pp. 130-135 in
Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
All commercial rights reserved. This publication may be reproduced for limited educational or academic use, however please enquire
Discussion on Health and Asian Bioethics
Fujimoto: Unfortunately some speakers may not be able to join us for this session, Dr Lo from Hong Kong, Dr Wang and Dr Cao from China could not attend. The general title of this session is Health and Asian Bioethics, and the first speaker is Prof. Sy. We have time for one question.
Fan: My question is about conflict between different parts of different values within one culture, for example, in the Filipino culture. How can you compromise, using the example of abortion. Most Filipinos are Roman Catholics, can you negotiate among inside the Filipino Catholic tradition a view on abortion?
Sy: While academics do not compromise, Filipinos in general will not make a fuss about going to the church and having an abortion.
Ratanakul: Thanks for your excellent presentation of Filipino bioethics, I have two questions to ask. Firstly, I am wondering whether indigenous culture and religion have some effect on the foundation of bioethics. Secondly, in Thailand we have great problems in the allocation of health care resources, what about in the Philippines? I think you have many islands and many living far away from the urban sector, do you have this problem. What about the problem of brain drain of doctors to affluent society? Are these problems you are dealing with?
Sy: There is certainly a problem in the allocation of resources, and legislators themselves recognize they have to make use of local resources, and traditional medicine. Especially in the delivery of primary health care in rural areas, which often do not have doctors or hospitals. Relating to the first question, the idea is to pay attention to local or indigenous cultures that may help in bioethical discourse, it can certainly have a strong influence in the near future. As of now, bioethics practitioners are a loose group in the country still.
Fujimoto: Thank you, and we move on to Mr. Fan. Are there any questions on a very interesting presentation?
Leavitt: I think you points on the differences between Western and Eastern culture are extremely important. I think there is also a deeper point that has to be analyzed, when you ask the question whether the doctor should tell the truth or not tell the truth, or whom to tell the truth to? All of these questions are based on a highly paternalistic assumption, that the doctor knows the truth. That there is a truth and the doctor knows it. However, experience shows that you can go one doctor and get a very different prognosis from another one, even if equally qualified. Laboratory tests can get some false positives and negatives, so we are not always sure. We do not know enough about psychological states and how conquering the mind affects the state and progress of disease, so the medical facts may not be an absolute predictor. In general we have to question the assumption that there is a truth.
Fan: I think it is a very interesting comment, and I absolutely agree it is very difficult to know truth, and I myself do not know the truth. Here, when we emphasize physicians should tell the truth to the patient in the West, or to family members in Asia, we mean that the physician has a prognosis that they sincerely believe is the best thing, and must inform the patient or family. It is wrong for the physician to play only a paternalistic role in informing.
Zion: When I hear that families always have their membersf best interests at heart, I get nervous. It does seem to always be the case, especially in relationships between spouses. Husbands may make decisions for their wives, or parents for their children, which are not always in their best interests. So what happens in that situation?
Fan: A very good question, and important. Two distinctions can be made, reality and doctrine. Reality here focuses on the philosophical or ethical, and the nature of the family and the relationships in the family. That family members must take care of each other very well, and must do things in the best interests of the other members is the normative theory in Asia. Second, any theory can be abused, and I know some family members do terrible things to the other members, everywhere in the world. In Chinese families I know this occurs too. But the more difficult question is when you hold a normative theory you cannot throw away the baby with the dirty water, when the theory is abused.
Zion: But surely the whole point of autonomy is that it provides some safety net against this type of abuse. That I would suggest is the whole point of enshrining autonomy in ethics.
Fan: I agree that at a certain level in society, it is necessary that everyone has certain legal rights.
Elwyn: I wonder whether it is appropriate to call the model that you describe an East Asian model when given that there are many countries in the West, such as Italy, where truth-telling is not widely practiced, and if you look at the history of truth telling in the United States in the 1950s you find that telling the family used to also be also the way there too. Telling the patient is a rather modern idea, and how to examine changes in culture. The issue is very controversial, and many Japanese people wish to be told. How do you respond to them?
Fan: There are two questions here. The first question is how new or old truth telling and informed consent is. I generally agree that it does not matter whether it is in the East or West, informed consent requirement is a modern thing, on the other hand, there are also some complications. In this area, other colleagues from different countries can teach me, but for example in Chinese countries I am not quite sure about the situation. There is a very famous Chinese novel, called gDreams of a Red Chamberh. In that chamber there are a lot of clinical contrasts, and the physicians always tell everything to the family members, otherwise they worry that they will be in jeopardy later. Second, there must be differences between places, but this kind of family-centred behaviour is based on Confucianism. That influence is very great in east Asia, no matter if people are Buddhists or Taoists, or Christians, they are still influenced by family centred values. About more difficult questions we need more time to discuss them.
