on Ethics
Contemporary Medical Scandals:
A Challenge to Ethical
Codes
and Ethical Principles
D. GARETH JONES
Department of Anatomy
University of Otago P.O. Box 913
Dunedin, New Zealand
From Perspectives on Science and Christian Faith 42
(March1990): 2 - 14.
© 1990 Americian Scientific Affiliation
Two recent medical scandals in Australasia are used to highlight what may happen when important fundamental ethical principles, such as informed consent, peer review, and patient autonomy, are overlooked. Ethical codes formulated to guide the medical profession are assessed, and are found to be less useful than frequently assumed, on account of the increasing sophistication of modern medicine and of changing patterns within society. In exploring ethical principles of value, both absolute and consequentialist principles are seen to make a contribution to ethical decision-making. The first-order principles of significance are justice and love, with important second-order principles including doing good and not harm, respecting the autonomy of people, and telling the truth. A Christian contribution to bioethics lies principally in its imparting meaning to human life, in the limitation it places on scientific technique, and in the control it advocates over biomedical technology.
Recent Medical Scandals
I should like to commence with two examples of recent scandals in medical circles. These are by no means unique, and it would not have been difficult to have chosen various other illustrations.1 The two I have chosen are of particular interest to me, since they both occurred in Australasia, although their relevance is not limited to any particular part of the world. Both caused a considerable stir within the medical profession and a furore within society. The Australian example I shall use is the Chelmsford "Deep Sleep" Therapy affair in New South Wales,2 and the New Zealand example is the Cervical Cancer Inquiry at National Women's Hospital in Auckland.3
1. Chelmsford "Deep Sleep" Therapy
Chelmsford was a private psychiatric hospital in Pennant Hills, New South Wales (NSW). Over the period 1962-1979, a form of "deep-sleep" treatment was employed. This treatment consisted of continuous barbiturate-induced comas for up to four weeks at a time. Deep sleep therapy was administered for everything from pre-menstrual tension to obesity, including depression, tension, schizophrenia, and drug addiction. It is not, strictly speaking, a therapy, since it induces a deep coma following the administration of very high doses of barbiturates. As a result there is a loss of bowel control, and an inability to remove secretions from the bronchi and lungs. During this treatment, electroconvulsive therapy (ECT) was administered, sometimes in repeated doses.
Over this 17-year period 26 people died. These deaths were due to a number of causes, of which pneumonia was a principal one. Other causes included heart attacks and strokes. Fifteen other patients committed suicide following the treatment. Additional consequences of the treatment included: loss of weight, paralysis, respiratory and bowel problems, loss of self-confidence, personality changes, drug dependence, and alcohol problems. Not surprisingly, many lives were subsequently shattered.
Patients were referred to the hospital by general practitioners and solicitors. No consent was sought for much of the treatment undertaken, and ECT was not mentioned to patients. Some were actually told there would be no ECT. No visitors were allowed. The doctor in charge of the hospital committed suicide himself on 8 September 1985. At the time of his death his medical record was clear, since no disciplinary action had been brought against him.
In 1970, the NSW Department of Health was tipped off about deep sleep therapy, as a result of an anonymous letter sent to the Department. It subsequently transpired that this had been written by a nurse who had worked at Chelmsford. However, the Department decided against investigating the hospital or the clinical appropriateness of the treatment, since it was the subject of a police investigation at the time. The result was that this form of treatment was allowed to continue.
In 1973, an individual by the name of Mr. Barry Hart entered Chelmsford to look around. According to his account, he was given a glass of water and a tablet, after which he was in a coma for 14 days. When he woke he was confused, hallucinating, in pain, and very angry. He also had pleurisy, a deep vein thrombosis, and a pulmonary embolism. He was transferred to nearby Hornsby Hospital, where he recovered over a two-week period. As a result of this succession of events, he became a crusader against one of the doctors administering the treatment. Prior to his admission to Chelmsford, he had quite specifically refused to consent to ECT, but it was nevertheless administered during his barbiturate-induced coma. At the end of 1973 he started court proceedings, but for a number of years failed to get anyone to take his story seriously. Finally he succeeded, and his case reached court in 1980. This resulted in his being awarded $60,000 (Aust.) in damages.
Five years after Mr. Hart's episode in the hospital, the then NSW Attorney-General started a campaign against Chelmsford. He failed. So, too, did campaigns started by the Citizens Committee on Human Rights (Church of Scientology), and a local branch of the Australian Labor Party. In the same year, 1978, the then Minister of Health in NSW directed the NSW Health Commission to drop all investigations into Chelmsford Hospital, on the grounds that the police were also making enquiries. Although two inspections of the hospital were actually carried out, in 1978 and 1979, there was no investigation into the clinical appropriateness of the treatment.
In 1979 the treatment was discontinued, mainly because doctors refused to send patients there. It had nothing to do with official action of any kind. The instigator of the change was a psychiatrist, who visited Chelmsford towards the end of 1978, since he had heard of the condition of patients reaching Hornsby Hospital from Chelmsford. He began to withdraw patients; as did other doctors.
