Preferences For Future Care Research Articles

Advance Care Planning: A Retrospective Audit in a National Referral Center for Interstitial Lung Diseases.

Idiopathic and progressive pulmonary fibrosis (IPF/PPF) of known cause are relatively rare lung diseases with a limited survival time after diagnosis. Conscious attention for palliative care is recommended. Optimal care requires collaboration to define goals and preferences for future medical treatment and care with the patient and their families, to inform (or enable) Advance Care Planning (ACP). To get insight into the frequency of key elements of ACP described after dialogues with patients with IPF/PPF. A retrospective audit included charts of patients with IPF/PPF who died between December 2017 and December 2020. A data extraction model was developed based on a guideline for patient federation and wider literature and finally consisted of fourteen key elements. Subsequently content analysis was performed. The medical charts of 60 patients showed that an element of ACP was recorded in 57(95%) of cases. No medical chart contained all fourteen key elements of ACP. Most frequently recorded ACP elements were: knowledge of illness, goals of treatment and care and fears and concerns. The lack of structural implementation of ACP in the care for patients with interstitial lung disease, results in only some elements of ACP being dialogued by health care professionals (HCP). These notes recorded are often superficial and reflect the view of the HCP. Implementation of ACP conversations and structured documentation is needed to gain better insight into the wishes and preferences of the patient.

Definition and recommendations of advance care planning: A Delphi study in five Asian sectors.

In Confucian-influenced Asian societies, explicit end-of-life conversations are uncommon and family involvement in decision-making is crucial, which complicates the adoption of culturally sensitive advance care planning. To develop a consensus definition of advance care planning and provide recommendations for patient-centered and family-based initiatives in Asia. A five-round Delphi study was performed. The rating of a definition and 84 recommendations developed based on systematic reviews was performed by experts with clinical or research expertise using a 7-point Likert scale. A median = 1 and an inter-quartile range = 0-1 were considered very strong agreement and very strong consensus, respectively. The Delphi study was carried out by multidisciplinary experts on advance care planning in five Asian sectors (Hong Kong/Japan/Korea/Singapore/Taiwan). Seventy-seven of 115 (67%) experts rated the statements. Advance care planning is defined as "a process that enables individuals to identify their values, to define goals and preferences for future medical treatment and care, to discuss these values, goals, and preferences with family and/or other closely related persons, and health-care providers, and to record and review these preferences if appropriate." Recommendations in the domains of considerations for a person-centered and family-based approach, as well as elements, roles and tasks, timing for initiative, policy and regulation, and evaluations received high levels of agreement and consensus. Our definition and recommendations can guide practice, education, research, and policy-making in advance care planning for Asian populations. Our findings will aid future research in crafting culturally sensitive advance care planning interventions, ensuring Asians receive value-aligned care.

Advance Care Planning Practices For Nursing Home Residents Referred To Specialist Palliative Care In An Acute Hospital Setting

Abstract Background Advance care planning (ACP) is a structured process of discussion between patients, their loved ones and health care professionals, which aims to establish and record an individual’s goals and preferences for future medical treatment and care. It is of significant relevance to nursing home residents, a comorbid and frail population at high risk of clinical deterioration. Methods This prospective, observational study included all nursing home residents referred to an inpatient specialist palliative care (SPC) service in a model four hospital over a six-month period (November 2023 to May 2024). Basic clinical and demographic information as well as data on functional status and advance care planning was anonymised and collated using Microsoft excel. Results 36 patients (mean age 79 years) were recruited. 36% (n=13) were referred within 48 hours of admission. The average Australia-modified Karnofsky Performance Scale score was 40 on admission. 94% (n=34) had a clinical frailty score of ≥7 on admission. 72% (n=26) had an advance care plan in the nursing home. However, 22% (n=8) had not recorded their wishes pertaining to hospital readmission and 3 patients were admitted despite documenting a preference to remain in the nursing home. 53% (n=19) had not documented their preferred place for end-of-life care. 69% (n=25) died in hospital. Conclusion Most nursing home residents referred to the inpatient SPC team had severe frailty and died in hospital, reflecting the prognostic implications of severe frailty. Crucial components of the advance care plan were omitted in a significant proportion of patients, which may have influenced their referral to hospital. Provision of increased support to staff caring for older, frail adults in the residential care setting should be considered to enhance ACP.

