49TH YEAR, NO.
5,
SEPTEMBER-OCTOBER 1996~ :1' ~
W
~Iwii
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THE MAGAZINE OF THE WORLD HEALTH ORGANIZATION
In this issue
Editorial Health, ethics and human rights 3
Hiroshi Nakajima Patients' rights 4
H. J. J. Leenen Achievable goals 6
Daniel Callahan A better world for all 9
Bengt Lindqvist A plea for the individual 1 0
Claude Sureau Information and self-determination 12
Kazumasa Hoshino Bioethics in an Asian context 13
Ren-Zong Qiu The meaning of life, suffering and death 16
Hubert Doucet Caring for people with AIDS
in rural Africa 18 Thebisa Hamukoma Chaava
Genetic diseases 20 Kore Berg Prenatal diagnosis 22
Jean-Fron~ois Mattei Human rights and HIV /AIDS 24 UNAIDS at the UN Commission
on Human Rights Susan Timberlake A new way of seeing old age
is needed 26 Margot Jefferys The greying of Japan 28 Hiro Wakasugi & Syozo Toyomasu Bioethics and medical practice 29 Julio Montt Momberg & Roberto Mancini Rueda
World Health • 49th Year, No.5 September-October 1996 IX ISSN 0043-8502 Correspondence should be oddressed to the Editor, World Heolth Mogozine, World Heolth Organization, CH-1211 Geneva 27, Switzerland, or directly to authors, whose oddresses ore given ot the end of eoch orticle_
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World Health • 49th Year, No.5, September-october 1996
Editorial
Health, ethics and human rights
I
n all cultures, the people with special knowledge and powers to deal with suffering and death also have special obligations. In their respective societies, healers and health professionals have thus al- ways been subject to a wide variety of written and unwritten rules.For more than a millennium in the Western medical tradition, the Hippocratic oath has encapsulated some of the principles that are still seen as essential for good practice in the health professions. And for almost 50 years now, the World Health Organization has set technical and ethical standards and proposed guidelines and codes of good prac- tice in virtually all areas of health, as mandated by its Constitution. The Organization also contributes to the harmonization of legislation and terminology, and fosters the dissemi- nation and exchange of information on these subjects.
Ethics today is a matter of lively public interest. This reflects a strong desire to assert some measure of control over the current proliferation of new biomedical and information technology. People want the benefits of science and technology, but they also want democratic control over their own lives and societies. Hence the concern among the general public to be consulted, to ensure that sci- ence and technology are harnessed to protect rather than endanger human dignity, health, well-being and diver- sity.
Genetics, for example, offers the hope of therapies for previously incurable diseases but it also holds the risk of eugenics. Screening is a valuable tool for prevention and care, but may also lead to discrimination
and breaches of confidentiality.
Organ transplants can save lives but they also raise difficult issues such as accessibility, cultural resistance and commercialization. Technology which prolongs life also prolongs the dying process.
These are not just theoretical matters. They concern the profes- sional ethics of all those involved- scientists, health workers, econo- mists and politicians alike. They also, of course, concern us all be- cause they deeply affect our lives and relationships.
The issues raised will not be settled by a list of abstract principles or by medical judgement alone.
Ethical dilemmas arise in concrete situations which are shaped by his- tory and culture. They require care- ful consideration of both what is desirable and what is possible. For example, how do we balance individ- ual with social needs? How do we ensure that quality of care is recon- ciled with equity and is not used as a pretext to serve the interests of the few? If the development of technol- ogy is driven by market forces, what happens to the principle of health for all? How do we ensure that research and health development take into account the needs of the poor and provide them with effective health care and services?
To be ethical, our responses must be both honest and humane: flrst, they must be applicable to people's con- crete circumstances, and meaningful to them; and second, they must be respectful of their rights, values and personal dilemmas, as lived within their own communities. In other words, ethical issues must be worked out with the people concerned.
Or Hiroshi Nakajima, Director-General of WHO.
3
Values cannot be imposed from the outside, but a very active search is needed for convergence in the values which guide our health work and policies. To foster health devel- opment and international health action in a spirit of respect, solidarity and equity, WHO's first responsibil- ity must be to promote a genuinely open dialogue involving all peoples, cultures and health-related groups and institutions. All partners con- cerned, both within and outside the Organization, should feel authorized to speak and be heard with respect and attention. •
Hiroshi Nokapma, M.D., Ph.D.
Editor's Note
As the articles in this issue show, ethical opinions con differ sharply.
These ore the opinions of the authors, not necessarily of WHO. They ore published here to encourage thought and discussion. Starling in 1997, our 50th year, World Health will include a section featuring readers' views, to help promote on open dialogue on health issues and policies. What do you think about the opinions expressed in this issue? Write to us at World Health magazine, WHO, I 21 I Geneva 27, Switzerland, and mark your letter
"Readers' views".
4
Patients' rights
H. J. J. Leenen
Registering for immunization in Viet Nom. Health core is a human right for all.
Modern health core con only function when doctors and patients behove as partners.
Indeed, experience and research hove shown that patients who ore informed and involved, and whose rights ore respected, recover more quickly and hove shorter stays in hospitals.
A
wareness of the rights of pa- tients is evolving rapidly. This is partly due to the develop- ment of medical science and technol- ogy, which are intruding more and more on the human body and mind.People demand the right to determine for themselves what medicine they will receive. In addition the health care system is becoming more com- plicated. So patients, already depen- dent on the services because of their
illness and the insecurity it produces, feel even more subordinate to the services and seek the support of the law to strengthen their position.
