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The Korean advance directive (K–AD) comprises a value statement, treatment directives, preferences for cardiopulmonary resuscitation (CPR), artificial ventilation, tube feeding, and hospice care, as well as a proxy appointment. The K–AD can facilitate a patient's decision making with respect to end-of-life (EoL) care. The present study aimed to examine the extent to which patient–caregiver dyads would use the K–AD and agree on EoL care decisions.
Using a descriptive study design, 81 cancer patients were invited to participate. The final sample consisted of 44 patient–caregiver dyads who completed survey questionnaires, including the K–AD. One patient did not complete all parts of the questionnaire, and 36 (44.4%) declined to participate. Content analysis was conducted to examine the K–AD value statements. Cohen's kappa coefficient was calculated to determine the degree of patient–caregiver dyadic agreement on K–AD treatment directives (Sudore & Fried, 2010).
Our patient participants had the following cancer diagnoses: colorectal 29.5%, breast 29.5%, and liver/biliary tract cancers, 15.9%. Half of the sample had advanced-stage disease. Spouses (70.5%) or adult children (20.4%) were the primary caregivers, with perceived bonding rated as fair (31.8%) or good (65.9%). Rejection of the K–AD was mainly due to the difficulty involved in deciding on EoL care (50%). Comfort while dying was the most common theme expressed by patients (73.8%) and caregivers (66.7%). In terms of treatment directives, dyads advocated for hospice care (66.7%) and reduced support for aggressive treatments of CPR or artificial ventilation. The use of CPR (κ = 0.43, p = 0.004) and artificial ventilation (κ = 0.28, p = 0.046) showed significantly mild to moderate concordance among the dyads. Some 16 of the 21 dyads identified their spouses as a proxy, with others designating their adult children.
Significance of results:
The degree of patient–caregiver concordance on the K–AD seemed applicable, and achieved mild to moderate concordance. Our findings are exploratory but suggest the need for EoL discussions where patient–caregiver dyads are encouraged to participate in EoL care decision making.
In Korea, patients with terminal cancer are often caught out of the loop in end-of-life (EoL) care discussions. Healthcare professionals also have difficulty engaging in such communication in a variety of healthcare contexts. Therefore, the objective of our study was to develop a communication model for EoL care decision making compatible with the clinical environment in Korea.
Using focus-group interview methodology, participants included eight doctors and five nurses who provide EoL care for terminal cancer patients in acute hospital settings or hospice care facilities in various provinces of Korea.
Five themes emerged regarding EoL care discussion, which included: (1) timing, (2) responsible professionals, (3) disclosure of bad news, (4) content areas of EoL care discussion, and (5) implementing strategies for EoL care discussions. These themes were based on development of a communication algorithm for EoL discussion among patients with terminal cancer. A structural communication step for delivery of a terminal prognosis was specified at the phase of disclosure of bad news: beginning with determination of a patient's decision-making capability, followed by a patient's perception of his/her condition, a patient's wish to know, family dynamics, and a patient's and/or family's readiness for EoL discussions.
Significance of Results:
The proposed context-oriented communication algorithm could provide a helpful guideline for EoL communication and, accordingly, facilitate meaningful improvements in EoL care in Korean clinical practice. The feasibility of this algorithm has not yet been determined, and its validation in a larger sample of patients with terminal cancers, using a quantitative research methodology, is a priority of research.
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