Palliative care in advanced pulmonary fibrosis.

Updated clinical practice guidelines for pulmonary fibrosis recommend early integrated palliative care using a primary palliative approach. Clinicians need to be aware of the various palliative interventions in order to implement guidelines' recommendations. This review provides an update on evidence-based palliative therapies. Literature review indicates early integration of palliative care in pulmonary fibrosis is feasible and meets patient needs. Key components of a primary palliative approach include comprehensive symptoms and needs screening, systematic symptom management using nonpharmacologic interventions, supplemental oxygen and opioids for dyspnea and cough. Patient-centered communication is essential for successful integration of palliative care. Early, iterative advance care planning in clinic to understand patient goals, values and preferences for current and future care, improves patient care and satisfaction. Prioritizing caregiver inclusion in clinics can address their needs. Collaborating with a multidisciplinary allied team facilitates integration of palliative care and supports patients throughout the disease course. Different models of palliative care delivery exist and can be adapted for local use. The use of artificial intelligence algorithms and tools may improve care and continuity. Clinicians must develop competency in palliative care. Organizational and policy support is essential to enable seamless integration of palliative care throughout the care continuum.

An Online Visual Elicitation Tool to Facilitate Conversations About Supportive Care in the Context of Cognitive Impairment.

Older adults with dementia are often left out of decision-making about their care. We developed and evaluated the use of an online visualization tool to foster discussions about future care preferences. The study provides valuable insights on methods for facilitating conversations about complex topics in the context of cognitive decline.

Nurse-Led Advance Care Planning in Adults in the U.S.- A Scoping Review.

Advance care planning involves discussing individuals' future medical treatment and care preferences. Nurses, due to their close relationships with patients and families, may be well-positioned to lead these discussions. Exploring the components and characteristics of nurse-led ACP interventions is essential for enhancing their implementation, effectiveness, and sustainability. This scoping review aimed to explore the characteristics of nurse-led ACP interventions in adult patients, identify the populations and settings where these interventions have been utilized, and the outcomes of these interventions in the U.S. A scoping review was conducted following Arksey and O'Malley's five-stage framework. Using keywords related to nurse-led ACP interventions, a comprehensive search was performed across PubMed, Web of Science, CINAHL, EMBASE, and PsycINFO databases. Twelve studies met the inclusion criteria. These studies were conducted in varied settings. Registered nurses, oncology nurse navigators, and other specialized nurses primarily delivered nurse-led ACP interventions. The interventions ranged from one to two sessions and utilized various models and resources such as the Five Wishes and Respecting Choices. Nurse-led ACP interventions have shown significant positive outcomes, including increased engagement in ACP, improved attitudes towards ADs, higher completion rates of ADs, and enhanced patient-surrogate congruence. These interventions are well-received by patients and can be implemented in diverse settings. However, a general guideline regarding nurse-led ACP interventions is needed to address the specific duration, sessions, and mode of delivery required for their optimal effectiveness.

Experiences with a national team-based learning program for advance care planning in pediatric palliative care

