- Atsushi Asai, MD
Department of General Medicine and Clinical Epidemiology Kyoto University School of Medicine, Kyoto University Hospital, Sakyo-ku, Kyoto, 606-01 Japan
- Masashi Shirahama MD
Mitsuse Health Insurance Clinic, 2615 Mitsuse, Mitsuse Mura, Kanzaki Gun, Saga Ken, 842-03 Japan
Eubios Journal of Asian and International Bioethics 7 (1997), 105-107.
When Mr. X developed acute pancreatitis that none of the medical team at the department anticipated, one month after admission, he suffered severe hypotension and subsequent cardiopulmonary arrest. He was transferred to the intensive care unit. His apnea was long enough to cause severe brain damage and result in sustained disturbance of consciousness. Acute renal failure also developed and required emergent hemodialysis. Approximately two months later, his pancreatitis, renal failure improved and he was returned to the previous ward.
His consciousness disturbance sustained. He could open and close his eyes and move his extremities against uncomfortable stimuli, but he could not express any emotion or desire. He could not speak, could not recognize his family or medical staff. He was bed-ridden, completely dependent and developed severe bed sore. His pancreatitis from unknown origin that was exacerbated by oral intake of food required total parenteral nutrition. He developed gastrointestinal bleeding and thrombocytopenia and they required continuous transfusion of red blood cell and platelet. He need to have 2 packs of each kind of blood every week.
Mr. X was diagnosed as PVS a year after admission. He had not expressed or discussed his wishes regarding medical care he would want should he become PVS with either his family or his attending physician. His brother and father wished that Dr. Y would have everything done to prolong his life, including blood transfusion, vasopressor, mechanical ventilation, and hemodialysis.
Renal failure relapsed and his urine volume gradually decreased. It was very likely that his renal failure required hemodialysis three times a week, on a chronic basis this time, to avoid death from renal failure. Dr. Y thought that hemodialysis should not be initiated because his patient will never recover his consciousness and no one would want to live like a vegetable. It was meaningless. He also wondered whether such an intervention might imply unwise use of scarce medical resources. On the other hand, his family, especially his brother who has been taking care of Mr. X everyday insisted that hemodialysis be provided. Dr. Y tried to persuade the family members that hemodialysis was inappropriate because he would never wake up.
His family informed Dr. Y, however, that they would want Mr. X to live as long as possible regardless of his mental state. Mr. X's brother said, "It is worth while for us to keep him alive. For my brother lives even if he is in PVS"
Should Dr. Y initiate hemodialysis according to the wishes of the family or override it?
- Atsushi Asai, MD
Department of General Medicine and Clinical Epidemiology Kyoto University School of Medicine, Kyoto University Hospital, Sakyo-ku, Kyoto, 606-01 Japan
Literature written by authors from some Western countries suggests that physicians and patient's family usually agree that they should not aggressively prolong the life of a patient with PVS, either when a patient expressed in advance that he or she would not want to live like a vegetable, or when both of them agreed that mere continuation of a biological life in the absence of awareness is not a benefit of the patient. It seems that some societies as a whole permit termination of life prolongation, including artificial nutrition and hydration (ANH) to sustain the life of a patient with PVS. Many cases were actually reported. This case reminded me, however, of some "futility cases" in which physicians sought court judgments in order not to provide their patients with severe consciousness disturbance "meaningless" medical interventions against the patient's family's wishes to do so. In these cases, patient's family were judged as a legitimate surrogate and medical intervention were provided.
Here in Japan, where such preceding court judgments or clinical guidelines have not so far existed, how should we resolve this difficult ethical question and what should we consider before making the final judgment?
First of all, we have to deliberate on the indications of hemodialysis for a patient with PVS. Medically speaking, hemodialysis could undoubtedly improve renal failure and would contribute to save and sustain the patient's life. However, indication of such intervention would be suddenly obscure when we take the meaning of a human life into consideration. For, example, if I were Mr. X, I would never want to live in PVS and would refuse any medical intervention including ANH. As a clinician, I have had many opportunities to care for a patient with PVS and living as a PVS is personally unacceptable. Several recent research suggests that a majority of the Japanese would share a similar attitude. As a viable young person, Mr. X might have agreed with me, while his advance wishes are not available. Even if 99% of the Japanese including me and Dr. Y would not want to live in PVS, however, we cannot predict with certainty what this particular patient wanted. Statistics does not tell anything about a particular individual. I believe it is unethical for us to impose our value judgment on others.
In this case, we cannot make a decision depending on the prediction.
