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Health Policy, Ethics and Human Values - An Islamic Perspective

J .H. Bryant and Z. Bankowski

experiences of common interest;

- by establishing an International Dialogue on Health Policy, Ethics and Human Values as a mechanism for planning and pursuing critical issues in the field, including forming an agenda of important questions, identifying interested participants - persons, institutions and countries - and sponsoring or encouraging conferences or other forms of communication for dealing with the issues.

It needs to be appreciated that inquiry in this field involves much more than recounting traditional values and documenting established religious positions.

It respects those values and positions, and builds on them as essential foundations, but then moves on to the new ground of considering emerging issues of health policy, some of which involve ethical questions that have not been confronted before. It is here that exceedingly interesting and important explorations take place, in which traditional values and positions serve as guides in searching for ways through new dilemmas that confront policymakers, ethicists and health professionals.

One of the special contributions which the International Dialogue is making is the identification of new ideas -ideas that are either appearing for the first time in a given country, as when technology is transferred from a developed to a developing region, or appearing for the first time anywhere, as when entirely new technologies raise questions that were previously only latent, or possibly not even seen.

To appreciate more fully the extent of background developed through the International Dialogue, it is helpful to review those experiences. While there have been a number of contributions, here we shall reflect on two - the first meeting on this subject, which took place in Athens, Greece in 1984, and another, at Noordwijk, Netherlands in 1987. At these two meetings, issues were discussed that span the broad range of concerns from the least developed to the most developed societies.

Athens -The Beginning

The planning of the first in this series of conferences on health policy, ethics and human values began with appreciation of the role of the policymaker. Given a technological advance, whatever the biomedical content and the ethical implications, it is often at the policy level that the societal impact will be determined. Health policymakers usually form their decisions under pressure from a variety of social, economic, political, technological and ethical sources.

The Athens Conference began, therefore, with the policymakers, and explored their interactions with health professionals and ethicists around specific health-policy dilemmas. The question was: could these three parties listen to one another, learn from one another about current problems, and then go on to new concepts and unexplored ground?

The results far exceeded expectations, particularly in terms of how different cultural perspectives sharpened the debate, added new insights, and, in the end, brought better understanding of the differences.

Dr Edmund Pellegrino established the ground on which the Athens Conference would do its work when he defined the major terms of the title:

The health policy of a nation or a community is its strategy for controlling and optimizing the social uses of its medical knowledge;

Human values are the guides and justifications people use for choosing the goals, priorities and means that make up that strategy;

Ethics acts as a bridge between health policy and values. Ethics examines the mora1 validity of the choices that must be made and seeks to resolve conflicts between values, which inevitably occur in making those choices.

He went on to point out three general purposes that motivate health  policies:

First, to attempt to control the social and economic impact of the  unrestrained use of advanced medical technology in treating individual  patients;

Second, to achieve a more equitable distribution of the benefits of medical knowledge;

Third, to use medical knowledge in an anticipatory way for the collective good of present and future generations.

Then, in one of the most perceptive remarks of the Conference, Dr Pellegrino added:

Health policies are rarely derived from explicit and systematic analysis of the moral values that shape them. Much of the art of national and international policy consists in structuring decision making in such a way that value issues are not confronted. The aim is to keep peace between, and within, divergent belief systems. However, once framed, a health policy unerringly reveals the values that drive a society, and these cannot escape examination retrospectively.

Dr Robert Veatch focused his attention on the interactions between health policy and values. Health policymaking is always, and inescapably, an evaluative task. It is not only that value systems inevitably creep in to bias decision-makers, although they do. It is rather that policymaking logically requires a system of values. In large part these values are determined by culture.

• He pointed out that value systems play at least four different roles:

• First, value systems provide a framework for choosing among policy alternatives. It requires taking different feasible options and deciding which among them is the most valued pursuit, according to the ethical and other values of the group;

• Second, value systems provide the framework for choosing who the policymakers will be. To choose the decision-maker is to choose the value system upon which decisions will be made;

• Third, value systems are critical even in providing the medical and other facts upon which health policy decisions must be based. The cultural system of beliefs is critical for deciding which facts will be taken into account and how they will be used for purposes of policymaking;

• Fourth, value systems are critical in determining what the possibilities are for intercultural cooperation in health.

The Conference then, led by Dr Pellegrino's observations about the nature of health policymaking, and by Dr Veatch's insights into the place of values in policymaking, proceeded to examine some specific policy dilemmas.