Of various further developments in the 1980s, I shall highlight just one set of responses to the affair, as reported by the Sydney Morning Herald. Sir Martin Roth, former Professor of Psychiatry at Cambridge University in England, wrote on 6 January 1981: "The inhumanity and cruelty to which patients appear to have been subjected is quite unique in my experience, and the Scientologists and other organizations will have obtained ammunition for years or decades to come. There is therefore a pressing need for maintaining strict confidentiality at this stage, until one can set these barbarities in the context of contemporary practice in psychiatry." This was written in a letter received by a medical practitioner, Dr. John Sydney Smith, after the latter had attempted to generate support to achieve a substantive inquiry into Chelmsford. Sir Martin advised Dr. Smith not to write an open letter to the Royal College of Psychiatrists in Britain, but instead to send a private letter to its president.
Smith wrote to the Royal Australian and New Zealand College of Psychiatrists on 10 October 1980. On receiving no reply, he re-sent the letter. He eventually did receive a reply from its president on 16 July 1981. In this he was informed that no action could be taken until he sent $10 (Aust.): "I am unable to refer to the committee the complaint from Dr J Sydney Smith, as it has not been lodged in the manner prescribed by the Act, i.e. with a deposit of Aust $10." The College never lodged the complaint.
One of the major issues raised by this series of events, therefore, is why the medical profession and government failed to bring these appalling happenings to a halt. In the end it was left to journalists, with a series of articles in the Sydney Morning Herald, to bring the details into the open and to precipitate a major inquiry into these disastrous past events.
2. Cervical Cancer Inquiry
From August 1987 to August 1988 a judicial inquiry took place in New Zealand into the treatment of carcinoma in situ (CIS) of the cervix at the National Women's Hospital in Auckland. The inquiry was set up after a magazine article, entitled "An `Unfortunate Experiment' at National Women's," alleged that an experimental research program had been undertaken at the hospital involving the study of the natural history of CIS of the cervix by withholding conventional treatment from some patients. The authors of the article further alleged that an internal inquiry, set up after criticisms of the program by two hospital doctors, had been a "white-wash" and that there was no evidence that the research and the withholding of conventional treatment had ever formally ceased.4
These allegations resulted in the setting up of a Committee of Inquiry led by Judge Silvia Cartwright. At the public hearing, further claims were made, including allegations that vaginal smears had been taken from more than 2,000 new-born babies, as part of the same research, apparently without the knowledge or consent of their mothers; that a randomized controlled trial of treatment for invasive cervical cancer had been undertaken without the consent of patients; that groups of students had carried out vaginal examinations of anesthetised women without their consent; and that postgraduate students had inserted and removed IUDs on anesthetised women prior to hysterectomy, again without their consent.
The investigations leading to the magazine article were made by two feminists; a journalist (Sandra Coney), and an academic in the area of women's studies (Phillida Bunkle). The starting point for their investigation was a 1984 paper recording the apparent outcome of the study.5 Two of the authors, W.A. McIndoe and M.R. McLean, were the doctors who had criticized the program as early as 1973. In this paper, the authors reported on 948 patients with CIS of the cervix diagnosed histologically between 1955 and 1976 and followed for 5 to 28 years. One group of patients continued to produce abnormal cytology consistent with cervical neoplasia after initial diagnosis or treatment. Among this group of 131 women, 22% subsequently developed invasive cancer of the cervix or vaginal vault. Among the other 817 women who had normal cytology on follow up, 1.5% developed invasive cancer.
Coney and Bunkle alleged in their article that these results were part of a study initiated by Associate Professor Herbert Green in the mid-1960s which involved following women with abnormal cytology after a diagnosis of CIS. Some women were diagnosed by colposcopically directed punch-biopsy and were then offered no further treatment. Other women, who had abnormal smears after cone-biopsy or hysterectomy, were also alleged to have received no further treatment. Coney and Bunkle claimed that there was no intention of curing these patients. The story of one woman, "Ruth," received particular prominence. After a histological diagnosis of CIS in 1964, up until her discharge in 1979, "Ruth" visited National Women's Hospital 34 times, having 28 cervical smears, 5 biopsies, 4 operations under general anesthetic, and 10 colposcopic examinations. In 1985 she returned to National Women's Hospital with invasive cervical cancer.
Coney and Bunkle also described efforts by McIndoe and McLean to have this method of management reconsidered, leading to an internal hospital inquiry. They alleged that the report of that inquiry was termed a "whitewash" by the then Hospital Superintendent. They also claimed that no one could give them an assurance that the experiment had ever ended. They quoted Professor Dennis Bonham, the Professor of Obstetrics and Gynaecology, Head of the Postgraduate School, and Chairman of the Hospital Ethics Committee, as saying that the study "merged into general treatment." They also suggested that the views held at National Women's Hospital had resulted in an antipathy to cervical screening throughout New Zealand.6
The inquiry was set up by the Minister of Health at the request of the Auckland Hospital Board and in response to public concern about the allegations made in the magazine article. Judge Cartwright found that a research program into the natural history of CIS of the genital tract had been approved in 1966, and that it had resulted in the failure to adequately treat a number of women with CIS. For a minority of women their management resulted in persisting disease, the development of invasive cancer, and in some cases (probably 24), death. She found that additional reasons for inadequate treatment were the failure to stop the trial as soon as cogent evidence of risk began to emerge, and the failure of some colleagues and administrators to impinge on clinical freedom and act decisively in the interests of patient safety.
