National Advance Care Planning Research Articles

Integrating the Age-Friendly Health Systems Movement in Veterans Health Administration: National Advance Care Planning via Group Visits and the 4Ms Framework.

Integrating the Age-Friendly Health Systems Movement in Veterans Health Administration: National Advance Care Planning via Group Visits and the 4Ms Framework.

Thailand's experience in Advance Care Planning

In 2007, Thailand enacted the National Health Act, which contains the Advance Directive (Section 12). Even though the Act was enacted nearly sixteen years ago, physicians have not fully adopted it, limiting the number of patients who can benefit from the Advance Directive. Thai culture values the role of extended family in end-of-life planning, which is frequently marked by a conspiracy of silence (inability to discuss end-of-life issues), so patients may have limited opportunities to participate in decision-making and care planning. Thailand introduced a Palliative Care Policy in 2014. The inclusion of palliative care in the health service plan is the most crucial factor for palliative care provision. Through health inspections, the Ministry of Public Health supervises, monitors, and evaluates the management of the National Palliative Care Program. Advance Care Planning (ACP) and three other major KPIs were to be included in health inspections by 2020. In 2021, the Office of the National Health Commission implemented ACP, including the formation of (a) a committee to create a national ACP form and standard operating procedures and (b) a steering committee to oversee the nationwide implementation of ACP.

Challenges in providing end-of-life care consistent with documented patient preferences.

Providing end-of-life care consistent with patient preferences is a major goal for advance care planning (ACP) programs. Despite the promise, many trials have failed to show that ACP improves patients' likelihood of receiving end-of-life care consistent with preferences. The reasons and challenges to facilitating EOL care consistent with patients' documented ACP preferences remain unclear. Using data from Singapore's national ACP program evaluation, we aimed to understand health care professionals' (HCPs) perceived challenges in facilitating end-of-life care consistent with patients' documented ACP preferences. We conducted 21 focus group discussions and 1 in-depth interview with HCPs trained in ACP facilitation and advocacy and involved in national ACP program implementation within public hospitals, public primary care clinics and nursing homes in Singapore. Data collection was stratified based on HCPs' role within the ACP program (ACP leads/champions, ACP facilitators, nursing home heads/ACP administrative staff) and type of institution (hospital, primary care clinic and nursing home). Each discussion included 1 to 8 participants. Discussions were audio recorded, transcribed verbatim and checked for accuracy. We analysed the data using thematic analysis framework in Nvivo 11. A total of 107 participants attended one of the discussions of which more than a third (35%) were physicians. We conceptualized five themes describing the challenges in implementing end-of-life care consistent with patients' documented ACP preferences: (I) conflict between honouring preference for comfort care and extending life; (II) ACP not reflecting patients' changing preferences or medical condition; (III) lack of health system resources to support and honour patient preferences; (IV) barriers to retrieval of ACP documents; and (V) rigidity of ACP documentation. Although providing end-of-life care consistent with preferences may not always be feasible, future ACP programs should involve physicians and families for ongoing conversations, frequently update patients' ACP documents, involve clear and well-resourced plans for implementing patients' preferences, and incorporate flexible electronic systems to capture ongoing ACP conversations.

Complexity of implementing a nationwide advance care planning program: results from a qualitative evaluation.

We evaluated Singapore's national advance care planning (ACP) program to understand challenges to its implementation within multiple clinical settings. We conducted focus group discussions (FGDs) with a purposive sample of health care professionals (HCPs) involved in ACP program delivery within acute care hospitals, primary care clinics and nursing homes. FGDs were stratified into three categories based on HCPs' role within the ACP framework-leaders versus facilitators and advocates versus nursing home heads. Using NVivo 11, we analysed data using thematic analysis and Conceptual Framework for Implementation Research. A total of 107 HCPs from 25 organisations participated in 22 FGDs. Findings revealed wide variation in ACP implementation among organisations and identified 12 themes organized within four domains-outer setting (lack of public awareness, shortcomings in inter-organisational partnerships, performance driven policies), inner setting (lack of commitment from organisational leadership, paucity of dedicated resources, absence of an institution-wide ACP culture, lack of physician engagement), characteristics of HCPs (language barriers) and process (inadequate training, complexity of conversations and documentations, challenges to retrieving ACP documents, absence of comprehensive monitoring and evaluation). ACP program implementation is complex and faces multiple health care system challenges. To integrate ACP within routine clinical care, ACP processes should be simplified, training framework be strengthened, physicians be engaged and an ACP supportive culture be created within and outside organisations. Findings will be used to guide ACP implementation within the country and globally.