The Conference had been planned, by agenda and membership, so as to explore how cultural and value differences interact with policymaking and related ethical thinking. 150 participants from more than 50 countries, representing a dozen cultural and religious groupings, brought a rich mixture of ideas, experiences and value systems.

It became apparent that different countries make different policy choices, but also that they see different questions as important according to their economic resources, patterns of disease, cultural traditions, and ethical and other value commitments. Here are a few examples of such differences.

The importance given to human life in a philosophical or religious sense is strikingly similar in many cultures, but the ways in which human lives are seen, counted and cared for in real life vary greatly. Human life is seen as of divine origin in the major religions, and even as having infinite value, but in villages and cities at the social periphery the question is asked: This infant who died of diarrhoea this morning -was it a person yet?

Care of the vulnerable and handicapped brings forward a number of conflicts between values given to life and the practical difficulties of day-to-day care. Ethics aside, much seems to rest on the willingness of a society to protect the vulnerable and absorb the handicapped, whether the handicap is that of having a cruel deformity, of being elderly and helpless, or of being born female.

Quality-of-life issues inevitably surface in relation. to questions of resource allocation and treatment. What kind of life is worth preserving and who should decide that a life should be prolonged? In some countries, these questions are examined with great care, and much is to be learned from the ways in which thequestions are framed and answered.

In developing countries, such questions often appear to be crushed under timmense burden of human need and the difficulties, even impossibilities, of dealing with them. The subtleties that attract attention in the developed countries may not even be noticed.

Let us use an example from the sub-continent of Asia. The question of who should decide whether or not a woman is to have a caesarian section for obstructed labor is influenced by family values, where the husband and mother-in-Iaw (his mother) often control decisions, but this question may not have a chance to be asked because of the impossibility of getting the woman to a place where her life might be saved - the desert is too wide, the ox-cart too slow.

Here, the most meaningful questions are stripped of any ethical subtlety; they are plain policy questions: when will life-saving health services reach these people?

Perhaps at no time during the Athens Conference were the differences among the values of its participants more apparent than when the discussion focused on the meanings given to life, suffering and death. Let us simply call attention to two statements that will give you indications of the range of the differences.

Dr Avraham Steinberg reflecting on the religious values of Judaism about life, suffering and death said: Since the value of life is infinite and beyond measure, it follows that any part of life is of the same worth. One life is worth as much as a thousand lives - infinity is not increased by multiplying it. Man is obliged not only to sustain life by all means, but also to cherish it and preserve it in good health.

Dr Pinit Ratanakul provided a Buddhist perspective: Death is not a one-time event; it occurs every moment of life. Birth and death are always present in juxtaposition to each other. Through an understanding of death we gain an understanding of life, and through finding the meaning of life we define the meaning of death. Life and death  are two inseparable aspects of one entity. Life is like a dream - brief and fleeting.

With respect to the state of inquiry into bioethical issues in the Third World, it is probably fair to say that it is relatively early in its development, at least in terms of the questions and approaches being used in the North. There is a paradox here, since the culture and values of the South and East are as old as history itself. But there is an interest and a readiness to pick up the inquiry.

This line of thinking led to an important outcome of the Athens Conference, which was that the participants urged CIOMS to take the lead in facilitating an expanded dialogue around these issues, so that other countries and other parties might contribute to and benefit from such explorations. CIOMS responded by establishing a new programme, called An International Dialogue on Health Policy, Ethics and Human Values. The CIOMS Office in Geneva serves as its focal point and ensures that the concerns of WHO are kept in the forefront. The International Dialogue has the following purposes:

• to strengthen national capacities for addressing and making decisions about the ethical and human values issues involved in health policy;

• to contribute to improved understanding of WHO's goal of health for all, particularly its values content;

• to develop transcultural and transdisciplinary approaches to working in this field;

• to use these approaches as a way to pursue deeper understanding of human values across cultural and political lines

A Steering Committee has been established and has been formulating guidelines for further discussions. The Steering Committee welcomes this Seminar in Cairo and the contributions it can make to the International Dialogue.

Noordwijk -Further Steps

The agenda of the Noordwijk Conference, which took place in 1987, was built around some of the most vexing health-policy issues of our time. That it was designed to consider European and North American perspectives did not lessen its relevance for the rest of the world, including Third World countries.

Indeed, it became clear that some of the policy questions being asked today in the North, such as new ethical questions raised by technological advances, will be faced tomorrow in the South. But we shall also see policy decisions lately forced upon the North, such as the retreat from universal access to services for the elderly, caused by rising costs and economic stringency, which the South has already faced.

