Many patients have no chance to speak what they want at the end of life and receive the treatment that they do not want. In 2018, the Act on Hospice & Palliative Care and Patient Determination of Life Sustaining Treatments was implemented to respect the patient’s right to self-determination in Korea. Knowing the patient’s preferences is very important. However, starting a conversation about end-of-life care is not easy. Advance care planning (ACP) is a communication process between the patient, family, and health care providers to understand, discuss, and plan future health care decisions in the event that the patient loses capacity . However, discussions about ACP do not occur as frequently as they should. Several studies have conducted to find a way to make this conversation easy. The purpose of this study was to systematically review reports of published randomized controlled trials (RCTs) to ascertain the effectiveness of an ACP intervention.
Methods:
1. Study design: The design of this study is a systematic review.
2. Data Source:
We systematically searched PubMed, EMBASE, and CINAHL as well as several Korean search engines, including RISS, KISS, KMBASE, and KoreaMed for finding Korean studies. Target population(P) was all population including pediatric patients. Target intervention was the types of advance (health or medical) care planning, end-of-life discussion. Target outcomes were the completion of advance directives, satisfactions about the discussion or decisions, quality of communication, and any changes in psychosocial outcomes.
3. Study selection:
A total of 2,142 records were searched. As a result of screening the title and abstract, 2123 records were removed. Nineteen full text articles were assessed for eligibility, and then 12 articles were excluded due to non- RCTs (2 articles), study proposal (2 articles), no report of statistical values of outcome variables (2 articles), and no targeted outcome variables (6 articles). As a result, 7 articles were included in quantitative synthesis in our study.
4. Quality evaluation of studies:
Quality evaluation of studies were conducted by using the Scottish intercollegiate guideline network (SIGN) methodology checklist for RCTs. All 7 studies included in the synthesis were evaluated to an acceptable level (+) because a lack of evidence of the use of appropriate concealment method and/or blind method.
Results:
- Study characteristics:
Studies were conducted with different patient populations, such as chronic obstructive pulmonary disease, chronic kidney disease, chronic heart failure, pediatric cancer, LAVD, life-limiting illness in USA(6 studies) and Australia. Four studies recruited dyads of the patient and their family. Different interventions were investigated, such as the Sharing patient’s illness representations to increase trust (SPIRIT) program, the Family centered advance care planning for teens with cancer treatment (FACE-TC) program, the Patient-centered advance care planning(PC-ACP) program, the Respecting patient choices program, and several self-developed interventions such as conversations with the physician by using the individualized one-page patient-specific feedback form and an education by watching advance directive videotape.
2. Outcomes of the interventions
Three studies investigated the effect on the dyad congruence between patients and their surrogates and reported increased dyad congruence about the use of life-sustaining treatment as a result of a complex ACP intervention. Two studies investigated the effect on the patient decision: one reported decreased decision conflict, while one reported no significant effect on the patient’s decision conflict. Two studies investigated surrogate’s decision making confidence: one reported increased confidence, while one reported no significant effect on the surrogate’s confidence. One study investigated the quality of communication about EOL care and reported increased quality of communication and more discussions about EOL care with clinicians and surrogates.
Two studies investigated surrogate bereavement outcomes, including anxiety and depression; two studies reported less depression in the intervention group; one study reported less anxiety in the intervention group, while another study reported no significant effect on depression. One study reported less PTSD, while another study reported less family stress after the death of the patient. For patients, one study reported less depression and increased quality of life as a result of the intervention.
One study reported increased quality of communication with clinicians and surrogates. Two studies investigated perceptions of advance directives and reported more positive perceptions of advance directives in the intervention group.
Conclusion:
ACP interventions generally have positive effects and outcomes. However, there was no studies using the Korean population in this review. In a situation where the Act on Hospice & Palliative Care and Patient Determination of Life Sustaining Treatments is being implemented in 2018 in Korea, future studies should focus on the best way to implement a culturally congruent ACP for Korean populations.