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Address correspondence to Diah Martina, MD, Department of Medical Oncology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, Dr. Molewaterplein 40, 3015 GD, Rotterdam, the Netherlands.
Department of Medical Oncology, Erasmus MC Cancer Institute, University Medical Center Rotterdam, Rotterdam, the NetherlandsDepartment of Public Health, Erasmus MC, University Medical Center Rotterdam, Rotterdam, the NetherlandsDivision of Psychosomatic and Palliative Medicine, Department of Internal Medicine, Universitas Indonesia, IndonesiaCipto Mangunkusumo National Center Hospital, Jakarta, Indonesia
Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King's College London, London, United KingdomInstitute of Community Health Care, School of Nursing, National Yang-Ming University, Taipei, Taiwan
The value of advance care planning (ACP) for patients with life-limiting illnesses is widely recognized but Asian health care professionals' (HCPs') perspectives on ACP have received little systematic attention. We aim to synthesize evidence regarding Asian HCPs’ knowledge of, attitudes toward, and experiences with ACP.
Design
Systematic review with narrative synthesis and stepwise thematic analysis.
Setting and Participants
HCPs in southern, eastern, and southeastern Asia.
Methods
Studies from inception to September 2019 were identified from English-language searches of Embase, MEDLINE, Web of Science, and Google Scholar with reference-chaining and hand-searching. Two investigators independently screened and assessed the risk of bias in all original studies reporting HCPs’ knowledge of, attitudes toward, and experiences with ACP, including their perspectives toward barriers and facilitators of ACP.
Results
Fifty-one studies were included; 42 were quantitative, 43 had been conducted in high-income countries, and 36 were of good quality. Twenty-six studies operationalized ACP as the completion of an advance directive rather than a value-exploration process. Thirteen studies reported knowledge, 44 attitudes, 29 experiences, and 36 barriers and facilitators of ACP. Asian HCPs addressed the essential role of families in ACP. They acknowledge the importance of ACP but rarely engage the patient in it. They considered ACP difficult to initiate, partly because of their lack of knowledge and skills in ACP, personal uneasiness to conduct ACP, fear of conflicts with family members and their legal consequences, and the lack of a standard system for ACP. Most studies indicated HCPs’ low engagement and late initiation of ACP.
Conclusions and Implications
Despite acknowledging its importance, Asian HCPs felt that engaging in ACP is challenging. Capacity building for ACP in Asia should focus on culturally adapting ACP models concerning the essential role of the family in Asia, education for HCPs and the public, and providing institutional support for ACP.
Complex decisions regarding medical care and treatment often need to be made during life-limiting disease trajectories. If health care professionals (HCPs) do not clearly understand patients’ life goals and care preferences, patients may not always be treated in accordance with their preferences.
Advance care planning (ACP) is a process that enables individuals, family members, and HCPs to define, discuss, document, and review goals and preferences for future medical care and treatment.
Systematic reviews have shown that ACP has the potential to improve the quality of end-of-life care, the documentation of care preferences, the provision of goal-concordant care, and the use of palliative and hospice care, while potentially reducing the cost.
—the largest and most populous continent in the world, and the home of various cultures. Examples of cultural values that may affect the uptake of ACP in Asia include family-centeredness in medical decision making,
Central to these values is the great importance of social harmony and interdependence. Meanwhile, Asians require more support from their HCPs to voice their own wishes.
Asian HCPs' perspectives on ACP have not been systematically analyzed. We therefore aimed to synthesize and appraise the evidence from Asia with regard to HCPs’ knowledge of ACP, their attitudes toward it, and their experiences with it and also to the barriers and facilitators related to their engagement in ACP.
Methods
The study protocol has been registered in the International Prospective Register of Systematic Reviews (PROSPERO: CRD42018099980). The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement was used for reporting (Supplementary Table 1).
With the aid of a biomedical information specialist (WMB), we developed a systematic search strategy based on the predetermined research question in the following electronic databases: Embase.com (1971-), MEDLINE ALL Ovid (1946-), Web of Science Core Collection (1975-), and Google Scholar from inception to September 2019. We used the tailored search terms for each database, using thesaurus terms (Emtree and MeSH) where applicable. Supplementary Table 2 shows the full searches for all databases. The searches not only contained words for ACP and advance directive (AD) but also were designed to retrieve articles on decision making for the end of life. To ensure a comprehensive search, we scanned the reference lists from relevant existing literature reviews and from the included articles, and finally asked several experts in the field of ACP in Asia whether important studies that met our inclusion and exclusion criteria had been missed.
Study Selection
We did not limit the type of study designs for this review and included all original studies that studied “advance care planning,” or studies that addressed one or both core elements of ACP as defined by the European Association for Palliative Care (EAPC)
The Japan HOspice and Palliative Care Evaluation Study (J-HOPE Study): views about legalization of death with dignity and euthanasia among the bereaved whose family member died at palliative care units.