BackgroundAdvance Care Planning (ACP) enables patients and relatives to define and share values, goals and preferences for future medical treatment and care. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT), developed in the Netherlands, is a method for conducting ACP in pediatric palliative care. Healthcare professionals who were trained to use IMPACT, indicated their need for ongoing support to practice ACP communication skills optimally over time. Therefore, we developed a team-based learning program aimed at teaching participants how to transfer knowledge on ACP, continue practicing ACP communication skills and reflect on ACP conversations within their own team context. The aim of this study was to evaluate the program’s transfer of knowledge as well as the professionals’ experience and team reflection on ACP.MethodsA one-day IMPACT train-the-trainer course was developed and a selection of healthcare professionals (facilitators) from pediatric palliative care teams (PPCTs) from all seven Dutch university hospitals and the specialized Center for Pediatric Oncology were invited to participate. Hereafter, facilitators were asked to transfer their course-acquired knowledge to their team members (learners) by organizing two coaching-on-the-job sessions. A mixed-methods design, combining questionnaires and field notes, was used to evaluate the level of knowledge transfer and team reflection achieved.ResultsEighteen healthcare professionals in the role of facilitator participated in the train-the-trainer course. In seven PPCTs one (n = 3) or two (n = 4) coaching-on-the-job session(s) took place, attended by 29 and 17 learners, respectively. In the questionnaires, 11 facilitators indicated that they had to some extent transferred acquired knowledge to their team members as intended. Sixteen out of 21 learners who participated in at least one coaching-on-the-job session, reported (somewhat) increased self-confidence for conducting ACP conversations. The reported main strength of the program was practicing with/learning from colleagues whereas dealing with workload and variation in existing ACP skills within PPCTs need more attention.ConclusionsThe newly developed team-based learning program resulted in intended transfer of knowledge and methodical reflection on ACP in coaching-on-the-job sessions in most participating PPCTs. Planning coaching-on-the-job sessions regarding ACP in pediatric palliative care with multiple healthcare professionals is challenging and needs more emphasis in the training.

Experiences of telehealth during and after the COVID-19 pandemic and preferences for future care of people with systemic sclerosis: a cross-sectional study

Experiences of telehealth during and after the COVID-19 pandemic and preferences for future care of people with systemic sclerosis: a cross-sectional study

Desired dementia care towards end of life: Development and experiences of implementing a new approach to improve person‐centred dementia care

AbstractAimsTo describe the co‐creation of the ‘Desired Dementia Care Towards End of Life’ (DEDICATED) approach to improve person‐centred palliative care for individuals with dementia and to describe the experiences of healthcare professionals during the approach's implementation.MethodsA needs assessment, comprising both qualitative and quantitative studies, informed palliative care needs of healthcare professionals, family caregivers and individuals with dementia. The approach was co‐created with healthcare and education professionals, guided by the findings. Then, healthcare professionals were trained to implement the approach in their organizations. From April to June 2022, semi‐structured interviews with actively engaged professionals were analysed using Conventional Content Analysis.ResultsThe needs assessment yielded six key themes: (1) raising palliative care awareness, (2) familiarization with a person with dementia, (3) communication about future care preferences, (4) managing pain and responsive behaviour, (5) enhancing interprofessional collaboration in advance care planning and (6) improving interprofessional collaboration during transitions to nursing homes. Interviews with 17 healthcare professionals revealed that active involvement in co‐creating or providing feedback facilitated implementation. Overall, the DEDICATED approach was perceived as a valuable toolkit for optimizing palliative care for people with dementia and their loved ones.ConclusionCo‐creating the DEDICATED approach with healthcare professionals facilitated implementation in daily practice. The approach was considered helpful in enhancing person‐centred palliative dementia care.Impact StatementThis study underscores the importance of active involvement of healthcare professionals in the research and development of new interventions or tools for palliative care, which can influence the successful implementation, dissemination and sustained usage of the developed tools.Implications for the Profession and Patient CareThe developed approach can improve person‐centred palliative care for individuals with dementia, ultimately improving their quality of life and that of their loved ones.Reporting MethodThis study used the Consolidated Criteria for Reporting Qualitative Research.Patient of Public ContributionNo patient or public contribution.

Clinicians’ experiences implementing an advance care planning pathway in two Canadian provinces: a qualitative study

