Religionists and Care for the Terminally Ill
by Yoshiharu Tomatsu
Care for the terminally ill in Japan is confronting a paradox. Although the great majority of Japanese now face the near certainty of dying in a hospital, the country's physicians are taught only the major issue of prolonging their patients' lives. Although it cannot be said that doctors consider the death of a patient as nothing more than a setback, how they are supposed to interact with those whose death is imminent remains an unresolved problem. There are not enough physicians, and during their crowded schedules hospital doctors are expected to examine numerous patients. Even if they want to listen to the concerns and anxieties of their patients, there is not enough time. Under today's medical treatment system in Japan, when every kind of therapy is converted into a predetermined number of medical insurance points, the problems in running a hospital mean that nothing seems to go the way a doctor wishes when it comes to dealing with the dying. Given these circumstances, there are now strong voices calling for religionists and professionals who have undergone special training related to spiritual care to take up the task of caring for the terminally ill, not only for the sake of the patients, but also for their families.
Concerning this question, what do we religionists think, as people who often deal directly with the matter of death? Speaking from a Buddhist perspective, at present traditional Buddhist temples hold funerals and the subsequent memorial services in following years, together with several annual observances. That is the main role currently played by the temples. Indeed, it is often the case that ordinary people become involved with a temple for the first time through someone's death. In other words, a temple is a place to visit after a loved one has died.
On the other hand, on the question of how we should deal with the dying, the traditional Buddhist community did not have any special program of education for the clergy. Compared with the plans for memorial services after a person has died, it can be said that plans for offering care for the hearts and minds of those facing death were extremely rare. In addition, because most Buddhist priests have not even the slightest knowledge of medical treatment, even if they are inspired to visit a hospital, they would just create a feeling of strangeness, and might even cause trouble for the physicians, nurses, and the patients themselves. Such a visit would do nothing but make the clergy themselves feel good. What is needed in order to have meaningful contact with patients whose condition changes from day to day is a certain degree of knowledge concerning their illness and its treatment, as well as the effects of any medications the patient might be taking.
The Right to Self-Determination
For that reason, I believe there is an urgent need for education on views of life and death for both religionists and medical therapists so that terminally ill patients and their families may be able to receive the spiritual care that they require. In the field of medical ethics in Europe and North America, autonomy (the right of self-determination) is a key term. This is the principle of giving priority to the patient's autonomy in terms of medical treatment, as long as doing so violates no social or moral codes. On the contrary, however, in the case of Japan's care for the terminally ill, there are many instances when doctors are not able to proceed according to the wishes of the patient because of the wishes of the family. For example, even if a terminally ill patient has made it clear that he or she does not want to be kept alive by life support systems, doctors find it very difficult to make decisions on treatment because they cannot ignore the pleas of families who say they want the physician to do everything possible to prolong the patient's life.
It thus appears that Japan is not a land in which the patient's own decisions are respected. Conditions vary, so in order to obtain the best end-of-life care based upon one's own decisions, it is necessary to develop a three-way system of mutual trust made up of people from the fields of medicine and religion, and the patients and their families. That is how, first of all, the physicians and religionists involved with the patient can each deal subjectively with the question of death, and how their understanding can be shared together with the patient and the patient's family. This is a point of great importance. To be specific about details, a concerned religionist, medical practitioner, and member of the patient's family will have to go beyond their own narrow viewpoints and deal with the dying patient on a one-to-one basis. This will involve spending considerable time at the patient's bedside. To do this effectively, it is necessary to foster special "spiritual care workers" who can always be with the patient.
A previous report on brain death and organ transplants prepared by the Jodo Shu Research Institute listed some guidelines. The main point was that when a person is declared brain-dead, the wish of that person to help save the life of another by authorizing the transplanting of his or her organs must be respected. Buddhist doctrine, however, contains the concept that we should not be attached to the idea of life itself, and it is not right to say that one is correct and the other is wrong. But even here, what we can say is that from every standpoint, it is desirable to respect the right of a patient to self-determination as far as possible within limits generally accepted by society. Under Japan's current Organ Transplant Law, which was enacted in 1997, when the patient's wishes are clear and the patient's family consents, if authorized by the medical ethics committee any person over the age of fifteen may serve as an organ donor.