Death, dying, and advance directives in Japan: Socio-cultural and legal point of view.
in: Sass H. Veatch R. Kimura R. Advance Directive and Surrogate Decision Making in Transcultural Perspective. Johns Hopkins University Press,
Baltimore, MD1998
For the aim of this review, we included professionals that the authors had labeled as “health care professionals” or those who followed WHO definition as “professionals who maintain health in humans through the application of the principles and procedures of evidence-based medicine and caring.”
World Health Organization Definition and list of health professionals. In: Transforming and Scaling Up Health Professionals' Education and Training: World Health Organization Guidelines 2013.
This may include, but is not limited to, physicians, nurses, social workers, and care managers. Because of the sheer size of the Asian continent, we limited our search to its southern, eastern, and southeastern regions (Supplementary Table 3), whose similarities in cultural background provided a reasonable representation of collectivism in Eastern cultures.
We included original articles on HCPs' knowledge of, attitudes toward, or experiences with ACP that had been published in English in peer-reviewed journals. We excluded studies in which the specific elements of ACP were not clearly described, and studies on HCPs’ perspectives toward ACP among patients younger than 18 years or patients with psychiatric illnesses other than dementias.
Duplicates of the retrieved studies were removed, and each title and abstract was screened by 2 of 3 reviewers (D.M., M.S.K., and C.P.L.) independently. This was followed by full-text reviewing for inclusion. Disagreements were discussed with J.R. and/or C.R. if necessary. Endnote bibliographic software version X9 was used to manage references.
Data Extraction and Quality Assessment
A tailored data extraction form was developed and piloted by J.R. and C.R. and further used to extract data that included (1) the study characteristics (study design, country or region, the element and term related to ACP studied, number of HCPs, type of HCPs, and setting); (2) HCPs' knowledge of ACP; (3) HCPs' attitudes toward and experiences with ACP; (4) HCPs’ perspectives on barriers and facilitators related to engagement in ACP. The extraction form was completed by DM and checked by MSK.
to assess the methodologic quality of the included studies. Per study, the risk of bias was evaluated for the following items: (1) abstract and title, (2) introduction and aims, (3) methods and data, (4) sampling, (5) data analysis, (6) ethics and bias, (7) results, (8) transferability, and (9) implications. Each criterion was scored on a 4-point Likert-type scale ranging from 1 (very poor) to 4 (good). In total, a summed score of 9 to 36 was calculated. Studies with scores between 30 and 36 were classified as having a low risk of bias, studies with scores between 24 and 29 were classified as having a moderate risk, and scores lower than 24 were classified as having a high risk.
Studies were not excluded on the basis of their methodological quality. D.M. assessed all studies, 50% of which were randomly selected and checked independently by C.P.L.
Data Synthesis and Analysis
Following the Guidance on the Conduct of Narrative Synthesis in Systematic Reviews, a narrative synthesis was conducted of the included quantitative, qualitative, and mixed methods studies.
To summarize the findings of the included articles, we conducted textual description of the extracted data, tabulation, grouping, and clustering. This was followed by a stepwise thematic analysis. A critical interpretive synthesis approach was used to categorize knowledge, attitudes, experiences, barriers, and facilitators into domains.
After deduplication, we identified 3887 studies for titles and abstracts screening. Three studies were added following a manual search and input from experts in Asia, and 244 studies were assessed for full-text review. Ultimately, 51 studies were included in the analysis (Figure 1).
Most of the studies included were quantitative, among which 42 were surveys, 19 were conducted in hospital settings, and most included fewer than 500 HCPs (n = 45), were performed among physicians (n = 42), and were from high-income countries (Table 1 and Supplementary Table 4): Japan,
A national survey to systematically identify factors associated with oncologists' attitudes toward end-of-life discussions: what determines timing of end-of-life discussions?.
Practice and perceived importance of advance care planning and difficulties in providing palliative care in geriatric health service facilities in Japan: A nationwide survey.
Barriers to promoting advance care planning for residents living in a sanatorium for Hansen's disease: A qualitative study of residents and staff in Japan.
Attitudes of the general public, cancer patients, family caregivers, and physicians toward advance care planning: A nationwide survey before the enforcement of the life-sustaining treatment decision-making Act.
The effects of South Korean social workers' professional resources on their understanding of a patient's right to end-of-life care decisions in long-term care facilities.
Advance care planning in a multicultural family centric community: A qualitative study of health care professionals', patients', and caregivers' perspectives.
Factors that influence the participation of healthcare professionals in advance care planning for patients with terminal cancer: A nationwide survey in Taiwan.
What influences patients’ decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals.
