The revelation in late March that a Toyama Prefecture surgeon shut off the life support of six patients and let them die has raised once again the issue of how to treat the terminally ill.
Atsuko Fujita wonders whether she would keep her 83-year-old father, who has colon cancer, on life support.
“If I see my father in agony, I would want the doctor to help him” and put him on life support, said Fujita, founder of Pure, a nonprofit organization that supports home care for the terminally ill, based in Chiba Prefecture.
She said if he fell into a coma, “I might think about removing the respirator. But I’m not sure if the family can decide” whether to let him die.
As Japan’s elderly population begins to swell at a rapid rate, medical care for terminally ill patients is becoming a major ethical — and financial — issue.
In late March, police said they were investigating the deaths between 2000 and 2005 of six elderly patients at Imizu City Hospital, Toyama Prefecture, who died after their 50-year-old doctor removed their respirators.
The doctor said he received consent from each of the patients’ families, but not the patients themselves. He also said he had no documents to back his claim.
While what happened was wrong, the doctor’s decision was understandable, said a doctor in Fukushima Prefecture who asked not to be named.
“When you know there’s no hope for recovery, you start to think that maybe you should be giving another patient with a chance the bed and the care instead.”
There have been calls for guidelines on stopping life support and euthanasia, but the discussion stumbles over the taboos around the subject.
Families often do not tell terminal patients they are dying. This means the patients often do not get the chance to decide how they want to die, or whether they want to be kept on life support.
With no explicit directions from the patient, the family is left to make the excruciating decision on whether to terminate life support. Doctors complain that relatives often refuse to sign the documents allowing the hospital to turn the respirator off.
The Imizu City Hospital doctor, who is head of the surgery ward, said he discontinued life-support with verbal consent from the patients’ families, according to media reports.
That is wrong, said doctor Kenji Ueda, a board member of the Japan Society for Dying with Dignity. Terminal patients should have the right to decide whether they want their lives prolonged, no matter what their families say, he said.
Ueda said doctors should always ask patients how they want to be treated in their final days.
“When patients indicate their wishes (when they are lucid about whether to be kept alive), doctors should respect that,” he said.
The system needs clear rules on terminal care, Ueda said, adding that it would help doctors, who worry about facing murder charges.
The dying with dignity society has 110,000 members nationwide and encourages its members to write living wills that specify their wishes about using life support. The group submitted in June 2005 a 140,000-signature petition calling for legislation on “dying with dignity.”
Japan has no law on euthanasia or stopping medical treatment that would prolong life. This includes cutting life support at a patient’s request. If a doctor discontinues treatment that would prolong a person’s life, the doctor can be charged with murder.
A doctor at Haboro Hospital in Hokkaido who switched off the respirator of a terminally ill patient was prosecuted in May 2005 for killing her patient.
In the absence of clear guidelines on how to treat the terminal ill, a nonpartisan group of lawmakers is drafting a bill to allow the dying to make their own decisions about life support.
However, Liberal Democratic Party lawmaker Taro Nakayama, who heads the group, said because the bill is controversial, it will take a while to get to the Diet.
The bill’s outline says people over the age of 14 would be allowed to refuse in writing medical treatment that would prolong their lives. The document would require the signatures of the patient and two adult witness.
The bill would free doctors who follow the procedures from legal prosecution. At minimum, three doctors — in addition to the attending physician — would also have to confirm that the patient was in a terminal phase before cutting life support.
Medical inducement of death and assisted suicide are legal in the Netherlands and Belgium, as long as the patient’s consent and the agreement of two doctors that the patient is terminal is acquired.
Switzerland and the U.S. state of Oregon also allow assisted suicide, while France allows termination of medical treatment with the consent of family members.
In Japan, euthanasia centers around the refusal of medical treatment.
Tsutomu Wada, a medical journalist, said there should be official guidelines on how people can make choices on ending their lives and put their wishes in writing.
“Some doctors halt life-prolonging measures and others (faced with the same situations) refuse to do it. . . . I think such a confusion should be resolved by making guidelines,” Wada said.
Wada said his family wanted the doctor to remove his father’s respirator in the final stages of his illness, but the doctor refused.
He said he is suspicious about hospitals’ motives for keeping patients on life support and fears their motives may be financial.
“Medical institutions can get big revenue from terminal care,” he said.
Having laws on ending life support for the terminally ill can also reduce the guilt families feel when they decide to terminate life support, said Noritoshi Tanida, a medical ethics professor at Yamaguchi University.
However, some medical experts warn that the issue needs to be dealt with cautiously.
Terumi Shimizu, secretary general of a group of doctors, patients and scholars who oppose legislating euthanasia, said the bill currently being written would condone murder.
“Doctors might misdiagnose a disease. Also, patients who sign a living will while they are healthy may change their minds when they become terminally ill,” Shimizu said.
Families might also ask doctors to discontinue medical care, simply because of the financial burden of caring for them, she added.
The first step, however, is for doctors to speak more frankly with their patients, said Kenji Hayashi, vice president at the National Institute of Public Health.
If doctors explained the diseases and told the patients and their families about all the options for treatment, incidents like those in Imizu would not happen, he said.
Hayashi heads a study group at the health ministry aiming to improve terminal care. The group hopes to have a report ready by the end of March 2008.
NPO Pure’s Fujita has decided to ask her father what kind of care he wants at the end.
“My father wanted to learn everything about his disease from the beginning, and I want his wishes to be reflected in the care he gets,” Fujita said.