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The right to die: letting individuals make the choice themselves

by Jeff Kingston

Special To The Japan Times

It was not the most elegant way to launch a national conversation about the right to die, but this past January Deputy Prime Minister Taro Aso, 72, certainly drew attention to the issue of terminal patients. Unfortunately he did so by saying that old people should “hurry up and die” to unburden the nation’s medical-care system.

Speaking at a meeting of the National Council on Social Security Reforms, Aso declared, “Heaven forbid if you are forced to live on when you want to die. I would wake up feeling increasingly bad knowing that (treatment) was all being paid for by the government.

“The problem won’t be solved unless you let them hurry up and die.”

While he tried to dampen public outrage by explaining that his comments were personal views, airing such remarks in the context of overhauling Japan’s social-security system was not exactly exquisite timing. But maybe this time, unlike so many others, Aso’s gaffe can be a useful catalyst.

Aso also said, quite correctly, “It is important that you be able spend the final days of your life peacefully.”

The right to die and end-of-life medical care is a pressing issue in one of the world’s most rapidly aging nations, where about a quarter of the population is over 65.

It is time for euthanasia legislation that would spell out guidelines enabling doctors to respect their patients’ wishes without risking prosecution.

The Netherlands, Belgium, Switzerland and the U.S. states of Montana, Oregon and Washington allow assisted suicide, and in France medical treatment can be terminated at the request of the family.

This is an issue that involves medical ethics, patients’ rights, family interests and the law. And, in the context of burgeoning medical-care expenses in Japan, a country with a shrinking labor force, the cost angle is relevant.

End-of-life care can be quite expensive, often with limited ameliorative impact, claiming resources that could be allocated elsewhere. Legislation needs to reflect the views of stakeholders, including the medical and legal communities, politicians and policy wonks — but all of us, and our families, have a major stake as well, because currently our medical fate is out of our hands.

Patients can submit living wills to their doctors requesting no extraordinary medical procedures to prolong life, but such requests are not infrequently ignored or overlooked in emergencies. And, once a patient is intubated, as long as their heart is beating, the chances are that they will remain hooked up and kept alive even against their wishes. Intubation is often the point of no return, and doctors potentially face prosecution if they then “pull the plug.”

There is thus a major legal disincentive to abide by the desires of a patient or their family, while hospitals can fill billable beds with long-term patients who in many cases require minimal, but costly care.

By nationality, Japanese have one of the world’s longest life expectancies, but too many have unpleasant and lonely end-of-life experiences. Aso referred pejoratively to “tube persons,” but the sad reality is that many people are on feeding tubes or respirators whether they want to be or not. Many, too, suffer dementia while their families, as carers, must bear significant burdens in their “nursing hell.”

Meanwhile, the elderly are frequently deferential to doctors, and consequently the decision is often left to their discretion. In sudden emergencies there is no opportunity for the patient or their family to make an informed choice.

In 2012, a groundbreaking survey by the Japan Geriatrics Association and the Asahi Shimbun newspaper revealed that 51 percent of doctors from a sample of 1,000 had either stopped or withheld administration of artificial nutrition in the previous year. On average, these doctors reported having done so four times in the 12 months leading up to the survey, with 28 percent citing the family’s request and 30 percent the suffering of the patient.

But many of the doctors expressed misgivings over the possibility of legal prosecution even as they expect such cases to increase in coming years.

Doctors understand the situation as well as anyone, are sympathetic to patients and worry about the quality of life, but they operate in a legal gray area that leaves them vulnerable. In these circumstances it is important to establish a legal framework both for patients to make informed choices and to protect medical professionals

The 125,000-member Japan Society for Dying with Dignity (JSDD) — an affiliate, with the second-highest global membership, of the 24-nation World Federation of Right to Die Societies — publishes a regular newsletter and provides professional telephone counseling. It is the only organization in Japan I am aware of that provides a living-will registry-management service in which people can specify the limits of medical care they wish to receive in an emergency.

A living will is a voluntary declaration of self-determination at the end of one’s life that advocates assert is a basic civil right everyone should have.

The key issue is who gets to decide on stopping life-support and overcoming taboos about voluntary euthanasia. Patients usually rely on doctors’ advice and trust they will make good medical choices. The problem in Japan is that doctors often do make the choice to prolong life even if it means defying the wishes of their patients. And thus patients are put on respirators and are otherwise medicated without any prospect of recovery.

In 2010, Mika Yanagihara authored “Messages from Makiko’s Soul,” a non-fiction account of a car accident that left his wife a bed-ridden quadriplegic. After waking from a coma she used a communication aid called “Let’s Chat” and asked her husband to kill her. The book is based on her machine messages, and the couple’s court battles to win for her the right to die. In 2012, national broadcaster NHK turned the heartrending story into a TV documentary.

Japan does not have an aid-in-dying facility because euthanasia is illegal and considered homicide. Many patients might want to have this option, but here there is no Dr. Death — as U.S. pathologist and euthanasia activist Jacob “Jack” Kevorkian (1928-2011) was known — and there is nothing like Dignitas, a Swiss clinic that provides physician-assisted suicide using lethal doses of medication.

Medical ethics and the law have been outpaced by rapid advances in medical technology that are prolonging and in many cases improving the quality of life. But these developments are also creating more terminally ill patients caught in the unpleasant limbo between life and death.

Due to Japan’s very rapidly graying society, this is a growing challenge that lawmakers here really must face, starting with providing a legal framework for living wills and “do not resuscitate” orders so that patients, their families and their doctors can begin making decisions about death they can live with.

And, with proper safeguards, it is also time to legalize termination of medical care, and euthanasia, to respect the rights of individuals who seek death with dignity.

Jeff Kingston is Director of Asian Studies, Temple University Japan.