Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care

End of life decision making - Advance care planning/requests for hastened death

BackgroundThe European Association for Palliative Care (EAPC) defines advance care planning (ACP) as a process enabling individuals with decisional capacity to define goals and preferences for future medical treatment and care, discuss these with family and health‐care providers, and record and review them if appropriate. There are concerns that this and other definitions may not apply to ACP in the context of dementia. ACP needs for people with dementia differ from those of people with other diseases. Furthermore, current definitions are not informed by input from people with dementia, but rely on professional expert recommendations. We gathered the perspectives of the European Working Group of People with Dementia (EWGPWD) regarding the EAPC ACP definition to explore its applicability in the context of dementia.MethodsWe conducted 3 online focus groups with members of the EWGPWD (n = 12) and their supporters (n = 9). We deconstructed ACP in four topics revolving around the what, why, who, and when of ACP to guide discussions. To analyze the data, we used inductive thematic analysis.ResultsThree key issues were highlighted as important to consider in an ACP definition which would be inclusive for people with dementia. First, participants disagreed with the focus on people with decisional capacity, as they saw loss of capacity as a gradual process that depends on context and should be supported throughout the dementia trajectory. Second, although some noted that family dynamics vary, the essential role of families or trust‐based relationships was found to be under‐addressed, as families were generally considered to have personal knowledge of the person with dementia. Third, participants suggested that ACP is too centered on medical care. It should include broader conversations on what matters to people in the future, social care, and future daily life activities.ConclusionWe identified three points of contention with the EAPC ACP definition corresponding to dementia‐specific issues. The perspectives of the EWGPWD emerging from our focus groups contribute to the understanding of ACP in the context of dementia and highlight the need for a dementia‐inclusive ACP definition focusing on the issues of decisional capacity, family involvement and social aspects of care.

Advance care planning is a process that encourages people to identify their values, to reflect upon the meanings and consequences of serious illness, to define goals and preferences for future medical treatment and care, and to discuss these goals with family and health-care providers. Advance care planning is especially important for those who are chronically ill, as patients and their families face a variety of complex healthcare decisions. Participating in advance care planning has been associated with improved outcomes; yet, despite over 25 years of public awareness campaigns, research, and interventions developed to increase participation, advance care planning completion rates for people with chronic illnesses are no different than those in the general public (approximately 25%). Advance care planning has traditionally used an individualistic approach to autonomy, which puts forward an understanding of agents as independent, rational and self-interested persons. Because this individualistic approach has been largely unsuccessful in improving advance care planning uptake, a re-examination of the philosophical underpinnings of this practice and an exploration of alternative frameworks is warranted. In offering this exploration, we briefly outline two current perspectives on autonomy: the individualistic view and the relational view as articulated by feminist philosophers. Using a critical examination of the theoretical and empirical work on this topic, we argue that the individualistic view of autonomy does not sufficiently capture the relational and social complexities of the decision-making process of advance care planning. To offer a counterpoint, we examine the relational view of autonomy and suggest that this perspective is better aligned with the process of advance care planning. Specifically, we demonstrate that a relational model of autonomy is well suited to exploring advance care planning for four main reasons: (1) it recognizes the importance of relationships, (2) it reflects the fluctuating nature of autonomy in chronic illness, (3) it recognizes vulnerability, and (4) it is consonant with empirical work examining the advance care planning process.

Advance care planning (ACP) is a nuanced process where patients identify their goals and consider their preferences for medical care over time. Recent systematic reviews have shown mixed findings about the association of ACP with the provision of goal-concordant care, completion of advance directives, and health care utilization. Despite a lack of consistent benefit, patients and clinicians value ACP and policy makers at the state and federal level have been moving ACP policies forward. All fifty states have policies regarding advance directives, and federal policy has had important implications on promoting awareness of ACP and its corresponding legal documents such as advance directives. However, challenges to effectively incentivize and facilitate the delivery of high-quality ACP exist. This paper provides an overview of key federal policy aspects and barriers that affect ACP use including: limitations of Medicare ACP billing codes, disparities in telemedicine access, difficulties with interoperability of advance directives, and underutilization of ACP as a mandatory measure in federal programs. This paper highlights key opportunities to improve federal ACP policy. Because ACP is an essential part of high-quality care and is deeply embedded in state and federal policies, it is imperative that clinicians are knowledgeable about these issues so they may more effectively engage in ACP policy.