Twenty-six studies operationalized ACP merely as the documentation process. The term ACP was used in 12 studies that had been published in the last decade (Tables 1 and 2). Thirteen studies reported on HCPs’ knowledge, 44 studies on attitudes, 29 on experiences, and 36 on barriers and facilitators of ACP. The risk of bias was low in 36 studies, moderate in 13, and high in 2 (Supplementary Table 5).
Table 1Characteristics of the Included Studies (n = 51)
Practice and perceived importance of advance care planning and difficulties in providing palliative care in geriatric health service facilities in Japan: A nationwide survey.
Advance care planning in a multicultural family centric community: A qualitative study of health care professionals', patients', and caregivers' perspectives.
A cross-sectional study of knowledge and attitudes of medical professionals towards end-of-life decisions in teaching hospitals of Kandy District (Sri Lanka).
Attitudes of the general public, cancer patients, family caregivers, and physicians toward advance care planning: A nationwide survey before the enforcement of the life-sustaining treatment decision-making Act.
Barriers and perceptions regarding code status discussion with families of critically ill patients in a tertiary care hospital of a developing country: A cross-sectional study.
Physicians' attitudes and practices regarding advanced end-of-life care planning for terminally ill patients at Chiang Mai University Hospital, Thailand.
Advance care planning in a multicultural family centric community: A qualitative study of health care professionals', patients', and caregivers' perspectives.
A cross-sectional study of knowledge and attitudes of medical professionals towards end-of-life decisions in teaching hospitals of Kandy District (Sri Lanka).
A national survey to systematically identify factors associated with oncologists' attitudes toward end-of-life discussions: what determines timing of end-of-life discussions?.
Attitudes of the general public, cancer patients, family caregivers, and physicians toward advance care planning: A nationwide survey before the enforcement of the life-sustaining treatment decision-making Act.
Barriers and perceptions regarding code status discussion with families of critically ill patients in a tertiary care hospital of a developing country: A cross-sectional study.
What influences patients’ decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals.
Practice and perceived importance of advance care planning and difficulties in providing palliative care in geriatric health service facilities in Japan: A nationwide survey.
Factors that influence the participation of healthcare professionals in advance care planning for patients with terminal cancer: A nationwide survey in Taiwan.
Physicians' attitudes and practices regarding advanced end-of-life care planning for terminally ill patients at Chiang Mai University Hospital, Thailand.
Physicians' attitudes and practices regarding advanced end-of-life care planning for terminally ill patients at Chiang Mai University Hospital, Thailand.
A cross-sectional study of knowledge and attitudes of medical professionals towards end-of-life decisions in teaching hospitals of Kandy District (Sri Lanka).
A national survey to systematically identify factors associated with oncologists' attitudes toward end-of-life discussions: what determines timing of end-of-life discussions?.
Eleven of the 13 studies on HCPs’ knowledge of ACP assessed their knowledge of the documents related to ACP, such as ADs or DNR orders (Supplementary Table 6).
Attitudes of the general public, cancer patients, family caregivers, and physicians toward advance care planning: A nationwide survey before the enforcement of the life-sustaining treatment decision-making Act.
The effects of South Korean social workers' professional resources on their understanding of a patient's right to end-of-life care decisions in long-term care facilities.
A cross-sectional study of knowledge and attitudes of medical professionals towards end-of-life decisions in teaching hospitals of Kandy District (Sri Lanka).
Attitudes of the general public, cancer patients, family caregivers, and physicians toward advance care planning: A nationwide survey before the enforcement of the life-sustaining treatment decision-making Act.
In Sri Lanka, while 67% of physicians had heard of DNR orders and 21% of ADs, only half of them (26% and 12%, respectively) understood the correct meanings of the terms.
A cross-sectional study of knowledge and attitudes of medical professionals towards end-of-life decisions in teaching hospitals of Kandy District (Sri Lanka).
In a qualitative study, more physicians than nurses and medical social workers had heard of ACP, but few of them understood it as a series of conversations.
Advance care planning in a multicultural family centric community: A qualitative study of health care professionals', patients', and caregivers' perspectives.
Asian HCPs’ Attitudes Toward and Experiences With ACP
We synthesized the findings from 41 studies reporting Asian HCPs' attitudes toward ACP and 30 studies reporting Asian HCPs’ experiences with ACP into 12 and 9 categories based on the similar outcomes reported (see Table 3 and Supplementary Tables 7 and 8).
Table 3HCPs- and System-Related Barriers and Facilitators of ACP in Asia According to HCPs
HCP-Related Barriers and Facilitators
HCP-Related Barriers
HCP-Related Facilitators
HCPs limited knowledge about and skills regarding ACP
HCPs competence in ACP and EOL care
HCPs' limited knowledge about and skills regarding EOL care (incl. prognostication) and ACP
A national survey to systematically identify factors associated with oncologists' attitudes toward end-of-life discussions: what determines timing of end-of-life discussions?.