The equitable distribution of scarce health care facilities is a problem of a different nature. As WHO has always stressed, every- body is entitled to the health care that he or she needs, but there is some- times a distressing disparity in the apportionment of health care, not only between countries but also within countries. The rising costs of health care and the increasing em- phasis on market forces in health care make even more remote the fair distribution of available health care facilities. Governments and legisla- tors have to intervene in the alloca- tion of health care in order to guarantee the accessibility of that care for every citizen, and equity in its partition.
These problems fall within the province of both ethics and health law, and here the two disciplines overlap. As everybody knows, rights are often not maintained, even when people agree that they are required by justice. Then law has to play its role, and its instruments can con-
World Health • 49th Year, No.5, September-october 1996
tribute to closing the gap between reality and ideas of justice.
Sometimes law is regarded as creating a conflict, but its purpose is to prevent social conflicts and to solve them when they arise. The legislator who draws up rules gov- erning the state of marriage, for instance, is not seeking to hinder the very personal relationship involved in marriage; asserting the rights of children is not to deny the personal feelings uniting children and parents.
A mutual agreement
This is no less true for patients' rights in medical treatment. Such rights are invoked with a view to facilitating cooperation between doctors and patients. The relation between patient and doctor involves a mutual agreement to work together to solve the patient's problem. To call that an agreement does not negate its basis of mutual trust.
Modern health care can only function when doctors and patients behave as partners. Indeed, this kind of cooper- ation appears to have a positive effect. Experience and research have shown that patients who are
informed and involved, and whose rights are respected, recover more quickly and have shorter stays in hospitals.
Cooperation requires skills.
Therefore regulation in law has to be complemented by education and training of health care providers and of patients. They must be informed about their own and each other's situation, and must learn to commu- nicate and cooperate. Health care providers have a special responsibil- ity here.
Patients' rights are receiving more and more attention from the public and from legislators, at both national and international level.
Such rights are set out in the
World Health • 49th Yeor, No.5, September-October 1996
International Covenant on Civil and Political Rights (1966), in the European Convention of Human Rights and Fundamental Freedoms (1950), in resolutions of the Council of Europe, decisions of the European Commission and the jurisprudence of the European Court of Justice. The Council of Europe is preparing a convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine, in which patients' rights are incorpo- rated. Private organizations have also contributed to the development of patients' rights. The EEC Hospital Committee, for instance, has adopted a charter on the rights of the hospital patient (1979), and in 1995 the World Medical Association revised its Declaration on the Rights of the Patient.
A Declaration of Rights
WHO itself is active in this field, especially in the European Region.
On the basis of two comparative studies which surveyed develop- ments in European countries, the Regional Office for Europe decided to draft a declaration on the rights of patients. The draft was discussed by a group of experts and sent for com- ment to the Member States and to national and international organiza-
tions. In March 1994 the final text, entitled "A Declaration on the Promotion of Patients' Rights in Europe", was adopted by a special WHO European Consultation on the Rights of Patients, held in
Amsterdam. As is customary in this type of declaration, the focus is on such individual rights of the patient as information, consent, confidential- ity and privacy, and on their applica- tion. A special paragraph is
dedicated to care and treatment, and this covers social rights in health care.
These rights are presented as principles. They provide guidelines for the Member States and for other organizations, while the way in which they are implemented remains a national matter. How organizations can make use of this European Declaration is illustrated by the revised Declaration of Lisbon of the World Medical Association of 1995, mentioned above, which to a large extent echoes it. Such use is all the more important because international instruments are often not coordinated with one another. For other regions of WHO and for WHO itself, the European Declaration can serve as a model.
Declarations provide an instru- ment for improving health care, which in today's world calls not only for new medical techniques but also for new human relations. These new
5
human relations need to be supported by the international and national recognition of patients' rights. Other aspects too have to be taken into account, such as rulings on the quali- fications and competence of health care providers, the quality of medical appliances and the guaranteeing of everybody's right to the health care they need. The formulation of pa- tients' rights is just one part- but an important one- of the regulation of the health care system. •
Or H.).). Leenen is Emeritus Professor of Social Medicine and Health Law at the University of Amsterdam, Netherlands, and Chairman of the
preparatory woup of the Declaration on the Promotion of Patients' Rights in Europe.
His address is Oosterpark 46, I 092 AN Amsterdam, Netherlands.
Additional reading:
Leenen HJJ., Pinel G., Prims A.V. Trends in health legislation in Europe. Published on behalf of the WHO Regional Office for Europe by Masson, Paris, 1986.
Leenen HJJ., Geversj.K.M., Pinel G. The rights of patients in Europe. Published on behalf of the WHO Regional Office for Europe by Kluwer, Netherlands, 1993.
WHO Regional Office for Europe, 1994.
The proceedings of the European Consultation on the Rights of Patients are published in: Promotion of the rights of patients in Europe, Kluwer, Netherlands,
1995.
Distribution of essential drugs in Latin America. Governments must play a key role in ensuring fair access to health care.
In todoy's world, doctor and patient have to cooperate in
order to arrive at the best possible treatment.
6 World Health • 49th Year, No.5, September-October 1996
Achievable goals
Daniel Callahan
Scanner examination in Switzerland. The cost of high technology puts it beyond the range of most people in the world
Some people require only an aspirin over a lifetime to stay well. Others need expensive neonatal care at the beginning of life, and organ transplants at the end. A rights model implies that everyone s needs
should be met, regardless of the kind or expense of the care they need. The obvious difficulty with this model is that it overlooks the scarcity of resources.