BackgroundAdvance care planning (ACP) is a process which enables patients to communicate wishes, values, fears, and preferences for future medical care. Despite patient interest in ACP, the frequency of discussions remains low. Barriers to ACP may be mitigated by involving non-physician clinic staff, preparing patients ahead of visits, and using tools to structure visits. An ACP care pathway incorporating these principles was implemented in longitudinal generalist outpatient care, including primary care/family medicine and general internal medicine, in two Canadian provinces. This study aims to understand clinician experiences implementing the pathway.MethodsThe pathway was implemented in one family practice in Alberta, two family practices in British Columbia (BC), and one BC internal medicine outpatient clinic. Physicians and allied health professionals delivered structured pathway visits based on the Serious Illness Conversation Guide. Twelve physicians and one social worker participated in interviews or focus groups at the end of the study period. Qualitative data were coded inductively using an iterative approach, with regular meetings between coders.ResultsClinicians described experiences with the ACP care pathway, impact at the clinician level, and impact at the patient level. Within each domain, clinicians described barriers and facilitators experienced during implementation. Clinicians also reflected candidly about potential for future implementation and the sustainability of the pathway.ConclusionsWhile the pathway was implemented slightly differently between provinces, core experiences were that implementation of the pathway, and integration with current practice, were feasible. Across settings, similar themes recurred regarding usefulness of the pathway structure and its tools, impact on clinician confidence and interactions with patients, teamwork and task delegation, compatibility with existing workflow, and patient preparation and readiness. Clinicians were supportive of ACP and of the pathway.Trial registrationThe study was prospectively registered with clinicaltrials.gov (NCT03508557). Registered April 25, 2018. https://classic.clinicaltrials.gov/ct2/show/NCT03508557.

A Personalized and Interactive Web-Based Advance Care Planning Intervention for Older Adults (Koda Health): Pilot Feasibility Study.

Advance care planning (ACP) is a process that involves patients expressing their personal goals, values, and future medical care preferences. Digital applications may help facilitate this process, though their use in older adults has not been adequately studied. This pilot study aimed to evaluate the reach, adoption, and usability of Koda Health, a web-based patient-facing ACP platform, among older adults. Older adults (aged 50 years and older) who had an active Epic MyChart account at an academic health care system in North Carolina were recruited to participate. A total of 2850 electronic invitations were sent through MyChart accounts with an embedded hyperlink to the Koda platform. Participants who agreed to participate were asked to complete pre- and posttest surveys before and after navigating through the Koda Health platform. Primary outcomes were reach, adoption, and System Usability Scale (SUS) scores. Exploratory outcomes included ACP knowledge and readiness. A total of 161 participants enrolled in the study and created an account on the platform (age: mean 63, SD 9.3 years), with 80% (129/161) of these participants going on to complete all steps of the intervention, thereby generating an advance directive. Participants reported minimal difficulty in using the Koda platform, with an overall SUS score of 76.2. Additionally, knowledge of ACP (eg, mean increase from 3.2 to 4.2 on 5-point scale; P<.001) and readiness (eg, mean increase from 2.6 to 3.2 on readiness to discuss ACP with health care provider; P<.001) significantly increased from before to after the intervention. This study demonstrated that the Koda Health platform is feasible, had above-average usability, and improved ACP documentation of preferences in older adults. Our findings indicate that web-based health tools like Koda may help older individuals learn about and feel more comfortable with ACP while potentially facilitating greater engagement in care planning.

Exploration of decision aids to support advance care planning: A scoping review.

Advance care planning is a process through which people communicate their goals and preferences for future medical care. Due to the complexity of the decision-making process, decision aids can assist individuals in balancing potential benefits and risks of treatment options. While decision aids have the potential to better promote advance care planning, their characteristics, content and application effectiveness are unclear and lack systematic review. Therefore, we aimed to explore these three aspects and establish a foundation for future research. Scoping review. This scoping review adheres to the framework proposed by Arksey and O'Malley and the PRISMA-ScR list. Six English-language databases were systematically searched from the time of construction until 1 December 2023. Two researchers conducted the article screening and data extraction, and the extracted data was presented in written tables and narrative summaries. Of the 1479 titles and abstracts, 20 studies fulfilled the inclusion criteria. Types of decision aids were employed, mainly websites and videos. Decision aid's primary components center around 11 areas, such as furnishing information, exploring treatment and care preferences. The main manifestations were a significant increase in knowledge and improved recognition of patients' target value preferences. Among the aids, websites and videos for advance care planning have relatively high content acceptability and decision-making process satisfaction, but their feasibility has yet to be tested. Decision aids were varied, with content focused on describing key information and exploring treatment and care preferences. Regarding application effects, the aids successfully facilitated the advance care planning process and improved the quality of participants' decisions. Overall, decision aids are efficient in improving the decision-making process for implementing advance care planning in cancer and geriatric populations. In the future, personalised decision aids should be developed based on continuous optimization of tools' quality and promoted for clinical application. The paper has adhered to the EQUATOR guidelines and referenced the PRISMAg-ScR checklist. This is a review without patient and public contribution. https://doi.org/10.17605/OSF.IO/YPHKF, Open Science DOI: 10.17605/OSF.IO/YPHKF.

