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: 1,001 cancer patients, 1,006 family caregivers, 928 physicians, and 1,005 members of the general public. Results. A total of 16% of the general population, 33% of the patients and caregivers, and 61% of the physicians had knowledge of advance directives. More than 63% 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.

Life-Sustaining Treatment States in Korean Cancer Patients after Enforcement of Act on Decisions on Life-Sustaining Treatment for Patients at the End of Life

“…In a study before the law was enacted, it reported the findings on whether life-sustaining treatment decision forms could be applied in the actual oncological practice. An Korea reported that a total of 15% of the general population, 33% of the patients and caregivers, and 61% of the physicians had knowledge of advance directives [11]. From these results, Koreans lacked awareness regarding the process of discussing medical care and determining life-sustaining treatment at the end-of-life.…”

Implication of the Life-Sustaining Treatment Decisions Act on End-of-Life Care for Korean Terminal Patients

“…In Korea, physicians tend to avoid telling the truth to patients directly, concerned that they might be frightened or depressed, so family caregivers are frequently surrogate decision-makers, and do not always respect the patient’s will [ 11 ]. However, patients want to know their disease status [ 16 ] and discuss ACP in person [ 17 ]. Not considering patient’s own values, wishes, and goals may result in unnecessary LSTs [ 18 ] and deteriorate quality of life for patients and caregivers [ 4 , 5 ].…”

“…Additionally, in Korea, DNR orders are usually written in a week before dying [ 7 , 9 , 15 ], which means that most of them are documented without proper ACP. To be more effective, we should consider initiating ACP discussion when a patient is diagnosed with critical or terminal illness [ 17 , 26 ]. However, short outpatient consultation time [ 27 ], communication difficulties [ 26 ], or patients' inaccurate understanding of illness [ 1 , 28 ] may hinder early initiation of ACP.…”

A National Study of Life-Sustaining Treatments in South Korea: What Factors Affect Decision-Making?

“…A previous study on intensive care unit doctors in Asia reported that among the factors that these doctors considered to be important in making LSTrelated decisions, the needs of the family accounted for 77.9%; it was only surpassed by the factors patient's intention (84.1%) and long-term quality of life [3]. It is well-established fact that the physician's perception of the intention of the family and the preference of the patient may sometimes be different than the patient's original intention [1,20,21]. Personal characteristics or experience of the physician could also influence LST-related decisions, which inherently presents the risk of a decision being made contrary to the patient's intention [11].…”

“…Considering that one in three US adults files any type of advance statement on LST [17], longterm policies for increasing the completion rate of advance statement on LST among adults aged ≥19 years are needed in Asia, including South Korea [20][21][22][23].…”