Perspectives on advance care planning (ACP) and the perceived roles of healthcare professionals in ACP can differ across cultural and national contexts. As part of a larger study, a theoretical framework of the fundamentals (important aspects) of end-of-life communication by nursing staff with older people was previously developed. We aimed to refine and achieve consensus in an international context on the theoretical framework of end-of-life communication by nursing staff as part of ACP with older people.

A 2-round online Delphi study was conducted with experts in palliative care, care for older people, end-of-life communication, and nursing. Participants evaluated the importance and clarity of the framework’s 20 fundamentals (e.g., self-efficacy, using intuition, and being silent) using a 4-point Likert scale and suggested improvements.

In the first round, 48 experts from 15 countries participated, and 46 in the second. Most had nursing or research backgrounds and lived in Europe. All fundamentals were refined based on the experts’ feedback, which focused on the fundamentals’ applicability to diverse individuals and their suitability for both formal and informal conversations. Consensus with high agreement (≥90%) was reached on 17 fundamentals and consensus with agreement (≥80%) on 2. Two agreed-upon fundamentals were combined into 1.

This study resulted in a refined theoretical framework with broad applicability across diverse individuals and contexts. It deepens understanding of end-of-life communication, provides guidance for nursing staff, and informs education and research. Further research is needed to confirm validity beyond Europe and to inform implementation.

Advance care planning (ACP) engagement remains low among culturally and linguistically diverse populations, including immigrant communities, where cultural norms, family expectations, and migration may shape attitudes toward healthcare decision-making. Although Thai immigrants represent a growing population in Australia, little is known about how migration influences their perceptions of and readiness for ACP. This study aimed to explore how Thai immigrants in Australia perceive and engage in ACP within a new social and healthcare context.

A qualitative descriptive phenomenological study was conducted in Victoria, Australia. Seventeen Thai immigrants were recruited through purposive and snowball sampling via Thai community networks. Semi-structured interviews were conducted in Thai or English, audio-recorded, transcribed, translated, and analyzed using reflexive thematic analysis informed by phenomenological techniques.

Four key themes were constructed through reflexive thematic analysis of the interviews: (1) the “old Thai way,” characterized by family-centered decision-making, deference to authority, and avoidance of death-related discussions; (2) migration as a disruptive force, with exposure to autonomy-based healthcare prompting reflection and adaptation; (3) tension between cultural values, highlighting challenges in balancing filial obligation with individual autonomy; and (4) reconstructing belief systems, wherein participants developed hybrid identities, integrating Thai and Australian values.

Migration disrupts traditional Thai norms surrounding family roles, communication, and decision-making, thereby reshaping how participants understand and approach readiness for ACP. Thai immigrants reinterpret family roles, faith, and autonomy within a new cultural context, emphasizing the need for culturally responsive ACP approaches that respect family influence, indirect communication, and the role of community mediators.

Advance care planning (ACP), including end-of-life (EOL) conversations, helps frail older persons articulate goals and preferences for future treatments and care, ultimately enhancing quality of life. Nevertheless, a substantial gap exists between the many who wish to engage in such conversations and the minority who currently do so. To support earlier and broader engagement, we explored frail community-dwelling older persons’ perspectives and attitudes regarding ACP and EOL discussions.

We conducted a qualitative, purposively sampled, interview study of frail community-dwelling older persons (N = 16), identified from Dutch general practices. We analyzed the transcripts using reflexive thematic analysis.

We developed 5 themes regarding ACP and EOL conversations: (1) Personal identity as the foundation for ACP and EOL decision-making: personal values strongly shaped EOL preferences and decision-making; (2) external factors – including lived experiences, the social environment, and information channels – influenced EOL perspectives; (3) attitudes and motivations shaped engagement with ACP and EOL conversations, ranging from active engagement to reluctance; (4) organization and conditions of ACP and EOL conversations: the content of conversations varied across conversation partners; and (5) expectations regarding involvement of others in ACP, including EOL conversations: participants expressed a need for proximity to family, close friends, and healthcare professionals and for these others to be involved and take responsibility in supporting decision-making.