Second, can we decide the value of the life of PVS according to the values perceived in Japanese society as a whole? It is impossible so far. Such consensus has not existed yet in this regard. Many patients with PVS have been in hospitals everywhere in Japan, and it is not obvious what intervention they have had and how aggressively they have been treated. Recently, withholding of antibiotics of a patient with PVS in her 90's has raised ethical controversies in mass media, even if that decision was supported by the patient's family, an attending physician, and other persons involved. Suppose both Dr. Y and Mr. X's family agreed that prolongation of Mr. X's life would not benefit him. Could they withhold hemodialysis without any objection from other people? Could they do it without any ethical and legal challenge? Probably not. Japanese society has not reached the conclusion that biological life of a patient with PVS is not a benefit to Mr. X.
Under these circumstances, whose wishes or opinions should be prioritized in this particular case? Despite no law or guidelines, wishes of the patient's family would usually be respected in such cases in Japan. We have to, however, verify that their wishes are realistic and fully informed. In this case, it seems that Mr. X's family realized that his chance of recovery is extremely slim, and more importantly, they perceive the quality of Mr. X's life as acceptable and that it is sufficient to sustain life at any cost. This discrepancy in the perception of "quality of life "between the family and the attending physician may hardly be resolved.
What should Dr. Y do? In conclusion, there would be no way but to begin hemodialysis. Given no convincing wishes not to do so expressed by the patient, the strong family's wishes, and the absence of social consensus, we could not ethically justify a decision to leave relapsed renal failure uncontrolled and let the patient die.
It should be noted, however, that my conclusion is problematic from the standpoint of resource allocation. If all families who take care of a patient in PVS developing renal failure requested such an expensive medical intervention, the Japanese health care system would soon bankrupt and fail to deliver equal medical care to many other people. It should also be pointed out what would follow if we dismissed hemodialysis for Mr. X because it would not benefit Mr. X. It could imply that we intend to turn down any medical intervention for a patient with PVS. If sustaining a patient with PVS has no benefit, no medical intervention should be provided. In that case, we cannot draw the line between ANH and hemodialysis, or among other interventions like antibiotics and vitamins. There are no universal rules to distinguish medical interventions suitable to a patient with PVS and those that such a patient would not deserve in the world. It is doubtful that the most Japanese are prepared for the decision to withdraw or withhold ANH from such patients.
This case presents a difficult ethical dilemma. No matter what Dr. Y decides, it would lead to new difficult ones. Nothing but explicit advance wishes of the patient not to do so would ethically justify withholding hemodialysis from him when a devoted family desires to sustain his life so far in Japan, but such wishes are not usually available. I wish that family's request presented in the case is exceptional, since chronic hemodialysis for a patient with PVS would be emotionally draining and ethically unconvincing for many physicians and probably for many Japanese.
Finally, people from different countries may have different answers to this question. I would like to solicit opinions to solve this taxing situation.
I usually use the 4-box theory of AR Jonsen et al. in the book Clinical Ethics in analyzing ethical cases.
1) Medical Indications: The patient is now suffering from PVS, pancreatitis, renal failure, thrombocytopenia, gastrointestinal hemorrhage, bed sore. This condition means the stage of multiple organ failure. And it is very difficult to cure this patient's condition. What is the goal of medicine for this patient? The prognosis of this patient will not change if the hemodialysis will start. So I approve of the opinion of Dr. Y that it is of no use to start hemodialysis to this patient. I think good care (not cure) for the patient and also good care for the family member who cannot accept the patient's death.
2) Patient Autonomy: He had not expressed or discussed his wishes regarding medical care he would want when he became a PVS with either his family or his attending physician. So we need to know his surrogate opinion. Who is his surrogate? His brother or his parents?
3) QOL: Dr. Y thought no one would want to live like vegetable. But it is the opinion only from the physician's point of view. It is hard to evaluate QOL because the patient cannot express his desire. How does the family member think about the patient's QOL?
4) Contextual Features: His family, especially his brother who has been taking care of Mr. X everyday insists that hemodialysis should be provided. His family informed Dr. Y that they would want Mr. X to live as long as possible regardless of his mental state. Mr. X's brother said, "It is worth while for us to prolong his life. For my brother lives even if he is in PVS" I want to know if all of the family members agree this opinion. I also want to know why the brother wants the doctor to do hemodialysis so earnestly? Is there any reasons which he cannot accept the patient's death?
I want to know the relationship between doctor and the patient's family. The condition of this patient is only deterioration after admission. I think the family member has the feeling of mistrust to the doctor, such as "Why couldn't you anticipate this bad condition in the hospital?" Does the doctor explain the patient's condition constantly? I think one year is usually long enough to build a good relationship between doctor and the patient's family. It seems it is hard for the Dr. Y to know or understand why the patient's family desire hemodialysis. I want every physician to know the feeling of the patient's family. If they cannot do that, the nurses or medical social worker can help him.
This is the comment only from my experience during the care for the terminal patients. The family gradually accepts the patient's bad condition. There is a good time for the family to accept the meaning of patient's death. The time is dependent on the feeling that they did their best for the patient and the feeling that they are tired and they cannot do any more for the patient. The Japanese word "Akirameru" used for this feeling is not only "giving up", but also has some feeling of calm.