Background: 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. Aim: To develop a consensus definition of advance care planning and provide recommendations for patient-centered and family-based initiatives in Asia. Design: 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. Setting/participants: The Delphi study was carried out by multidisciplinary experts on advance care planning in five Asian sectors (Hong Kong/Japan/Korea/Singapore/Taiwan). Results: 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. Conclusions: 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 (ACP) enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate. ACP interventions have potentially beneficial outcomes for patients and healthcare systems, including increased completion of advance care directives, alignment of care to expressed preferences, better quality of communication and improved quality of life, reduction of unwanted hospital admissions, and increased use of palliative care. Aspects of ACP have been adopted in national and international healthcare policy. However, due to barriers to ACP, the occurrence in practice remains low. For instance, some people find ACP challenging: they may neither wish to ‘foresee’ the future nor to discuss the implications of their illness. Some may find it difficult to express their wishes or find the emphasis on autonomy to be countercultural. This chapter examines evidence about the effectiveness of ACP, describes the current practices, analyses its barriers and facilitators, and formulates best practices. It also explores the challenges of raising awareness of ACP among the general public, which is a necessary precursor to ACP. It draws on an international Delphi consensus study that was charged with developing a definition of ACP and recommendations for its application.

Background Advance Care Planning (ACP) enables persons to define goals and preferences for future medical treatments and care, to discuss, record and review these. Potentially, web-based programs can support patients in ACP. However, an overview of their effectiveness and feasibility is lacking. Methods To provide an overview of the content, feasibility and effectiveness of web-based, interactive and patient-centered ACP programs, we systematically searched in 7 databases. We extracted data using the EAPC consensus concept of ACP as our framework. Results The search identified 3434 records; 21 studies were included. Three additional studies were identified by hand search. The 24 studies evaluated 11 web-based ACP programs, developed in the USA (10) and Ireland (1). Most programs addressed exploration of goals, values and preferences, and ACP communication. Users considered programs as easy to use (7/7 studies) and not burdensome (7/8 studies). Users were satisfied with the programs (10/10 studies). ACP communication (11/11 studies) and ACP documentation (14/16 studies) increased. Two studies evaluated concordance between preferred and provided care. Designs of 10 studies allowed comparison before/after completing ACP programs or between study groups. Conclusion(s) Most web-based ACP programs contain the important elements of ACP. Studies reported that programs tended to be effective and feasible. Evaluations of concordance between preferred and provided care are scarce. Web-based programs have potential to support patients, and scale up ACP. However, since many studies did not assess differences before/after or between groups, outcomes should be interpreted with caution. Funding The Netherlands Organisation for Health Research and Development (ZonMw).

To explore the health professionals' (HPs) perceptions and experiences of advance care directives (ACDs) and advance care planning in Australian palliative care services. A nationwide survey of 105 palliative care services was conducted, with two HPs from each service invited to participate. A qualitative analysis of open responses about advance care planning was undertaken. Sixty questionnaires were returned with open responses. Most responders were nurses (75%), aged ≥40 years (80%) and with a mean of 12 years palliative care experience. Data were grouped into four key themes: (1) the ACD; (2) the process of developing ACDs; (3) the process of using ACDs; and (4) the consequences of having ACDs. Participants were positive about advance care planning, commenting that ongoing communication about end-of-life care ensures mutual understanding between patients, family and HPs. Provision of care was considered easier and more efficient with an ACD in place. ACDs were perceived to reduce distrust and conflict between family, friends and HPs, and promote communication. Suboptimal documentation, clarity and explicitness limited the usefulness of ACDs when they were available. Advance care planning benefits HPs, patients and their family. To maximise these benefits, ACDs need to be clear, comprehensive, medically relevant and transportable documents.

