病人自主、親屬父權與醫師專業責任：論安寧緩和醫療條例之理論與實踐

Abstract

安寧緩和醫療條例係我國有關病人依其自主權拒絕維生醫療最重要的法律規範，自2000年制定實施以來歷經三次修正，均以撤除或終止已實施維生醫療之代理決定要件為修正重心，顯示代理決定在臨床上維生醫療之選擇，具有重要地位。為了解實際上安寧緩和醫療條例之執行狀況以及病人如何行使對維生醫療之選擇權以探究立法者欲保障病人自主之目的是否達成，本文欲探討以下問題：維生醫療議題在國際間之發展趨勢以及台灣法制之回應為何？安寧緩和醫療條例所賦予病人之拒絕維生醫療權利、最近親屬之代理決定及醫師決定，於臨床上之實踐情形為何？目前安寧緩和醫療條例之規範架構是否有可改進之處，以落實病人對維生醫療之拒絕權？ 為回答上述問題，本文首先透過文獻分析法整理比較法與我國法中對於維生醫療之評價與發展，再藉由半結構式訪談方法探訪來自8間區域醫院等級以上醫院、共14位臨床加護病房醫師之意見。訪談發現：1.因醫師、病人、家屬對於死亡議題之忌諱，病人預立意願書之比例不高，預立醫療代理人者亦少見；2.臨床上病人自己表達對維生醫療之選擇意願者不多，多由親屬代為決定；代為決定之親屬未必是法律所規範之「配偶、子女、孫子女、父母全體」（舊法）或最近親屬一人（102年1月新修法），而以「家族一致共識」為原則；3.家族共識所形成之代理決定，未必以病人意願之替代決定或病人之最大利益為準，代理決定人個人之情感、財務因素亦可能影響代理決定之形成；4.對於未預立意願書、亦無親屬可為代理決定之病人，醫師多因考量病人疾病之可治癒性、生活品質與維生醫療之負擔，傾向不積極實施維生醫療；在102年1月修法後，法律雖允許醫師得經照會安寧緩和醫療、依病人之最大利益代為決定，然因醫師認為確定是否已無最近親屬不易，以及對撤除與不實施之倫理評價不同，對依此修正規定而撤除該末期病人之維生設施尚有疑慮；5.醫師認為實施維生醫療僅係延長病人之死亡過程、無意義、為病人帶來之負擔大於利益、無法改善病人情況或成功率過低時，屬於不適當之醫療；若病人或其親屬(大多數是親屬)要求實施不適當醫療，且溝通無效時，除有採限時治療嘗試方式外，醫師多會依循病人親屬之決定實施；6.醫療專業判斷與病人親屬要求實施不適當醫療之意見衝突情形並非罕見，醫師多贊同透過健保之限制，減少不適當醫療之實施，但亦有主張應賦予醫師拒絕遵照親屬代理決定之權利。 由訪談結果發現可知，安寧緩和醫療條例所欲達成保護病人權益之目的並未充分實現，本文建議，應將安寧緩和醫療條例之適用主體擴大，讓病人不僅得拒絕藉由維生醫療之支持延長其死亡過程，也得拒絕倚靠維生醫療輔助維持生活品質低落之存活；並應明確建立代理決定之標準，讓大多數由最近親屬產生之代理決定，需合乎病人之意願或最大利益；對於安寧緩和醫療條例第七條第三項醫師決定之規定，因與病人拒絕維生醫療權存有倫理衝突，且對於實務處理之效益不大，為維護法理之一致性，建議刪除。此外，基於醫學倫理中醫師對病人負有維護其最大利益之義務，不論是對病人本人或其醫療代理人或最近親屬之決定，醫師均有義務依病人最大利益隨時提供意見與諮詢，並以之作為提供或撤除維生醫療之準則，故若遇有代理決定不合乎病人權益之情事，應允許醫師尋求倫理委員會或法院之介入；醫療專業應對晚近國際間無效醫療理論之發展，持續就無效醫療之定義及倫理意涵進行討論，帶領社會對於維生醫療之運用界線建立共識。