When asked about ACP, participants focused predominantly on preferences and expectations regarding EOL care and the period surrounding death. These reflections, grounded in personal values and identity, were most often shared with family and close friends and less frequently with healthcare professionals. These findings highlight the central role of informal networks in ACP communication, suggesting that healthcare professionals should actively involve these networks in ACP discussions and decision-making. Furthermore, ACP conversations may benefit from starting from persons’ underlying values and their priorities in life.

Antiretroviral therapy has transitioned human immunodeficiency virus (HIV) into a manageable chronic condition. As such, advance care planning is critical to providing patient-centered care for aging persons with HIV. The objectives of the study were to determine the proportion of adults living with HIV in Southern Alberta with a documented goals of care designation and explore factors influencing this documentation.

This was a cross-sectional study conducted at Southern Alberta HIV Clinic in Alberta, Canada. Participants were adults ≥18 years receiving HIV care during the study period (January 1, 2022, and December 31, 2023). Age, sex, family physician status, emergency department (ED) visits, hospitalizations, and goals of care documentation were extracted from the electronic health record. Descriptive statistics and chi-square tests were used to analyze associations.

Ten percent (255/2567) of adults with HIV had a goal of care documentation in the electronic health record. Documentation did not differ by age, sex, or family physician status. Among patients with an ED visit in the prior year, 21% (225/1065) had a goal of care documentation compared to 2% of those without (p < 0.0001). Among those hospitalized in the prior year, 56% (203/364) had a goal of care documentation, compared to 2% of those without (p < 0.0001).

A minority of adults living with HIV had a goal of care documentation.. These findings highlight missed opportunities and areas for improvement for advanced care discussions. There is an urgent need to enhance advanced care planning in this population.

Advance care planning (ACP) involves nuanced conversations to elicit an individual’s beliefs, values, and preferences regarding future care. However, despite recognition of the positive impact, representative population surveys indicate low uptake of ACP, figures replicated internationally. Complex medical issues, including cognitive impairment, can interact with and exacerbate mental health challenges in later life, which can make decision-making more complex. ACP and Advance Healthcare Directives support people during periods of incapacitating mental illness. This paper reporting on the first stage of an action research study exploring ACP from the perspective of interdisciplinary mental healthcare professionals in the context of Older Person’s Mental Health, took place in the dawn of the Assisted Decision-Making Capacity Act (2015), which has considerable implications for practice.

The first action research stage consisted of three sub-stages combining quantitative and qualitative methods, with the findings of each sub-stage iteratively informing the development of the next.

The results of the study indicate that whilst overall ACP is largely viewed as positive by healthcare professionals, confidence, and experience levels vary in practice, with a strong desire for additional specific training and tools to support ACP engagement indicated. The study also revealed facilitators and barriers to ACP; and addressing existential anxiety, giving voice, person-centred approach, and push and pull factor themes.

This study highlights some important implications for person-centred practice centring on the need to balance an active stance to ACP whilst also respecting the right not to engage for varying psychological and emotional reasons.

Individuals with Parkinson’s disease (PD) often experience delays in initiating advance care planning (ACP) and palliative care (PC) which can impact their autonomy as cognitive function declines. Because patient autonomy and decision-making in ACP and PC for individuals with PD is insufficiently explored, this systematic review with narrative synthesis aims to fill this gap by reviewing the existing literature on these topics. It examines how awareness and timing influences ACP and PC implementation, how illness narratives shape decision-making and autonomy perceptions and the roles of caregivers and neurologists in supporting patient autonomy.

We conducted a systematic review with narrative synthesis of original research investigating ACP and PC in individuals with PD in accordance with PRISMA guidelines. The methodological quality of included studies was assessed using the Critical Appraisal Skills Programme checklists. Illness narrative types were categorized according to Arthur W. Frank’s framework (chaos, restitution and quest narratives). Findings were synthesized narratively and organized thematically in line with the review objectives.

We included 42 studies using quantitative and qualitative methodologies involving 4154 individuals with PD and 2191 caregivers. Several themes were identified. Limited knowledge of ACP and PC explained its lower occurrence. ACP is often delayed due to uncertainty and misconceptions leading to late or crisis-driven discussions. Narrative medicine shows most individuals with PD share chaos narratives reflecting a focus on motor symptoms over autonomy. Lastly, individuals with PD expressed a need for greater autonomy support while ACP counseling is well received and improves understanding of care needs and end-of-life decisions.