She further found that the research program had included the studies of vaginal cytology in the newborn and of the histology of fetal cervices, and that the great majority of patients did not know they were participants in the 1966 trial. She concluded that the National Women's Hospital ethical committee procedures were inadequate and lacked impartiality. In view of this, the judge recommended that the ethical committee be disbanded.
The recommendations to improve the protection of patients involved in research or treatment included the appointment of a patient advocate at National Women's Hospital, the only duty of this advocate being to protect patients, and to ensure that they received full information and the opportunity to consent to all procedures in which they might be involved. Judge Cartwright also recommended the appointment of a Health Commissioner under the Human Rights Commission Act, to negotiate and mediate in complaints and grievances by patients, and to heighten the understanding of patients' rights on the part of health professionals. Yet another recommendation was the implementation of an organized screening program for the whole country.7
The inquiry raised a plethora of basic ethical issues, including the centrality within clinical medicine of informed consent, peer review, patient rights, patient autonomy, and doctor-patient relationships. It also questioned the notion of clinical freedom, and brought into focus the distinction between clinical practice, clinical trials, and clinical research. In doing this, it touched on the importance of an understanding of the nature of hypotheses, therapeutic and non-therapeutic research, and research protocols. Underlying specific topics such as these is the question of the place of medical ethics in the medical curriculum, and of the close interrelationship of ethics, science, and medical practice.8
Before leaving this case, it may be useful to enquire why the authorities acted in the way they did. Some hints are available in the literature. Green's original 1966 proposal set out to prove that CIS is not a pre-malignant disease. In subsequent years he went further than this by stating that it is a normal condition for most women, and that it is probably present from birth. These postulates appear to have become deeply ingrained personal beliefs, so much so that Judge Cartwright concluded that an analysis of Green's papers points to misinterpretation or misunderstanding of some data on his part, and on occasions, manipulation of his own data.3
When his stance on these matters was challenged in the early 1970s by more junior medical staff, Green's seniority and forceful personality ensured that no action ensued. Any viewpoint contrary to his own (that CIS was a benign lesion which did not progress to invasive cancer) was ignored. Judge Cartwright concluded that he was a person with strong views, impatient with criticism, and with total confidence in his own judgement. He refused to debate questions on the management of patients directly with the pathologist and colposcopist involved in the diagnosis, and he showed lack of patience with any system that implied accountability amongst colleagues.
Criticism by his peers and medical superintendents was muted. This stemmed from their perception that the responsibility for Green's patients lay entirely with him and not them. These views, in turn, were based on the premise of clinical freedom, which prevented them from interfering with the way in which a medical colleague managed his/her patients. This appears to have had the effect of throwing a veil of secrecy around the management of patients, and perhaps of leading to disinterest in it as well. One of the hospital superintendents resorted to the concept of the individual doctor's conscience, when he referred to doctors as: "people of standing, of integrity, who are loyal to themselves and to their own consciences....When you take up medicine, you have it in your heart that you will do the best for the individual patients. Surely that's enough isn't it?"3
Attitudes such as these ran through the hospital's ethics committee. The result was that it had no clear concept of its role, and that it failed to settle its own guidelines for its work and for proposals put to it for approval. Judge Cartwright concluded that it had demonstrated no sense of responsibility to the public in providing accurate information when sought. It also lacked independence and impartiality.
Ethical Codes
These two illustrations of unethical scandals are not typical of medical practice. Nevertheless, they do serve as an introduction to the very complex area of medical ethical principles. What went wrong in these two instances? Could the tragedies have been averted? In both cases I believe they could have been. If the leading participants in these medical dramas had abided by certain fundamental principles, the subsequent courses of treatment for a large number of patients would have been quite different. Before I consider these principles, however, it is useful to look briefly at the ethical codes that guide the conduct of the medical profession.
One has to start with the Hippocratic Oath, which stems from the 5th century B.C. In terms of this code it was the Hippocratic physician's responsibility to the individual patient that was paramount. In other words, this was a commitment to patient-centred ethics, in which the physician was enjoined to act for the benefit of the individual patient and, under no circumstances, to do the patient any harm. Commendable as this is, it marked the beginning of the benign paternalism that, until recently, characterized much of Western medicine. This was because at the time of Hippocrates, all decisions were made by doctors while patients were kept in ignorance. Quite apart from this consideration, it is also noteworthy that the code provides no guidance on how to define benefit and harm, let alone how to assess them.
A modern restatement of the Hippocratic Oath is provided by the Declaration of Geneva (1948; latest version 1983). As such, it stresses the doctor's responsibilities to his/her patients and colleagues. It also emphasizes the place of respect for human life from its beginning, although neither the implications of respect nor the timing of the beginning of human life are worked out. Neither does this Declaration deal with the best interests of all patients. It is, therefore, silent on doctors' obligations to society.
The Declaration of Helsinki (1964; latest version 1975) deals with biomedical research, and makes the fundamental distinction between therapeutic and non-therapeutic research. This is the difference between medical research in which the aim is essentially diagnostic or therapeutic for the patient, and medical research the object of which is purely scientific without any direct diagnostic or therapeutic value to the person subjected to the research. The much narrower compass of this code is its great advantage. The principles set forth in it are of considerable importance, and are of major assistance in determining the nature of research protocols. It is noteworthy that the Helsinki Declaration was first promulgated in 1964, in response to various earlier medical scandals in which consent for research procedures was not obtained.