I
t is not difficult in any society to persuade people that health has a high value, or that a healthy popu- lation is a social and economic necessity. What is more difficult isto find a way of making that case effectively in the face of scarce resources. No one will argue against good health as an aim, but not every- one is ready to give it the priority necessary to pay for it.
Part of the trouble is that modem scientific, high-technology medi- cine, while highly popular, is becom- ing more expensive with each passing year. This is particularly true as countries see the burden of illness shift from infectious to chronic diseases. The latter are less amenable to inexpensive and rapid cures.
There is also considerable confu- sion about the best way to make the case for good health care. One model, using the language of rights, argues that each person has a basic human right to health care, which it is the obligation of society to pro- vide. This model focuses on the welfare of the individual rather than that of society as a whole. The other model, using the language of soli- darity, holds that we ought mutually
to support each other in the face of illness and death through the provi- sion of decent health care. This model focuses on the welfare of the society as a whole. Where the rights model is individualistic in its orien- tation, the solidarity model is com- munitarian.
The struggle between these two models might be only of academic interest except for some serious implications. The premise of the rights model seems to be that an equitable distribution of resources requires that each individual (a) should have equal access to care, and (b) that equal outcomes of health care should be sought from that care.
And it seems to imply that the goal of medicine should be to reach and help everyone, regardless of the nature of the diseases and illnesses that afflict them. Some people require only an aspirin over a life- time to stay well. Others need ex- pensive neonatal care at the beginning of life, and organ trans- plants at the end. A rights model
World Health • 49th Yeor, No.5, September-October 1996
A young child with severe diarrhoea in Bangladesh arrives in the hospital for treatment.
Poverty brings inequity in both preventive and curative care.
implies that everyone's needs should be met, regardless of the kind or expense of the care they need.
The obvious difficulty with a rights approach is that it overlooks the scarcity of resources and pro- vides no clear way of balancing the good of some individuals against the overall good of the community.
There is no obvious way for the individualism of the rights approach to give way to the societal need to set limits on health care resources.
Characteristically, countries that emphasize an individual right to health care-such as the United States- have been weak in providing good public health programmes and community services. High technol- ogy and acute care medicine are accorded the power, prestige and economic glory.
Community orientation
The solidarity model, by contrast, has in practice had a population and community orientation. Historically the fruit of post -Second World War universal health care policies in Europe, solidarity approaches have stressed the need for primary care and public health services and the necessity of setting overall limits to care. Consequently, though rarely
written into explicit policy, there have usually been de facto limits on high-technology medicine, particu- larly for the elderly. The strength of this strategy is that it has guaranteed a decent base of care for everybody.
Its weakness is that it has sometimes, perhaps often, been forced to sacri- fice patients at the margins, where care is expensive and good outcomes less assured.
This is a broad-brush picture.
There are many exceptions to my generalizations about both a rights and a solidarity strategy, and they are often mixed together. But I believe that, on the whole, it is an accurat~
picture of two contrasting ideologies.
The question, then, is which ap- proach is likely to prove most helpful in the future?
Both approaches encounter prob- lems these days. Rights-based poli- cies run up against the hazards of new and expensive technologies, exceedingly valuable for a few but a terrible financial drain on the health care system as a whole. An effective combination of life-extending drugs for a person with AIDS can now cost from US $60 000 to $70 000 a year.
Solidarity-oriented approaches, with their guarantee of care for all, are
7
encountering the increased resistance of a public unwilling to pay higher taxes to support a welfare state. The response in both cases has been to look for greater efficiency in the health systems in order to control costs, and to turn to the market to relieve pressures on government.
While both greater efficiency and the market may be of some help, there are some serious limitations to both. Much contemporary health care will remain inherently expen- sive, not amenable to efficiency solutions. A market policy runs the serious risk of increasing the dispari- ties between rich and poor in gaining access to health care; it is a direct threat to equality of care.
A third way?
Is there a third way to go? I want to suggest that the time has come for a fundamental international examina- tion of the goals of medicine and, along with that, a reconsideration of the place of medicine in health care systems. A market and efficiency strategy divorced from a reconsidera- tion of medical goals is not likely to work. Why look at goals? There are
A patient being token core of in Cuba. Guaranteeing a decent bose of core for everyone calls for a subtle balance between expensive and inexpensive technologies.
8
An immunization session in the Philippines. Access to preventive core is a right for the individual, and a necessity for society.
three reasons to do so.
The first is that the present goals of modern scientific medicine are no longer realistic or affordable. The most important of such goals is the dedication to unlimited progress and technological innovation. But it is clear that progress itself is often the problem, since it tends to generate unaffordable technologies with only marginal population benefits. A fresh analysis of the most helpful kind of progress for the future would be welcome.
A second reason is that more and more social problems are being transformed into health issues.
Substance abuse and the problems of urban living provide examples of that trend. A sober and careful examina- tion of the drift toward the medical- ization of life is in order. A third reason is that modern medicine has been unwilling to set any finite, achievable ultimate goals. It seems to want only more health, more
progress, more satisfaction of desire.
This proclivity plays into the hands of a profit -oriented medical market.
The moral need for equality is made all the more unattainable if priority is given to progress over fairness, more over enough, and infinite goals over limited, achievable goals.
