[Feature: Thinking about "Home Care"] Considering the Place to Welcome a "Peaceful Death"

I have spent about half a century as a surgeon repairing parts of the human body. Around the time I reached my 60th birthday, I began to think about the death that inevitably comes at the end of old age. I had worked hard with the mindset that I must save lives, but when I saw cases where cancer diagnoses were avoided or where medical treatment for elderly patients actually hastened their death, I began to wonder if this was right as a doctor and as a human being. Wanting to know more about the world of old age, I became a full-time physician at a special nursing home for the elderly (hereafter referred to as a "tokuyo") at the age of 70. I thought that if I stayed for two or three years, I would understand the actual situation and then return to the world of hospital medicine, but nearly 14 years are about to pass. The reason I have stayed so long is because I saw another form of medicine here.

We cannot live forever. Eventually, we reach the end. In the past, people watched over the elderly by their side until the very end. They could feel what a natural death was like. However, Japan now has universal health insurance, and even at the tokuyo—the final abode where I went—people are forced to eat, made to aspirate, and then sent to the hospital when they are about to die. Therefore, most people have no opportunity to know natural death. Voices arose from families saying that this was strange. Having transitioned from a hospital myself, I shared the same view. Seeing a natural death without any medical intervention, I was moved by the peacefulness of those final moments. It wasn't just me; other staff members across different professions felt the same way. That was a "peaceful death."

However, the reality in our country, which has become a super-aging society, is that nearly 80% of deaths occur in hospitals, meaning there is almost no natural death. People are dying while receiving medical treatment until the very end. In Japan, self-determination of death is not permitted. Susumu Nishibe, who wrote "The Morality of the Nation," committed suicide by jumping into the Tama River as his life's final chapter approached. Sugako Hashida, the author of "Oshin," wrote in "Bungeishunju" three years ago that she wanted to go to Switzerland where euthanasia is possible because in Japan, life-prolonging treatment is forced upon you at the end, which caused a public stir. Although the number of curable diseases is increasing due to progress in medical technology, much of the overflowing information is misleading. Conversely, the fear of death due to old age or dementia is inflating to an abnormal degree. We are, so to speak, "refugees of the place of death."

Originally, aging is the final chapter of life on a continuous timeline that includes death. In our country, from the moment a person enters the terminal stage and requires nursing care, there are many cases where their life, which had been continuous until then, is suddenly severed from that timeline and they are forced to meet their end in a hospital. Medicine that views aging as a pathological condition of accumulated ailments and makes it a target for treatment imposes forced and wasteful pain on elderly people approaching the end of their lives. Even in a tokuyo, which is called a final abode, when the end finally comes, patients are sent to the hospital based on the family's wishes or the facility's judgment. Even if aspiration pneumonia in the elderly can be cured in a hospital, weakened swallowing functions cannot be returned to the state they were in when the person was young. Death from old age is similarly not an abnormality but a natural consequence. In recent years, excessive medication and testing for the elderly have finally begun to be viewed as a problem.

Even if one simply wishes for life extension in a hospital and continues to supply fluids and nutrition until the end, the body cannot process them. Even if a person is eating in a care setting, once the aging body enters a state of preparation for death, the nutrition does not take hold and the person becomes emaciated. When that time comes, they naturally move toward death. Despite this, when faced with death, the human heart wavers in various ways. One wonders if it is really okay to provide no medical care, or if the person could still be kept alive through medicine.

In this world, unexpected things happen suddenly. An earthquake directly beneath us could occur even today. Along the Sanriku coast, local people knew from stories passed down by their ancestors that if the river water receded following an earthquake, a tsunami would come. Many people could have been saved if they had immediately climbed the mountain behind them, but they were swallowed by the tsunami and died because they went to pick up a daughter at kindergarten or an elderly parent at home. They might have been saved if they had run away, but they didn't. In psychology, this abnormally noble but ultimately irrational human behavior is called "normalcy bias." This human action, thought, and love that transcends profit and loss is also part of being human. This is the world of philosophy and religion.

Buddhism is said to be fundamental thinking, a way of looking at things to perceive the meaning dwelling behind them. "Aging, sickness, and death"—when one accepts these as the destiny one must receive, one is naturally guided to the wisdom of things as they are.

"It is so of itself," namely, the Eastern concept of the "natural" way of living. In contrast, the Western concept of "Nature" regards it as an object to be controlled. Medicine is meaningful only when it serves a person's entire life. In Western medicine, physical diseases are regarded as objects to be controlled and maintained. Therefore, it analyzes and treats them in an element-reductionist manner.

We used to have short lives. There was an era when people died young from tuberculosis. If there is still more to life, one must work hard for this one-and-only life. Thanks to the appearance of streptomycin and kanamycin and the progress of medicine, we have entered an era where we can live long lives. However, we humans are living creatures. Eventually, the end will come. A care facility is no longer a place to intervene and control physical problems. It is a place to support the hearts of those in the final chapter of their lives. The way of living is what is questioned.

