factored into off-care work time so that they are able to give undivided attention to the task.\u003c/p\u003e \u003cdiv id=\"Sec10\" class=\"Section3\"\u003e \u003ch2\u003eACPbp facilitator\u003c/h2\u003e \u003cp\u003eIn relation to the people best placed to facilitate ACPbp in RACFs, nurses and physicians noted the importance of an interprofessional approach. They highlighted the role of the RACF nurses as people who have daily contact with the residents, and more regular contact with health care proxies, and who are able to make many observations about the dynamics between relatives and residents and also about the residents\u0026rsquo; preferences:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;The reference nurse is well placed to\u0026hellip; to start to talk about that because we must first discuss. We welcome the family, well, the resident and then the family [\u0026hellip;] so we have links to the family.\u0026rdquo; (Nurse FG 1, Nurse 5)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIt was noted that ACPbp would be best facilitated by a person who has more experience in the RACF, and more specialised training:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;The head nurses [of the ward] have more training, I find, in all that. And so\u0026hellip; and then dare a little more to assert themselves [\u0026hellip;] and conduct the interviews.\u0026rdquo; (Physician FG3, Physician 4)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eFurthermore, RACF nurses, due to their more consistent presence in the RACF, should be involved in ACPbp discussions to ensure better information transmission in case a decision is needed:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;You aren\u0026rsquo;t there the evenings, you\u0026rsquo;re not there the weekend, when you come one or two times per week, it\u0026rsquo;s still the carer who is there, who spends time with the health care proxy [\u0026hellip;] I believe that teamwork there is so absolutely necessary and is we have good teams\u0026hellip;\u0026rdquo; (Physician FG 3, Physician 3)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eDespite their concerns about how to find the time to include physicians and the added difficulty of coordinating ACP discussions in physician visits which are already very charged, both nurses and physicians highlighted the necessity of having physicians involved in such planning in order to firstly gain a better understanding of the residents\u0026rsquo; life, values, and preferences, and, secondly, in order to discuss the medically indicated options for future potential treatments:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;Me, I think that we could be more of a guide\u0026hellip; already in the explanation of medical terms or with the treating physician. Explain to them the treatments that we can do at the RACF\u0026rdquo; (Nurse FG 2, Nurse 5)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eInformation transmission\u003c/h2\u003e \u003cp\u003eAll parties expressed the need for efficient information transmission in order to ensure that ACPbp is useful in conveying a person\u0026rsquo;s presumed wishes for treatment. Storing the ACPbp securely and in a system that is accessible to all those requiring the information is key:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026ldquo;the number of times that we started the advanced directives, when I worked at the hospital (as a nurse), and then we said \u0026lsquo;but, he did an advanced directive, it\u0026rsquo;s at the RACF\u0026rsquo; [\u0026hellip;] We talk about a single medical file, an electronic record, all that, I find that it\u0026rsquo;s a shame that it\u0026rsquo;s not yet in place.\u0026rdquo; (Proxy interview 15, proxy 18)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThe themes identified in relation to needs for an ACPbp model related to the overall need for greater communication around care and treatment for people who no longer have medical DMC, the need for health care proxies to be accompanied through a reflection and decision-making process, and factors related to the specific details of an ACPbp intervention. These factors included: a standardised process, health professional training, discussion guides, and specific documentation. The highlighted need for specific documentation supports in der Schmitten et. al.\u0026rsquo;s calls for formal standards for advanced directives in nursing homes (\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). Several conditions which would need to be fulfilled for such an intervention to be useful were also identified; time to conduct planning discussions and people trained to facilitate this process. Such ACPbp models could provide families and health care proxies with clear information and opportunities to discuss future problems, thus responding to recent calls for increasing family awareness of treatment options via ACP (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e), thus reducing unwanted hospital transfers for RACF residents at EoL.