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연명치료 중단을 결정한 말기환자 가족의 경험

Title
 연명치료 중단을 결정한 말기환자 가족의 경험
Other Titles
 (The) experience of family members on deciding to withdraw life-sustaining treatment for patients who are terminally ill
Issue Date
2003
Publisher
 연세대학교 대학원
Description
간호학과/박사
Abstract
[한글] 본 연구는 말기환자의 연명치료 중단에 대한 가족의 경험을 밝히기 위한 탐색적 연구로 실시되었다. 본 연구의 대상자는 수원 소재 1개 대학병원에 입원치료를 받고 있으며 주치의가 환자의 치료가 더 이상 의미가 없다고 판단하여 연명치료 중단을 결정한 환자의 가족(주간호제공자)이다. 자료수집은 2002년 8월부터 2003년 5월까지 심층면접 방법으로 하였고 내용분석법으로 분석한 결과 6개의 주제와 39개의 경험내용이 도출되었다. 본 연구의 결과는 다음과 같다. 1. 연명치료 중단 결정 시 말기환자 가족의 경험은 연명치료 중단 결정 시기와 연명치료 중단 결정 후로 범주화 되었다. 2. 연명치료 중단 결정시기의 경험에서는 연명치료 중단 결정요인, 결정과정, 결정 참여자가 주제로 도출되었고, 연명치료 중단 결정 후의 경험에서는 치료의 내용, 죽음수용, 예측된 상실반응의 주제가 나타났다. 3. 연명치료 중단 결정요인은 회복 가능성, 고령, 고통경감, 신체 손상, 의식수준, 부담감, 주변의견, 가족의 과거 경험, 환자 본인의 평소 희원이었다. 4. 연명치료 중단 결정과정은, 모두 의사가 먼저 권유하고 이를 가족이 합의하여 수용하였다. 5. 연명치료 중단결정 참여자는 의사와 가족, 친지들로 나타났고, 가족합의 과정에서 환자는 제외되었다. 간호사도 참여하지 않은 것으로 나타났다. 6. 치료의 내용에서는 치료중단 자체에 대한 갈등, 고통경감과 생명단축 사이에서의 갈등, 계속되는 연명치료에 대한 분노, 병원에서의 기본간호에 대해서도 분노, 계속되는 치료를 거부하지 못함이란 경험내용이 나타났다. 7. 치료중단 전후 처치 변화는 없었고, 치료결정에 의사 외에 다른 의료진의 참여나 환자, 가족의 의견은 반영되지 않는 것으로 나타났다. 8. 죽음수용에서는 죽음을 받아들이기까지의 준비기간 필요, 환자 자신이 죽음을 임박했음을 알고 있다고 생각, 환자 자신이 삶의 마무리를 잘 하기 바람, 환자에게 임종준비를 시키지 못함에 대한 죄책감, 고통없이 가기를 바람, 깨끗하게 가기를 바람, 모든 것을 다 소진함, 임종을 위해 가족이 모두 모임, 병원환경 및 면회제도에 대한 바람, 장례준비, 최선을 다 했다는 자기위안, 임종을 위한 의료진의 지지 필요의 경험내용이 나타났다. 9. 예측된 상실반응에서는 예상되는 이별로 인한 초조함, 자식을 앞세운다는 한탄, 환자의 치료 불이행 태도를 원망, 환자에 대한 연민, 자신의 처지 한탄, 지나온 생활을 회고함의 주제가 나타났다. 결론적으로 말기환자의 가족은 회복가능성이 없음을 주된 이유로 연명치료 중단을 결정하고, 의사가 권유한 것을 가족이 수용하는 형태이나 환자는 배제한 채 가족이 결정하였다. 연명치료 중단 결정 전후 치료내용의 변화는 없었고 가족들은 치료의 진행상황을 알지 못한 채 모든 의사결정을 의료진에게 맡기고 있었다. 연명치료를 무의미하다고 생각하나 이를 거부하지 못해 분노하고 갈등하고 있었으며 심지어는 기본 간호도 무의미한 치료로 생각하고 있었다. 가족들은 환자의 죽음을 수용하고는 환자 자신도 죽음이 임박했음을 알고 있다고 생각하면서도 환자와 함께 죽음을 준비하지는 못하였다. 그로 인해 죄책감을 느끼면서도 죽어간다는 말을 하지 못하고, 환자 스스로 죽음을 준비하고 존엄을 지키고 죽어가기를 바라고 있었다. 이러한 일련의 과정에서 가족들은 의료진의 지지와 환자와 가족이 함께 있을 수 있는 임종실과 면회제도를 원하였다. 환자의 죽음을 수용한 후 가족들은 초조함, 한탄, 원망, 죄책감, 자기연민, 회한, 회고 등의 예측된 상실반응을 경험하였다. 따라서 간호사는 연명치료 중단 결정요인, 결정과정, 결정 참여자, 치료의 내용에 대하여 잘 알고 의료팀간에, 환자 및 가족간에 의사소통의 주체가 되어야 한다. 이를 위해 간호사들은 고통완화, 고령, 신체손상을 근거로 연명치료 중단을 조장, 방조하는 일이 발생하지 않도록 감시하되, 환자가 존엄을 지키고 삶에 대한 정리를 하고 죽어갈 수 있도록 하는 옹호자의 역할을 하여야 한다. 간호사는 연명치료 중단 결정시기가 예측된 상실반응이 나타날 수 있는 시기라는 이해를 통해 간호중재를 하여야 하며, 죽음에 대해 환자와 가족이 함께 이야기 할 수 있어야 한다. 환자가 인간의 존엄성과 위엄을 갖추고 죽음을 맞이할 수 있도록 임종실이나 가족실을 운영하고, 말기환자의 무의미한 치료에 드는 비용을 삶의 질을 향상하는데 전환하여 사용할 수 있는 호스피스 간호에 대한 제도적 장치를 마련하여야 한다. 또한 말기환자의 치료의 범위, 치료 중단의 범위 등을 환자, 가족과 협의하여 결정할 수 있어야 한다. 이를 위해 연명치료 중단에 대한 사회적 공감대가 형성되고, 윤리지침이 만들어지고, 법적 보장 위에서 연명치료 중단 규정이나 윤리위원회 등이 운영되어야 한다. 핵심되는 말 : 연명치료 중단, 말기환자, 가족의 경험
[영문] This study was designed to identify experiences of family members regarding withdrawing life-sustaining treatment when patients are terminally ill. The exploratory method was employed for the study. The participants were family members of patients, who decided to withdraw life-sustaining treatment. The patients had been admitted to a university hospital located in Suwon and the physician had determined that further treatment was no longer meaningful. Data were collected through in-depth interviews, conducted from August 2002 to May 2003 and analyzed using content analysis. The analysis revealed 6 themes and 39 experiences. The results of the study are as follows: 1. The experiences of family members regarding withdrawal of life-sustaining treatment were categorized in two phases. One was during the decision- making process and the other was after treatment had been withdrawn. 2. From the experiences during the decision-making process, the themes, reason for decision, process of decision and participation in the decision were derived, and after treatment was withdrawn, the themes were type of treatment, acceptance of death and reaction to anticipated loss. 3. The main factors for making a decision to withdraw treatment were related to the possibility of recovery, advanced age, alleviation of pain, wasting of the body, consciousness, burden, recommendation, past experience of family members, and desire of patients. 4. The decision-making process was initially recommended by physicians followed by agreement and acceptance of family members. 5. The participants in the decision-making process were found to be physicians, family members and relatives. Patients were excluded and nurses did not participate. 