Barriers to promoting advance care planning for residents living in a sanatorium for Hansen's disease: A qualitative study of residents and staff in Japan.
Attitudes of the general public, cancer patients, family caregivers, and physicians toward advance care planning: A nationwide survey before the enforcement of the life-sustaining treatment decision-making Act.
Advance care planning in a multicultural family centric community: A qualitative study of health care professionals', patients', and caregivers' perspectives.
What influences patients’ decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals.
Barriers and perceptions regarding code status discussion with families of critically ill patients in a tertiary care hospital of a developing country: A cross-sectional study.
A national survey to systematically identify factors associated with oncologists' attitudes toward end-of-life discussions: what determines timing of end-of-life discussions?.
Practice and perceived importance of advance care planning and difficulties in providing palliative care in geriatric health service facilities in Japan: A nationwide survey.
Attitudes of the general public, cancer patients, family caregivers, and physicians toward advance care planning: A nationwide survey before the enforcement of the life-sustaining treatment decision-making Act.
Factors that influence the participation of healthcare professionals in advance care planning for patients with terminal cancer: A nationwide survey in Taiwan.
Attitudes of the general public, cancer patients, family caregivers, and physicians toward advance care planning: A nationwide survey before the enforcement of the life-sustaining treatment decision-making Act.
Advance care planning in a multicultural family centric community: A qualitative study of health care professionals', patients', and caregivers' perspectives.
A cross-sectional study of knowledge and attitudes of medical professionals towards end-of-life decisions in teaching hospitals of Kandy District (Sri Lanka).
A national survey to systematically identify factors associated with oncologists' attitudes toward end-of-life discussions: what determines timing of end-of-life discussions?.
What influences patients’ decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals.
Barriers to promoting advance care planning for residents living in a sanatorium for Hansen's disease: A qualitative study of residents and staff in Japan.
What influences patients’ decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals.
Barriers and perceptions regarding code status discussion with families of critically ill patients in a tertiary care hospital of a developing country: A cross-sectional study.
Barriers and perceptions regarding code status discussion with families of critically ill patients in a tertiary care hospital of a developing country: A cross-sectional study.
A national survey to systematically identify factors associated with oncologists' attitudes toward end-of-life discussions: what determines timing of end-of-life discussions?.
A national survey to systematically identify factors associated with oncologists' attitudes toward end-of-life discussions: what determines timing of end-of-life discussions?.
Barriers to promoting advance care planning for residents living in a sanatorium for Hansen's disease: A qualitative study of residents and staff in Japan.
Attitudes of the general public, cancer patients, family caregivers, and physicians toward advance care planning: A nationwide survey before the enforcement of the life-sustaining treatment decision-making Act.
Advance care planning in a multicultural family centric community: A qualitative study of health care professionals', patients', and caregivers' perspectives.
Barriers and perceptions regarding code status discussion with families of critically ill patients in a tertiary care hospital of a developing country: A cross-sectional study.
A national survey to systematically identify factors associated with oncologists' attitudes toward end-of-life discussions: what determines timing of end-of-life discussions?.
Advance care planning in a multicultural family centric community: A qualitative study of health care professionals', patients', and caregivers' perspectives.
A cross-sectional study of knowledge and attitudes of medical professionals towards end-of-life decisions in teaching hospitals of Kandy District (Sri Lanka).
Barriers to promoting advance care planning for residents living in a sanatorium for Hansen's disease: A qualitative study of residents and staff in Japan.
Advance care planning in a multicultural family centric community: A qualitative study of health care professionals', patients', and caregivers' perspectives.
Physicians' attitudes and practices regarding advanced end-of-life care planning for terminally ill patients at Chiang Mai University Hospital, Thailand.
Factors that influence the participation of healthcare professionals in advance care planning for patients with terminal cancer: A nationwide survey in Taiwan.
Barriers and perceptions regarding code status discussion with families of critically ill patients in a tertiary care hospital of a developing country: A cross-sectional study.
Barriers to promoting advance care planning for residents living in a sanatorium for Hansen's disease: A qualitative study of residents and staff in Japan.
Attitudes of the general public, cancer patients, family caregivers, and physicians toward advance care planning: A nationwide survey before the enforcement of the life-sustaining treatment decision-making Act.
Attitudes of the general public, cancer patients, family caregivers, and physicians toward advance care planning: A nationwide survey before the enforcement of the life-sustaining treatment decision-making Act.
What influences patients’ decisions regarding palliative care in advance care planning discussions? Perspectives from a qualitative study conducted with advanced cancer patients, families and healthcare professionals.