생애 말기 연명의료결정에 관한 연구: 함께하는 의사결정의 가능성 탐색

Abstract

Since the implementation of the Act on Decisions on Life-Sustaining Treatment for Patients in Hospice and Palliative Care or at the End of Life (LSTD Act), Korea has been realizing a medical decision-making process that reflects patients' preferences and intentions. The LSTD Act is for dying patients and identifies their intention to avail life-sustaining treatment. The patient's intention may be expressed as confirming the contents of the Physician Order for Life-sustaining Treatment (POLST), written by the doctor and advanced directive (AD), previously written by the patient. If the doctor is unable to confirm the patient's intention due to a lack of decision-making ability, the doctor receives a statement from two or more of the patient's family members about their willingness to stop life-sustaining treatment. If the patient does not mention anything about his/her life, the doctor may seek consent from all family members and suspend the patient's life-sustaining treatment. Therefore, the LSTD Act method can be categorized into patients and families, according to the subject of the decision. In addition, the law prioritizes checking the patient's intention by presenting the method of verification sequentially. Considering the current status of the LSTD Act, implemented three years ago, it was much more often according to the family's decision rather than the patient's intention. The LSTD Act is designed to protect patients' right to self-determination, but decisions continue to be made by families instead of patients. This is not consistent with the recent theory of end-of-life decision-making and shared decision-making (SDM). This study determines theoretical facts through a literature review of end-of-life decision-making, which is represented by life-sustaining medical decisions, reflects them in clinical sites, identifies problems, and offers strategies to improve them. This study can be performed in two ways. Through an integrated literature review of13 published studies, we found elements of SDM. A qualitative descriptivestudy was also conducted to confirm the experience of life-sustaining medical decisions. Qualitative descriptive research collected data by conducting in-depth interviews with ten medical staff members from a medical institution with experience in the LSTD system. The data were analyzed according to traditional content analysis methods, and the results of the study were derived. The findings of this study are also two-fold: There are five elements of SDM found in an integrated literature review. (1) SDM should form a partnership between participants. Patients should actively participate in decision-making and have an equal relationship between patients and doctors. (2) Information must be exchanged in SDM. During the decision-making process, doctors provide medical information to patients. The doctor must inform the patient of the medical facts deemed necessary for the patient, including the patient's current condition and the expected outcome. The doctors should also provide the advantages and disadvantages of treatment options and options applicable to the patient's condition. Doctors should determine the patient's decision-making ability and understand and utilize patient-decision-aid to make it easier for the patient to understand. Contrarily, the patient should draw up his/her own ideas and communicate with the doctor. The patient's thoughts should be taken into account for his/her preferences, values, and desired attitudes to life after making decisions. A doctor should draw out the patient's thoughts so that the patient can narrate his/her story. In addition, based on the feedback received to the patient, the patient should be informed of the applicable options and the predicted results. (3) SDM goes through due consideration. Patients and physicians should be provided sufficient time to undergo repeated convergence in the decision-making process. In addition, decision-making participants can be expanded depending on the patient's request or circumstances. The process of deliberation is aimed at giving time to patients, but experts must be constantly involved. (4) SDM shall be made by the patient and the doctor. Decision-making should follow a sufficient understanding of information. In addition, all decision-making participants must share their decisions. A doctor should formulate a treatment plan after making a decision. (5) SDM requires periodic review and confirmation. After deciding, the doctor shall have the patient review the details of the decision. Doctors also need to periodically ask the patient's intentions and recheck when the condition worsens. Qualitative studies have shown the characteristics of the life-sustaining treatment decision process of a single medical institution and problems arising from this. Medical institutions have made efforts to make decisions together with medical staff, patients, and families during the life-sustaining treatment decision process. The doctor shares information about the patient's mental state or preference for deathbed with other medical staff. They encourage their participation by engaging patients and sharing patient’s condition with their families. The medical staff of A Medical Center provided medical information to the patient and confirmed the patient's information through medical records and family members. During the interview, the doctor identified the anxiety and understanding of the patient and the family and gave them about three days to decide. The characteristics of pursuing the best choice were revealed. However, the decision-making process cited problems with decision-making methods that distorted the nature of the patient-centered nature, as well as general and cultural restrictions in the course of legal processes. However, medical staff at A Medical Center communicated with a focus on outcomes rather than decisions. The decision-making process tended to be led by the patient's doctor and lacked awareness of end of life. The medical team believed that they did not have enough time for deliberation given to the patient and talked about the environment in which they did not have enough time to talk in advance. The medical team also said that intervention was not possible in the conflict, and that the Medical Institution Ethics Committee could not resolve the conflict. Therefore, the medical staff were trying to secure their own safety nets in the case of legal disputes. The medical staff were as conscious of the family, as they were of the patient in the decision-making process. The medical staff responded that the life-sustaining treatment decision-making process was led by the family, not by the patient alone. He also said that patients and their families were passive in understanding the disease. Studies show that there is a gap between the theoretical elements of shared decision-making and the status of life-sustaining treatment decisions at medical institution. To address this gap, this study presents obstacles to the decision-making process at the end of life in terms of medical personnel, legal, and socio-cultural aspects. Medical staff had problems with not having partnerships with patients and one-way communication. This is caused by a lack of education about communication, and medical education needs to be improved to improve awareness. The life-sustaining treatment decision-making method is a problem in which life-sustaining treatment decisions are made at the end of the year and at the end of life, and it is difficult for patients to express their opinions. Since the patient is terminally ill, he/she lacks time for deliberation and cannot be reviewed. The law shall be amended to ensure that life-sustaining treatment decisions are made sooner, as the decision on life-sustaining treatment decisions made at the end of life is likely to turn into formal acts. Finally, the life-sustaining treatment decision-making process is heavily influenced by the family. This is a characteristic of family-centered decisions in Eastern cultures and needs to limit and define the role of families. This study proposes improvement measures to move toward decision-making with the life-sustaining treatment decision process. A decision-making team can be formed to reflect the family-centered culture of Korea and the life-sustaining treatment decision-making law. This is an evolution of the theory in which families participate in the decision-making process at the request of patients. The decision-making team can make decisions together from the beginning, involving patients, family members, nurses in charge of patients, and dedicated personnel of the medical institution ethics committee. In addition, patients should be given a wider range of treatment options by exposing life-sustaining treatment care before making terminal judgments. Finally, medical staff must be trained appropriately for mutual communication.