World Health • 49th Yeor, No. 5, September-October 1996
In sum, the present goals of modem medicine have assumed the possibility of inexpensive endless progress and the capacity of biomed- ical research to overcome all biologi- cal boundaries. That assumption is proving false, but a more modest one has yet to appear. No doubt the future will see a mix of rights- oriented strategies, and a blend of public/government and private/
market strategies to control health care costs. But if those tactics are not accompanied by a fundamental reconsideration of what it is that medicine and health care ought realistically to seek, there is likely to be no way out of problems that will get worse before they get better. •
Daniel Callahan is the co-founder and President of the Hastings Center, 255 Elm Road, Briarcliff Manor, N. Y l 051 0, USA, he is
the author of The troubled dream of life:
in search of a peaceful death.
A TB patient being examined in Ghana. Is the lime ripe for a fresh analysis of the gaols of medicine, to ensure that they are both realistic and affordable?
World Health • 49th Yeor, No.5, September-october 1996 9
A better world for all
Bengt Lindqvist
The chain of events which started with the International
Year of Disabled Persons in 1981 will finally lead to stronger and more generally accepted legislation in the disability field.
''N ot
until the creation and maintenance of decent conditions of life for all men are recognized and accepted as a common obligation of all men and all countries, not until then, shall we, with a certain degree of justification, be able to speak about mankind as civilized."This statement was made by Albert Einstein in 1945, as a reaction to the horrors of the Second World War. Out of this feeling a determina- tion grew to strengthen human values and dignity. As everyone knows, this led to the adoption of the Universal Declaration of Human Rights three years later. Since then the involve- ment of the international community in strengthening human rights has developed apace. The two general covenants on political and civil rights and on social, cultural and economic rights are among the most important agreements, while during the 1970s and 1980s the rights of women and children have been strengthened through special conventions.
But what about the human rights of citizens with disabilities? Well, things have finally started to happen.
Two important achievements which emerged from the International Year of Disabled Persons in 1981
strengthened the position of people with disabilities. The first was the adoption of the theme of the year, which was "Full participation and equality". This has ever sincere- mained the internationally recog- nized goal of disability policy. The
School for blind children in Niger. The right to full citizenship and equal participation in society for people with disabilities has finally achieved recognition at the global/eve/.
second achievement was the adop- tion of the World Programme of Action concerning Disabled Persons, which outlined measures and pro- grammes in harmony with the theme.
For the first time the human rights perspective was introduced in the disability field. Since then, a special study has been made of disability and human rights by the Human Rights Commission, and towards the end of the 1980s attempts were made in the UN General Assembly to draw up a convention on the rights of people with disabilities.
For various reasons these at- tempts failed. In 1993, and as a conclusion to theUnited Nations Decade of Disabled Persons ( 1983- 1992), the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities were adopted. The goal of disability policy is still "full par- ticipation and equality", and the method recommended is to identify and remove obstacles to participa- tion. The Rules outline a Code of Conduct for governments and strongly emphasize the right to full citizenship and equal participation.
One very significant step towards the recognition of the special human rights needs of people with disabili- ties was taken when the World Conference on Human Rights, held
in Vienna in 1993, made the follow- ing important statement in its final report: "Special attention needs to be paid to ensuring non-discrimination and the equal enjoyment of all human rights and fundamental free- doms by disabled persons, including their active participation in all as- pects of society." Since then, various commissions and committees in the human rights area have taken up the disability issue in a very promising way. Such actions reveal to a largely ignorant world that it is necessary to protect persons with disabilities from discrimination and to take measures to strengthen their right to participa- tion.
This chain of events, which started in 1981, will eventually lead to stronger and more generally ac- cepted legislation in the disability field. After all, the world belongs to all of us. The human environment as well as all the activities created by humans for humans should be there for all to enjoy. Nobody can doubt that a world which is good for dis- abled people is a better world for all!
•
Mr Bengt Lindqvist is Special Rapporteur of the UN Commission for Social Development on Disability, Box 163 63, 5-103 26 Stockholm, Sweden.
10 World Health • 49th Yeor, No.5, September-October 1996
A plea for the individual
Claude Sureau
As a physician, I am convinced that one of the most
fundamental missions of the medical and health fraternity is to pay attention to the true physical, psychological and social interests of the individual.
P
eople in different professions view the world from different angles. Some demographers deplore rapid population growth in view of limited resources and the consequences for the environment, while others draw attention to the ill effects of a declining birth rate on rural areas. Some philosophers advocate absolute respect for tran- scendental principles, whether they are based on "revealed" or humanis- tic truths; some sociologists recog- nize the equal value of different cultures, whatever repercussions this might have for the life of the individ- ual; some politicians, aware of what is at stake in protecting and improv- ing health, think in economic terms about how best to distribute re- sources. Finally, some lawyers, concerned about the dangers for society of various human propensi- ties, devise legislation based on natural or substantive law to control behaviour considered to be wrong or, more simply, forbidden.All such attitudes are legitimate and necessary. The ways in which they converge or balance or even conflict constitute the basis for social life. This has always been true, but the progress made in receqt years in reproductive medicine has high-
Family planning counselling in Thailand. The ability to space births is one of the safeguards against high maternal mortality.
lighted the divergences between the interests of society and the often less obvious interests of the individual.
At the risk of provoking the charge of medical paternalism, I am con- vinced as a practitioner that one of the most fundamental missions of the medical and health fraternity (besides, of course, the obligation to be competent) is to pay attention to the true physical, psychological and social interests of the individual.
A scandal of our century
One of the great scandals of our century is the persistence of levels of maternal mortality that can fairly be called outrageous. I am not thinking here of demography, but of the indi- vidual suffering involved. I think of the nearly 600 000 women who die each year because of the deficiencies of our societies; I think of the 600 000 families disrupted or even destroyed, and of the orphaned children. This is intolerable, unless of course one considers maternal deaths as a minor detail because only women are involved.
