It was 2 a.m. when Chiaki rushed to the hospital to see her 63-year-old father, who had collapsed from a ruptured aortic aneurysm.
Six hours after surgery, the doctor told her and her mother that he was going to die even though the operation had been successful, because he was losing blood from damaged blood vessels, said the Fukuoka native, who did not want her family name revealed.
Then the doctor asked her if she wanted the artificial respirator turned off.
“My mind went blank,” Chiaki said, recalling that moment last June. But she asked the doctor to switch off the machine.
“My mother and I instantly remembered my father was someone who never wanted to make trouble and he would want us to stop the respirator if he were conscious,” she said, adding the doctor’s clear explanation on her father’s condition helped her to reach the decision quickly.
Respecting a person’s right to live or die is not simple. But aiming to protect the rights of those who don’t want life support when they’re in a terminal stage, a nonpartisan group of lawmakers plans to submit legislation this Diet session that would allow doctors to withhold or withdraw treatment if terminally ill patients express that wish in writing.
It has been a dilemma for doctors and other medical professionals to provide life-prolonging treatment, especially when it doesn’t bring any benefit to the patient’s quality of life, while advanced medical technology has made it possible to sustain life with respirators, pacemakers and feeding tubes.
As for families of patients in a terminal stage, it is a struggle to figure out the best option, partly because they are in a gray area where there are legal problems with canceling life-prolonging treatment such as using a respirator and artificial nutrition and hydration once it starts.
However, there is a medical guideline under which doctors can withhold treatment if this respects the patient’s wish, but it could leave them open to a lawsuit.
The nonpartisan group of around 120 lawmakers was launched in 2005, but this is the first time it has drafted any bills.
“We’ve been holding discussions for seven years already. We shouldn’t rush, but I think it’s time to get our thoughts into shape,” the group’s chairman, Teruhiko Mashiko of the Democratic Party of Japan, told The Japan Times. “It’ll be great if the public starts discussing the issue as we submit the bills.”
The group drafted two versions and plans to let Diet members vote based on their own judgement. One version stipulates that doctors can’t start life-prolonging treatment on patients in a terminal stage, defined as “a condition in which patients have no possibility of recovery even with appropriate medical care,” and the other states that cancellation of such treatment would also be allowed.
Under both bills, more than two doctors would have to decide whether a patient is in a terminal stage and they would not be “held liable under the criminal, civil and administrative codes.”
There are opponents to the bills, especially groups supporting disabled people and patients with ALS, amyotrophic lateral sclerosis, or Lou Gehrig’s disease, which in the later stages causes paralysis and death.
Such groups invited to a hearing by the Diet members said the bills would pressure patients with incurable diseases to give up on living to avoid becoming a burden on their families. They also fear that turning off life support for patients who can’t speak for themselves or are unconscious may become the “easy” option.
Mashiko denies this would happen.
“The bills would not be applied to patients in a state where they can’t express their wish to stop or continue treatment,” he said.
The Japan Society for Dying with Dignity, which has 120,000 members across Japan, welcomed the proposed legislation.
Members of the association sign a declaration for dignified death that states their desire to refuse life support. The declaration can be submitted to their doctor when necessary.
Masafumi Takai, the group’s executive member, said the group is satisfied with the content of the bills.
“We hope that they will guarantee the rights of patients who do not wish to prolong life and guarantee immunity for doctors,” he said.
Meanwhile, the Japan Geriatrics Association issued a guideline in June that doctors can withdraw and withhold usage of feeding tubes.
This guideline states that doctors “have to give careful consideration when starting artificial nutrition and hydration and should have an option to withdraw and withhold percutaneous endoscopic gastrostomy (PEG), in which a tube is inserted in a patient’s stomach, if it is not beneficial to the quality of their lives.”
A Tokyo resident in her 30s whose mother died of cancer in 2004 said she would not want to keep on living by being plugged into tubes.
Her mother had a PEG, but several months later the pain from her cancer became unbearable, and she passed away after being dosed with morphine to ease the pain.
“I want to die naturally, without being forced to undergo life-prolonging treatment if I become unconscious. Besides, terminal care can be very expensive.”
But it’s still a struggle for a family to find the best option for a dying patient, she said.
“I really don’t know if our decision (to use morphine) was best because after all, it took her life. I still don’t know if it was the right decision to make her live until that point,” she said.
Chiaki, the woman in Fukuoka, said families should discuss what they want to do when they become terminally ill.
“We’re already discussing it,” she said.