▌111年08月02日 病人自主研究中心
在2022年8月初舉辦的《聯合國身心障礙者權利公約》（CRPD）第二次國家報告國際審查會議上，參與之國際審查委員首度提及病主法並進行討論。
病人自主研究中心（簡稱病主中心）依台灣社會現況、病主法設計之內涵與精神等向委員提出書面說明，協助國際審查委員更加了解台灣身障者與病主法之現況與相互關係。
以下與大家分享本中心回應之中英原文：
社團法人台灣生命教育學會 病人自主研究中心
針對CRPD第二次國家報告國際審查中之《病人自主權利法》討論之回應
一、台灣針對生死醫療決策的文化現況
行政院資料（註1）顯示台灣人平均臥床高達8.5年，且有不斷增加之趨勢。臨床上更以人工維持生命為主要續命方式，代表民眾在臨終前飽受生命尊嚴及生活品質不佳之傷害。其背後成因複雜，除延命技術發達、健保給付驅力，更因忌諱談論醫療決策與生死話題、以及崇尚長壽為孝之文化影響，令多數人實現自然善終的心願窒礙難行，造成許多「被迫無尊嚴延長餘命」的悲劇產生。故在對生命尊嚴及人格自主權的保護需求下，立定《病人自主權利法》。
二、《病人自主權利法》為「自然善終」保障，非安樂死
病主法保障成年當事人在其認知、意識狀態清楚時，表達希望拒絕或接受「人工維持生命措施」，此乃各國肯認之普世人權，更是保護生命終期品質的最後防線。病主法不是安樂死，主張自然善終，不以醫療加工手段延長生命徵象。安樂死或協助自殺為透過施打或給予藥品「加速縮短」當事人生命。目前安樂死於台灣社會爭議仍大，尚未立法。
三、《病人自主權利法》流程中如何保護意願人之生命權與自主意願
病主法以法定嚴謹措施保障生命權及自主權的平衡。以當事人為主體，避免任何他人（醫療方或家屬方等）以任何形式傷害其生命權與善終權之行使。
以下簡述病主法法定流程與保護措施：
四、《病人自主權利法》對身障者之重要性
根據CRPD第一條之發展目標，病主法所落實之基本人權不應排除身障者。病主法第一條即揭示以「病人」作為主體，即為病人賦權之精神。故更應根據CRPD第二條，持續推進身障者以更高可近性獲取權利，故AD簽署過程須給予障礙者必要且合理之配套規劃（因障礙狀況有其強度不同），若有輔助者，同樣依法不可逾越當事人之自主意願表達。
五、病人自主研究中心（病主中心）的民間試辦：增強合理調整措施的落實
病主中心集結民間力量共同發動「身障族群創新服務案」，透過與台灣十多家大型醫院組成綠色通道聯盟，並與多家身障與社福單位，組成社福大平台，三方共同研發ACP創新模式與服務改革，以CRPD第二條合理調整措施為原則，具體推進權利實質之平等與落實。同時結合本中心政策研究業務，創造制度面的實質突破。並以CRPD第八條原則，持續提高醫療團體與大眾對身障者的認識。
六、身障者在權利取得上的結構性障礙，有賴政府與民間各方持續突破困境
身障者在取得各項權利的過程中，極易因資訊落差、經濟困難、社會文化、家庭動力，及其溝通與行動狀態等，造成身障者既無法清楚自身有何種權利，更難以獲取保障。此困境有賴政府與民間各方持續共同突破，落實CRPD精神。病主中心作為民間團體，也將持續監督、倡議、以及與各方團體合作，以創新的解決方案為身障者持續努力。
※註1：行政院主計總處綜合統計處國情統計通報第 242 號
Taiwan Life Education Association Patient Autonomy Research Center(PARC)
Response to Discussion on "Patient Right to Autonomy Act"
in International Review of CRPD's Second National Report
1. The current cultural situation of life-and-death medical decision-making in Taiwan
From the Executive Yuan (note1) shows that the average Taiwanese are bedridden for 8.5 years, and there is an increasing trend. In clinical practice, artificial life-sustaining is the main way to prolong life, which means that people suffer from the harm of life dignity and poor quality of life before dying. The reasons behind this are complicated. In addition to the development of life-extending technology and the driving force of health insurance payment, it is also taboo for Taiwanese to talk about medical decisions and topics of life and death, as well as the cultural influence of advocating longevity as filial piety, which hinders the desire of most people to achieve a natural and peaceful death. The tragedy of prolonging life without dignity was born. Therefore, to protect life dignity and personality autonomy, the " Patient Right to Autonomy Act " was enacted.