"I decide myself"- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning.

BackgroundThe Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients’ treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers’ experiences with the ACP programme.MethodWe conducted interviews with 28 participants, thirteen of whom identified as proxy decision makers (PDMs) and the remainder as patients. Interviews focused on respondents’ experiences of chronic illness and of participating in the ACP programme. Textual data was analysed through a framework analysis approach.ResultsParticipants’ narratives focused on four major themes with 12 subthemes: a) Engagement with Death, factors influencing respondents’ acceptance of ACP; b) Formation of Preferences, the set of concerns influencing respondents’ choice of care; c) Choice of PDM, considerations shaping respondents’ choice of nominated health spokesperson; and d) Legacy Solidification, how ACP is used to ensure the welfare of the family after the patient passes. These findings led to our development of the directive decision-making process framework, which delineates personal and sociocultural factors influencing participants’ decision-making processes. Respondents’ continual participation in the intervention were driven by their personal belief system that acted as a lens through which they interpreted religious doctrine and socio-cultural norms according to their particular needs.ConclusionThe directive decision-making process framework indicated that ACP could be appropriate for the Asian context because participants displayed an awareness of the need for ACP and were able to develop a concrete treatment plan. Patients in this study made decisions based on their perceived long-term legacy for their family, who they hoped to provide with a solid financial and psychological foundation after their death.

Sustainable implementation of advance care planning in Asia: An interpretive-systemic framework for national development.

A qualitative interpretive-systemic focus group study was conducted to examine the developmental and implementational underpinnings of Asia's first national Advance Care Planning (ACP) programme constituted in Singapore. 63 physicians, nurses, medical social workers, and allied health workers who actively rendered ACP were purposively recruited across seven major public hospitals and specialist centers. Framework analysis revealed 19 themes, organized into 5 categories including Life and Death Culture, ACP Coordination, ACP Administration, ACP Outcomes, and Sustainability Shift. These categories and themes formed an Interpretive-Systemic Framework of Sustainable ACP, which reflects the socio-cultural, socio-political, and socio-spiritual contexts that influence ACP provision, highlighting the need to adopt a public health strategy for enhancing societal readiness for end-of-life conversations. The Interpretive-Systemic Framework of Sustainable ACP underscores the importance of health policy, organizational structure, social discourse, and shared meaning in ACP planning and delivery so as to support and empower care decision-making among terminally ill Asian patients and their families facing mortality.

Patient autonomy and participation in end-of-life decision-making: An interpretive-systemic focus group study on perspectives of Asian healthcare professionals.

Asia's first national advance care planning (ACP) program was established in Singapore in 2011 to enhance patient autonomy and self-determination in end-of-life (EoL) care decision-making. However, no known study has examined the extent to which ACP in Singapore successfully met its aims. The purpose of the current study was to examine the attitudes of local healthcare professionals on patients' autonomy in decision-making at the EoL since they strongly influence the extent to which patient and family wishes are fulfilled. Guided by the Interpretive-Systemic Framework and Proctor's conceptual taxonomy of implementation research outcomes, an interview guide was developed. Inquiries focused on healthcare professionals' attitudes towards ACP, their clinical experiences working with patients and families, and their views on program effectiveness. Sixty-three physicians, nurses, medical social workers, and designated ACP coordinators who were actively engaged in ACP facilitation were recruited from seven major hospitals and specialist centers in Singapore through purposive sampling. Twelve interpretive-systemic focus groups were conducted, recorded, transcribed, and analyzed using a thematic analysis. The extent to which patients in Singapore can exert autonomy in EoL care decision-making is influenced by five themes: (i) collusion over truth-telling to patient, (ii) deferment of autonomy by patients, (iii) negotiating patient self-determination, (iv) relational autonomy as the gold standard and (v) barriers to realization of patient choices. Healthcare practitioners in Asian communities must align themselves with the values and needs of patients and their family and jointly make decisions that are consistent and congruent with the values of patients and their families. Sensitivity towards such cross-cultural practices is key to enhancing ACP awareness, discourse, and acceptability in Asian communities.