The Declaration of Oslo (1970) is devoted to a consideration of therapeutic abortion. Due to the diversity of attitudes on abortion and on the status of the fetus within most societies, the Declaration allows for this diversity, while ensuring the protection of patients, high standards of medical care, and the conscientious refusal of some doctors to perform abortions. This highlights the dangers of quoting either the Hippocratic Oath or the Declaration of Geneva as evidence of opposition to abortion, but remaining silent on the Declaration of Oslo which is more recent and is also far more liberal in its stance.
Other major recent declarations of the World Medical Association include the Declaration of Sydney (1968) on the definition of death, and the Declaration of Tokyo (1975) on torture and degrading treatment. In addition, there have been various codes adopted by different countries, and a variety of resolutions adopted by the World Medical Association.
There is little doubt that these various declarations and codes are useful. However, they are not as useful as one might think at first glance. This is mainly because they have been outstripped both by developments in medicine and by developments in society.9
Of these two developments, the first concerns the increasing sophistication of modern medicine. Decisions now have to be made in areas where, even a few years ago, no decisions were required. This in itself introduces quite new ethical dilemmas, such as the legitimacy or otherwise of various forms of artificial reproduction, whether or not to turn off a life-support system, the extent of treatment to be undertaken on a severely deformed infant or on an adult in a persistent vegetative state, and the use that should or should not be made of our increasing ability to predict in advance whether an individual will have, or will subsequently develop, a genetically based handicap. The speed of these developments has left many people, including policy-makers, without adequately formulated views on the acceptability or otherwise of these procedures.
The second reason why ethical decision-making in medicine has become so difficult stems from changing patterns within society. Radical changes have occurred since the 1950s with the recognition of factors such as patient autonomy, the need to tell the truth, and the importance of distributive justice within society. For instance, patient autonomy has led to a heightened responsiveness to the needs, wants, and rights of patients as individuals. The difficulty with this is that the expectations of the doctor and those of the patient may come into head-on conflict, perhaps on moral grounds, or simply because of the different perspectives of the two. It also has become evident over recent years that ethical decisions need to incorporate their possible impact on society, and not just on individuals within society.
The codes I have referred to do not overtly recognize the conflict between the claims of the individual against the requirements of society. Neither do they come to grips with dilemmas that arise from the different ways in which benefit or harm can be assessed, for instance, the decisions that have to be taken when contemplating an operation on a spina bifida baby to save its life. What are the child's best interests? What are the family's best interests? How is a balance to be attained between saving a life, and inflicting future suffering on that saved life? What does it mean to "do no harm" in this instance? How does one sort out the relief of pain and suffering, against the possibility of prolonging distress? Regardless of the answers we arrive at in this case, there will be a major gulf between the complexities inherent within the application of sophisticated current medical techniques and the relative simplicities of the various codes available to the medical profession.
In an attempt to fill this gap, various statements of doctors' duties to their patients, profession, and society have been formulated in recent years. These are modern alternatives to the Hippocratic Oath, taking account of developments within both medicine and society. A good illustration is provided by the guidelines formulated by E.D. Pellegrino and D.C. Thomasma.10 Its emphases are on the good of the patient, the doctor's obligations to be competent in his/her practice, and on the need to respect the contributions of other health professionals, to provide medical care regardless of the patient's ability to pay for medical services, to involve the patient as much as possible in decision-making, to respect a patient's own values, to maintain confidentiality except in extreme circumstances, to realize the importance of caring within medical practice, to refrain from active euthanasia, and to participate in public policy decisions thereby recognizing the importance of medical practice for society as a whole. Although this type of code of practice begins to take us further than the other general codes, there are still limitations. And so, instructive as some of these codes are, we have to dig deeper to come up with more fundamental ethical principles. Before I examine these principles, however, it may be instructive to return to the scandals with which I began.
Perhaps the most striking feature of both scandals is that the clinical issues were so straightforward. Neither involved difficult ethical decision-making, neither was dependent upon highly sophisticated medical interventions, and neither was due to an upsurge of patient autonomy. Problems arose because basic patient considerations were overlooked. In neither instance was the treatment patient-centered, in the sense that the concerns and wishes of the patients received paramount consideration. These were overlooked, as the concerns of the doctors assumed prominence. The reasons for this were probably quite different in the two instances, and yet the end result was the same: the patients' welfare was subjugated to the interests of the attending doctors.
The loss of a patient-centered ethic leads to a second loss, namely, respect for human life. While there is no evidence in either case to suggest that the doctors had a low view of human life, human life was lost as a by-product of procedures that placed the doctors' own interests (including their research interests) ahead of those of their patients. This is one of the most salutary lessons to learn from these scandals: displacement of patients' welfare to a subsidiary position in health care leads inevitably to a lowering of the value placed on human life. Once the centrality of the patient as the object of concern in health care is lost, there is a concomitant lowering of the value society and the medical profession ascribe to that patient as a human person.