In Taiwan, terminally ill patients are entitled to refuse life-sustaining treatment after the Hospice-Palliative Care act enacted in 2000. By formulating the act, government hopes that terminally ill patient can achieve a "good death". After enacted, the Act has been amended for 3 times and mainly focused on lawfully withdrawing life-sustaining interventions by third parties.The purpose of this study is to examine how patients’ right to refuse life-sustaining treatment be implemented under the Hospice-Palliative Care Act. By literature review and qualitative research, the author would like to investigate the international development of end-of-life issues and the legal response of Taiwan, the exercise of patient’s right to refuse life-sustaining treatment in current clinical practice, and the needed improvement. By conducting qualitative interviews with 14 intensive care unit physicians from 8 hospitals in Taiwan, the author found that patient’s wishes were rarely known for mostly being incompetent with no advance directives, thus it was mainly the patient’s family to make surrogate decision. Though the Act needs only one legal family surrogate to make decisions, if no consensus has been achieved among influential family members (not necessarily be qualified legal surrogate), the provision of life-sustaining treatment would not end. Since consensus among family members was the only rule for surrogate decision making process, health care provider might find inappropriate considerations, such as personal emotions and financial interests. According to the amendment of Hospice Palliative Care Act in 2013, health care provider could also make surrogate decisions based on patients’ best interest if no qualified family members could be find. Health care provider might consider whether the patient is curable, the quality of life and the burden of treatment is acceptable when making the judgment. For the reason that health care providers thought differently between “withdraw” and “withhold”, and interpreted the law conservatively, the result indicated that the new amendment would make little difference to current practice. In some cases, health care providers might identify surrogate’s request for life sustaining treatment as medically inappropriate for prolonging process of dying, being pointless, bringing pain or ultra burdens, bring no improvement and minimum chance of success. Although the interventions might make the patient suffered or consume medical resources, due to legal, psychological, social, cultural, and economical considerations, if the conflicts couldn’t be solved through communication or temporary attempt, these interventions would often be provided. As a result, the implementing rate of life-sustaining treatment became so high. Many health care providers agree with BNHI’s restriction as a solution, others suggest that health care providers should have the right to deny inappropriate request from surrogates. In order to protect patient’s right to refuse life sustaining treatment, the author found it necessary to broaden the scope of application of the Hospice-Palliative Care Act. Patients should be authorized to refuse life-sustaining treatment not only for prolonged dying process but also for unacceptable quality of life. It was also necessary to set implicit standard for durable power of attorney and surrogate to comply with when patient is incompetent. Patient’s wish should be the primary consideration, then his/her best interest. Though health care provider also could make surrogate decisions when patient was incompetent without any advance directive or qualified legal surrogate, the author found this new amendment might conflict the basis of the Hospice-Palliative Care Act, which is patient autonomy. Therefore, the amendment should be deleted. Based on professional integrity, the author also suggested health care providers to assist patient or their attorney and surrogate in decision-making by explaining medical considerations and providing recommendation, health care providers should also ask for second opinion whenever attorney or surrogate’s decision conflicts patient’s wish or best interest. Although BNHI’s restriction for “futile” treatments did reduce inappropriate use of life-sustaining treatment, the implication of medical futility should not be confused with rationing. Under medical futility circumstances, the health care provider no longer have absolute duty to follow individual’s choice or even have the duty not to comply with the request if the treatment carry no benefit or benefit with ultra burden. The theory had been provided to deal with the conflicts between professional judgment and personal request on the basis of nonmaleficience and beneficence, not medical resource allocation. To clarify the differences, BNHI should limit inappropriate use of life-sustaining treatment by other rationing standards. The author also encouraged health care providers continue to discuss the definition and ethical implication of medical futility, to help general public recognize the limit of life-sustaining treatments.