Who pays the cost of this hemodialysis? In Japan national heath insurance can pay the cost of hemodialysis now, so the cost is not a big problem. But the Japanese Health Insurance system also meets the financial shortage, so the awareness of medical costs is needed among all Japanese physicians.
What are the other medical staff's opinions on this case? These difficult problems should not be decided only by one doctor. The other doctor's opinion and other staff such as nurse will help much.
My recommendation on this case is as follows: I approve of Dr. Y's opinion and I think the initiation of the hemodialysis is not useful because the treatment cannot be anticipated to produce any beneficial result for this patient. But a good relationship between medical staff and the patient's family needs to be made, and help for the family to accept this terminal life stage of the patient.
- Sara Carmel, Ph.D.
Dept. Sociology and Health, Faculty of Health Sciences,
Ben Gurion University of the Negev, Beer Sheva, ISRAEL
The case presented demonstrates the social confusion which exists in all industrialized modern countries with regard to the use of medical technology to prolong the lives of terminally ill patients. This situation is a function of a "cultural lag," due to the fact that when technological developments are rapid, societal directives may become inappropriate. New directives take longer to develop. This incompatibility is the source for the ethical, medical, economic and psychological dilemmas faced by the parties involved, as in the described case.
Although the basic social problem is common to many countries, some differences are detected. In Israel for example, most of the court appeals on these subjects were made by family members who asked to permit the withholding of life-support treatment, based on wishes of their ill relative, and in contradiction to physicians' directives. The court judgments have been inconsistent, reflecting the social conflict between two dominant values: the sanctity of life and the patient's right for self-determination.
Ambiguity in social situations is a source of conflicts. In order to prevent such conflicts physicians in Israel often withhold treatment without consulting or even informing the family about such acts. Appropriate communication between the involved parties is the only way to avoid such negative outcomes and situations like the case described. Timely communication with the terminally ill patient, although emotionally difficult for physicians, seems to be essential, in view of the many studies conducted in Western countries, including Israel, which show that judgments made either by close family members or by physicians are significantly different from patients' preferences.
Fruitful communication can be achieved when the doctor-patient relationship is based on a participatory model. In this model the physician shares information with the patient and involves him/her in the medical decisions regarding his/her treatment. This model is in contrast to the paternalistic authoritative model of doctor-patient relations, which is still the most prevalent one in Western countries. Physicians in Israel, in comparison to other Western countries, are less likely to communicate with patients about death and dying, or to discuss the use of LST with them or their families, believing this is what their patients want. In stark contrast to this pattern of physicians' behavior, the majority of Israeli elderly claim that they would like to be told by their doctors about a life threatening prognosis and to be involved in decisions regarding the prolongation of their lives.
Although recent studies show a general tendency for more openness in doctor-patient communication regarding a life threatening diagnosis or the use of life-sustaining treatments near the end of life, the pace of change varies significantly in different societies. The literature also indicates that physicians are not ready to discuss life threatening conditions with their patients even in countries where there are Do Not Resuscitate Orders (DNR), as in the USA.
In view of these social problems, which are expected to persist, medical schools have new challenges. They have to adopt the participatory model of doctor-patient relations, and to develop programs to teach communication skills focusing on how and when to tell patients about a life threatening diagnosis, how to elicit patients' and families' wishes regarding their preferred model of doctor-patient relations, and their wishes about participating in specific decision processes, such as the use of LST at the end of life.
On the wider societal level, surveys of the wishes of both healthy and ill people regarding the prolongation of life in severe illness conditions, and the publication of case studies are some of the initiatives that can encourage social debate, and promote the development of new social directives. DNR orders, durable power of attorney, and the Living Will, are legal regulations adopted by a number of Western countries in order to resolve this painful issue. Although these solutions are not perfect, and raise other ethical questions, such as the stability of people's wishes over time, they are examples of ways to resolve the related social dilemmas.
This commentary is based on the following papers:
Carmel S. Behavior, attitudes and expectations regarding the use of life-sustaining treatments among physicians in Israel: An exploratory study. SSM 43(6), 955- 966, 1996.
Carmel S. and Glick S. Compassionate-empathic physicians: Personality traits and social-organizational factors that enhance or inhibit this behavior pattern. SSM 43(8), 1253-1261, 1996.
Carmel S. and Mutran E. Preferences for different life-sustaining treatments among elderly persons in Israel. Journal of Gerontology: Social Sciences, 52B(2), S97-S102, 1997.
Carmel S. and Mutran E. Wishes regarding the use of life-sustaining treatments among elderly persons in Israel: An explanatory model. SSM, in press.
Carmel S. and Lazar A. Giving bad news: To what extent do elderly persons want to know, and to participate in the process of medical decision making. Harefua (Hebrew), in press.
Carmel S. Medical students' attitudes regarding the use of life- sustaining treatments for themselves and for the elderly. SSM, in press.