One consequence of this is that the way in which the medical profession carries out clinical research reflects its view of the patient as a human person. In drawing a distinction between therapeutic and non-therapeutic research, the basic assumption is that neither category should cause harm to the patient. This is where the research conducted at National Women's Hospital failed so badly. The ignorance in which the patients were kept precluded their informed consent to the procedures that were conducted on them, and allowed procedures to be used that would (unintentionally) harm them. Their treatment in this manner was only feasible because they were viewed as incapable of, or unworthy of, making informed decisions. They were, either implicitly or explicitly, treated as unequal to the medical staff who were carrying out research on them.
These considerations highlight both the nature of the two scandals I am dealing with in this paper, and the value of the guidelines put forward by Pellegrino and Thomasma.10 The practices in these cases failed to meet one guideline after another. They ignored the good of the patient, some of the doctors failed in their obligation to be competent in their practice, they did not respect the contributions of other health professionals (this was especially the case with Herbert Green in National Women's Hospital), they refused to involve the patient as much as possible in decision-making, they made no attempt to respect patients' own values, and there were serious questions about whether they paid due attention to the importance of caring in medical practice.
In spite of the deficiencies of these cases, even in terms of ethical codes, further progress can be made by examining ethical principles.
Ethical Principles
In the crudest of terms one can say that the specific conflict encountered in medical dilemmas is a manifestation of a more fundamental conflict, that between pure absolute principles (or deontology) and extreme consequentialist principles (or utilitarianism). Absolute principles emphasize the inherent rightness or wrongness of actions, whereas utilitarian principles stress the consequences of actions.
The difference is nicely summed up by an illustration provided by Professor Richard Hare:
Absolutists will say that because killing innocent people is always wrong, if you are in a situation in which if you do not kill one innocent person twenty other innocent people will die (though not by your hand) then you ought to be prepared to let the twenty die rather than become guilty of the death of one. But utilitarians will say that you have to act for the best in the circumstances, and save the twenty at the expense of one.11
A more specific medical example might be provided by the concept of the sanctity of human life, a concept that is referred to repeatedly within Christian circles. In terms of a pure absolutist view, one would be obliged to try and save every single life from extinction regardless of the enormous costs, and of any consequences this may have for other patients. On the other hand, an extreme utilitarian approach may advocate the destruction of handicapped people on the grounds that this was in the best interests of society as a whole, since the quality of life of most fit people would be improved by such a measure.12 It is difficult to defend the purist version of either position, since both lead to the neglect of patients - those with whom we are not currently concerned in the case of the absolutist, and those who are handicapped in the case of the utilitarian. Both have negative effects for patients for whom the medical profession should have a caring and healing duty.
In practice, the two principles co-exist within society, and most - if not all - medical practitioners (including Christians) utilize the two principles. This is because each approach has its inherent advantages and disadvantages.13 For instance, the strengths of consequentialism stem from its core of realism, its readiness to assume responsibility for the effects that follow from human actions, and its emphasis on reducing the lot of human suffering. On the other hand, actions cannot be evaluated solely in terms of their consequences, while a purely utilitarian calculus puts at risk despised and unpopular minorities within society. Deontology, for its part, is valuable because rules provide crucial signposts for ethical decision-making, while some rules appear to be of very general applicability and may protect exceedingly basic values, such as human dignity. Nonetheless, rule-centered approaches also have limitations, including the way in which they may obscure more fundamental principles underlying the rules, in cultural terms rules are sometimes relative, while even fundamental moral rules may come into conflict with one another.
Most seek to find a middle path, in which an attempt is made to attain a balance between the two approaches. We may show very great respect for widely held rules, but at the same time we retain our options about adhering to them when confronted by difficult circumstances and what may appear as highly undesirable consequences.
John Habgood, the Archbishop of York, has summed up this middle-way within the context of medical ethics. He writes:
To argue solely in terms of general happiness provides no safeguard against injustice towards individuals. A newborn child with severe spina bifida has little to put in the scales of a utilitarian balance, unless the sheer fact of its humanity is respected. No doubt in many cases such respect for its life will be outweighed by the potential misery the child might suffer and cause. But unless there is seen to be a conflict of principles at stake, not just a single principle, the gradual assumption of powers over life and death could become too easy. And the converse is also true. To assert respect for human personality, and so to preserve life at any cost without considering what in general makes human beings happy may, and often has, led to unnecessary suffering for the sake of blind adherence to beliefs.14
In other words, we live with conflict between principles such as these, and we experience the tension that inevitably exists between the two in our lives, in our professional decision-making whether in the medical or allied professions, in the laws we enact, and in the outworking of all these in society at large.
The scandals with which I started raise the question of whose good is to be considered in medical practice. If the answer is unequivocally either the good of the medical profession or the good of patients, different responses will be given. This applies to both absolutist and consequentialist approaches. In both cases, it has to be decided to whom one listens. If, in these instances, the actions of the doctors are implicitly accepted, they were in the right all along. If, however, the patients are to be believed, the doctors were guilty of major errors of medical practice and judgement. In other words, some objective standard is required, and this can only be provided by the scientific and clinical standards of the profession. The doctors have to be assessed, therefore, not simply in ethical terms but in scientific terms as well.