\u003c/p\u003e \u003cp\u003eThe results of this study highlight need for standardised ACPbp documentation, and also stipulate the information that such as document should contain. The recommendations for ACPbp documentation are coherent with Malhotra\u0026rsquo;s (2021) recommendations that ACP discussions with caregivers of people with dementia should elicit general goals of EoL care, and also more specific decisions which arise commonly (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). However, this is only one aspect of the ACPbp process. Much attention was given to the need to develop discussion guides, thus reinforcing the importance of ACPbp as a relational process in which specific discussions conducted by specialised health care professionals are needed. By developing discussion guides which explore a resident\u0026rsquo;s presumed will, and discussing medical indication and treatment possibilities, ACPbp models can also provide the necessary tools for clinicians to carefully investigate and elicit caregiver \u0026lsquo;misconceptions regarding the illness and specific treatments\u0026rsquo; (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e) and thus reduce fears of making wrong decisions. Through specific discussion guides, ACPbp models may provide the focused training and for engaging in sensitive EoL planning discussions, which has been called for in previous research (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe results of this study also support the implementation of ACPbp in RACFs via an interprofessional team; reference nurses for their knowledge of the resident, and physicians in order to discuss medical indication and predictable health events. This model could go some way to alleviate the time-related stress that has been reported by physicians (\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e), thus reducing barriers to ACP initiation. However, further research is necessary to investigate the roles of people lacking DMC in this process and to develop specific recommendations for deciding on when to include these people in such discussions. Previous research has shown that while residents with dementia are grateful when involved in discussing their care, they had difficulty reporting what was discussed (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eThe aforementioned needs provide valuable information about the essential contents of ACPbp models for the RACF context, however, implementation strategies should consider the needs of RACF staff who need to engage in discussions which are emotionally laborious, with previous research noting a lack of support mechanisms in place to support staff conducting ACP discussions in RACF settings (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e). Readiness is a key factor in participation in standard ACP and is mentioned in the very definition of ACP (\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e). Readiness to participate in highly variable in the general population of older people and their health care proxies (\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e), thus stages of change models (\u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e) may be useful. It is therefore reasonable to hypothesise that readiness may play an important role for both health professionals conducting ACPbp (\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e) and health care proxies making decisions on behalf of their loved ones, and should thus be taken into consideration and used to adapt information provision. Many factors necessary for implementing ACP in nursing homes, such as selecting reference persons, information provision for all involved, mentoring, and models for ACP conversations and documents have also been identified (\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e).\u003c/p\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003eThis study was conducted in Switzerland, where an insurance-based health system dictates time allocated to specific treatments and consultations, and where individuals have a large liberty in choosing their health care providers. The needs identified in this study are thus partly a function of the health system, however they may also be applied to similar highly developed health systems. The participants in this study participated voluntarily, thus introducing a self-selection bias as they are likely to be health professionals and health care proxies who are interested and invested in the topic and therefore may have a more favourable view of the topic.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThis study has identified the needs for planning care of residents who no longer have DMC, from the perspectives of health care proxies, RACF nurses, and physicians. The need for standardised documentation, specifically trained health professionals, guides for ACPbp discussions, and the necessity of dedicated time to conduct ACPbp were highlighted. This information is valuable for the development of new models of ACPbp and accompanying all parties involved in this process.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cem\u003eEthics approval and consent to participate\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe Ethics Commission of the Canton of Vaud (Switzerland) assessed this project and waived the need for ethics approval as the project did not involve patients and did not involve medical data. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eConsent for publication\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eAll participants in this study completed a voluntary informed consent form. The data presented here are anonymised and coded in accordance with the consent form completed by participants. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAvailability of data and materials\u003c/em\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe datasets generated or analysed during the current study are not publicly available as these data are qualitative and publishing them may provide enough information to identify the participants. Selected extracts have been translated and anonymised for publication here. Data will be made available upon reasonable request from the corresponding author for the purposes of verification. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eCompeting interests\u003c/em\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe authors have no competing interests to declare. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eFunding\u003c/em\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis research was funded by the Chair of Geriatric Palliative Care, Lausanne University Hospital. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAuthors contributions\u003c/em\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eLJ: Designed the study, collected the data, analysed the data, prepared manuscript.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eRR: Designed the study, prepared manuscript.\u003c/p\u003e\n\u003cp\u003eFFA: Analysed the data, prepared the manuscript.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFR: Participated in data collection, analysed the data, reviewed the manuscript.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eERT: Designed the study, participated in data collection, reviewed the manuscript. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eRJJ: Designed the study, participated in the data collection, prepared the manuscript. \u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eAcknowledgements\u003c/em\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe authors wish to acknowledge the participants in this study for so generously giving their time and sharing their experiences.\u0026nbsp;\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eWorld Health Organization. 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Advance care planning in dementia: recommendations for healthcare professionals. BMC palliative care. 2018;17:1-17.\u003c/li\u003e\n\u003cli\u003eHarrison Dening K, Sampson EL, De Vries K. Advance care planning in dementia: recommendations for healthcare professionals. Palliative Care: Research and Treatment. 2019;12:1178224219826579.\u003c/li\u003e\n\u003cli\u003eGilissen J, Pivodic L, Smets T, Gastmans C, Vander Stichele R, Deliens L, et al. Preconditions for successful advance care planning in nursing homes: A systematic review. International journal of nursing studies. 2017;66:47-59.\u003c/li\u003e\n\u003cli\u003eBryant J, Sellars M, Waller A, Detering K, Sinclair C, Ruseckaite R, et al. Advance care planning participation by people with dementia: a cross-sectional survey and medical record audit. BMJ supportive \u0026amp; palliative care. 2022;12(e3):e464-e8.\u003c/li\u003e\n\u003cli\u003eMonnet F, Diaz A, Gove D, Dupont C, Pivodic L, Van den Block L. The perspectives of people with dementia and their supporters on advance care planning: A qualitative study with the European Working Group of People with Dementia. Palliative Medicine. 2024:02692163231219915.\u003c/li\u003e\n\u003cli\u003eJox RJ. Lost decisional capacity- lost chance of Advance Care Planning? Bioethica Forum. 2016;9(3):109-10.\u003c/li\u003e\n\u003cli\u003eVolicer L, Cantor MD, Derse AR, Edwards DM, Prudhomme AM, Gregory DCR, et al. Advance Care Planning by Proxy for Residents of Long‐Term Care Facilities Who Lack Decision‐Making Capacity. Journal of the American Geriatrics Society. 2002;50(4):761-7.\u003c/li\u003e\n\u003cli\u003eSong D, Yu T, Zhi S, Chang C, Sun J, Gao S, et al. Experiences and perspectives on the optimal timing for initiating advance care planning in patients with mild to moderate dementia: A Meta-synthesis. International Journal of Nursing Studies. 2024:104762.\u003c/li\u003e\n\u003cli\u003eJones L, Rhyner F, Rutz Voumard R, Figari Aguilar F, Rubli Truchard E, Jox RJ. \u0026ldquo;What Is the Most Important to Them?\u0026rdquo; Swiss Health Care Proxies, Nurses, and Physicians Discuss Planning Practices for Aged Care Residents Who No Longer Have Medical Decision-Making Capacity. Gerontology. 2024;70(2):173-83.\u003c/li\u003e\n\u003cli\u003ein der Schmitten J, Jox RJ, Pentzek M, Marckmann G. Advance care planning by proxy in German nursing homes: Descriptive analysis and policy implications. Journal of the American Geriatrics Society. 2021;69(8):2122-31.\u003c/li\u003e\n\u003cli\u003eSopcheck J, Tappen RM. Nursing home resident, family, and staff perspectives on hospital transfers for end-of-life care. OMEGA-Journal of Death and Dying. 2023;86(3):1046-68.\u003c/li\u003e\n\u003cli\u003eMalhotra C, Mohamad H, \u0026Oslash;stbye T, Pollak KI, Balasundaram B, Malhotra R, et al. Discordance between dementia caregivers\u0026rsquo; goal of care and preference for life-extending treatments. 2021.\u003c/li\u003e\n\u003cli\u003eSpacey A, Scammell J, Board M, Porter S. A critical realist evaluation of advance care planning in care homes. Journal of Advanced Nursing. 2021;77(6):2774-84.\u003c/li\u003e\n\u003cli\u003eSomal K, Foley T. General practitioners\u0026rsquo; views of advance care planning: a questionnaire-based study. Irish Journal of Medical Science (1971-). 2022:1-10.\u003c/li\u003e\n\u003cli\u003eGoossens B, Sevenants A, Declercq A, Van Audenhove C. Shared decision-making in advance care planning for persons with dementia in nursing homes: a cross-sectional study. BMC geriatrics. 2020;20(1):1-8.\u003c/li\u003e\n\u003cli\u003eSudore RL, Heyland DK, Lum HD, Rietjens JAC, Korfage IJ, Ritchie CS, et al. Outcomes that Define Successful Advance Care Planning: A Delphi Panel Consensus. J Pain Symptom Manage. 