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

Hye Yoon Park, Young Ae Kim, Jin Ah Sim, Jihye Lee, Hyewon Ryu, Jung Lim Lee, Chi Hoon Maeng, Jung Hye Kwon, Yu Jung Kim, Eun Mi Nam, Hyun Jeong Shim, Eun Kee Song, Kyung Hae Jung, Eun Joo Kang, Jung Hun Kang, Young Ho Yun

Research output: Contribution to journalArticle

Abstract

Context: To respect a patient's wish for end-of-life care, “the Act on Decisions on Life-Sustaining Treatment for Patients at the End-of-Life” was enacted in South Korea in 2016. Current understanding of people who would be involved in advance care planning (ACP) is crucial to disseminate it systematically. Objectives: The objective of this study was to investigate awareness and attitudes toward ACP in South Korea. Methods: A multicenter, nationwide cross-sectional study was conducted, a survey regarding ACP among four groups that would have different positions and experiences: 1001 cancer patients, 1006 family caregivers, 928 physicians, and 1241 members of the general public. Results: A total of 15% of the general population, 33% of the patients and caregivers, and 61% of the physicians had knowledge of advance directives. More than 64% of the general population, above 72% of the patients and caregivers, and 97% of the physicians were willing to do so when the disease status was aggravated or terminal. The possibility for changing the plan, uncertainty as to whether directives would actually be followed, and psychological discomfort were common reasons for not wanting to engage in ACP. Routine recommendations for a specific medical condition, heightened accessibility, and health insurance support were common factors that could help facilitate ACP. Conclusion: Our findings suggest that strategies for promoting ACP should reflect different perspectives among the general public, patients, family caregivers, and physicians. Public advocacy, resources for approaching and integrating ACP into routine health care, as well as systematic support provisions are needed.

Original languageEnglish
JournalJournal of Pain and Symptom Management
DOIs
Publication statusAccepted/In press - 2019 Jan 1

Fingerprint

Advance Care Planning
Family Physicians
Caregivers
Decision Making
Neoplasms
Republic of Korea
Physicians
Therapeutics
Consumer Advocacy
Advance Directives
Terminal Care
Health Insurance
Surveys and Questionnaires
Population
Uncertainty
Cross-Sectional Studies
Psychology
Delivery of Health Care

Keywords

  • Advance care planning
  • advance directives
  • decision-making
  • life support care
  • terminal care

ASJC Scopus subject areas

  • Nursing(all)
  • Clinical Neurology
  • Anesthesiology and Pain Medicine

Cite this

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. / Park, Hye Yoon; Kim, Young Ae; Sim, Jin Ah; Lee, Jihye; Ryu, Hyewon; Lee, Jung Lim; Maeng, Chi Hoon; Kwon, Jung Hye; Kim, Yu Jung; Nam, Eun Mi; Shim, Hyun Jeong; Song, Eun Kee; Jung, Kyung Hae; Kang, Eun Joo; Kang, Jung Hun; Yun, Young Ho.

In: Journal of Pain and Symptom Management, 01.01.2019.

Research output: Contribution to journalArticle

Park, Hye Yoon ; Kim, Young Ae ; Sim, Jin Ah ; Lee, Jihye ; Ryu, Hyewon ; Lee, Jung Lim ; Maeng, Chi Hoon ; Kwon, Jung Hye ; Kim, Yu Jung ; Nam, Eun Mi ; Shim, Hyun Jeong ; Song, Eun Kee ; Jung, Kyung Hae ; Kang, Eun Joo ; Kang, Jung Hun ; Yun, Young Ho. / 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: Journal of Pain and Symptom Management. 2019.
@article{af131caf5e6d494c8937068f6793ad81,
title = "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",
abstract = "Context: To respect a patient's wish for end-of-life care, “the Act on Decisions on Life-Sustaining Treatment for Patients at the End-of-Life” was enacted in South Korea in 2016. Current understanding of people who would be involved in advance care planning (ACP) is crucial to disseminate it systematically. Objectives: The objective of this study was to investigate awareness and attitudes toward ACP in South Korea. Methods: A multicenter, nationwide cross-sectional study was conducted, a survey regarding ACP among four groups that would have different positions and experiences: 1001 cancer patients, 1006 family caregivers, 928 physicians, and 1241 members of the general public. Results: A total of 15{\%} of the general population, 33{\%} of the patients and caregivers, and 61{\%} of the physicians had knowledge of advance directives. More than 64{\%} of the general population, above 72{\%} of the patients and caregivers, and 97{\%} of the physicians were willing to do so when the disease status was aggravated or terminal. The possibility for changing the plan, uncertainty as to whether directives would actually be followed, and psychological discomfort were common reasons for not wanting to engage in ACP. Routine recommendations for a specific medical condition, heightened accessibility, and health insurance support were common factors that could help facilitate ACP. Conclusion: Our findings suggest that strategies for promoting ACP should reflect different perspectives among the general public, patients, family caregivers, and physicians. Public advocacy, resources for approaching and integrating ACP into routine health care, as well as systematic support provisions are needed.",
keywords = "Advance care planning, advance directives, decision-making, life support care, terminal care",
author = "Park, {Hye Yoon} and Kim, {Young Ae} and Sim, {Jin Ah} and Jihye Lee and Hyewon Ryu and Lee, {Jung Lim} and Maeng, {Chi Hoon} and Kwon, {Jung Hye} and Kim, {Yu Jung} and Nam, {Eun Mi} and Shim, {Hyun Jeong} and Song, {Eun Kee} and Jung, {Kyung Hae} and Kang, {Eun Joo} and Kang, {Jung Hun} and Yun, {Young Ho}",
year = "2019",
month = "1",
day = "1",
doi = "10.1016/j.jpainsymman.2018.12.332",
language = "English",
journal = "Journal of Pain and Symptom Management",
issn = "0885-3924",
publisher = "Elsevier Inc.",