A Philosopher Focuses on the Interactions of
Ethics and Policymaking

The stage was set for the deliberations at Noordwijk by Dr Gorovitz, who provided a perfect illustration of the ethicist acting in relation to the policymaker. He outlined eight policy problems, each with important ethical content, which together showed the range of difficulties encountered, at least in the United States of America, in trying to generalize about interactions of policies and ethics.

Let us recall some of them:

The problem of setting policies relating to abortion. There has not been a stable policy in the United States in relation to abortion. A bitter and divisive debate has ensued, and part of the population has actively opposed the policy. Here is an example of necessary policy failure, not because the policy is necessarily wrong, but rather because any other policy on abortion would also fail. There is no common ground in the nation for a stable, incontrovertible policy.

A policy prohibiting the sale of kidneys for transplantation. In the early 1980s, reasons were put forward to defend the sale of kidneys in relation to renal transplantation. Opposition to this was strong and consistent. The 1984 Organ Transplantation Act made it a federal offence to engage in commercial marketing of kidneys or other human organs for the purposes of transplantation. Here is an example of  a stable, widely supported and incontrovertible policy

Other illustrations could be drawn from the presentation of Dr Gorovitz, but these indicate how he previewed many of the issues that were to be discussed during the Conference, and focused our attention on the need to keep before us both the ethical content and the policymaking problems of these dilemmatic issues.

Screening and Counselling -A Paradigm

Of the considerable discussion about genetic screening and counselling, that on the ownership of genetic information provides insights into the possibilities and dilemmas of this field. Drs de Wachter and Niermeijer presented a series of concepts illustrating new developments in this arena.

Who owns genetic information? The traditional moral viewpoint has been that professional secrecy is in both the patient's and the doctor's interests. Today, however, must we not be concerned with the availability of genetic information to the relatives of the patient? If the health and well-being of the relatives are at issue, does the obligation to keep a secret then turn into an obligation to tell?

Other arguments in support of the communication of genetic information also challenge the traditional notions of privacy and bodily integrity. In the past, It seemed as though the individual "owned" all such information. Genetic medicine is clearly exploding such a view into a wider concept of corporate ownership, i.e., extending to the family, even to others with legitimate interests. It now seems that the totality of one's physical existence exceeds the limits of one's body -genetic information should coincide with one's genetic extension, and consequently the traditional right to secrecy may turn into a duty to share information. Contrariwise, the previous non-existent right to know about others that which might affect me could very well turn into a new right to know.

There is also a right not to know. There are several reasons for wanting not to know. One reason has to do with the accuracy of genetic tests: false positives would give inaccurate predictions. A second reason is that some people are unable to cope with the burden of knowledge. Third, information obtained from predictive tescan be misused. Never-theless, the probable increase in predictive testing raises the issue of whether the right to receive information also contains a duty to reinformation about the future prospect of one's own life, since what one does with one's own life inevitably affects the lives of others. This notion raises provocative questions in relation to, say, those who might carry the Huntington gene: Is there a right to know? Is there a right not to know? Is there a duty to know?

A fundamental principle of patient autonomy would seem to be that it is the basic right of the person to be tested or not to be tested, and to choose to be informed fully or only in part. Here, then, is an area of interaction between developments in biomedical science, ethics and health policymaking that needs further elaboration -the fundamental principle of the ownership of genetic information.

Transplant Policies:
European and North American Perspectives

Among the many possibilities of transplantations of organs and tissues, the Conference chose to deal with those relating to kidney, heart and liver. Improvements in the survival prospects for patients with these transplants, due to major advances in surgical and immunosuppressive technologies, have transformed the policy and related ethical issues in this field. Renal transplantation has better survival expectations than renal dialysis, and one-year patient survival rates for heart transplantation exceed 80% and for liver 60%. Drs van der Werff and Vildardell provided carefully developed background material for this discussion.

The combination of the life-saving power of these technologies together, with problems of cost and organ scarcity create a dramatic policymaking environment, including the most fundamental of ethical questions. And looking ahead to the turn of the century, increases in technology and changing resource constraints provide strong indications that the future cannot be ignored in considering these dilemmatic issues.

In considering transplant policies, a number of determinants must be kept in view:

Ethical values. Policy development in organ transplantation should largely be directed towards saving lives and improving the quality of life. The Hastings Center (USA) report on this subject recommended that policies should not only contribute to an increase in the number of cadaver organs obtained for transplant, but also acknowledge and advance the moral values and concerns of our society regarding individual autonomy and privacy, the importance of the family, the dignity of the body, and the value of social practices that enhance and strengthen altruism and our sense of community.

