Dying in peace with dignity

The death of Terri Schiavo has focused attention on euthanasia. With her feeding tube removed, the 41-year-old American woman died in Florida last week after 15 years of living in a “vegetative state.” The long and bitter dispute, in and out of court, that continued through her last days suggest the need to create conditions that encourage use of the “living will,” which says what kind of medical treatment a person in the final stages of an irrecoverable disease wants, or does not want, to receive.

Euthanasia is defined as an “act or practice of causing painless death, so as to end suffering.” The living will is regarded as a voluntary way to ensure that a person dies in peace and dignity following a halt to life-extending treatment during the final phases of a terminal disease.

In 1990, Schiavo suffered a cardiac arrest that left her brain severely damaged. Ever since, she had remained “in a persistent vegetative state,” according to her medical reports. Her husband, Mr. Michael Schiavo contended that she would not have wanted to live in such a condition and requested that the feeding tube be disconnected. Her parents, who are Catholics, wanted her to be kept on life support.

The dispute found its way into court in 1998 when Mr. Schiavo filed a petition to remove the feeding tube. In 2003, the Florida State Supreme Court ruled in his favor. The Christian right — President George W. Bush’s constituency — mounted a campaign against euthanasia. The legal battle drew in the president and Congress, leading to the enactment of legislation calling for a retrial in the federal courts.

U.S. polls indicated that a majority of Americans supported Mr. Schiavo’s position. A poll by Fox Television showed 54 percent of the respondents in favor of euthanasia and 29 percent against. According to Time magazine, more than 70 percent were critical of “intervention” by the president and Congress.

Meanwhile, the Euthanasia Society of Japan is promoting a movement to establish a right to “natural death.” The group, founded in 1976, defines the living will as a “declaration of euthanasia.” The document is presented to doctors when necessary.

Living wills endorsed by the society state: (1) “Meaningless” life-extending measures will be rejected if the patient suffers an incurable and terminal disease; (2) when the patient is in pain, the most palliative treatment possible will be requested; and (3) life-supporting measures will be withdrawn if the patient falls into a vegetative state.

The living will, of course, takes effect while the signer is alive. That is the most important difference from ordinary wills, which come into force after death. At the end of March 2005, 107,256 people had their living wills registered with the euthanasia society, up from about 91,600 in 2002. The group says several thousand members die each year against some 10,000 new registrations.

It is not necessary, though, to register living wills with the euthanasia society or similar organizations. One alternative is to leave them with family members, doctors in charge or other reliable persons. As with registered living wills, such statements must be signed, with a seal impression attached, and state what kind of terminal care is desired.

With the public increasingly concerned about terminal care, a nonpartisan group of Diet members is considering legislation on euthanasia, while a research team of the Health, Labor and Welfare Ministry is working on ground rules that would guide decisions to stop life-extending care. Given the highly personal and emotional nature of terminal care, though, it is desirable that individual patients express their will clearly.

Terminal care in Japan faces another major problem: the rising number of elderly patients with dementia, such as those suffering from Alzheimer’s. The number of such patients in need of nursing care, currently estimated at approximately 1.5 million, is projected to reach 3.2 million in 2025 when the elderly population is expected to peak.

In fiscal 2000, the nation introduced an “adult guardian system” to protect and support elderly dementia patients — a system that allows their guardians to manage their property and make nursing-care contracts on their behalf. However, the number of people using this system remains relatively small — less than 20,000 in fiscal 2003. At present, these guardians are not allowed to make decisions concerning medical treatment of patients in their charge.

Finally, it should be noted that many terminal patients are unable, or unwilling, to present living wills for reasons of their own. Yet these patients should also be able to receive terminal care in such a way that they, too, meet death in a peaceful, dignified manner.