How can it still be possible today, amid all the official declarations about sexual equality, to treat the deaths of these women with indiffer- ence? Philosophical, ethical and judicial arguments, however gratify- ing, tend to overlook the principal fact- the death of an individual, multiplied by so many thousands. As for the causes of this mortality, it is hardly surprising to find, high on the list, poor access to family planning, with its direct result of high fertility, and its indirect result of unsafe abor- tion.
No less to blame are inadequate health care structures, shortages of competent health personnel, and, more recently, the spread of HIV/AIDS, which has particularly dire consequences for women, who are almost always unable to protect themselves, and for families. The plight of children orphaned by AIDS has received too little attention and is becoming a major international problem.
Not only financial but also psy- chological obstacles bedevil the search for solutions to such problems as the social situation of women,
World Health • 49th Year, No.5, September-october 1996
A pregnant woman has her blood pressure checked in Burundi. Proper maternal care ensures safe motherhood.
education, contraception, and the protection of babies at birth. We have to be practical and use what resources there are, not for some grandiose project but to meet specific needs, for example, by building basic maternity clinics and training the staff to run them. In the longer term we can only hope to find better safeguards for maternal and perinatal health, to improve living conditions and to upgrade the social status of women.
Female genital mutilation is another cause for concern. We know that the reasons for this practice are cultural and social rather than reli- gious and that they can be discussed at great length. But from the human point of view, it is an act that hurts and kills, so merely theoretical con- siderations are of little value. We have to unite with the educators and particularly with the women who are themselves concerned to combat this practice, as certain bold countries have succeeded in doing.
"Trivial" problems?
When one looks at these enormous and fundamental problems in the battle against death and suffering, it could be thought that Western soci- eties devote excessive time and money to problems that some people would consider trivial, such as ante- natal diagnosis or medically assisted conception.
Some people declare that it is shocking to tamper with embryos, in other words to carry out research aimed at improving the results of in vitro fertilization when all over the world so many babies are dying or being abandoned. Antenatal diagno- sis and, even more importantly, pre- implant diagnosis, are said to lead to embryonic selection and eugenics.
The progress being made in biotechnology is not without risks.
Frequent disappointments, multiple pregnancies, premature delivery, and other mishaps constitute the price paid for the benefits. Moreover, new dilemmas arise from new solutions to age-old problems: the fate of frozen embryos and the medical interruption of pregnancy have become the sub- ject of much controversy, uncertainty
and sometimes anguish. At the same time, much remains to be done to improve the conditions of child adoption, in particular when it in- volves more than one country.
In the end, what we learn from reproductive medicine-in its broad- est sense ranging from perinatal studies to antenatal diagnosis and medically assisted conception -is the value that it has for the individ- ual. For those directly involved in this activity, the word "ethical" refers mainly to this concern to help the individual, rather than the application of abstract principles, still less the application of laws. Indeed the phrase "bioethicallaw" that is some- times used seems like a contradiction in terms.
II
It is really up to the practitioners and the persons involved to define the best attitude to adopt, and the relationship to be established be- tween moral rules and behavioural norms that are often contradictory.
The existence of such contradictions is natural since the problems very often concern more than one individ- ual-who may well have different interests. Also, it is often more a matter of making existential choices than of solving health problems.
The duty of practitioners is pre- cisely to go beyond the framework of explicit pathologies and to involve themselves in matters that impinge on the psychological and social balance of individuals. This compas- sionate role, which has become so prominent with the upsurge of biotechnology, was summed up by Emmanuel Levinas in the highly significant phrase: "individual good- ness, from human being to human being". •
Dr Claude Sureau is Professor Emeritus at the University of Paris V, and former President of the International Federation of Gynaecology and Obstetrics and of its Committee for the Study of Ethical Aspects of Human
Reproduction. His address is 9 Boulevard du Chateau, 92200 Neuilly-sur-Seine, France.
Childbirth in Belarus. Babies too have a fundamental right to health protection.
12 World Health • 49th Yeor, No. 5, September-october 1996
Information and self·
determ. ination
Kazumasa Hoshino
P
robably only one-third-or certainly less than a half-of cancer patients in Japan are likely to be informed by their physi- cians of their true diagnoses and prognoses. For the remaining pa- tients, the truth is most probably told not directly to them but to someone in their family. This is a long-stand- ing social custom in Japan, and the Japanese people have not found it easy to change the practice even after ethical and legal concepts of in- formed consent and their practical importance in the patient-physician relationship have been introduced.Needless to say, some people in Japan- including bioethicists- have been critical of tbis custom. There seems to be no tradition of autonomous self-determination, either in daily life or in decision- making about health care. Indeed, decisions made by family members often override the patients' own decisions.
Although more than 70 000 people have made living wills as members of the Japanese Society for Death with Dignity, these written statements on medical measures to be terminated or not instituted are not legally protected in Japan. Indeed, no form of advance directives on procedures before or after death has yet been legalized, and laws are still in force which allow the patients' family to disregard advance direc- tives given by the deceased.
The Cornea and Kidney
Transplant Act of 1979 offers a good example. Even though th~ deceased person may have become a member
When physicians in Japan ask patients to make a decision about their health care, the patients often hesitate to resolve any serious matter without consulting their family or close friends .
of an eye bank or a kidney bank and thus have explicitly expressed the wish to donate organs, no action can be taken without the written agree- ment of the surviving family. There is no Jaw in Japan which determines a hierarchy of authority among family members. Therefore, if any member of the surviving family disagrees with this living will of the deceased, no removal of either cornea or kidney is legally permissi- ble.