Religious traditions. While the Christian tradition no longer occupies an official regulative position in Western life and culture, it does remain highly influential. The Christian and Jewish emphasis of the "embodied self", rather than a sharp dualism of "spirit" and "body", involves a respect for bodies both before and after death that sometimes leads to opposition to organ transplantation. Nonetheless, Judaism and Christianity generally support organ transplantation. As was noted at the Conference, in matters so fundamental as the donation of human organs, giving and receiving are better than routine taking and getting, and certainly are to be preferred to buying and selling.

Policies to increase the supply of organs. Several policy options exist for increasing the supply of organs, each with strong ethical implications, including: informed consent, required consent, presumed consent, sale of organs, tax credits, organization of organ procurement.

Equity in organ transplantation. Organs for transplantation will be scarce for the foreseeable future, and it is therefore essential that criteria and procedures for patient selection be publicly stated and
publicly defended.

Selection criteria should not be based on morally irrelevant characteristics, such as sex or race. There is general agreement in Europe and North America to use broad medical criteria to establish waiting lists, and then to use narrower medical Criteria to determine who should actually receive the organ that becomes available.

Access and ability to pay have obvious importance in terms of both ethical and practical considerations. Given the high costs, yet undeniable life-saving qualities, of organ transplantation, dilemmas arise that have no easy resolution. In view of more general policies of cost containment in the health sector, it is not surprising that transplant programmes are caught up in these economizing efforts. There is consensus in some countries that governments should not restrict organ transplantation on the basis of such cost-containment policies; at the same time, there is agreement that transplants for saving lives of a few should not be performed at the expense of providing other forms of health care for many others who need it.

Legislation in relation to transplantation. There is considerable variation in legislation governing transplantation, some of which is current and progressive, and some out of date. Some countries have no laws on the matter. There needs to be a progressive approach to legislation in this field, and, where possible, a harmonization of legislation, dealing with such issues as: living donors, determination of time of death, cadaver organ donations, commercial trade in organs, organization or procurement, equity in organ transplantation, certification of transplantation centres.

The Third World will be able to proceed only slowly in this field. While the surgical and immunosuppressive technologies are not insurmountable, the problems of organ procurement are substantial (they will rely on live donors for some time), and, as with other forms of high technology medicine, the problems of access and equity in the availability of services will continue to be very large in the poorer nations.

Health Care of the Elderly:
A New Frontier of Policy and Ethical Questions

The elderly represent a different set of issues from those of screening and transplantation. With both screening and transplantation, the ethical and policy issues rise largely from a technological base and from the problems of sorting out the applications of the technology. With the elderly, the Issues have much more to do with the nature of the elderly as a population group. How distinct are they as a subset of society? What are their entitlements? What social and economic burdens do they represent for society? What are reasonable expectations in terms of the length and quality of life? Daniel Callahan and Sir Douglas Black led the Conference in addressing the complex problems of the elderly.

 The ethical problems of resource allocation for health care of the elderly will be as difficult as any we face in the health sector. Given the rising demographic profile of the elderly in the population and the increasingly effective and expensive technologies that will be applicable to them, we are at the edge of a new and endless frontier of ethical inquiry.

Daniel Callahan's summary towards the end of the Conference capped the consideration of the elderly in a far-ranging way. He divided the major issues into three groups: conceptual problems, moral dilemmas, and moral reforms.

The conceptual problems -with important moral and value implications.

Can one generalize about the elderly? Is it Possible to generalize about the elderly while at the same time taking into account individual differences? Or could that very effort itself be harmful to individuality and variety among the elderly? How does one avoid stereotyping the elderly? How does one avoid classifications that may be demeaning?

How do we want to define the old and the aged? Who are they? There are shifting ideas and policies on what constitutes retirement age. Distinctions are sometimes made between the young-old, the old-old, the frail-old, and the very old. Such classifications have a bearing on not only the way society understands the old but also the self -understanding of the old - the old will understand themselves in great part in terms of the way society understands them.

What are the minimal levels of health care ? First, what levels of health care are minimally necessary for all age groups, and then what for the elderly? This raisthe further question: What is relationship between health and aging? How do we relate health needs to our understanding and classification of the elderly?

Is aging a normal process? Of course it is a normal process, but
given the possibility of biomedical intervention it is possible to consider that aging has the characteristics of disease. Whether it is defined as normal or not could determine one's perspective as to whether aging ought to be fought or accepted.