Were the doctors practising medicine by the generally accepted criteria of their profession, or were they deviating from this in some recognizable way? For many years, many members of the medical profession appeared to accept that they were adequate, although as time passed more came to doubt this. Ultimately, in both instances, non-medical observers and society rejected the adequacy of their standards.
Rarely, therefore, does a choice have to be made between profession or patients. The profession's own clinical standards are the primary consideration. Only when these can be established as in accordance with current expectations, does the question of absolutism or consequentialism become relevant. By definition, acceptable medical standards take account of the good of the patient, and this itself involves a mixture of absolutist principles (protecting the lives of innocent people) and consequentialist principles (acting in the best interests of patients in the present circumstances).
We need now to go further and begin to tease out more specific principles that have emerged as of value within medical practice. These do not protect any of us from conflict, but they do begin to point a way forward.
In looking for what we might describe as pivotal first-order principles, it would appear that justice and love are crucial.13 While there are many other important moral qualities, these are of central significance and of universal relevance, especially within a Christian perspective. Lewis Smedes has expressed this point very powerfully when he writes:
Justice and love are absolute, unconditional, unequivocal. They are global, universal, all-embracing commands. They pin us down at every corner, grip us at the centre, allow us no qualifications or evasions. Justice and love cover every conceivable human situation. They are the be-all and end-all of the moral life.15
From these major first-order principles, various second-order principles can be elaborated. These include such principles as the following:
Doing good and not doing harm
Respecting people rather than using them
Respecting the autonomy of people
Preserving life
Telling the truth
Seeking not to harm innocent people
Ensuring that the discrepancy in power inherent in a professional relationship is not exploited
All these principles enshrine moral ambiguities, and we should not expect otherwise. For instance, we only have to consider the principle of preserving life to bring out some of these ambiguities. Existing ethical codes stress the doctor's obligation to respect life, rather than to preserve life at all costs. However, if there is no obligation to preserve life at all costs, one has to make the distinction between actively killing a patient and letting that patient die. Alternatively, one may consider invoking the principle of double effect, whereby one person is allowed to die or is killed indirectly in order to save the life of another person. There can be no escape from decision-making. Conversely, to preserve life at all costs also brings with it major dilemmas, over and above economic ones. For example, this obligation may come into conflict with the obligation to do no harm. It may also conflict with the patient's own liberty, since by refusing a request to end a suffering patient's life, the doctor may be overriding the right of that patient to choose death. It could be argued that, by refusing to participate in a patient's death, a doctor is not acting in the patient's best interests.12 Once again, therefore, decisions cannot be avoided, and there is no escape from moral ambiguity.
The decision-making in the scandals I am concerned with appears to be of a different order, although the nature of the moral ambiguities needs to be assessed. In the case of the events at National Women's Hospital, it can be agreed that the experiment was aimed at doing good to the patients, since it spared many of them radical surgery. This may have justified the procedures employed in the early years of the experiment, although it has to be balanced against the principle of respect for their autonomy. The paternalism of the clinician concerned overrode the patients' autonomy, since they were not informed of the pros and cons either of the treatment being performed or of the treatment being withheld.
The lack of a convincing research protocol also impinged on the principle of doing good and not doing harm, since it did not allow a decision on this matter to be reached. By itself, the research protocol did not lend itself to any testing of the harm that was being done. There was no way of arriving at a decision, emphasizing that poor science leads to a contravention of fundamental ethical principles.
Green's unwillingness to inform his patients of the research nature of his treatment stemmed from his use of his patients and his lack of respect for them. This may not lead to obviously questionable clinical practice, or to poor clinician-patient relationships. This is where it may be deceptive, since a cursory assessment of clinical practice may fail to reveal any deficiency in ethical principles. Hence, the need for overt ethical approval of clinical research, and for some form of ethical audit of clinical practice.
Two other ethical principles were also placed at stake in this situation, and the two principles are linked. These are: telling the truth, and ensuring that the discrepancy in power inherent in a professional relationship is not exploited. It can be argued that Green did exploit this relationship and that, in so doing, he failed to tell the truth. It is not that he explicitly failed to tell the truth, but that his misuse of his authority led him to conceal clinical details he should have revealed. Herein lies the danger of such an asymmetry in power: the normal rules governing a relationship no longer apply, leading to a failure to enter into dialogue with the patient. However, not only does this apply to the clinician/patient relationship, it also applies to clinician/clinician relationships within a medical hierarchy. There is a discrepancy in power between senior and junior clinicians. This was the case at National Women's Hospital, where Green's power within the clinical establishment made it impossible for those junior to him to question his authority. This was why the complaints of those concerned at his treatment of CIS fell on deaf ears, and why the medical profession failed to control its own members. The notion of clinical freedom allows the exploitation of the less powerful by the more powerful.
A Christian Contribution to Bioethics
The perspective can now be narrowed to take account of specific Christian considerations. The immediate major one is to ask whether Christians have any particular contribution to make, or whether the principles I have already alluded to are the only ones Christians have. Can Christian theology fill out the principles I have been touching on? I believe it can, for the following reasons.