In general, the Japanese public pays no attention to these matters.
Given the rather rigid social environ- ment, it seems obvious that people do not feel actively motivated to seek legal protection of their rights to autonomy and self-determination.
When physicians ask patients to make a decision about their health care, the patients often hesitate to resolve any serious matter without consulting their family or close friends. Because the family normally looks after any sick member, they are used to taking medical factors as well as their own convenience into con- sideration before the sick person can take his or her own decision.
Family ties are still very strong in Japan, and since the responsibilities
taken by the remaining members of the family are very heavy, it is nec- essary for them to know directly from the physician the whole truth about the patient's medical condition in order to take the decision that seems best to them. Japan is still a collectivist society and has never experienced anything like the move- ment which campaigned in the United States in the 1960s to protect the rights of patients.
As a bioethicist I hope that be- fore too long the Japanese will pay much more attention to individual rights, autonomy, self-determination and the privacy of any sick member of the family, especially as regards decision-making, and also that the wishes, dignity and quality of life of the individual will be more formally recognized and respected. •
Dr Kazumasa Hoshi no is Professor Emeritus at Kyoto University, japan, and President of the )opan Association of Bioethics.
His address is International Bioethics Research Center, Kyoto Women's University,
35 Kita-Hiyoshi-cho, lmakumano, Higashiyama-ku, Kyoto 605, )apon.
World Health • 49th Yeor, No.5, September-october 1996 13
Bioethics in an Asian context
Ren·Zong Qiu
The paradigm of "Western "
bioethics is rooted i n the belief that individual pursuit of self- interest will eventually favour the interest of society at large.
But from an Asian perspective, the self-interest theory is self - defeating in many cases and is even not moral.
T
he bioethical issues that are raised and debated in different sociocultural contexts are not at all the same. Abortion in the United States is not only a moral issue but a political issue that is unavoidable even in the presidential election campaigns; it tends to split families, communities and political parties.But it has never become a moral issue in contemporary China, where the moral issue is late abortion, not abortion itself.
An elderly woman enioys o traditional meal with her daughter. In many Asian countries, medical information is often disclosed to family members rather than to the patient-or is not disclosed at all.
The Chinese believe that a human being or a person starts with his or her birth, not at the instant when the sperm penetrates the ovum. This belief has lasted for more than 2000 years. It may change in the future, but at present there is no sign that the Chinese will give it up.
The concept of brain death has been widely accepted in the
"Western" countries, yet in Japan, one of the most developed countries, people are reluctant to accept it. The same issue may be seen in different ways in different social and cultural contexts. Withholding or withdraw- ing treatment from the terminally ill is usually a matter of appeal to the legal process in the United States, but in China it is usually resolved by
. invoking the convention: if all par-
ties concerned agree, do it. Medical information has to be disclosed to the patient himself or herself in the United States, but in many Asian countries it is usually disclosed to family members of the patient or is never disclosed. Overpopulation is not an issue in the West, but is of concern to almost all Asian coun- tries, since their very social develop- ment is largely dependent on its proper solution.
Seeking a balance
The development of bioethics in Asia has its own characteristics, and some of the most important involve seek- ing a balance between the individual- ist and comrnunitarian approaches, and between rights and duties. The paradigm of bioethics in the West is rooted in an individualist approach which implies that an individual action pursuing self-interest is ratio- nal, and that all such action will converge to favour the interests of
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A work day begins in China. From an Asian perspective, the community approach tends to take precedence over individual rights.
society at large. This approach is justifiable in the sense that individual interests should be protected from inappropriate and unreasonable intervention by society.
However, from an Asian perspec- tive the self-interest theory is self- defeating in many cases and is even not moral. In a meeting on ethical issues of genetics, some Western participants were against any regula- tion on prenatal sex selection for non-medical reasons. However, in the Chinese cultural context some regulation or even prohibition of prenatal sex selection is necessary,
since many parents would prefer to have a boy rather than a girl.
Preferring a boy may seem a rational matter to parents but if such a choice is permitted, the cumulative effect will be an excess of young men in future years, with far-reaching social implications. Why cannot the gov- ernment promulgate some regulation to deter such "sex-cleansing"?
An individual action can be convergent with or divergent from the interests of other people and of society itself. An individual is only relatively independent, and from the viewpoint of many Asian cultures,
A young girl feeds her baby nephew. Chinese wisdom holds that- in an ideal society- everyone has a duty to support other members of both family and community.
World Health • 49th Year, No.5, September October 1996
the individual and the community or society are interdependent. Society is more than the mere sum of all its members. Thus if an individual did some good or some harm to the community or society, that positive or negative effect would in tum affect all its members- including that same individual. So the ideal society for Confucianists is one of
"Great Harmony" in which people bring up other people's children just like their own, and support other people's parents just like their own;
the central principle of Confucian ethics is ren which means "loving and caring for others". For a great many Chinese, an action cannot be justified ethically only by the benefit it would bring to themselves.
Again, in clinical settings in China, a patient's decision is rarely an individual personal decision, but is usually that of a family. Some- times the community too is involved in the decision. So we can say that in any medical decision there are individual, personal elements as well as collective elements (family, community). It does not exclude the extremes: an exclusively individual decision or an exclusively collective decision. There will be no tension if the interests or preferences of the individual and those of the commu- nity are compatible. But in many cases there is tension between indi- vidual and community, and a com- promise between them has to be reached.