연명의료결정법이 시행된 이래로 한국은 환자의 선호와 의사가 반영된 생애 말기 의학적 의사결정과정을 실현해나가고 있으며 그 과정에서 함께하는 의사결정의 도입의 필요성이 주장되어 왔다. 그러나 환자의 결정보다 가족에 의한 결정이나 판단에 의존하는 등 연명의료결정과정은 생애 말기 의사결정의 최근 지견인 함께하는 의사결정과 부합되지 않는 현상을 보이고 있다. 본 연구는 연명의료결정으로 대표되는 생애말기 의사결정과정에 함께하는 의사결정 문헌을 통해 이론적 사실을 찾아 임상 현장에 반영하여 장애요인을 확인하고 이를 개선할 수 있는 방안을 제시하는 연구이다. 이를 위해 본 연구는 13편의 국내외 문헌을 대상으로 통합적 문헌고찰을 통하여 함께하는 의사결정의 요소를 찾고, 국내 생애말기 의사결정의 특징을 확인하고자 연명의료결정경험에 대한 질적기술연구를 수행하였다. 질적기술연구는 연명의료결정제도를 수행하고 있는 일 의료기관의 의료인 10명에게 심층면담을 실시하여 자료를 수집하였으며, 전통적 내용분석방법에 따라 분석하여 연구결과를 도출하였다. 본 연구의 결과는 크게 두 가지로 나뉜다. 먼저 함께하는 의사결정 요소 탐색을 위한 통합적 문헌고찰에서는 환자-의사로 대표되는 참여자간 파트너십 형성, 정보의 교류, 충분한 숙고, 의사결정, 주기적인 재검토와 확인의 다섯 요소가 도출되었다. 또한 연명의료결정과 관련하여 의사결정경험을 확인한 질적기술연구에서는 일 의료기관의 연명의료결정과정의 특징과 의사결정과정의 제약이 드러났다. 일 의료기관의 연명의료결정과정은 의료진과 환자, 가족이 함께 결정하고자 하는 노력과 최선의 선택을 추구하고자 하는 특징이 드러났다. 그러나 의사결정과정에서 의료행위에서의 제약과 법제도의 수행과정에서의 제약과 문화적 제약이 언급되었다. 본 연구는 연구결과를 토대로 함께하는 의사결정 관점에서 연명의료결정과정의 장애요인을 의료인 측면, 법률적 측면, 사회문화적 측면으로 제시하였다. 또한 이를 해결하기 위하여 법적 환자-의사 관계를 동등하게 설정하고 양방향적 의사소통을 촉진할 수 있도록 의료인 교육의 필요성, 충분한 숙고의 시간을 제공할 수 있도록 연명의료결정법 상의 개선, 가족중심결정으로 대표되는 한국문화에 특화된 의사결정방식을 제안함으로써 함께하는 의사결정의 적용방안을 제시하였다.