The patient was “extubated” and reinserted by himself! The “Patient Master Law” has been implemented for 4 years, and the national pre-establishment rate is only 2‰. What is the problem?

It has been 4 years since the implementation of the “Patient Master Law”, but the number of signatories of advance medical decision letters has grown slowly. The problem may be stuck at three thresholds, and the government must assist the hospital and the public to break it one by one.

A patient with a nasogastric tube inserted in a nursing home of the Taipei City United Hospital system felt uncomfortable due to the discomfort caused by force-feeding. Ms. Luo, who has been a ward assistant for nearly 10 years, is no stranger to this scene. “Seeing their painful and struggling expressions, I told myself that in the future, I must not be sick and bedridden like this…” she said heavily.

Unhealthy life expectancy soars to 8.5-year high

In order to “die independently and well”, Ms. Luo had a long talk with her children and was about to sign an “Advance Decision (AD)”. On the last mile of her life, she not only wants to walk with dignity, but also hopes to reduce unnecessary medical treatment and reduce the burden on each other.

The advance medical decision mentioned by Ms. Luo is the core focus of the “Patient Autonomy Act” (referred to as the “Patient Act”) that will be launched in early 2019, allowing adults to use “Advance Care Planning” (Advance Care Planning, ACP), Sign the AD in advance, and independently choose whether to accept respirators, Yeke membranes, nasogastric tubes, etc. in the future in the five clinical states of coma and severe dementia, which are only for life-sustaining, not for rehabilitation.

This is the first special law in Asia to protect the autonomy of patients, and it has been implemented for 4 years. However, as of the end of last year, only 43,000 people in Taiwan’s 182 medical institutions providing ACP services signed AD, accounting for about 2.19‰ of the adult population. Such a report card, in the view of the Patient Autonomy Research Center (Patient Center for short), a non-governmental organization that actively promotes the right to a good death, still has a lot of room for improvement.

Why is an advance medical decision important? Qiu Yuchen, the marketing and planning team leader of the Patient Center, explained with an astonishing figure. According to a survey released by the Accounting and Accounting Office of the Executive Yuan in 2021, the unhealthy life expectancy of Chinese people has soared to a new high of 8.5 years, which means that some people will suffer from bedridden torture for more than 8 years before they die. “Signing an AD is not just for the patient to decide “how to live”, but also allows the limited medical resources to be redistributed,” she emphasized.

However, since the adoption of the “Patient Master Law”, the promotion effect has not gradually increased over time. The annual number of signatories has remained at around 10,000, and no breakthrough growth has been seen. Exploring the reasons, including the three major factors of high consultation fees, insufficient protection for vulnerable groups, and negative attitudes from the hospital, have become the key to directly or indirectly impacting the willingness of the public to sign.

“Fee” is the biggest threshold for promotion

According to the current regulations, adults who intend to make advance medical decisions must first find a second-degree relative to accompany them, and then register at the outpatient clinic of a medical institution that provides ACP. The outpatient fee will range from 2,000 to 3,500 yuan. 1 hour consultation, two witnesses to sign before it can be completed.

“Just having to pay nearly 3,000 yuan out of pocket has discouraged many people.” You Yaqian, head of the policy research group of the Patient Center, revealed that many people originally intended to make medical decisions in advance, but when they called the consultation clinic to ask for details, they heard that they would charge a fee. , nearly 80% of the people immediately dismissed the idea, “Of course it is a pity for us.”

The high cost of counseling clinics has always been considered as the main reason for “restricting” the growth of the number of advance medical services. Although Peng Meizhen, a special committee member of the Medical Affairs Division of the Ministry of Health and Welfare, explained that at least one specialist physician, nurse, social worker, or psychological counselor must attend the consultation clinic. In order to support the labor cost of professional medical care, it is necessary to charge consultation fees. At the same time, the fees are reversed to make the public think carefully before making a decision.

However, the Patient Center believes that there should be no threshold for human rights, and the consultation fee should be revised immediately, and promoted towards free for all. We call on the competent authorities to take stock of how much resources the health insurance invests in invalid medical treatment before the death of patients each year. These expected savings should be transferred to subsidize ACP expenses, at least so that the public only needs to pay part of the burden, and the rest of the health insurance will be paid.

In addition to the public’s opinion that the fees are too high, the current regulations fail to fully protect the disadvantaged groups, which has become the second threshold. You Yaqian pointed out that although the Ministry of Health and Welfare provides consultation subsidies, it currently only requires economic conditions as an application requirement. For example, middle- and low-income households can reduce fees.