6. For treatment, themes included conflict about the withdrawal itself, conflict between alleviation of pain and shortening of life, anger against continuous life-sustaining treatment, anger against standard care in the hospital, being unable to refuse continuous treatment. 7. It was found that after treatment was withdrawn, there were no changes in treatment, no participation of other medical staff and no reflection on opinions of family members in decisions concerning treatment. 8. In acceptance of death, the following were found: need for time to admit to possibility of death, thinking that the patients themselves were aware of being close to death, hoping that the patients themselves were prepared for their rest of lives, regret for not giving the patients a chance to prepare themselves for death, desire for patient to die with no pain, desire for patient to die with dignity, thinking that all treatment had been tried, all family members being present at death, asking for better hospital environment and visiting systems, preparing for the funeral, self-consolation at having done the best, requirement of physicians'' assistance at death. 9. In reaction to anticipated loss, the following were found: impatience in the anticipated loss, grief for letting their children pass away in advance, regret for stopping medical treatment, compassion for the patient, regret for their position, and looking back over their past. In conclusion, the pattern in decisions to withdraw life-sustaining treatment from terminally ill patients were mainly made because no possibilities of recovery were anticipated by physicians, followed by acceptance and decision by family members but with no participation by the patients themselves. Before and after withdrawing treatment, there were no changes in medical treatment and no information about phases of medical treatment. All decision-making was left to physicians. The families were angry about being unable to refuse life-sustaining treatment regarded as meaningless. Moreover they thought even standard nursing was meaningless. After admitting that death was a possibility, family members regretted that they were unable to prepare for death together with patient even though they thought the patients themselves knew death was coming soon. Nevertheless family members hoped that the patients could prepare for death by themselves and die with dignity. After acceptance of the decision, family members experienced a reaction to the anticipated loss such as impatience, sighing, grievance, guilt, self-pity, regret, and the need for reflection. With such sentiments, family members required support from physicians and required a family room where family members could stay with their patients. Therefore, nurses need to be aware of main reasons for withdrawing life-sustaining treatment, the decision-making process, participants in decision-making and the scope of medical care. They need to be central in assuring communication among medical team, patients and family members. Nurses need to monitor so that deciding to withdraw life-sustaining treatment may not be promoted or assisted only for the reasons such as alleviation of pain, being advanced age, and wasting of the body. And, on the other, hand nurses need to be advocates who can help dying patients settle issues in their lives and die with dignity. Nurses need to monitor nursing care, understand that a reaction to anticipated loss can show up at when the decision to withdraw life-sustaining treatment is made and also enable patients and family members to talk together about death. Provision of a room for the family is required so that patients may face death with dignity. Regulations for hospice care are required so money is not used for meaningless medical treatment but in meeting the needs for improving quality of life. The scope of medical treatment to be continued or withdrawn should be decided after discussion with family members. Social consensus on withdrawing life-sustaining treatment needs to be developed, ethical guidelines stipulated and, under the protection of law and regulations, a regulatory system for withdrawing life-sustaining treatment. Key words: withdrawal of life-sustaining treatment, terminally ill, experiences of family members
URI
http://ir.ymlib.yonsei.ac.kr/handle/22282913/128456
Appears in Collections:
2. 학위논문 > 3. College of Nursing (간호대학) > 박사
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