Qiu: I would like to say something about the second part of your question. Physicians in China, will tell the truth to the family, and then the family and physician will decide whether to tell the truth and who will tell it to the patient.
Fujimoto: Thanks for your vivid decisions. The next speaker is Prof. Tan. Thank you for explaining withholding and withdrawing. Any questions?
Mauron: I found the survey quite fascinating, but to go a step further and think about what sort of educational intervention might remedy this situation, there was one question that was not asked in the survey. For those medical students or physicians who correctly do not make a difference between withholding and withdrawing, what is the source of their correct attitude. There could be two. An experienced physician may have come to this conclusion on the basis of experience, but a medical student might simply know that because he heard it in a bioethics class. But if he only heard it in a bioethics class when he is faced with a patient he may not translate this into an appropriate attitude. How does this shape your proposed educational intervention.
Tan: We asked the reasons of all respondents, for all the actions. The ones who would withhold or withdraw treatment believed that their actions would be upheld by the court, and those who did not want to, thought otherwise. So these were the five reasons that medically separated the two groups. Your point on learning in the classroom, on the wards, or better with experience, is a very good one. We do not think that bioethics is best taught in the classroom, it should be taught in ward-rounds. This becomes increasingly important as the student becomes a resident, and role modeling is also very useful learning from experienced physicians. This whole area is undergoing great metamorphosis, and it is only in recent years we have started to grapple with these issues. As I point out in the first slides, we take very poor care of our dying patients, even to this day as we speak. Condemning a patient to continue treatment just because somebody else started the treatment, would not be very good, when that person already expressed when they were competent that they did not want such life-sustaining treatment. It is an example of an area where we could improve on the care of dying patients, and we could use to train our students.
Fluss: One particular figure that struck me was that 50% of patients were experiencing moderate or severe pain. Given the progress in pain relief especially in cancer treatment, I am wondering how the state or federal narcotics legislation is preventing prescribing appropriate pain relief medications in your state. It seems very high compared to what I have read in WHO, and in our own pain relief programme.
Tan: Those figures are published from multi-institutional studies in JAMA, across the USA. There is no question that we do a lousy job as practicing doctors, yet we have very powerful medications and other measures, such as drips and pumps, to restore comfort. I think we have to improve this, and there are several reasons. There are rules from the NARCs and Drug Enforcement Agencies, and rules from state and federal agencies preventing abuse of drugs by physicians, which make doctors nervous about writing narcotic drug prescriptions, when they prescribe increasing doses, especially in outpatients. Yet we are mainly talking about dying patients in hospital. As doctors understand we may have to use large doses, and that this is reasonable and proper, they will become more relaxed, there will be less problems. The second reason is that the use of such drugs may accelerate death, and a drug like morphine in a dose large enough to suppress pain can suppress respiration, and accelerate death. This is what ethicists call the principle of double effect, and both ethics and law say that this is legitimate to treat discomfort and pain, and even if death is hastened it is acceptable. But some doctors are still unwilling to accept this concept for fear of prosecution, as shown in studies. The third main reason is the ignorance and relatively low level of education about learning about pain. Doctors have been taught about etiology, causology, pathophysiology, and diagnosis is paramount. Treatment or cure is the only success, and when it is untreatable or hopeless it may be regarded as a clinical failure or defeat, so the doctors walk away from the dying patient. Even if they cannot be treated the pain must be controlled, with modern technology. With these studies, and the recent discussion about mercy killing, the American physicians will be better educated.
Leavitt: I think the survey is very important. I find it hard to agree with the statement that the doctors are mistaken, but your authorities are American court decisions and presidential reports. I think American court decisions are not so authoritative in an Asian Bioethics Conference, as they may be right or wrong. I found it very interesting to see the differences between psychiatrists, pediatricians, surgeons, and too much ethics is based on the model of etiology and internal medicine, and that the ethics are different in these different subspecialties. For example, in neonatal intensive care we may be dealing with extremely premature babies, for which there is no question of autonomy. I have read a lot about proponents who say start treatment whenever in doubt, as at least you are giving the baby a chance, and they do not worry too much about stopping treatment because they know that this is a baby that 3-4 years ago might have died anyway. So I think further analysis of the survey would be fruitful to find out why in different specialties the answers are different.