The first reason is that a theological approach to the world imparts meaning to human life. In particular, it helps us appreciate the meaning and role of suffering, pain, disease, deformity, and death; it places them within an overarching perspective of our relation to God and of God's relation to us. It helps us see them within a world of purpose, because it is a world brought into being by a purposeful and personal God. Such general principles will not immediately solve the problems I may have with my suffering or loss, but they constitute a framework within which I can begin to make sense of my own depravation.
By contrast, secular philosophical bioethics, such as I have dealt with previously, is unable to supply any comparable meaning.16 Philosophical bioethics is valuable in that it reaches across divergent communities of belief, but it does this at the expense of supplying meaning to the suffering, debility, and death of patients. Its strength lies in assessing general ethical principles, such as the question of informed consent, or of the debate about the allocation of limited resources. Important as such matters are, however, they stop short of bestowing value upon the individual. Why should we place value upon individuals? This is quite a different question from asking whether we should attempt to prolong the life of patient A rather than patient B. That, too, is an important consideration, and it is one to which bioethics has a very important contribution to make. Nevertheless, it leaves us floundering if we wish to know why it is worth devoting our care, compassion and resources to either patient A or patient B.
Christian thinking imparts content to the general directions provided by bioethics, and the content is a framework for approaching the ultimate questions of our existence.17 This does not mean that a Christian contribution will automatically provide assured answers to imponderable questions. It is not an easy escape route from some of the puzzling perplexities of bioethics. But it is a way forward. It tells us, for instance, that all human life is of significance, regardless of its value to society, its rating on a scale of physical fitness, or its mental abilities or lack of them. This does not mean that human life is never to be sacrificed for a higher good, nor that choices will not have to be made between one human life and another. Nevertheless, the broad outline painted by the brush of the Christian (theologian) tells us why human life is important and why, as a principle, it is to be valued and treated with the utmost respect.
In the second place, a theological perspective places limits on scientific technique.18 It questions the value of science for its own sake, while also accepting that science is a gift from God and is essential to the well-being of society and of individuals within society. All too easily, however, we can be seduced by the power of scientific technique and by the creativity of technology, and all too readily the most sophisticated forms of science and technology can be taken over by powerful cultural forces that convert them into deviant forms of pseudoscience.
We need constantly to be on our guard, checking and re-checking the directions of all forms of modern technology. And biomedical technology is no exception, because all too subtly that which started out with the intention of enhancing human well-being may end up treating human life as little more than a means of furthering scientific knowledge.
It is for this reason that an emphasis on the person as a being of intrinsic worth (that is, a worth derived from God), as an end in himself or herself, is one of the profoundest gifts that Christian thinking can bestow upon medical ethics.19 Closely associated with this emphasis is the concept that each human being is made in the image and likeness of God, thereby transforming social worthlessness into spiritual worth. While these principles do not tell us precisely what to do in specific situations, they provide us with the tools for discovering what the ethical alternatives are and how one set of ethical possibilities might be weighed against an apparently conflicting set of possibilities.
The third area to which Christians should be making a major contribution is that of the question of the control of biomedical technology. The scientific knowledge of causes leads to power over those causes, and power can be wielded for human good or it can lead to human degradation.20 The question we have to answer is: What basis is there for deciding that the welfare of an individual person will be upheld while that individual's genes, gastrointestinal tract, or neocortex are being manipulated?
There is no escape from the control over ourselves offered to us by biomedical technology. My argument is that this is legitimate if, in learning to exercise such control, we seek to do it in cooperation with God. We have been given responsibility for human life, and it is in this onerous responsibility that we begin to experience what the freedom to be human actually entails. This is a deeply Christian emphasis, since it brings us not only face-to-face with sin, failure, self-centeredness, and errors of judgement, but also with forgiveness, grace, mercy, and love.
Looking For Guidelines
The complex multifaceted nature of bioethical issues poses a problem for Christians, who are used to looking to the Bible and to theology for answers to ethical questions. Although this basic principle is not abrogated in the bioethical area, it has to be asked what sort of answers we expect theology to provide.17 We may expect precise answers telling us how to act in relation to individual patients. Alternatively, we may expect general directions, providing us with an overall framework within which to assess the situation of individual patients. The type of answer we expect may prove crucial, since it may lead on occasions in different directions. Even more important: which approach is more helpful in real-life medical decisions?
I have argued elsewhere that there are no specific biblical answers to questions regarding the ethical legitimacy of proxy consent for an operation on a neonate, or the ethical implications of heart transplantation units.17 Neither do I think that theologians are equipped to tackle such questions in isolation of the contributions of others within the Christian community. What is of far greater importance is to discover appropriate general biblical and theological principles, such as the importance of the individual, justice in health matters, and the need to protect the weak and helpless. Themes such as these are critical, and it is these that we should be seeking when attempting to sort out bioethical guidelines.
What we need, from a Christian angle, is a theological matrix, within which the thinking and attitudes of Christian doctors, nurses, scientists, sociologists, and counsellors can develop. I become wary, however, when general principles are put forward as though they are specific directives of relevance to every individual in every situation. There is a difference between the general principle that "I am in favour of preserving human life," and the specific decision about what I am to do in this specific situation now.
