Issue:
November 2025 | Japan Media Review
Constraints on pain management are condemning people to long, agonising deaths
Dialysis is a medical procedure that removes waste and excess fluids from the body when the kidneys no longer function. In terms of per capita patients, Japan is number two in the world for dialysis treatment, after Taiwan. One reason for this prevalence may be a rise in Japan over the years of type 2 diabetes, considered a major cause of kidney disease. But diabetes in Japan is still not as common as it is in, say, the U.S. Dialysis is covered by national health insurance, and once a patient starts on dialysis, they usually have to remain on it their whole lives or until they receive a kidney transplant, which is difficult in Japan given legal restrictions and a less positive attitude toward organ donation. Dialysis is expensive, but in Japan there is a ceiling on out-of-pocket costs to patients, so anyone can afford it. That reality became controversial in 2016 when a famous TV announcer complained on his blog about people who received dialysis, which cost the government ¥1.6 trillion a year, since he figured that they had brought on their illness themselves through poor lifestyle choices.
The more sobering reality is that dialysis is a debilitating procedure. Treatments involve being hooked up to a device that cleans the patient's blood externally and then returns it to the body. Normally, a dialysis patient must undergo the procedure two to four times a week, with each session lasting up to four hours. It is painful and can become even more so with time. That is basically the story told by nonfiction writer Keiko Horikawa in her new book, The Day Dialysis Stopped, which chronicles the death of her husband, NHK producer Arata Hayashi, after he decided to stop his treatments several years ago, having reached a stage when the procedure had become excruciating. What followed was no less excruciating because Japan's medical insurance system does not pay for end-of-life palliative care for people with kidney failure. Horikawa's book has caused a sensation in the medical profession that has spread to the government, which is now discussing expanding palliative care and pain maintenance under Japan's health insurance system.
As Horikawa explained to the Asahi Shimbun last summer, Hayashi had a genetic, and incurable, kidney condition. He started undergoing dialysis when he was 38, and at the age of 50 received a kidney from his elderly mother. At 59 the kidney started to fail, so he had to go back on dialysis, which gradually required more frequent and longer sessions. Eventually, the procedures became so taxing that he was essentially bedridden, even when he wasn't undergoing treatment. The pain of the treatment steadily worsened, and his doctors never asked about his discomfort, though they surely knew what he was going through. Their job is to make the patient better, and making the patient comfortable as he or she enters the last stage of life would be acknowledging that they can't do anything more to save it.
Hayashi died 17 days after his last dialysis session. Horikawa told the Asahi interviewer that she realized when her husband had decided to forego any more treatments that "dialysis itself indicates the patient is dying". When she looked online to find out what other patients who had given up on dialysis had done, she found nothing. "It was then that I lost hope. My husband could not go through his final stage of life without also going through tremendous pain." She asked the hospital about pain maintenance and found out that it was limited to cancer patients, and in any case the pain maintenance facility was in the Intensive Care Unit, hardly a place where a patient could be made to feel comfortable. Further research told her that the law related to providing insurance for palliative care was implemented in 2017 but only available for cancer and AIDS patients.
After the dialysis treatment stopped, gangrene set in and the discomfort in Hayashi's extremities worsened. "He said he had never felt such pain before," Horikawa said. "It was a living hell for both of us." She asked her primary care doctor if he could prescribe narcotics to control the pain, but he said he wasn't sure if it would work, thus suggesting he had no experience in pain maintenance associated with kidney failure. "Once he stopped dialysis, he received no medical support at all," she said. "It was just the two of us."
It took Horikawa three years to recover from Hayashi's death, although she told him before he died that she would write about it to make people understand how he had died. When she finally received his medical records, she couldn't bring herself to read them at first. When she tried to talk about it with friends and family, they told her to forget about it, that she should try to get past it. But she couldn't.
The response to the book has been electric. People undergoing dialysis and their loved ones have never had a resource that could point them toward the future. In January, Horikawa interviewed the former justice minister, Yoko Kawakami, about the security situation in East Asia for an article, and gave Kawakami a copy of her book. Kawakami read it and was moved. She contacted Horikawa and said she would start a study group in the ruling Liberal Democratic Party to look into the situation surrounding kidney patients. In June, the government devised a budget to come up with a new policy for palliative care.
Although the book specifically talks about kidney disease and dialysis, Horikawa says it is important for the government to extend palliative care to cover all end-of-life situations. She's afraid that the tendency of society is to "avoid these matters, which can lead to situations where people cannot face their end with dignity", thus contributing to a society that is, on the whole, "unhealthy".