Delays in initiating ACP and PC are associated with diminished autonomy in individuals with PD. Narrative medicine could help neurologists start ACP and PC discussions earlier, supporting autonomy and thereby aligning care with patient preferences.

Evidence shows that advance care planning has the potential to reduce involuntary admissions and empower service users. The perinatal period is a time of heightened risk of relapse of mental illness, and, in this context, many perinatal mental health services routinely offer pre-birth mental health care planning meetings.

We aimed to explore the experience of perinatal mental health service users and their partners following a pre-birth planning meeting and the writing of a perinatal care plan that included advance care plans for birth, postpartum and in case of crisis.

We interviewed pregnant perinatal mental health service users and their partners at two large, urban maternity hospitals in Dublin, Ireland. We used thematic analysis to identify key themes relevant to their experiences of pre-birth planning meetings and written perinatal mental health care plans.

Ten service users and three partners were interviewed. We identified five themes: theme 1, Hoping for change; theme 2, A wish to be heard; theme 3, Individualised care; theme 4, Security of ‘a plan in place’ and theme 5, Role of the support network.

Women and their partners value pre-birth planning meetings and these should routinely be offered within services, with consideration as to the size and timing of the meeting, and who is in attendance. These findings are relevant to general adult and liaison psychiatrists who should also incorporate advance care planning into routine practice.

The relationship between frailty, self-efficacy, and advance care planning (ACP) remains unclear in Asia. This study examined how frailty status relates to decisional self-efficacy, ACP engagement, and advance directive completion among older adults receiving home healthcare in Taiwan.

A cross-sectional analysis was conducted using baseline data from a nationwide cohort in Taiwan. Participants (N = 358) were categorized by Clinical Frailty Scale (CFS): mildly frail (CFS 4–5, n = 60), moderately frail (CFS 6, n = 83), severely frail (CFS 7, n = 147), and very severely frail (CFS 8–9, n = 68). ACP engagement and decision-making self-efficacy were assessed using Likert scales.

Patients with greater frailty had lower odds of high decisional self-efficacy (CFS: 8–9: odds ratio [OR] = 0.38, 95% confidence interval [CI] = 0.14–1.07) but higher odds of ACP engagement (CFS: 6: OR = 3.38, 95% CI = 1.40–8.17; CFS: 7: OR = 2.52, 95% CI = 1.08–5.89) compared with mildly frail individuals. However, this increase did not extend linearly to the very severely frail group. Advance directive completion remained low across all frailty levels (4.8–10.0%) and was not significantly associated with frailty status.

Frailty was associated with lower decisional self-efficacy but higher readiness for ACP, revealing a divergence between perceived confidence and planning motivation. Despite greater engagement, advance directive completion remained low. Stage-sensitive, values-based approaches may help bridge the gap between intention and documentation across the frailty spectrum.

Psychiatric advance directives (PADs) and joint crisis plans (JCPs) are documents that allow users of mental health services to state their preferences for treatment for a future situation in which they are unable to give consent. In Germany, both PADs and JCPs are legally binding in the context of mental healthcare.

The objective of this study was to examine mental health professionals’ views on PADs and JCPs, identify challenges in their application in clinical practice, and derive recommendations for their implementation.

We conducted semi-structured interviews with 14 mental health professionals with experience in JCPs in Germany. We analyzed the interviews following qualitative content analysis.

Participants identified several opportunities associated with JCPs, including strengthening the therapeutic relationship and building trust, promoting self-determination and participation, fostering therapeutic progress, reducing coercion, and enhancing the attitudes of mental health professionals. They also recognized a number of challenges, such as limited resources, insufficient knowledge and interest among service users, uncertainty and skepticism among mental health professionals, and the infrequent updating of JCPs. In addition, participants offered suggestions for improving the implementation of JCPs at both organizational and practical levels.