Tan: First of all, all these studies are performed in Hawaii, so American law was important. Secondly, are ethics the same but the situations may be different so perhaps they are applied differently in the different specialties. I take your point well.
Fujimoto: Thank you, I will invite Dr Visalakshi to speak. There is time for one question only.
Becker: What do you suggest we should do?
Visalakshi: I think it is a big plan. We need a long term discussion among people who make policy in different countries. I am too small an individual to make a prescription at the moment. I shared my worries about these events, with us.
Qiu: The next speaker is Ms. Zion. Thank you, we can take a question.
Ivinson: Thanks for many things to deliberate on. You pointed out the flaw in your argument yourself, in many ways what you are suggesting is fanciful. If you think that pharmaceutical companies have the interests of every patient worldwide in mind, your argument is flawless. But this is not the case. We pay drug companies large sums of money so that they will come up with drugs to solve our problems, this is not a moral issue but an explicit deal. How will you convince them to go into countries which cannot play their part in the financial side of that? I do not know. In the long term either by not doing the trial, or changing the trial, what would have benefited those developing countries, in your case with the use of AZT. Will these trials lead to twice as much, ten times as much, people being treated over the next ten years? How will it help the victims of AIDS?
Zion: I will have to answer that question in two ways. I am not a utilitarian, so I do not accept that type of argument to weigh up the costs of human lives in the future. I do not reject it out of hand, as it is an important point. Secondly, there was some public action, though we may get trials in which there is no pre-randomization anywhere, so I will accept it. I think the trial that was run in Thailand was an enormous improvement on the Ugandan trial, that was absolutely cynical. I do not think they have the interests of future generations in heart, rather they were looking at their budgets. They would not get ethics approval for such a trial in a developed country that is why they do not run them there.
Shapiro: I would like to follow that up. What can we do about it, as it has been much discussed. A lot of people in the West think part of the answer is to put great weight on the local ethics committee, but this is a chicken and egg problem. Because these ethics committees are not the same as in the West. Do you have some institutional solution to these questions.
Zion: I think that following the Helsinki Declaration and WHO guidelines are a good start, and none of these trials are doing this. It was quite explicit that if there was an accepted treatment, it had to be offered as one treatment arm in the clinical trials, and a placebo was not to be used, this is a bare minimum. The state of local ethics committees depends on where they are. If they are in Zaire they may not give us a good result. It depends if the institutions or the bureaucracy are corrupt or not. There have been cases that were documented in Paris where people received large sums of money for a seat on an ethics committee, to stamp a document. There are many other problems, but are human rights a Western luxury, as it seems from some discussion here. I think that the cases like this highlight that human rights are essential in all communities, because medicine is no longer a local enterprise, it is international. Viruses know no borders.
Leavitt: You spoke about many important things, and in order to emphasis the universality of the problem, I have considered the ethics of pediatric clinical trials, whether it be in the East or West, or developing countries or developed countries, it does not really matter. When you are doing a trial on a young child, the question of autonomy is very doubtful, and when its a baby there is no such thing as autonomy. They say that they make the parents a surrogate, but the parents do not own the child, the child is another human being. I have many questions about how you can do ethical clinical trials with children. Could you comment?
Zion: I could but it would take me two hours.
Qiu: Thank you, we must move on to the next speaker, Dr Boyd. Thank you, I am sorry that time has run out, we can have two questions.
de Castro: Much has been said about the family speaking for the patient in the Asian setting. Do you think it would help in cases where informed consent is being sought that instead of the potential subject being directly asked to give consent, a mediator or go between, a member of the family was asked instead. I say this is that the role of a go between in Philippine society is very important, useful not only in treatment matters but in courtship is often initiated by a third party. Donft you think that this may be useful for informed consent in research, what does your experience in Thailand suggest?
Boyd: I will relate a brief response. From the point of view of understanding and free will, who in our complex familial context is better to speak for someone than a person or onefs parent. In the United States, I as a mother may or may not chose the person whom my daughter may marry, and if it worked out I could take all the credit, and likewise if it did not I would have to take all the blame. Perhaps that is one of the reasons we have evolved to put so much weight on a personfs ability to chose. I fear that there is an abdication of joint responsibility in some of these very complex issues. I wonder if parents in Bangkok would offer their children up to an AIDS vaccine trial if they thought they had any future risk of exposure which would make them vulnerable to infection. Would that be a better substituted judgment than the voluntary consent of the person. I find these thought-provoking questions.
Leavitt: I really appreciate your balanced view. To add a little more balance, I cannot help but remember a couple of years ago the correspondence in the journal Nature, about the development of the smallpox vaccine. This physician totally unethically inoculated children with cowpox and then gave them smallpox, and then Jenner had a vaccine. If we reflect on this, if we had had bioethics 200 years ago we would not have modern medicine. That should sober us a little.