Rights and duties
As regards rights and duties, argu- ments based on rights are over- whelming in Western bioethics, and we must admit that the rights ap- proach is positive and helpful in many cases. The recognition of women's rights has really helped women to fight for equal status with men. Traditionally, rights arguments in our region were very rare. In Confucian ethics the dominant arguments concerned duties, obliga- tions and responsibilities, and in this cultural context individual rights were easily ignored or neglected.
World Health • 49th Year, No.5, September-october 1996
However, the rights approach has its own problems, especially in many countries in Asia. First, many rights result in conflicts not only between different persons but also in one and the same person. Secondly, the rights approach is usually not con- cerned about whether the community has sufficient resources to meet the needs of all individuals who exercise their own rights, nor does it ask who has the obligation to provide the necessary means to have these rights exercised. Thirdly, not all claims, needs, wants or wishes are rights.
When a claim of an individual be- comes a right, it possesses a moral power to force others to provide conditions for that individual to exercise the right.
The exercise of rights depends on social, economic and cultural condi- tions. When the per capita income in a country is very low, how can all citizens enjoy, for example, free health care? In some traditional rural areas in China, women's social status is low, they have no employment, no education and all their life are depen- dent on their husband or his family;
how can a woman exercise her repro- ductive rights in such circumstances?
So it would be correct to say that the exercise of human rights evolves
Vietnamese girl at school. Cross-cultural discussions have to be based on mutual respect for each other's culture.
15
Immunization in a refugee camp in Thailand. Social, economic and cultural conditions have a direct bearing on people's access to health care.
over time, and the state must foster this process by creating the appropri- ate social, economic and cultural conditions. And in this process every person who enjoys the rights has the responsibility to participate in creat- ing the conditions for them. Every citizen should both enjoy the fruit and plant the fruit tree. The exercise of a right always implies or is associ- ated with duties or responsibilities. So exercising one's reproductive right implies taking responsibility for raising and caring for one's child.
Cross-cultural debate
It might be said that in each culture there is a moral community with its own moral value system. The value systems of different moral communi- ties or different cultures may overlap to some extent, and may have some of the same values, virtues, rules and principles, but they can never be identical. Any attempt to impose one paradigm of bioethics that has been shaped in one culture on another
culture might be harmful. However, those overlapping areas do form common ground for inter-cultural or cross-cultural discussion and criti- cism. I believe that the common ground will grow, along with a wider and deeper dialogue, against the background of worldwide economic integration and cultural communica- tion. The integrity of each culture should be respected in order for cross-cultural discussion to be justified. •
Dr Ren-zong Oiu is Professor and Director of the Programme in Bioethics, Institute of Philosophy, Chinese Academy of Social Sciences, 5 )ianguomennei Avenue, Beiiing 100732,
China.
16 World Health • 49th Year, No.5, September-October 1996
The meaning of life, suffering and death
Hubert Doucet
V
iews on the task of medicine differ from century to century and from culture to culture.However, it seems that any health care must seek to mitigate suffering in order to help a sick person recover his or her integrity. Hippocrates, in the fourth century BC, said that the object of medicine was to get rid of the patient's suffering and reduce the violence of the disease, but abstain from intervening in cases that were beyond the powers of the art. Francis Bacon (1560-1626), on the other hand, said simply that medicine should reduce suffering and prolong
life as much as possible, and this has come to be the philosophy of today's medicine as well.
Modem medicine has evacuated death from its perspective, in which it exists only as a failure of the physician. Medicine does miracles in order to prolong life, but then leaves us with a major problem: how to manage the end of life, the dying process. For the last 20 years, pallia- tive care and a wide variety of ap- proaches have been tried in order to alleviate suffering and face death with dignity. But these do not solve the basic problem death faces us
We all hope to reach the end of our days with our dignity and integrity intact.
with, which is that we want to control something we no longer know how to relate to.
The cost of prolonging life
In the West, the prevailing assump- tion is that health and life are the most precious good we possess, and that everything must be done to fight illness and death. This helps to ex- plain the evolution of modem medi- cine. But the cost of attempts to save life where there is little or no hope of complete success can be extremely high, and is raising more and more questions. For instance, could our resources not sometimes be used better to meet other needs, such as primary care, family health, or help for underprivileged children? Since 1976 in the United States, there have been 84 court cases seeking the right to have treatment stopped. The public are turning to the law to pro- tect themselves against the power of medicine. Physicians for their part now use the expression "futility of treatment", referring to the many situations in which treatment should be stopped because it is unable to prolong human life with dignity.
Rather than prolonging life, it is prolonging the dying process.
The fact that medicine helps people to live longer explains why Alzheimer disease, for example, which seems to negate exactly what is human about a person, is now so prominently with us. In the case of the elderly, we spare no expense to make the patient survive when dis- ease becomes life-threatening, but then we seem unable to provide the kind of day-to-day care and human environment needed for a reasonably happy life. Since the family is not equipped to meet this need and the
World Health • 49th Year, No.5, September-october 1996
state is not willing to invest in meet- ing it, the elderly are transferred to nursing homes to live out their last years. Such situations often raise the question: do we live longer to be- come sicker and lose more and more of our autonomy?
The cost of illness
Modem medicine has not only trans- formed death and dying, it has trans- formed the nature of illness. In the not very distant past, infections were the cause of most diseases and they seldom lasted for more than two months. If the body could not cure itself within that time the individual died. Today cancer, diabetes, degen- erative diseases of the nervous sys- tem, cardiac diseases, renal diseases and AIDS are common causes of death, and all of them are now chronic.