In September, the Asahi ran an interview with a professor at Tsukuba University who specializes in palliative care. Dr. Yoshiyuki Kizawa acknowledged that insurance only applies to pain maintenance for cancer and AIDS patients, and that there is a great demand from sufferers of other diseases. The main obstacle is defining the purpose of the care. Pain maintenance is usually part of cancer treatment without necessarily being implemented as a means of preparing for death. Cancer treatment is still predicated on the idea of making the patient better, so relieving pain becomes part of the treatment regimen. As Kizawa says, "A patient who complains of pain is given proper medication to alleviate it." In more "challenging cases" teams of doctors may work together to treat a patient's condition in a holistic way, and that may include special hospitalization in a pain management ward. Kizawa doesn't specifically address terminal care, but he does say that insurance coverage should be broadened to help people in pain for conditions other than cancer. Several specialist groups such as the Japan Respiratory Association and the Japan Society for Intensive Care Medicine are formulating guidelines for palliative care with regard to end-of-life treatment. Kizawa even mentions that, internationally, Japan's medical system suffers a diminished reputation because of its limited approach to pain management. For instance, women in Japan are not normally offered epidurals to relieve the pain of childbirth during delivery because there is a common belief that pain is vital to the experience in that it helps the mother bond with her baby.
A recent NHK documentary addressed how people face death in a society where life spans are getting longer. As recently as the 1990s, 80% of Japanese deaths happened in hospitals. In an effort to bring down medical costs, the government has been trying to reduce hospitalizations, which means more people will die at home.
The documentary focused on a doctor who makes house calls to elderly people with chronic conditions. These patients have decided to forego hospitalization, meaning that they have tacitly decided to die at home. Many require outside care givers. The doctor, Ryoichi Ichihashi, has created a kind of clinic that provides both medical and non-medical staff who visit patients at home. The idea is to meet the specific needs of each patient. In the case of one man who can no longer easily take nutrition through his mouth, a technician is dispatched to teach him how to chew by explaining the texture and hardness of the food he eats.
Ichihashi implies that offering palliative care to a patient is the equivalent of giving up, so he endeavors to create a situation in which the patient can sustain "hope". Pain management is acceptable for cancer patients because it allows them to continue their treatment, but what happens if they decide to stop treatment? One 73-year-old patient who suffers from a severe respiratory condition refuses to be hospitalized and told the NHK crew that he would prefer not to live any longer in his present condition. Ichihashi is against actively allowing people to die regardless of their own wishes, and maintains that all his patients have some hope left, although he isn't clear about what it is they hope for. To him, the sole purpose of medicine is to extend lives, even if it means hooking patients up to tubes and machines that greatly diminish the quality of those lives. Under such circumstances, treating pain is considered a separate issue from treating the underlying disease.
In the documentary, Ichihashi visits the Netherlands, where patients with terminal conditions can decide to end their lives with the help of a doctor. This trend is spreading throughout Europe, although it is opposed by many organizations, especially those representing disabled people, who are afraid that they will be encouraged to end their lives if doctor-assisted suicide is liberalized. Pain management is an integral part of end-of-life care. The prospect of a painless death is a core determinant when terminal patients decide to end their lives proactively.
In a discussion with a Dutch doctor who provides end-of-life care to patients who make such a decision, Ichihashi says that patients' choices about their own treatment is often "unstable" and that they need the guidance of a doctor to reach the proper conclusion about their situation. To him, pain relief should be administered in order to encourage the patient to seek more treatment in order to get better, even if it's for a limited time. Pain relief with the express intention of easing one's death is contrary to his training. The Dutch doctor insists that the aim of her work is not to "shorten lives". (It is perhaps notable that, unlike their counterparts in the West, Japanese veterinarians rarely offer to euthanize dying pets.)
The Asahi Shimbun article confronts this attitude by asking whether the emphasis of medicine on "extending life" is a guarantee of "happiness." Though longer life spans are certainly a good thing, "how a person completes their life" depends on the individual, and in such a discussion palliative care is an important consideration. Japan's baby boomer generation is now the bedrock of the huge senior citizen demographic. Boomers were raised to demand more choices, including the choice to decide the direction of their own medical treatment. Palliative care should be up to the individual, but, as the Asahi points out, there is a severe shortage of medical personnel in Japan who can provide such care, mainly because the medical education system doesn't prioritize it. That's why Horikawa's book has made such an impact: it draws attention to a situation that people, including medical professionals, have avoided in the past but which almost everyone will likely face someday.
Philip Brasor is a Tokyo-based writer who covers entertainment, the Japanese media, and money issues. He writes the Japan Media Watch column for the Number 1 Shimbun.
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