Boyd: Yes, I agree, and there are several paradigms in vaccine development. The AIDS vaccine is the first time in the history of vaccine development in modern civilization that we have been prohibited to try a live challenge test. Therefore any vaccine that is given will be when people make free will decisions to expose themselves to live virus to test its efficacy, and this is a subtlety that is often overlooked in the AIDS vaccine debate, but it is a truism. I may point out that when the polio vaccines were developed in the United States, the racehorse was the Salk vaccine which went to distribution first, but the slower vaccine came from Sabin, and he had to test it in Russia to get it approved because we already had a vaccine in use.
Ratanakul: I am not going to disagree with our colleague, but I want to point out one thing about patient autonomy in our society. I interviewed many of the volunteers for the vaccine test, I asked one of them why did you volunteer? He said gI just want to help myself and at the same time if it works it may help othersh. I asked him did you know that there was an alternative? He said I didnft know that, he thought that this was the only alternative. I asked him did you talk to your family members. He said yes, I talked with my family and they gave their ideas and opinion, and they thought this is the only way that I could be treated. Then they said it is up to me if I volunteer for the testing or not. So you can see we do not have the same concept of autonomy as in the West. As I said yesterday, we believe in interdependence between the self and the family. So the person who volunteers for the vaccine testing may consult with the family members, and usually they will agree, or maybe not. In some case, I asked them what would you do if your family disagreed. Then he said we have to think more and more, but finally it is I myself who make the decision, but with consideration of the suffering I may inflict on family members.
Fan: I very much understand the ethical principles and arguments you made, and as you are considering mainly the problem in Thailand, but I did not hear much about how Thai scholars or decision makers think about the decision to allow the trials of the vaccine. I would have liked to hear their arguments, and your deliberation of these, otherwise we are just talking about two types of language, and many people take the principle-based argument you use for granted. But for native people they may take something else for granted, and we have to cut across the issue more deeply or directly, otherwise the two languages may not meet.
Boyd: Thank you, I also hope we can find ways to enlarge our language and other ways of communication to serve as world citizens.
Verma: This is in response to what Dr Leavitt said, knowledge gained is not sufficient to argue for trials. Here is a vaccine which the USA FDA refused to allow in trials, as it was unethical. Now they try it in another country. We have to guard against this, the use of a vaccine that is not approved in the country where it is made, in another country, Thailand. I am sure that this vaccine will never get approval for a trial in India because the drug controller, very wisely, has said that if it is not approved by the FDA they will not approve it in India.
Boyd: The IRB is a very important intermediate for the assessment of these risks and benefits.
Qiu: Thank you, we will have to move to the last speaker, Dr Zhu who is presenting the paper of Dr Lu who had to cancel his trip to Japan. Thank you for the paper, are there any comments?
Tan: I think that hospice care is an excellent way to take care of the terminally ill. It is not only pain and discomfort that the patient suffer from, but also mental anguish, and both these can be taken care of in the hospice. However the dying patient also frequently feels a burden to themself or their family members, including a financial one. A line must be drawn, and futile care should not be given. Secondly, the dying patient is frequently depressed, and I think the diagnosis of depression and its treatment is markedly underrated in the terminal patient. Thirdly, the dying patient frequently fears loneliness and abandonment, that is why dying in the hospice setting, or better yet, dying at home surrounded by onefs loved ones, will be markedly superior than dying in the cold high tech environment of the hospital.
Leavitt: To continue in the line of Dr Tanfs comment. In Israel we have home hospice in addition to the institutional hospice, where there are visiting nurses and doctors, who treat the patients in their home. This means they have the benefit of both medical supervision and the warm home environment, and it might even be cheaper. It might be looked into in societies where cost is a serious factor.
Qiu: I agree with both your comment, and Dr Leavitt has a good idea. My mother is approaching the terminal care and she does not want to go to a hospice, she wants to die at home. Some family members may agree with the patient going to the hospice because all the family may be working and nobody can care, because the care is demanding work. For some patients they do not want to go, so it is their choice, so home hospice is good.
Leavitt: It is not my idea, I am just reporting what is done. If anyone is interested, I will be able to put you in contact with the groups in Israel.
Macer: My mother is also in the terminal phase of her life, and in New Zealand there is government supported and volunteer home nursing services, that have supported her wishes to stay at home. They work closely with the institutional hospice.
Qiu: Thank you to all the discussants and speakers.