Mental health professionals describe a variety of opportunities and challenges of JCPs in clinical practice. To address these challenges and enhance the implementation of JCPs, further research and targeted training for mental health professionals are needed, alongside the development of institution-specific policies.

To explore cancer patients’ understanding of Advance Care Planning (ACP) and identify the main barriers hindering its effective implementation in clinical practice.

This qualitative descriptive study included Brazilian women with breast cancer aged 18–75 years, all with preserved functional status, recruited by convenience sampling. Exclusion criteria were difficulty using online calls or significant communication impairment. Data collection involved a sociodemographic questionnaire and a follow-up interview. After receiving an informational brochure, participants were contacted by video call 14 days later and asked, “How do you understand what ACP is?” Interviews were conducted confidentially at home, transcribed, and analyzed according to qualitative research reporting guidelines.

Sixty-one women participated. Most had difficulty understanding ACP; nearly 40% could not define it. Main barriers included cultural resistance to discussing death, reliance on family members or physicians for decision-making, and lack of clear information. Many participants confused ACP with preventive care. A conceptual multilevel model was developed, showing how cultural taboos, family dependence, and systemic inertia interact to sustain barriers through a feedback loop in which cultural avoidance reinforces structural gaps and institutional neglect.

This study provides evidence on how ACP is understood and misinterpreted by cancer patients in a middle-income Latin American setting, an area that remains underrepresented in the literature. By demonstrating that misconceptions, cultural taboos, and systemic barriers operate through a reinforcing multilevel process, the findings offer a conceptual framework that explains why ACP remains marginal in routine oncology care. The model highlights critical points for intervention, including patient education, professional communication, and institutional support, and is directly applicable to similar sociocultural contexts characterized by strong family involvement and biomedical dominance. These results have clear implications, supporting the integration of ACP as a proactive, relational, and value-based process rather than a late end-of-life intervention.

Although prior research has identified common attributes of a Good Death across cultures, few studies have simultaneously incorporated the views of patients, family caregivers, and physicians – particularly in Latin America, where structural barriers to palliative care persist. This study examines how these stakeholders in Mexico perceive and designate what constitutes a Good Death, aiming to identify its core components and cultural particularities.

Qualitative interviews were conducted with 14 advanced-stage oncologic and nononcologic patients receiving home-based palliative care, 12 family caregivers, and 21 physicians. Data were analyzed using principles of generic purposive sampling and thematic analysis.

The most frequent designation for a Good Death was “Dignified and Peaceful Death,” perceived as a multidimensional and multitemporal process. Five core domains emerged: physical, psychological, interpersonal, spiritual, and structural. These dimensions manifested across distinct phases – before death (as preparation), during death, and after death.

A Dignified and Peaceful Death begins when individuals become aware of their mortality and encompasses cultural, emotional, and structural elements that transcend physical death. This perspective suggests that end-of-life care should respond not only to biomedical needs but also to broader existential and relational dimensions that shape patient and family experiences in resource-limited settings.

Advance care planning (ACP) is the process of helping individuals plan for their future by identifying goals of care and preferences for future care, identifying key decision makers should they be unable to make their own decisions. Hemato-oncology is a challenging specialism, one in which the transition from curative to end-of-life can be very rapid, with many patients dying in acute settings while receiving active treatment. As such, it is an area in which ACP is frequently overlooked. This qualitative study aimed to gain a better understanding of the perceived barriers and facilitators to ACP from a clinicians perspective at a large tertiary hematology center.

A questionnaire was designed and sent electronically to 39 clinical practitioners, including consultant hematologists, resident and specialty doctors, physician associates, and clinical nurse specialists. Responses were categorized following structured thematic analysis into 7 identified themes: education, communication, disease and treatment, time, patient and family support, healthcare professional support, and environment.

In total, 67% of healthcare professionals responded to the questionnaire with a median 100% completion of all questions. Staff feel unable to have ACP discussions for a variety of reasons. In analysis, the identified themes had a degree of overlap and commonality, with education identified as a theme central to all. Analysis indicated that education, and more specifically lack thereof, in the field of ACP was having a detrimental effect on staff understanding and therefore significantly impacting the ability of staff to implement ACP in hemato-oncology practice.