There are many examples of the problems we have created for our- selves. Severely disabled babies, who a few years ago would not have survived, now survive. Many will live on a respirator, artificially fed, and unable to develop mentally. At the other end of life, an 80 year-old man is demented, has arteriosclero- sis, hypertension and decubitus ulcers, and is artificially fed. In these ways acute care is creating the need for chronic institutional care. Once a technique for prolonging a person's life exists, we do not know if or when we should stop using it. For the individuals and families concerned, these situations are not just ethical dilemmas, they are tragedies. Within health care institutions, major ten- sions arise. On the grounds of respect due to the patient, for example, nurses in North America often op- pose decisions made by physicians.
In Western Europe too, nursing staff are increasingly anxious to find forums in which they can express their views on situations they feel are not being handled properly.
Palliative care
Some argue that palliative care makes it possible for patients to die with dignity. In fact, many specialists ' in palliative care oppose the legaliza- tion of euthanasia on the grounds that we are now able to control pain.
There is a movement in Switzerland and several other countries called Un hOpital sans douleur, which argues that much of the pain that now occurs in hospital is unjustifiable since the means of reducing it exist. However, it is not clear whether suffering, that basic dimension of any illness, is recognized for what it is. Modern medicine usually sees it as a physical matter which can be dealt with by technical means. This ignores the fact that some patients with incurable diseases, even when they receive effective palliative care, feel that they suffer in a way that is unworthy of a human being. Some request euthanasia for this reason, or because they feel too exhausted to go on fighting for life.
Palliative care thus teaches us two lessons. First, suffering is not only physical and psychological; it has spiritual and existential dimensions which are an inseparable part of it.
Patients can be helped in their search for meaning and for ways of corning to terms with what seems unaccept- able, but such help is usually difficult to give because suffering is a private experience that cannot be completely shared. Second, not all suffering can be treated or controlled. To suppose that medicine could deal with it entirely would be to make a major error, for suffering is a profoundly complex human experience in which the individual's whole identity is at stake.
It now seems to be agreed to be ethically acceptable to stop treatment when death is inevitable. There is in fact a consensus in medicine and ethics that some kinds of treatment aimed at relieving pain are accept- able even if they reduce the length of life. But when we have the technical means to prolong life, the real ques- tion is not "Is it acceptable to stop treatment at the end of life?" but "At
what point and how should we stop treatment in order to allow a person to have a good death?"
17
There is probably no standard definition of "a good death"; it inevitably varies among individuals and cultures. One conclusion we may draw from these questions is that the experience of other cultural traditions is needed to help Western medicine recover its sense of the meaning of life, suffering and death.
•
Hubert Doucet is Professor of Ethics ot St Paul University, 223 Main Street, Ottawa KISIC4,Canada.
A premature baby in an incubator. New technologies bring in new possibilities and new ethical issues.
18 World Health • 49th Year, No.5, September-october 1996
Caring for people with AIDS in rural Africa
Thebisa Hamukoma Chaava
Communities ore learning to organize themselves so that they can offer valuable support to people with HIV /AIDS and their families.
Communities and families are sharing responsibility with local hospitals for caring for people with HIV and AIDS in several rural areas of Africa.
Home-based care and community counselling are the keys to both care and prevention.
I
n the rural African setting, a hos- pital is a place where one goes to get better and not to die. When the hospital is not able to effect a cure, the family still has the responsi- bility for caring for their sick rela- tive. In the case of AIDS, while the hospital acknowledges to the patient and the family that there is no cure, it can provide treatment for the recur- rent infections that the person may have from time to time. This is done in a counselling environment.In 1987 a Salvation Army Hos- pital in rural Zambia responded to the challenge of HIV I AIDS by set-
ting up an AIDS care and prevention department, staffed by an integrated team from the nursing, clinical, pas- toral, social work and medical disci- plines. The team helped the hospital to come up with strategies for the care of patients with HIV/AIDS, and the prevention of transmission, in which community involvement was seen as the key to management and control. This was defined as "the community taking responsibility for care and prevention".
It was recognized that, unless families and communities took responsibility for the prevention of HIV infection and AIDS, and the care of patients, the hospital would find it difficult to cope with the predicted numbers of AIDS cases.
Communities and families had to share responsibility to ensure that those infected were not neglected.
Home-based care and community counselling were seen as the appro- priate strategies. To qualify for home-based care, the person must have been diagnosed as HIV-posi- tive, have been counselled and have agreed to be visited at home by a team from the hospital and commu- nity. The day-to-day care of the
patient at home is provided by the family, while the hospital or commu- nity teams give support by regular visits to the home.
Community counselling is a pro- cess that focuses on groups or com- munities. It uses the principles of one-to-one counselling and pro- motes a sense of ownership and responsibility within the community with regard to preventive and cura- tive care. The team of counsellors attends community meetings, and the community itself decides how it can best minimize the spread and impact of AIDS.
Confidentiality
Visiting a patient at home, in a set- ting where everybody soon gets to know why you are visiting, can present problems of privacy. An individual's HIV status is confiden- tial. Home-based care in a rural setting does not overlook this, but
· makes use of the existing value of community life which has come to be known as "shared confidential- ity", as it includes all those who are involved in the care of the affected person. This is the support base for the person at home in the absence of the hospital team.
The inclusion of the family is not arranged without the patient's con- sent. Through counselling the pa- tient decides who will be involved in caring for him or her at home, and this person is informed about the patient's diagnosis and care require- ments. Shared confidentiality is a traditional practice in many cultures and consistent with the family's understanding of its responsibility towards members who are sick.
In one of the suburbs of Johan- nesburg in South Africa we visited a 17-year-old girl who has AIDS. She is being cared for by her mother and