2. The "Patient Right to Autonomy Act" guarantees "natural death", not euthanasia
"Patient Right to Autonomy Act" guarantees that adult parties express their wish to reject or accept "artificial life-sustaining measures" when their cognition and consciousness are clear. "Patient Right to Autonomy Act" is not euthanasia, it advocates a natural and hospitable death, and does not prolong life signs by artificial life support. Euthanasia or assisted suicide is the "accelerated shortening" of a person's life through the lethal injection or fatal drugs prescription. At present, euthanasia is still controversial in Taiwanese society and has not yet been enacted.
3. How to protect the right to life and autonomous will of the people in the process of "Patient Right to Autonomy Act"
"Patient Right to Autonomy Act" protects the balance between the right to life and the right to autonomy with strict statutory measures. This act takes the parties as the main body, avoid any other person (medical party or family party, etc.) from harming parties’ right to life and hospice in any form. The following is a brief description of the legal process and protective measures for people of "Patient Right to Autonomy Act":
(1) Before declarant signing Advance Decision (hereinafter referred to as AD), "Patient Right to Autonomy Act" clearly stipulates that Advance Care Planning (hereinafter referred to as ACP) is required, and the medical team shall consult with the declarant and his/her family. ACP is designed to ensure the declarant’s right to know and improve family communication, and also to prevent the declarant from being coerced or implied to make involuntary choices.
(2) The declarant must sign the AD by themselves, and AD cannot be signed by anyone else. Moreover, AD is a legal document. After signing, it will be transmitted to the government system and marked on the declarant’s health insurance card. (Only the declarant itself can modify; this measure is to avoid any other person tampering.)
(3) The AD acting process is rigorous, and three elements are indispensable: (1) The patient must be denoised by two specialists that the patient meet one of the five clinical conditions in "Patient Right to Autonomy Act". (2) If the patient can express, it is necessary to reconfirm the patient's wishes. (3) After two confirms from the palliative medical team.
4. The Importance of the Patient Right to Autonomy Act to persons with disabilities
According to the development goals of Article 1 of the CRPD, the basic human rights in "Patient Right to Autonomy Act" implemented should not exclude persons with disabilities. Article 1 of the "Patient Right to Autonomy Act" reveals that the "patient" is the main body of the act, that is, the spirit of empowering the patient. Therefore, according to Article 2 of the CRPD, we should continue to assist persons with disabilities to obtain their rights with higher accessibility. Therefore, there should be necessary and reasonable supporting plans (due to the needs of the persons with disabilities) in AD signing process. According to "Patient Right to Autonomy Act", any assistant for the patient to obtain their rights cannot exceed the expression and free will of the patient.
5. The pilot operation of Patient Autonomy Research Center(PARC): strengthening the implementation of reasonable adjustment measures
PARC gathers private forces to jointly launch the "Innovative Service Project for Persons with Disabilities". PARC implements the project through forming a green alliance with more than ten large hospitals in Taiwan, and forming a social welfare platform with a number of social welfare units, to jointly develop the ACP innovative model and service reform. The project based on the principle of reasonable accommodation in Article 2 of the CRPD, and it concretely promote the equality and implementation of the essence of rights. At the same time, based on the eighth principle of CRPD, PARC combined this project with the policy research planning of the center, we create the substantial breakthroughs in the system, and also continue to improve the understanding of persons with disabilities by medical groups and the public.
6. Structural obstacles to the acquisition of rights of persons with disabilities：Depend on the government and non-governmental parties to continue to break through the predicament together
In the process of acquiring the rights, people with disabilities are prone to information gaps, economic difficulties, social culture, family dynamics, and their communication and action status, etc., which make it difficult for persons with disabilities to know what rights they have, and even more difficult to obtain the protection. This predicament depends on the continuous collaboration of the government and non-governmental parties to breakthrough, and implement the spirit of CRPD. As a civil society, PARC will continue to supervise the government, advocate, and cooperate with various groups to make continuous efforts for persons with disabilities with innovative solutions.
病人自主研究中心
病人自主研究中心