Introduction Patients with transposition of the great arteries (ccTGA) and patients with transposition of the great arteries who had palliative surgery (Mustard/Senning procedures) often have progressive functional deterioration of the systemic right ventricle (sRV) and develop heart failure from the third or fourth decade of life.1 End stage heart failure requires an integrated approach and advance care planning (ACP)2 with ACHD cardiologists working alongside specialist heart failure and palliative care teams. We describe current practice with regards to ACP and palliative care referrals in patients with sRV at a tertiary referral centre. Methods Patients with ccTGA, Mustard or Senning procedures who were under active follow up from 2016 to 2021 were retrospectively analysed (n=122). Clinical and echocardiographic data were extracted from hospital electronic records and screened for factors which should prompt the consideration of palliative care referral and ACP as specified in prior guidance.2 These were; an episode of decompensation within 6 months despite optimal medical therapy, malignant arrhythmias, cardiac cachexia, frequent or continued intravenous therapies, poor quality of life (QoL), or progressive functional decline with dependence in activities of daily living and New York Heart Association (NYHA) IV symptoms. Results Baseline information is summarised in table 1. 7 patients had ACP (figure 1). 2 occurred during hospital admission in NYHA III patients with more than 1 episode of decompensation in 6 months despite optimal medical therapy, need for frequent intravenous therapy and chronic poor QoL. Cardiopulmonary resuscitation, implanted cardiac defibrillator deactivation and future care preferences were discussed. 5 patients had ACP as an outpatient who were NYHA I or II, which were patient initiated (n=3) and clinician initiated in response to progressive functional decline (n=1) and no identifiable prompt (n=1). 5 patients died during the data collection period (median age 41 years), 1 of which had advanced heart failure, discussed ACP and was referred to palliative care. 2 patients did not have ACP or palliative care input, however did meet the criteria for doing so (table 2). Conclusions In our cohort of patients with sRV, the majority of patients are NYHA class I and II with mild or moderately impaired sRV function. ACP occurred in 60% of patients with NYHA III symptoms. The timing of ACP or palliative care referral can be challenging due to the subjective under reporting of symptoms and risk of sudden death in this group. ACP discussions in the outpatient setting occurred irrespective of NYHA class severity and were mostly patient initiated. Early discussion is advocated in light of recent guidance3 recommending staged ACP to those who express an interest, or concurrently with planning interventions such as device implantation, heart transplant assessment, catheter interventions or cardiac surgery. Conflict of Interest None References Brida M, Diller GP, Gatzoulis MA. Systemic right ventricle in adults with congenital heart disease. Circulation 2018;137:508–518. Jaarsma T et al. Advanced heart failure study group of the HFA of the ESC. Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology. Eur J Heart Fail 2009;11(5):433–43 Schwerzmann M et al. Recommendations for advance care planning in adults with congenital heart disease: a position paper from the ESC Working Group of Adult Congenital Heart Disease, the Association of Cardiovascular Nursing and Allied Professions (ACNAP), the European Association for Palliative Care (EAPC), and the International Society for Adult Congenital Heart Disease (ISACHD). European Heart Journal 2020;41(43):4200–4210.