A proposal to revise the Organ Transplant Law that calls for an easing of the conditions for organ transplants from a brain-dead donor is now under consideration in Japan's Diet, or parliament. It states: "Brain death should uniformly define a person's death, and, if the family consents, unless a clear rejection has been stated by the deceased, then organ transplantation from a brain-dead person should be allowed." Under the proposed revision, once a person is officially declared brain-dead, that person is considered legally deceased, and any further medical treatment should be terminated. Does this not obstruct the right to self-determination of those who believe that the previously established three signs--that the heart has stopped beating, the lungs have stopped functioning, and the pupils are dilated--are the indicators of the death of a human being?
The Role of Religionists
Japanese television and the press occasionally featured people who were collecting donations to enable a Japanese child with a serious heart ailment whose life could only be saved by a transplant from a brain-dead donor, and whose parents were in the United States so that their child could benefit from that operation. The media devoted much time and space to the case because it was deemed exceptionally newsworthy. Indeed, many people were moved when they saw the coverage.
On the medical front, doctors are doing everything they can to save the life of the child. In this situation, even if religionists say, "According to Buddhism, the life of the brain-dead person and the life of the ill child have the same value, so we must not depend too heavily on organ-transplant surgery," those words would seem to be unrelated to reality and would not have the power to appeal to society. And yet, it is not right that we religionists should be carried away by emotion from the mass media coverage. Although sympathizing with and understanding the anxieties and sorrows of parents with a child whose life can only be saved by an organ transplant from a brain-dead donor, as well as the suffering and pain of the little child, it is still the essential mission of religionists to speak about and make known the views of their faith about issues related to human life and death.
As the most important Buddhist concepts concerning birth, aging, sickness, and death teach, becoming old and dying are key aspects of life, so to say that one wants to escape from them is the same as saying that one wants to escape from life itself. One of the great roles of religionists is to take up, face-to-face, the issues of old age and death on a regular basis. In particular, an activity that can be undertaken within the framework of Buddhism is for each individual to voluntarily consider every day in a positive way the prospect of his or her own death. We can also encourage them to share their insights with their family, their neighbors, or with groups of like-minded believers. I believe that this becomes a way of "eliminating" worries, as outlined in the Buddhist doctrine of the Four Noble Truths: the Truth of Suffering, the Truth of Cause, the Truth of Extinction, and the Truth of the Path. One more important point is that Buddhists, and especially the Buddhist clergy, should always visit their ailing parishioners and become close to them. For example, even if only for brief periods, they should spend some time with them, whether just to lend an ear, make small talk, or sit silently.
Some two years ago, as a member of the Jodo Shu clergy, I began to lecture to students in the medical school of a university in Tokyo. Although I thought it strange that a clergyman without a physician's license should be lecturing to medical students, I now teach once a week in a class with ten to twenty students. As it happens, I know a few licensed physicians who are also ordained clergy, but they devote all of their time to being doctors and do not make it clear that they are also priests. Seven years ago, my father, who was also a clergyman of the Jodo Shu, died in the hospital affiliated with the university where I now lecture. At that time, I was greatly impressed by the young doctors, who did everything in their power, including applying the best therapies, in trying to cure my father's illness.
Later, I had an opportunity to speak with the dean of the medical faculty. I asked him if there was anything that a Buddhist priest could do in the medical school, which led to my present position. In my lectures, in addition to issues related to death and the ethics of living, I call on the students to be impromptu actors and the whole class takes part in a session of role playing, depicting, for example, the thoughts of a patient with terminal cancer. This helps the students accumulate experience through these sessions and the following discussion. For the students, each such occasion is a case of acting out an actual situation, for through this role-playing the question of dying, which they usually tend to think of only in the abstract, becomes something real that puts pressure on them.
I have heard that before my paternal grandfather died, my father asked the doctors at the hospital to prescribe the best possible treatments for him. My father, though it might be misleading to say "as a member of the clergy," took proper care of his health, and never neglected to undergo periodic medical check-ups. I was able to see that he received the best possible medical care in his last years, just as he had done for his own father. That was because we were fortunate in having the service of excellent young doctors available. I cannot help but think that in both cases the situation appropriately accorded with the patient's "right to self-determination."
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