Competing expectations: Advance care planning from the perspectives of doctors and nurses in the South-East Asian context.

This study qualitatively examines the perspectives of doctors and nurses on the implementation of the Advance Care Planning program in Singapore. Findings suggest that a combination of structural and conceptual factors hindered the performance of ACP. Themes on structural factors indicated that low awareness of ACP among senior staff resulted overall lack of buy-in and incorrect implementation of the program due to misconceptions. Conceptual factors pointed to lack of clarity on intended outcomes or roles. Consequently, participants drew meaning through the prism of their profession, resulting in competing expectations and tensions on possible outcomes of the program.

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

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

State of advance care planning research: A descriptive overview of systematic reviews.

OBJECTIVE: To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and to identify gaps to improve ACP receptivity, utilization, implementation, and outcomes. METHOD: Cochrane methodology for conducting overviews of systematic reviews. Study quality was assessed using a modified version of the Assessing the Methodological Quality of Systematic Reviews tool. The following databases were searched from inception to April 2017: MEDLINE, EBM Reviews, Cochrane Reviews, CINAHL, Global Health, PsycINFO, and EMBASE. Searches were supplemented with gray literature and manual searches. RESULT: Eighty systematic reviews, covering 1,662 single articles, show that ACP-related research focuses on nine main topics: (1) ACP as part of end-of-life or palliative care interventions, (2) care decision-making; (3) communication strategies; (4) factors influencing ACP implementation; (5) ACP for specific patient groups, (6) ACP effectiveness; (7) ACP experiences; (8) ACP cost; and (9) ACP outcome measures. The majority of this research was published since 2014, its quality ranges from moderate to low, and reports on documentation, concordance, preferences, and resource utilization outcomes. SIGNIFICANCE OF RESULTS: Despite the surge of ACP research, there are major knowledge gaps about ACP initiation, timeliness, optimal content, and impact because of the low quality and fragmentation of the available evidence. Research has mostly focused on discrete aspects within ACP instead of using a holistic evaluative approach that takes into account its intricate working mechanisms, the effects of systems and contexts, and the impacts on multilevel stakeholders. Higher quality studies and innovative interventions are needed to develop effective ACP programs and address research gaps.

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

BACKGROUND: The 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. METHOD: We 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. RESULTS: Participants' 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. CONCLUSION: The 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.

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

OBJECTIVE: To describe the end-of-life care preferences of individuals, and to examine the influence of age and gender on these preferences. DESIGN, SETTING AND PARTICIPANTS: A retrospective cohort study was conducted. Participants included all adults (≥21 years old) (n=3380) who had completed a statement of their preferences as part of a national Advance Care Planning (ACP) programme in Singapore. Data were extracted from the national and Tan Tock Seng Hospital ACP database. MAIN MEASURES: End-of-life care preferences were obtained from the ACP document and differentiated by health status (healthy, chronically ill or diagnosed with advanced illnesses). To analyse the data, descriptive statistics and logistic regression analysis were used. RESULTS: Across healthy and chronically ill patients, the majority did not opt for cardiopulmonary resuscitation (CPR) or other life-sustaining measures. Among individuals with advanced illnesses, 94% preferred not to attempt CPR but 69% still preferred to receive some form of active medical treatment. Approximately 40% chose to be cared for, and to die at home. Age and sex significantly predict preferences in those with advanced illnesses. Older age (>=75 years) showed higher odds for home as preferred place of care (OR 1.52; 95% CI 1.23 to 1.89) and place of death (OR 1.29; 95% CI 1.03 to 1.61) and lower odds for CPR (OR 0.31; 95% CI 0.18 to 0.54) and full treatment (OR 0.32; 95% CI 0.17 to 0.62). Being female was associated with lower odds for home as preferred place of care (OR 0.69; 95% CI 0.57 to 0.84) and place of death (OR 0.70; 95% CI 0.57 to 0.85) and higher odds for full treatment (OR 2.35; 95% CI 1.18 to 4.68). CONCLUSION: The majority preferred to not proceed with life-sustaining treatments, but there was still a strong preference to receive some form of limited treatment. Better understanding of end-of-life care preferences through ACP can better guide end-of-life care programme planning, and resource allocation decisions.

Implementing Advance Care Planning in Acute Hospitals: Leading the Transformation of Norms.

BACKGROUND: Despite being simply defined as a process to further one's understanding about future medical care, the process of implementing advance care planning (ACP) within acute hospital settings can be complex. AIM: We describe different ACP service models adopted in Singapore, and the facilitators for, and barriers to, its effective implementation. DESIGN: Qualitative focus group study with thematic analysis. SETTINGS/PARTICIPANTS: We purposefully sampled four stakeholder groups involved in the implementation of ACP. Our sample included 63 participants, 12 physicians, 15 nurses, 24 medical social workers, and 12 ACP coordinators from seven public hospitals and one specialist center. RESULTS: We describe three different acute-care models adopted in Singapore, differentiated by leadership approach, target population, delivery process, and job roles. Our results revealed nine themes, organized into four categories, including: (1) hospital culture (curative norms, absence of preference-supportive culture), (2) organizational priority and leadership (low priority on hospital agenda, inappropriate leadership), (3) goals and distinction (lack of shared purpose and goals, no clear differentiation from existing practices), and (4) work practices (pigeonholing of ACP practice, inappropriate resourcing, accountability and feedback). CONCLUSION: We learned that to implement ACP effectively in an acute-care setting, there needs to be a cultural and behavioral transformation, led by committed and empowered leaders. Organizations that can create a shared purpose built on an ethos of honoring patients' preferences, and support this with systematic processes and adequate resourcing, will be more equipped to implement ACP effectively.