Validating care and treatment scenarios for measuring decisional conflict regarding future care preferences among older adults.

Decisional conflict is used increasingly as an outcome measure in advance care planning (ACP) studies. When the Decisional Conflict Scale (DCS) is used in anticipatory decision-making contexts, the scale is typically tethered to hypothetical scenarios. This study reports preliminary validation data for hypothetical scenarios relating to life-sustaining treatments and care utilisation to inform their broader use in ACP studies. Three hypothetical scenarios were developed by a panel of multidisciplinary researchers, clinicians and community representatives. A convenience sample of 262 older adults were surveyed. Analyses investigated comprehensibility, missing data properties, sample norms, structural, convergent and discriminant validity. Response characteristics suggested that two of the scenarios had adequate comprehensibility and response spread. Missing response rates were unrelated to demographic characteristics. Predicted associations between DCS scores and anxiety (r's = .31-.37, p < .001), and ACP engagement (r's = -.41 to -.37, p < .001) indicated convergent validity. A substantial proportion of older adults reported clinically significant levels of decisional conflict when responding to a range of hypothetical scenarios about care or treatment. Two scenarios showed acceptable comprehensibility and response characteristics. A third scenario may be suitable following further refinement. The scenarios tested here were designed in collaboration with a community representative and were further piloted with two groups of community members with relevant lived experiences; four people with life-limiting conditions and five current or former care partners.

The trajectory of prognostic cognition in patients with advanced cancer: is the traditional advance care planning approach desirable for patients?

Most patients with advanced cancer initially express a desire to be informed of their prognosis, and prognostic discussions between patients and their oncologists can trigger the subsequent trajectory of prognostic cognitions. On the continuum of prognostic cognition, including inaccurate/accurate prognostic awareness (awareness of incurability of cancer, terminal nature of illness or life expectancy) and prognostic acceptance (accepting one's prognosis), patients' perceptions of being informed of their prognosis by oncologists and patients' coping strategy for serious medical conditions regulate prognostic cognitions. However, nearly half of the patients with advanced cancer have poor prognostic awareness, and few patients achieve prognostic acceptance. These phenomena partly act as barriers to participation in advance care planning. When oncologists engage in advance care planning conversations, they must assess the patient's prognostic cognition and readiness for advance care planning. Considering the inaccurate prognostic awareness in a non-negligible proportion of patients and that astatic patients' preferences for future treatment and care are influenced by prognostic cognition, more research on decision-making support processes for high-quality and goal-concordant end-of-life care is needed along with research of advance care planning. In addition to making decisions regarding future medical treatment and care, oncologists must engage in continuous and dynamic goal-of-care conversations with empathic communication skills and compassion from diagnosis to end-of-life care.

Shared decision-making in pediatric palliative care in the Netherlands

Shared decision-making (SDM) is a process in which health care professionals (HCPs) involve parents and children - when appropriate- to decide together on future treatment. These decisions are based on values that are important for the family, goals of care and preferences for future care and treatment. Elucidation of these values and preferences is preferably done early in the disease trajectory via so-called Advance Care Planning (ACP) conversations.In the Netherlands, ACP and SDM are being adopted by most health care professionals. This has happened only recently. Ten years ago, ACP and SDM were unknown concepts for the vast majority of Dutch HCPs. Today, interest in these conversational approaches is booming in both daily practice and in research.This rise has been reinforced by two recent major advancements in Dutch pediatric palliative care: the Individual Care Plan (ICP) and the Dutch Evidence-Based Guideline on Pediatric Palliative Care (DGPPC).Despite this positive evolution, a lot of work is still ahead. ACP and SDM demand a change in mindset from the traditional paternalistic approach by which the HCP ‘knows what is best for this child’ to a more humble and open approach in which (non-medical) factors that are important to the child and family and may influence the final treatment decision. Such changes in mindset don't happen overnight.In this article we describe the situation of pediatric palliative care in the Netherlands, with focus on the recent evolution of ACP and SDM.