Further education is needed for both healthcare professionals and service users around ACP, with a deeper understanding likely to improve utilization in practice. It is proposed that earlier ACP needs to take place to ensure the opportunity is not missed in a group of diseases with prognostic uncertainty.

Psychiatric advance directives (PADs) are documents enabling individuals with mental health conditions to specify their treatment preferences for future mental health crises. Despite the benefits of PADs, their implementation has progressed slowly. Concerns about PADs among professionals seem to be part of the explanation. A commonly reported concern is that service users will use PADs to document extensive treatment refusals. Research has not yet explored professionals’ views on ethical conflicts arising from such refusals.

The objective of this study was to explore professionals’ perspectives on ethical conflicts arising from treatment refusals in legally binding PADs.

We carried out semi-structured interviews with 14 mental health professionals working in Germany with professional experience with PADs. We prompted discussions using a case report of an ethical conflict arising from a treatment refusal documented in a PAD. We analyzed the data thematically.

Professionals described the case as extreme yet not unfamiliar. While many felt obligated to respect the PAD, they also felt inclined to override it to promote service user well-being, restore service user autonomy, and protect others. Those inclined to override the PAD focused on scrutinizing its validity and applicability, raising doubts about information disclosure, voluntariness, decision-making capacity, and PAD irrevocability. Professionals believed ethics consultation would help address the ethical conflict.

Legally binding PADs can create ethical conflicts when they include treatment refusals. While the best policy response remains unclear, professionals can help prevent such conflicts by supporting service users in drafting PADs.

Although the importance of advance care planning (ACP) for individuals with adult congenital heart disease (ACHD) has been established, there is no consensus regarding the optimal age to initiate ACP discussions. We asked ACHD patients their opinions about the timing of the first ACP discussion.

Adult patients seen in an outpatient ACHD clinic from April to August 2018 completed a self-administered questionnaire that evaluated opinions regarding the content and timing of ACP discussions, end-of-life communication preferences, and anticipated emotional responses to ACP discussions.

Ninety-five patients participated. Median age was 34.8 years (Q1 – Q3: 28.4 - 47.1 years), 53% (n = 50) were female, and 91% (n = 86) had great or moderate disease complexity. Although 75% (n/N = 69/92) thought ACP was important, only 37% (n/N = 35/94) had completed advance directives. Most (79%, n/N = 72/91) preferred ACP conversations early, either before getting sick (44%, n = 40/91) or when first diagnosed with a life-threatening illness (35%, n = 32/91). Responses varied regarding the appropriate age for first ACP conversations: 28% (n/N = 25/88) chose options ≤ 15 years, 23% (n/N = 20/88) 16–17 years, 32% (n/N = 28/88) 18–20 years, and 17% (n/N = 15/88) ≥ 21 years old.

ACHD patients value ACP discussions and think they should occur early in the disease course, before patients face a life-threatening disease complication, yet most think these conversations should wait until later adolescent or young adult years. ACP readiness should be assessed to determine the optimal timing of ACP discussions.

It is widely known that people with a severe and persistent mental illness (SPMI) are more at risk of poor physical health outcomes because of disparities in healthcare access and provision. Less is known about the quality of end-of-life (EoL) care in people with SPMI who have a life-limiting disease.

A comprehensive and systematic literature search in PubMed, Embase, Web of Science, Scopus, and CINAHL electronic databases (from inception to November 2023) was conducted, without language restriction, for reviews on EoL care and/or palliative sedation for people with SPMI and a life-limiting disease. A critical appraisal of the selected reviews was performed. Data were analyzed according to the four principles of biomedical ethics.

Ten reviews were included. These show that people with SPMI are at risk of suboptimal EoL care. Stigma among healthcare professionals, lack of integrated care policies, absence of advanced care planning, and insufficient expertise and training in palliative care of psychiatrists have been identified as key challenges to the provision of adequate EoL care for people with SPMI. No data were found about palliative sedation.

To optimize palliative and EoL care for SPMI patients with a life-limiting disease, a policy of coordinated and integrated mental and physical healthcare is needed. Moreover, education and training initiatives to reduce stigma and discrimination among all healthcare workers and to enhance palliative care skills in psychiatrists should be offered. Finally, more research is needed on EoL particularly on palliative sedation for people with SPMI and a life-limiting disease.