Individual, clinical and system factors associated with the place of death: A linked national database study.

BACKGROUND: Many middle- and high-income countries face the challenge of meeting preferences for home deaths. A better understanding of associated factors could support the design and implementation of policies and practices to enable dying at home. This study aims to identify factors associated with the place of death in Singapore, a country with a strong sense of filial piety. SETTINGS/PARTICIPANTS: A retrospective cohort of 62,951 individuals (≥21 years old) who had died from chronic diseases in Singapore between 2012-2015 was obtained. Home death was defined as a death that occurred in a private residence whereas non-home deaths occurred in hospitals, nursing homes, hospices and other locations. Data were obtained by extracting and linking data from five different databases. Hierarchical multivariable logistic regression models were used to examine the effects of individual, clinical and system factors sequentially. RESULTS: Twenty-eight percent of deaths occurred at home. Factors associated with home death included being 85 years old or older (OR 4.45, 95% CI 3.55-5.59), being female (OR 1.21, 95% CI 1.16-1.25), and belonging to Malay ethnicity (OR 1.91, 95% CI 1.82-2.01). Compared to malignant neoplasm, deaths as a result of diabetes mellitus (OR 1.93, 95% CI 1.69-2.20), and cerebrovascular diseases (OR 1.28, 95% CI 1.19-1.36) were also associated with a higher likelihood of home death. Independently, receiving home palliative care (OR 3.45, 95% CI 3.26-3.66) and having a documented home death preference (OR 5.08, 95% CI 3.96-6.51) raised the odds of home deaths but being admitted to acute hospitals near the end-of-life was associated with lower odds (OR 0.92, 95% CI 0.90-0.94). CONCLUSION: Aside from cultural and clinical factors, system-based factors including access to home palliative care and discussion and documentation of preferences were found to influence the likelihood of home deaths. Increasing home palliative care capacity and promoting advance care planning could facilitate home deaths if this is the desired option of patients.

Using Routinely Collected Data to Ascertain Concordance With Advance Care Planning Preferences.

CONTEXT: One of the key outcomes of advance care planning is whether patients had received care that was consistent with their expressed goals and preferences. OBJECTIVES: The aims of this study were to illustrate the feasibility of using routinely collected health care data that include hospital procedural codes, diagnosis-related codes, health services utilization, and death registry data and to ascertain the level of concordance between care received and the stated goals. METHODS: In this retrospective cohort study, medical treatments were ascertained using a combination of hospital procedural codes and diagnosis-related codes. Places of care were obtained by reviewing the sequence of health services used, and the place of death was obtained from the national death registry. To ascertain concordance, medical treatment, places of care, and place of death were compared against the individual's preferences. RESULTS: The sample includes 1731 decedents (aged 21 years and above) who completed their advance care planning documentation as part of a national program. Ninety-eight percent who wished for comfort measures met their preferences. Sixty-five percent of individuals who wished to be cared for at home received care at home. Nearly 40% of all individuals who opted to die at home achieved their wishes, whereas 76% of those who opted for home or hospital and home or hospice had their preferences fulfilled. CONCLUSION: Administrative data offer a cost-efficient and powerful method for assessing outcomes for a large population-based national program. However, this approach is still at an early stage of development and needs to be further validated before it can be used at scale.

Overview of Systematic Reviews of Advance Care Planning: Summary of Evidence and Global Lessons.

BACKGROUND: Advance care planning (ACP) involves important decision making about future medical needs. The high-volume and disparate nature of ACP research makes it difficult to grasp the evidence and derive clear policy lessons for policymakers and clinicians. AIM: The aim of this study was to synthesize ACP research evidence and identify relevant contextual elements, program features, implementation principles, and impacted outcomes to inform policy and practice. DESIGN: An overview of systematic reviews using the Cochrane Handbook of Systematic Reviews of Interventions was performed. Study quality was assessed using a modified version of the AMSTAR (A MeaSurement Tool to Assess Reviews) tool. DATA SOURCES: MEDLINE, EBM Reviews, Cochrane Reviews, CINAHL, Global Health, PsycINFO, and EMBASE were searched for ACP-related research from inception of each database to April 2017. Searches were supplemented with gray literature and manual searches. Eighty systematic reviews, covering over 1660 original articles, were included in the analysis. RESULTS: Legislations, institutional policies, and cultural factors influence ACP development. Positive perceptions toward ACP do not necessarily translate into more end-of-life conversations. Many factors related to patients' and providers' attitudes, and perceptions toward life and mortality influence ACP implementation, decision making, and completion. Limited, low-quality evidence points to several ACP benefits, such as improved end-of-life communication, documentation of care preferences, dying in preferred place, and health care savings. Recurring features that make ACP programs effective include repeated and interactive discussion sessions, decision aids, and interventions targeting multiple stakeholders. CONCLUSIONS: Preliminary evidence highlights several elements that influence the ACP process and provides a variety of features that could support successful, effective, and sustainable ACP implementation. However, this evidence is compartmentalized and limited. Further studies evaluating ACP as a unified program and assessing the impact of ACP for different populations, settings, and contexts are needed to develop programs that are able to unleash ACP's full potential.