Exploring the Role of Nurses in Advance Care Planning Within Long-Term Care Homes: A Qualitative Study.

Residents in long-term care homes (LTCHs) are often diagnosed with chronic, life-limiting illnesses, and it is now a common site to provide high levels of care and eventual death. There is an urgent need to address communication gaps and uncertainties surrounding resident's end of life preferences. Nurses are well situated to be key facilitators of necessary advance care planning (ACP), ensuring residents have discussions with family, substitute decision-makers and healthcare providers regarding future health and personal care preferences. However, LTCHs present unique challenges for nurses due to not only complex comorbidities but also staffing dynamics. This study explored the experiences and perceptions of Registered Nurses (RNs) and Registered Practical Nurse (RPNs) in LTCHs regarding their role in engaging residents and families in ACP discussions. Qualitative interpretive descriptive methodology was used. Data were collected from two LTCHs in Southern Ontario with a sample of 15 nurses (7 RNs and 8 RPNs). Analysis involved review of semistructured interviews, field notes, and utilizing constant comparison within an inductive approach. Power and authority dynamics in LTCH's was an overarching theme in the data, with four subthemes: (1) Nurses lacking clarity about ACP, (2) nurses' uncertainty regarding their role in ACP, (3) nurses feeling uncomfortable engaging in ACP discussions, and (4) nurses struggling to support families in ACP discussions. Recommendations for nurses, healthcare providers, LTCH administrators, and policy makers include: (1) development of policies which support, from a systemic level, nurses to feel safe while engaging in ACP; (2) reassessing LTCH's hierarchical structure, and clarifying RN, RPN, and interdisciplinary team members roles in ACP; (3) developing culture change that allows a team and person-centered approach to ACP; and (4) providing ongoing education and mentorship for nurses to manage family dynamics and expand their understanding of ACP beyond a biomedical lens.

PRAGMATIC IMPLEMENTATION OF AN ADVANCE CARE PLANNING INTERVENTION: FINDINGS FROM SHARING CHOICES

Abstract Advance care planning (ACP) is defined as a key task in ambulatory care for patients to share values, goals, and preferences for future medical care. Ideally ACP is revisited throughout the course of serious illness and engages family in discussions with clinicians. Most interventions, however, have not targeted primary care as a setting for ACP but have instead targeted a specific illness, conversation or setting such as the inpatient hospital or nursing home. Additionally, family is often not included in ACP discussions. This symposium will discuss critical components of the SHARING Choices cluster-randomized pragmatic trial, including the setup, monitoring, and analysis of this intervention within two primary care health systems located in the Baltimore-Washington DC metropolitan corridor. Each presenter will discuss key efforts conducted during the trial that highlight challenges, lessons learned, and novel approaches of embedding an evidence-based intervention within usual care settings targeting older adults 65 years of age and older. Preliminary analyses indicate that the ACP intervention was highly effective for increasing the likelihood of having advance directives in the patients’ electronic health records within 1-year of intervention initiation (odds ratio = 2.88, p &amp;lt; 0.001). Attendees of this symposium will take away relevant insights for implementing effective ACP and communication interventions within primary care settings as well as supporting outcome data. Our discussant will provide thoughts on the implications of these results for current primary care organizations and in the field of ACP and communication for older adults including those with dementia.