}

TY - JOUR

T1 - Attitudes of the General Public, Cancer Patients, Family Caregivers, and Physicians Toward Advance Care Planning

T2 - A Nationwide Survey Before the Enforcement of the Life-Sustaining Treatment Decision-Making Act

AU - Park, Hye Yoon

AU - Kim, Young Ae

AU - Sim, Jin Ah

AU - Lee, Jihye

AU - Ryu, Hyewon

AU - Lee, Jung Lim

AU - Maeng, Chi Hoon

AU - Kwon, Jung Hye

AU - Kim, Yu Jung

AU - Nam, Eun Mi

AU - Shim, Hyun Jeong

AU - Song, Eun Kee

AU - Jung, Kyung Hae

AU - Kang, Eun Joo

AU - Kang, Jung Hun

AU - Yun, Young Ho

PY - 2019/1/1

Y1 - 2019/1/1

N2 - Context: To respect a patient's wish for end-of-life care, “the Act on Decisions on Life-Sustaining Treatment for Patients at the End-of-Life” was enacted in South Korea in 2016. Current understanding of people who would be involved in advance care planning (ACP) is crucial to disseminate it systematically. Objectives: The objective of this study was to investigate awareness and attitudes toward ACP in South Korea. Methods: A multicenter, nationwide cross-sectional study was conducted, a survey regarding ACP among four groups that would have different positions and experiences: 1001 cancer patients, 1006 family caregivers, 928 physicians, and 1241 members of the general public. Results: A total of 15% of the general population, 33% of the patients and caregivers, and 61% of the physicians had knowledge of advance directives. More than 64% of the general population, above 72% of the patients and caregivers, and 97% of the physicians were willing to do so when the disease status was aggravated or terminal. The possibility for changing the plan, uncertainty as to whether directives would actually be followed, and psychological discomfort were common reasons for not wanting to engage in ACP. Routine recommendations for a specific medical condition, heightened accessibility, and health insurance support were common factors that could help facilitate ACP. Conclusion: Our findings suggest that strategies for promoting ACP should reflect different perspectives among the general public, patients, family caregivers, and physicians. Public advocacy, resources for approaching and integrating ACP into routine health care, as well as systematic support provisions are needed.

AB - Context: To respect a patient's wish for end-of-life care, “the Act on Decisions on Life-Sustaining Treatment for Patients at the End-of-Life” was enacted in South Korea in 2016. Current understanding of people who would be involved in advance care planning (ACP) is crucial to disseminate it systematically. Objectives: The objective of this study was to investigate awareness and attitudes toward ACP in South Korea. Methods: A multicenter, nationwide cross-sectional study was conducted, a survey regarding ACP among four groups that would have different positions and experiences: 1001 cancer patients, 1006 family caregivers, 928 physicians, and 1241 members of the general public. Results: A total of 15% of the general population, 33% of the patients and caregivers, and 61% of the physicians had knowledge of advance directives. More than 64% of the general population, above 72% of the patients and caregivers, and 97% of the physicians were willing to do so when the disease status was aggravated or terminal. The possibility for changing the plan, uncertainty as to whether directives would actually be followed, and psychological discomfort were common reasons for not wanting to engage in ACP. Routine recommendations for a specific medical condition, heightened accessibility, and health insurance support were common factors that could help facilitate ACP. Conclusion: Our findings suggest that strategies for promoting ACP should reflect different perspectives among the general public, patients, family caregivers, and physicians. Public advocacy, resources for approaching and integrating ACP into routine health care, as well as systematic support provisions are needed.

KW - Advance care planning

KW - advance directives

KW - decision-making

KW - life support care

KW - terminal care

UR - http://www.scopus.com/inward/record.url?scp=85060851023&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85060851023&partnerID=8YFLogxK

U2 - 10.1016/j.jpainsymman.2018.12.332

DO - 10.1016/j.jpainsymman.2018.12.332

M3 - Article

JO - Journal of Pain and Symptom Management

JF - Journal of Pain and Symptom Management

SN - 0885-3924

ER -