2017.\u003c/li\u003e\n\u003cli\u003eFried TR, Bullock K, Iannone L, O\u0026apos;leary JR. Understanding advance care planning as a process of health behavior change. Journal of the American Geriatrics Society. 2009;57(9):1547-55.\u003c/li\u003e\n\u003cli\u003eProchaska JO, Velicer WF. The transtheoretical model of health behavior change. American journal of health promotion. 1997;12(1):38-48.\u003c/li\u003e\n\u003cli\u003eKonno R, Inoue K, Matsushita Y, Hashimoto K, Wiechula R, To T, et al. Barriers to Advance Care Planning in Older Adults With Dementia, Their Families and Healthcare Professionals: An Umbrella Review of Qualitative Evidence. Research on Aging. 2024:01640275241227909.\u003c/li\u003e\n\u003cli\u003eGilissen J, Pivodic L, Gastmans C, Vander Stichele R, Deliens L, Breuer E, et al. How to achieve the desired outcomes of advance care planning in nursing homes: a theory of change. BMC geriatrics. 2018;18:1-14.\u003c/li\u003e\n\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-geriatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bgtc","sideBox":"Learn more about [BMC Geriatrics](http://bmcgeriatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bgtc/default.aspx","title":"BMC Geriatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Advance Care Planning, Health Care Proxy, Decision Making Capacity, Qualitative, Exploratory, Dementia","lastPublishedDoi":"10.21203/rs.3.rs-4943848/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4943848/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eWorldwide, populations are ageing. Together with improved home care and limited places in residential aged care facilities (RACF), this leads to people being admitted to RACF at more advanced ages and in increasingly fragile states of health, often with cognitive impairment. Advance directive completion rates are low, so many people are admitted to RACFs without having formally stated their wishes for care. Guidelines for advance care planning (ACP) in nursing homes exist, however they focus primarily on residents who maintain decision making capacity (DMC). Models are needed for people lacking DMC. We aimed to investigate the essential elements needed for ACP by proxy models (ACPbp) for RACF contexts.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003e We conducted a qualitative exploratory study into health care proxy, RACF nurse and physician needs for ACPbp models. We conducted semi-structured interviews with 19 health care proxies of 16 RACF residents lacking DMC, 3 focus groups with 23 RACF nurses and 3 focus groups with 13 physicians working in 9 RACFs.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eHealth care proxies expressed the need for structured, accompanied communication about residents\u0026rsquo; health state and potential future situations requiring decision-making. Nurses echoed this need, adding that they need specific training along with standardised processes and discussion guides for conducting ACPbp discussions, and standardised documentation. Physicians also mentioned the need for standardised processes and documentation to ensure efficient transfers between facilities and comprehensive documents in case of medical emergency. Such documents should be as short as possible, but also provide space to describe the resident\u0026rsquo;s values, life history and presumed will. Specifically trained personnel and time allocated specifically to ACPbp are key for implementation.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003e This study underscores the need for ACPbp in RACFs, gives broad guidelines and outlines the ethical frameworks for such a concept, by identifying the specific aspects necessary for the development of ACPbp models in this context.\u003c/p\u003e\u003ch2\u003eTrial Registration\u003c/h2\u003e \u003cp\u003eNot applicable\u003c/p\u003e","manuscriptTitle":"Proxy, nurse, and physician needs regarding advance care planning by proxy for aged care residents lacking decision making capacity: an exploratory study","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-09-23 11:08:39","doi":"10.21203/rs.3.rs-4943848/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-08-26T09:21:36+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-08-23T07:01:17+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-08-23T06:59:26+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Geriatrics","date":"2024-08-20T09:31:49+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-geriatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bgtc","sideBox":"Learn more about [BMC Geriatrics](http://bmcgeriatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bgtc/default.aspx","title":"BMC Geriatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"2cc3f7e6-cee7-48f6-9664-17cb08ea0e3d","owner":[],"postedDate":"September 23rd, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-09-29T16:04:49+00:00","versionOfRecord":{"articleIdentity":"rs-4943848","link":"https://doi.org/10.1186/s12877-025-06354-1","journal":{"identity":"bmc-geriatrics","isVorOnly":false,"title":"BMC Geriatrics"},"publishedOn":"2025-09-26 15:58:21","publishedOnDateReadable":"September 26th, 2025"},"versionCreatedAt":"2024-09-23 11:08:39","video":"","vorDoi":"10.1186/s12877-025-06354-1","vorDoiUrl":"https://doi.org/10.1186/s12877-025-06354-1","workflowStages":[]},"version":"v1","identity":"rs-4943848","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4943848","identity":"rs-4943848","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}