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

2019/12/05

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 belief that I must save lives, but when I saw cases where cancer diagnoses were withheld 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 "special nursing home") at the age of 70. I thought I would understand the reality after two or three years and then return to the world of hospital medicine, but nearly 14 years have passed. The reason I have stayed so long is that I saw another form of medical care here.

We cannot live forever. Eventually, the end comes. In the past, people looked after the elderly by their side until the very end. They could feel what a natural death was like. However, today in Japan, under the universal health insurance system, even in the special nursing homes that serve as final abodes, people are forced to eat, made to aspirate, and then sent to the hospital when they are on the verge of death. Therefore, most people have no opportunity to know natural death. Voices arose from families saying this was wrong. Having transitioned from a hospital myself, I felt the same way, and I was moved by the sight of natural death without medical intervention and the peacefulness of those final moments. It wasn't just me; staff from other professions felt the same. That was "peaceful death."

However, the reality that nearly 80% of deaths in our super-aging society occur in hospitals means that 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, author of "Kokumin no Dotoku" (National Morality), committed suicide by jumping into the Tama River as his life's final chapter approached. Three years ago, Sugako Hashida, the creator of "Oshin," wrote in "Bungeishunju" that she wanted to go to Switzerland where euthanasia is possible because life-prolonging treatment is forced upon people at the end in Japan, which caused a public stir. Although the number of curable diseases is increasing due to advances 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, "dying-place refugees."

Aging is originally the final chapter of life on a continuous timeline that includes death. In our country, from the moment someone enters the terminal stage and requires long-term care, there are many cases where their life, which had continued uninterrupted until then, is suddenly severed from that timeline and they are forced to meet their end in a hospital. Medical care that views aging as a pathological condition characterized by accumulated ailments and makes it a target for treatment imposes forced and futile pain on elderly people approaching the end of their lives. Even in special nursing homes called final abodes, when the end finally comes, patients are sent to the hospital based on family wishes or the facility's judgment. Even if aspiration pneumonia in the elderly can be cured in a hospital, weakened swallowing functions cannot be restored to their youthful state. Death from old age is likewise not an abnormality but a natural consequence. In recent years, excessive medication and testing for the elderly have finally come to be viewed as problematic.

Even if one wishes only to prolong life in a hospital and continues to supply fluids and nutrition until the end, the body cannot process them. Even if a person is actually eating in a care setting, once the aging body enters a state of preparation for death, the nutrition does not take hold and the body withers. When that time comes, one naturally moves toward death. Yet, when faced with death, the human heart wavers in various ways. One wonders if it is okay to provide no medical care, or if life can still be sustained through medicine.

In this world, the unexpected happens suddenly. An earthquake directly beneath us could occur today. On the Sanriku coast, local people knew from 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 went to pick up a daughter at kindergarten or an elderly parent at home and were swept away by the tsunami and died. They might have been saved if they had fled, but they did not. In psychology, this abnormally noble but ultimately irrational human behavior is called "normalcy bias." This human action and thought beyond profit and loss, this human love—this too is human. This is the world of philosophy and religion.

Buddhism is said to be fundamental thinking, a way of perceiving the meaning that dwells behind things. If one accepts "aging, illness, and death" as the destiny one must receive, one is naturally guided to the wisdom of things as they are.

"It is so of itself"—this is the way of life in the Eastern concept of "Shizen" (Nature). In contrast, the Western concept of "Nature" regards it as an object to be dominated. Medical care is meaningful only when it serves a person's whole life. In Western medicine, physical diseases are regarded as objects to be dominated 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 medical care, we have entered an era where we can live long lives. However, we humans are living creatures. Eventually, the end will come. Care facilities are no longer places to intervene and dominate physical problems. They are places to support the hearts of people 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. Paramedics think, "Are we transporting this elderly lady again? We transported her before, 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 few 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 work can be continued. Society must help.

However, in many care settings where elderly people whose condition could change at any moment are 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 aging and heading toward the final chapter of life. The fact that medical care was thought to be superior and nursing care 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, Law No. 123).

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

The definition of long-term care insurance includes a person who takes charge of "health management and guidance on medical treatment for residents," but this is the same for assigned doctors dispatched from medical institutions, and the roles of the two are not distinguished. However, the roles of the two on-site are very different. An assigned doctor from a medical institution visits the care facility once every two weeks, hears about the medical condition from a nurse, prescribes medicine, or orders tests and leaves. During a short stay, attention is concentrated on ordering immediate medical treatments, and the meaning of medical care in the resident's life becomes secondary.

On the other hand, a full-time physician at a special nursing home 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 consult with the full-time physician on whether to continue medical treatment at that point.

Another reason why few care facilities have full-time physicians is that with an additional fee proportional to the number of residents, if the scale of the special nursing home is small, they cannot secure a salary for 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 special nursing homes. This is the "Coordinating Physician System*1" in France. In France, doctors are in charge of multiple care sites. Furthermore, the full-time physician examines the necessity of medical care from assigned doctors coming from medical institutions and suggests or advises on withholding unnecessary medical care.

There are special nursing homes in Japan that already have full-time physicians. Examples include the Setagaya Municipal Special Nursing Home "Roka Home," managed by the Setagaya City Social Welfare Service Corporation, and another municipal special nursing home, "Kamikitazawa Home." Since there are full-time physicians at multiple special nursing homes under the same management, they can cooperate with each other to look at the intentions and conditions of individual residents and evaluate operations from both medical and care perspectives. When a doctor is on leave, assigned doctors from hospitals can also cooperate to cover each other's duties. Because some doctor is always involved, staff can work with peace of mind. Staff anxieties and contradictions 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 special nursing home. 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 nursing care is not established. Opinions are split down the middle: some say involving doctors in two ways at care facilities is wasteful and inefficient and that only a full-time physician is needed, while others say only an assigned doctor from a medical institution is sufficient. Long-term care insurance was created nearly half a century after medical insurance. In the past, the necessity of nursing care may have been intentionally avoided. In fact, recognition of the importance of nursing care has been delayed.

I have passed through both medical and care settings. 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 nursing care are meaningful only when they serve a person's one-and-only life. To that end, it is not just a matter of whether medical care and nursing care cooperate with each other, but rather that we should establish a mechanism where both unite to support a person's life as one.

We too are 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" (Seizon Kagaku Sosho: Talking about Humanitude, 2016)