A patient’s perspective on care decisions: a qualitative interview study

Background and ObjectivesDiscussing treatment wishes and limitations during medical consultations aims to enable patients to define goals and preferences for future care. Patients and physicians, however, face multiple barriers, resulting in postponing or avoiding the conversation. The aim of this study was to explore an internal medicine outpatient clinic population’s perception on (discussing) treatment wishes and limitations.MethodsSemi-structured interviews were conducted in two rounds with 44 internal medicine outpatient clinic patients at the University Medical Centre Utrecht, a tertiary care teaching medical centre in the Netherlands. Interviews were transcribed verbatim and thematically analysed with a phenomenological approach and inductive, data-driven coding.ResultsFour themes were identified, two (1–2) represent a deep conviction, two (3–4) are practically oriented: (1) patients associate treatment wishes and limitations with the end-of-life, making it sensitive and currently irrelevant, (2) patients assume this process leads to fixed choices, whilst their wishes might be situation dependent, (3) treatment wishes and limitations are about balancing whether a treatment ‘is worth it’, in which several subthemes carry weight, (4) the physician is assigned a key role.Conclusion and practice implicationsThe themes provide starting points for future interventions. It should be emphasized that care decisions are a continuous, dynamic process, relevant at any time in any circumstance and the physician should be aware of his/her key role.

Perspectives of people with young-onset dementia on future quality of life: a qualitative interview study with implications for advance care planning

Introduction:Advance care planning (ACP), one of the key domains of palliative care, enables individuals to define and discuss goals and preferences for future treatment and care with family and healthcare professionals. By exploring the views of people with dementia on quality of life now and in the future, including the end of life, care provisions can be tailored to their values. The perspectives of people with young-onset dementia (YOD), with a symptom onset before the age of 65, may differ from those of older people with dementia given the different life phase and family context. Qualitative research methods can be used to elicit the attitudes and beliefs to generate insight into their perspectives.Methods:Qualitive study, as part of the Care4Youngdem-study, using semi-structured interviews with a criterion-based purposive sample of community-dwelling people with YOD (n=10) and their (family) caregivers in the Netherlands. We adapted the interview guide based on discussion of the transcripts. Double coding of three interviews resulted in a codebook. The codes were subsequently analysed through thematic analysis.Results:Interviews took place between December 2019 and February 2022. The most prevalent dementia subtype was Alzheimer’s (n=7). Four overarching themes, based on 21 categories, were derived from the interviews: (1) connectedness with others, (2) sense of dignity, (3) acceptance versus no acceptance of the impact of dementia, (4) concerning oneself with the future versus not wishing to concern oneself with the future. Connectedness with others and a sense of dignity were deemed prerequisites for (future) quality of life but were affected by YOD. These themes overlapped in terms of axial codes. Ambiguities were seen in the attitude towards the impact of YOD and the preparation for the future. The degree of acceptance of YOD affected the orientation towards the future.Discussion:Family and professional caregivers should discuss with people with YOD how to maintain connectedness with others and a sense of dignity. Opposite ways of coping with the present and future were found. Professional caregivers should take personal coping styles into account when starting ACP conversations.

293 Advance Care Planning in older persons mental health, insights from interdisciplinary healthcare professionals

Abstract Background Later life can be time where older persons face increasing health challenges and major decisions relating to future care. ‘Advance Care Planning’ (ACP) refers to a process of discussion and reflection about a person’s values, goals, and preferences for future care in case they lose the capacity to make decisions and communicate these in the future. The aim of this three-stage action research study is to collaboratively explore the perceptions and understanding of interdisciplinary team members and attendees of Mental Health Services for Older Persons (MHSOP) and their family carers in relation to ACP and to identify ways of improving decision-making practice considering the newly commenced Assisted Decision-Making (Capacity) Act (2015). Methods This presentation focuses on findings from stage one, which involved a survey administered via survey monkey, 3 focus groups and a feedback session with 22 interdisciplinary team members of a MHSOP from the fields of nursing, occupational therapy, psychology, psychiatry, and social work. Results Whilst there is already a culture of facilitating ACP with service users and their family carers within the MHSOP, however this is not routine practice. While clinicians largely recognised the value of ACP, 95% reported a lack of education, 52% a lack of knowledge of ACP tools, and limited experience in engaging with service users (53%) and family carers (47%). Identified barriers to engagement included lack of allocated time, clinician’s confidence, capacity issues and ‘a dedicated pathway across services with joined up conversation’. Conclusion Interdisciplinary professionals overwhelmingly recognised the importance of ACP with service users and family carers, and the positive impact ACP can have on end-of-life care. All indicated an eagerness for additional ACP guidelines and skills training for MHSOP staff.