Retrospective cohort analysis of real-life decisions about end-of-life care preferences in a Southeast Asian country

ObjectiveTo describe the end-of-life care preferences of individuals, and to examine the influence of age and gender on these preferences.Design, setting and participantsA retrospective cohort study was conducted. Participants included...

Conversations that count: Advance Care Planning as preventative medicine

Background: Fundamental to the concept of Advance Care Planning (ACP) is empowering individuals and communities to recognise death as an inevitable part of life.Methods: ACP facilitators and clinical champions in the Canterbury region of New Zealand have been very active in engaging the community. This has occurred through consumer presentations, the creation of specific pages on the Canterbury District Health Board (CDHB) consumer information website (HealthInfo) and support of the National ACP awareness campaign ‘Conversations that Count’.Results: ‘Consumer power’ has been invaluable in driving the uptake of ACP in the CDHB. A survey of 49 GPs in 2015 found many were reluctant to start ACP conversations or felt they ‘did not have time’. The turning point was the realisation that patients are not only wanting but are actively asking to have these important conversations and to create Advance Care Plans (ACPlans). 1200 electronic ACPlans have now now been created in Canterbury, with 80% generated in primary care.The ACP pages on HealthInfo are consistently in the top 20 pages viewed each month which indicates that the community is seeking information and wanting to take control. Uptake and demand for consumer presentations and ‘Conversations that Count’ resources also continues to grow year on year.Discussion: Increased awareness and understanding of ACP gives people the opportunity to think and frame their reasoning, so they are better prepared to have well informed discussions with health care professionals. It helps them be clearer in their mind about their own limits and concerns. It is important for people to consider the question - “what is O.K for me and what isn’t?”. In this context, ACP conversations can be seen as preventative medicine.Patients need to be as well equipped as possible to be active participants in healthcare decisions, especially regarding end of life. Through the ACP process, unnecessary suffering, confusion and conflict can be reduced or prevented and unwanted or burdensome treatment that is not in line with their goals and priorities can be averted.Conclusion: Valuing and honouring a person’s participation in their health care decision-making is important for all healthcare organisations. Prioritising ACP is an effective way of making this happen.

Advance Care Planning—A Primer

Advance Care Planning (ACP) is the process by which individuals make decisions that can guide their future healthcare if they become incompetent. Creation of an Advance Care Plan should involve discussions with healthcare providers and substitute decision makers (SDM). ACP can assist individuals, their families, and healthcare professionals in planning for future and end-of-life (EOL) care. Recent research suggests that ACP can increase discussions about EOL preferences and improve the concordance between patient preferences and their EOL care. More than 50% of Canadians have not completed an Advanced Care Plan. This may be due to a variety of reasons, however it is possible that the community does not have enough knowledge about healthcare options that can be provided in the hospitals. Current research is focused on identifying barriers and facilitators to ACP, as well as implementing methods for incorporating it during standard medical care. Various stakeholders have identified ACP as a priority, and in order to raise awareness, April 16th has been designated as National Advance Care Planning Day in Canada

Speak Up - A National Advance Care Planning Campaign in Canada

The Canadian Hospice Palliative Care Association has established a Canadian National Advance Care Planning (ACP) Day/Campaign – Speak Up: Start the Conversation about End-of-Life Care. This campaign, which includes a...