※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.