People with heart failure report various symptoms and show a trajectory of periodic exacerbations and recoveries, where each exacerbation event may lead to death. Current clinical practice guidelines indicate the importance of discussing future care strategies with people with heart failure. Advance care planning (ACP) is the process of discussing an individual's future care plan according to their values and preferences, and involves the person with heart failure, their family members or surrogate decision-makers, and healthcare providers. Although it is shown that ACP may improve discussion about end-of-life care and documentation of an individual's preferences, the effects of ACP for people with heart failure are uncertain. To assess the effects of advance care planning (ACP) in people with heart failure compared to usual care strategies that do not have any components promoting ACP. We searched CENTRAL, MEDLINE, Embase, CINAHL, Social Work Abstracts, and two clinical trials registers in October 2019. We checked the reference lists of included studies. There were no restrictions on language or publication status. We included randomised controlled trials (RCTs) that compared ACP with usual care in people with heart failure. Trials could have parallel group, cluster-randomised, or cross-over designs. We included interventions that implemented ACP, such as discussing and considering values, wishes, life goals, and preferences for future medical care. The study participants comprised adults (18 years of age or older) with heart failure. Two review authors independently extracted outcome data from the included studies, and assessed their risk of bias. We contacted trial authors when we needed to obtain missing information. We included nine RCTs (1242 participants and 426 surrogate decision-makers) in this review. The meta-analysis included seven studies (876 participants). Participants' mean ages ranged from 62 to 82 years, and 53% to 100% of the studies' participants were men. All included studies took place in the US or the UK. Only one study reported concordance between participants' preferences and end-of-life care, and it enrolled people with heart failure or renal disease. Owing to one study with small sample size, the effects of ACP on concordance between participants' preferences and end-of-life care were uncertain (risk ratio (RR) 1.19, 95% confidence interval (CI) 0.91 to 1.55; participants = 110; studies = 1; very low-quality evidence). It corresponded to an assumed risk of 625 per 1000 participants receiving usual care and a corresponding risk of 744 per 1000 (95% CI 569 to 969) for ACP. There was no evidence of a difference in quality of life between groups (standardised mean difference (SMD) 0.06, 95% CI -0.26 to 0.38; participants = 156; studies = 3; low-quality evidence). However, one study, which was not included in the meta-analysis, showed that the quality of life score improved by 14.86 points in the ACP group compared with 11.80 points in the usual care group. Completion of documentation by medical staff regarding discussions with participants about ACP processes may have increased (RR 1.68. 95% CI 1.23 to 2.29; participants = 92; studies = 2; low-quality evidence). This corresponded to an assumed risk of 489 per 1000 participants with usual care and a corresponding risk of 822 per 1000 (95% CI 602 to 1000) for ACP. One study, which was not included in the meta-analysis, also showed that ACP helped to improve documentation of the ACP process (hazard ratio (HR) 2.87, 95% CI 1.09 to 7.59; participants = 232). Three studies reported that implementation of ACP led to an improvement of participants' depression (SMD -0.58, 95% CI -0.82 to -0.34; participants = 278; studies = 3; low-quality evidence). We were uncertain about the effects of ACP on the quality of communication when compared to the usual care group (MD -0.40, 95% CI -1.61 to 0.81; participants = 9; studies = 1; very low-quality evidence). We also noted an increase in all-cause mortality in the ACP group (RR 1.32, 95% CI 1.04 to 1.67; participants = 795; studies = 5). The studies did not report participants' satisfaction with care/treatment and caregivers' satisfaction with care/treatment. ACP may help to increase documentation by medical staff regarding discussions with participants about ACP processes, and may improve an individual's depression. However, the quality of the evidence about these outcomes was low. The quality of the evidence for each outcome was low to very low due to the small number of studies and participants included in this review. Additionally, the follow-up periods and types of ACP intervention were varied. Therefore, further studies are needed to explore the effects of ACP that consider these differences carefully.

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.

SY24-2 Advance care planning through collaboration between physicians and nurses: Discussions to identify and advocate the intangible value of patients

Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce. To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals. Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed. ISRCTN registry ISRCTN63110516.

Advance care planning (ACP) promotes care consistent with patient wishes. Medical education should teach how to initiate value-based ACP conversations. To develop and evaluate an ACP educational session to teach medical students a value-based ACP process and to encourage students to take personal ACP action steps. Groups of third-year medical students participated in a 75-minute session using personal reflection and discussion framed by The Conversation Starter Kit. The Conversation Project is a free resource designed to help individuals and families express their wishes for end-of-life care. One hundred twenty-seven US third-year medical students participated in the session. Student evaluations immediately after the session and 1 month later via electronic survey. More than 90% of students positively evaluated the educational value of the session, including rating highly the opportunities to reflect on their own ACP and to use The Conversation Starter Kit. Many students (65%) reported prior ACP conversations. After the session, 73% reported plans to discuss ACP, 91% had thought about preferences for future medical care, and 39% had chosen a medical decision maker. Only a minority had completed an advance directive (14%) or talked with their health-care provider (1%). One month later, there was no evidence that the session increased students' actions regarding these same ACP action steps. A value-based ACP educational session using The Conversation Starter Kit successfully engaged medical students in learning about ACP conversations, both professionally and personally. This session may help students initiate conversations for themselves and their patients.

Ethical Considerations About Clinician Reimbursement for Advance Care Planning