This review provides an overview of patient-reported outcome measure (PROMs) utilized to assess the impact of advance care planning (ACP) among older adults and evaluates their psychometric properties.

The inclusion criteria were as follows: (1) studies that targeted older adults; (2) studies using of any type of measurement tools that measure patient-reported ACP program outcomes; and (3) studies published in English or Korean. Following PRISMA guidelines, a systematic review was conducted, encompassing electronic searches across 5 databases including PubMed, EMBASE, Cochrane Library, CINHAL, and PsycINFO and manual searches of umbrella reviews on ACP interventions. General characteristics of the selected measures were extracted, and their methodological quality was assessed using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist.

Out of 19,503 studies initially identified, 74 met the inclusion criteria, reporting on a total of 202 measures. These measures were categorized into 4 domains reflecting the targets of ACP interventions: process (n = 56), action (n = 18), process and action (n = 16), quality of care (n = 63), and health status (n = 49). Despite the breadth of measures identified, none fully met all recommended psychometric properties outlined in the checklist.

While this review aids in the selection of measures for both practical and research purposes, it underscores the necessity for further validation of PROMs in assessing ACP outcomes in older adults, advocating for rigorous psychometric evaluations and adherence to standards like the COSMIN checklist to ensure reliable and valid data. It suggests the need for shortened versions and researcher assistance to address the challenges older adults face with self-reported PROMs and improve participation rates.

Chronic kidney disease (CKD) is a global health challenge that affects patients’ symptom burden and quality of life. Palliative care interventions show promise in addressing the multiple needs of CKD patients, focusing on symptom management, psychosocial support, and advance care planning. This study aimed to evaluate the effectiveness of palliative care interventions in improving symptom management in patients with CKD.

The study used a quasi-experimental research design with a sample size of 128 participants diagnosed with CKD. Participants were selected based on strict criteria to ensure consistency of palliative care interventions. Non-probability purposive sampling was used to select participants. Data were collected using validated instruments such as the Edmonton Symptom Assessment System, Kidney Disease Quality of Life-Short Form, Palliative Performance Scale, Dialysis Symptom Index and Functional Assessment of Chronic Illness Therapy-Fatigue. These instruments provided robust measures of symptom severity, quality of life, performance status, symptom burden, and fatigue. The intervention consisted of 4 sessions designed to address symptom management, psychosocial support, and advance care planning strategies.

Post-intervention, CKD patients showed significant improvements across multiple measures. Pain decreased from 6.2 to 4.8 (p = 0.002, 23% improvement), and fatigue decreased from 7.5 to 6.1 (p = 0.001, 19% reduction). Depression improved from 5.6 to 4.2 (p = 0.001, 25% reduction) and anxiety decreased from 4.9 to 3.8 (p = 0.004, 22% reduction). Physical functioning increased from 65.3 to 72.1 (p = 0.002, 10% improvement), cognitive function from 72.8 to 78.5 (p = 0.003, 8% increase), and emotional well-being from 60.2 to 65.7 (p = 0.004, 9% improvement). Ambulation improved from 75.2 to 81.5 (p = 0.001, 8% increase), activity from 68.7 to 74.3 (p = 0.004, 8% increase), and self-care from 82.4 to 88.1 (p = 0.003, 7% improvement). Nutritional status improved from 79.6 to 85.2 (p = 0.002, 7% increase) and level of consciousness from 70.3 to 75.8 (p = 0.005, 8% increase). Fatigue scores decreased significantly from 53.2 to 48.6 (p = 0.001, 9% decrease), activities of daily living from 50.1 to 45.8 (p = 0.001, 9% decrease), and well-being from 55.6 to 50.2 (p = 0.001, 10% improvement).

The results highlight the potential of palliative care interventions to improve outcomes and well-being for people with CKD. By addressing their complex needs, these interventions offer valuable lessons for nephrology and palliative care practice, emphasizing holistic approaches to patient care. The findings add to the evidence supporting the integration of palliative care into CKD management, highlighting its value in improving patient outcomes and quality of life.