Can we define quality of life for the elderly ? What would be the constituents of such a definition? How will need relate to quality of life? We can talk about medical need, or social need, but the effort to define need or quality introduces scientific and technical definitions that tend to be value-laden.

How are we to understand the nature of the life cycle? At times we tend to use adulthood as the paradigm, and we see children as those who have not reached adulthood and the elderly as those who have passed adulthood. Should we understand the life-cycle in a richer way, not using one particular stage as the paradigm but rather recognizing that each stage has its particular problems and benefits, opportunities and possibilities?

The moral dilemmas -those issues where important values are pitted against each other, but it is unclear which is the appropriate choice.

Is there need for a theory of limits pertaining to health care for
the elderly? Is it appropriate to talk about limits for the elderly as distinguished from limits of health care for other groups? Does not singling out the elderly for discussion of limits raise problematic questions about the way we understand and classify the elderly.

Is it possible to define a proper balance of resources among and between generations? What is the right way to apportion resources between the young and the old?

How are we to find a proper balance between home care and institutional care for the elderly? This raises another question: the distribution of obligations. How are we to balance family obligations to take care of the elderly against governmental obligations?

Euthanasia, a general moral dilemma. While euthanasia is a moral dilemma very broadly for society, does it represent a special moral dilemma in the care of the aged and the way society values its elderly?

Moral reforms that are necessary -these do not appear to divide people or create agonizing choices, but nonetheless are important moral concerns.

Participation of the elderly in determining their own fate and we/fare. They ought to be particularly represented in policy decisionmaking, and there should be advocacy groups for the aging.

Better care is needed for older women. Older women receive poor care, particularly in poor communities. This represents a distinct and unfair situation where strenuous corrective efforts should be undertaken.

The need for new social roles for the elderly. There is great uncertainty in all our societies as to just what the elderly are supposed to be and to do. How might we redefine or clarify the present roles of the elderly?

The need to strengthen the family. If the family is to be the major source of care for the elderly, then the welfare and strength of the family are critical. In those countries where the extended family is still in place all the more attention should go to preserving its protective and supportive role for the elderly.

Here is a field of biomedical and sociomedical science that is much earlier in its development and maturation than those involving screening and transplantation. The medical, ethical and policy issues are just being discerned, and many of the key issues are not technologically based but are, rather, linked directly with delivery systems, societal perceptions, and value systems that shape those perceptions.

Paradoxically, while the elderly and their needs for health services have been with us all along, there are entirely new issues precipitated by demographic shifts, technological advances and related escalations of costs. These new issues create a fresh context in which the most fundamental ideas, terms and values must be re-examined.

The implications for the Third World are clear. There is no reason not to expect that the demographic patterns of the elderly of the Third World will evolve in the same direction as in the West, and that many of the ethical and moral concepts, dilemmas and reforms will be similar. The critical challenge to the Third World will be to address those issues in terms that are consistent with their own societal needs and values.

Further Reflections at Noordwijk

In further discussions at Noordwijk the following comments were added:

Our traditional values do not suffice, even when they are clear, to answer many of the problems we face in health policy. You cannot look up organ donation in the index of the Bible, The Koran does not speak about the limits of genetic therapy. The works of Plato and Aristotle are silent on the use of life-extending therapy for the very ill and the very old.
- S. Gorovitz, U.S.A.

There should be continuous dialogue between policymakers , and other parties, such as researchers, scientific workers in the ethical field, professionals in the health care field, and organizations of patients. All these parties must be involved by government in a more systematic way than is the case at the moment.
- E.W.Roscam-Abbing, Netherlands

It would be unrealistic for the developing world to talk about health policies, ethics and human values without reference to primary health care.
- B.O. Osuntokun, Nigeria

There is a clear need to recognize the inherent limits of resources to become skilled at the application of criteria to the setting of priorities, to ensure that the most serious of human needs are met, and to promote social justice, In the health sector, we must become familiar with the economics of scarcity, and since scarcity is relative it becomes a common ground for all countries -rich and poor.
- J.H. Bryant, Pakistan.

The Cairo Seminar

The Seminar in Cairo, entitled "Health Policy, Ethics and Human Values An Islamic Perspective", offered a special opportunity to add importantly to the earlier exchanges in this field through a sharing of the richness of the ideas, cultural values, traditions and experience of Islam.

The succeeding chapters of these Reflections provide an indication of the issues that were discussed and the atmosphere that pervaded the discussions.