We pass the baton of life from ancestors to parents, from parents to ourselves, and from ourselves to children and grandchildren. One segment of that is a life of at most 100 years. Now, our surroundings are overflowing with people in the final chapter of their lives. Families flustered by a parent's sudden change call an ambulance. The sound of ambulances can be heard everywhere. Emergency medical technicians think, "Are we transporting this elderly lady again? We transported her recently, but is this really for her benefit?" When they arrive at the emergency room, an increasing number of families are refusing life-prolonging measures.

In today's nuclear family society, there are limits—both mental and physical—to a small number of family members providing 24-hour care for a parent or spouse with dementia. In care facilities, staff from various professions provide care in shifts, so the work can be sustained. Society must help.

However, in many care settings where elderly people whose condition could change at any moment are being looked after, if there is no full-time physician, staff are forced to respond without medical assistance. Some family members demand transport to a medical facility even when it is doubtful whether it is for the person's benefit. Even with a shortage of caregivers, those in charge of care facilities must protect the facility's functions.

Everyone will eventually need the help of a care facility as the end of life approaches. It is a square for the hearts of the residents and the staff who support them. The key lies in whether staff can work with a sense of fulfillment. The issue is how to support the hearts of those who are aging and heading toward the final chapter of their lives. The fact that medicine was thought to be superior and caregiving a step below was a problem of our own way of living, having forgotten what a human being is and what a human life is.

About 20 years ago, the Long-Term Care Insurance system was established in our country (Enactment of the Long-Term Care Insurance Act, December 17, 1997, Act No. 123).

When a full-time physician is placed in a tokuyo, an additional fee is added under the long-term care insurance. It is 25 units per resident per day. However, among the 9,700 tokuyo nationwide, only 1% have a full-time physician. The reason is that the significance of having a doctor full-time in a care facility is not recognized. The role of placing a full-time physician in a tokuyo is not specified in the system.

The definition of long-term care insurance states that they are responsible for "health management and guidance on medical treatment for residents," but this is the same for visiting physicians dispatched from medical institutions, and the roles of the two are not distinguished. However, the roles of the two on the ground are very different. A visiting physician from a medical institution visits the care facility once every two weeks, hears about the medical condition from the nurse, prescribes medicine, or orders tests, and then leaves. During a short stay, their attention is concentrated on ordering immediate medical treatments, and the meaning of medicine in the resident's life becomes secondary.

On the other hand, a full-time physician at a tokuyo watches over the resident's life. They know when the time of the end is approaching. Since other staff and family members are also accompanying the resident's life, they can discuss whether to continue medical treatment at that point with the full-time physician involved.

Another reason why few care facilities have full-time physicians is that with an additional amount proportional to the number of residents, if the scale of the tokuyo is small, they cannot secure a salary that can be paid to a doctor even if they want to have one. This salary issue can be resolved if a full-time physician can hold concurrent posts at multiple tokuyo. This is the "Coordinating Physician System^*1" in France. In France, doctors are in charge of multiple care settings. Furthermore, the full-time physician examines the necessity of medical care from visiting physicians coming from medical institutions and suggests or advises on withholding unnecessary medical care.

There are already tokuyo in Japan that have full-time physicians. Examples include the Setagaya Municipal Tokuyo "Roka Home" managed by the Setagaya City Social Welfare Service Corporation, as well as another municipal tokuyo, "Kamikitazawa Home." Since there are full-time physicians at multiple tokuyo under the same management entity, it becomes possible to cooperate with each other, look at the intentions and conditions of individual residents, and evaluate operations from both medical and caregiving perspectives. When a doctor is on vacation, visiting physicians from hospitals can also cooperate to cover each other's duties. Because a doctor is always involved, staff can work with peace of mind. The anxieties and contradictions of the staff are resolved each time, goals are shared, a sense of fulfillment is fostered, and the retention rate of care staff is maintained. Regarding end-of-life care, if the individual and family wish, they can meet their end at the tokuyo. There, care is achieving results in terms of humanity and organizational productivity.

However, the problem that has surfaced here is the reality in Japan where cooperation between medical care and long-term care is not achieved. Opinions are split right down the middle: some say involving doctors in two ways at a care facility is wasteful and inefficient and that only a full-time physician is needed, while others say only a visiting physician from a medical institution is enough. Long-term care insurance was created nearly half a century after medical insurance. In the past, there is a possibility that the necessity of long-term care was intentionally avoided. In fact, recognition of the importance of long-term care is lagging.

I have passed through both medical and caregiving settings. And what I think about is a person's life, especially the nature of the place where it ends. There, the question of how one should be as a human being is asked.

Old age is a providence of nature; we have no choice but to accept it. If we forcibly go against nature with science devised by humans, we must face a painful end. In today's super-aging society, the goal should be for people to welcome a happy final chapter. Originally, medical care and long-term care are meaningful only when they serve a person's one-and-only life. To that end, rather than simply whether medical care and long-term care cooperate, shouldn't we establish a mechanism where both unite to support a person's life?

We are also part of nature. Following the providence of nature and supporting each other, I hope we can each end our lives peacefully, thinking, "Ah, this was good."

*1

From Candida Delmas, "Care in French Nursing Facilities" (Survival Sciences Series: Talking about Humanitude, 2016)