In theological terms, many long for certainty and for unequivocal guidance over what to believe and how to act. We also expect this guidance to remain unchanged from one year to the next. In so many instances, though, this guidance has been worked out over a prolonged period of time which, in some instances, extends to hundreds of years. We cannot expect similar firm guidance on matters which, in some cases, have only been debated for four to five years and sometimes over matters that have never been debated at all. It is in this context that uncertainty or even a change of viewpoint on some detailed bioethical matter may be quite acceptable; it may not be a mark of unfaithfulness, but rather of openness to a growing understanding and maturity within the Christian community. We are all learning, and we must be prepared to admit this.
These are crucial matters for Christians, since they so easily lead to division within the body of Christ. However, they also need to be seen in perspective. The broad principles, on which there is little if any division of opinion, are the truly crucial ones. Adherence to these will prevent a repetition of the scandals with which this article commenced, or the many other scandals which so easily degrade medical care. For Christians, the realization that each individual patient is an icon of God is a perspective we dare not overlook.21 It does not solve all medical ethical problems, but it is a salutary reminder that we are treading on holy ground as we interact with people in need.
General as this icon perspective is, it would have proved a major constraining factor in the two scandals I have considered. It introduces an equality between doctor and patient that undergirds all forms of treatment and all clinical relationships. It also questions important facets of the hierarchical structure of clinical practice in hospitals. From a Christian perspective, it is perhaps the major undergirding of ethical practice.
Notes
1For illustrations of research using human subjects, see Englehardt, H.T. The Foundations of Bioethics (New York: Oxford University Press, 1986).
2The details of this affair were revealed in a series of detailed articles in the Sydney Morning Herald each day over the period 30 July - 6 August 1988. A Royal Commission investigated the allegations towards the end of 1988.
3The official report of the inquiry appeared as: Cartwright, S.R. The Committee of Inquiry into Allegations concerning the Treatment of Cervical Cancer at National Women's Hospital and into other Related Matters (Auckland: Government Printing Office, 1988).
4Coney, Sandra and Bunkle, Phillida. "An `Unfortunate Experiment' at National Women's." Metro June, 47-65 (1987).
5McIndoe, W.A., McLean, M.R., Jones, R.W., and Mullen, P.R. "The Invasive Potential of Carcinoma in situ of the Cervix." Obstet Gynecol 64, 451-458 (1984).
6A more detailed account of the events leading up to the publication of the Metro magazine article, as well as of the inquiry itself, are provided by Sandra Coney in her book, The Unfortunate Experiment (Auckland: Penguin, 1988).
7Articles summarizing the findings of the inquiry and commenting on aspects of it are to be found in the following: Paul, C., "The New Zealand Cervical Cancer Study: Could It Happen Again?" British Medical Journal 297, 533-539 (1988); McNeill, P.M. "The Implications for Australia of the New Zealand Report of the Cervical Cancer Inquiry: No Cause For Complacency." Medical Journal of Australia 150, 264-271 (1989); Gerber, P. and Coppleson, M. "Clinical Research After Auckland." Medical Journal of Australia 150, 230-233 (1989); Campbell, A.V. "A Report From New Zealand: An `Unfortunate Experiment'." Bioethics 3, 59-66 (1989).
8Jones, D.G. "The Cartwright Report: Significance for Medical Education." Medical Journal of Australia, 151, 450-456 (1989).
9Jones, D.G. "Bioethics: Does Theology Have a Contribution to Make?" In C. Bloor and P. Donovan (eds.), Science and Theology in Action (Palmerston North, New Zealand: Dunmore Press, 1987).
10Pellegrino, E.D. and Thomasma, D.C. For the Patient's Good: The Restoration of Beneficence in Health Care (New York: Oxford University Press, 1988).
11Hare, R. "Medical Ethics: Can the Moral Philosopher Help?" In S.F. Spicker and H.T. Englehardt (eds.), Philosophical Medical Ethics: Its Nature and Significance (Dordrecht: Reidel, 1977).
12Phillips, M. and Dawson, J. Doctors' Dilemmas: Medical Ethics and Contemporary Science (Brighton, England: Harvestoer Press, 1985).
13Higginson, R. Dilemmas (London: Hodder and Stoughton, 1988).
14Habgood, J. A Working Faith (London: Darton, Longman and Todd, 1980).
15Smedes, L. Mere Morality (Grand Rapids: Eerdmans, 1983).
16Englehardt, H.T. "Looking for God and Finding the Abyss: Bioethics and Natural Theology." In E.E. Shelp (ed.), Theology and Bioethics (Dordrecht: Reidel, 1985).
17Jones, D.G. "Bioethics - Meeting Ground Between Theologians and Non-Theologians." Christian Arena (3), 8-11 (1986).
18Mitchell, B. "The Role of Theology in Bioethics." In E.E. Shelp (ed.), Theology and Bioethics (Dordrecht: Reidel, 1985).
19See my two books: Brave New People (Leicester, England: Inter-Varsity Press, 1984) and Manufacturing Humans (Leicester, England: Inter-Varsity Press, 1987).
20Gilkey, L. "Theological Frontiers: Implications For Bioethics." In E.E. Shelp (ed.), Theology and Bioethics (Dordrecht: Reidel, 1985).
21Jones, D.G. "Ethical Dilemmas In Medicine: Some General Guidelines." Journal of Christian Health Care 1, 20-25 (1988).