Internal and external morality of medicine: lessons from New Zealand

Introduction

It has been claimed that the Bristol case will kill internal self regulation.¹ The New Zealand experience should serve as a warning against believing that internal self regulation by the medical profession is useless and should be discarded. After the report of the New Zealand cervical cancer inquiry 11 years ago,² which has similarities with the Bristol case, many new rules were made, some of which have the status of legal regulations, governing both research and medical practice. Yet these apparent improvements in ethical standards represent an unbalanced concentration on an external morality for medicine. Over the same time internal morality, though it had a key role in limiting the harm done to patients in the cervical cancer study, has been thoroughly neglected.

Henk ten Have has described internal morality as those values, norms, and rules that are intrinsic to the practice of medicine.³ Internal morality arises from within a community of practitioners—doctors, nurses, teachers—and it is based on how one should behave in one's daily work. These are shared values that are learnt from one another and may or may not be written down. External morality is the view from outside, reflecting the ethos of the wider society. The recent discipline of bioethics has grown up largely outside medicine and has developed principles of its own. Rules drawn from principles in bioethics and from other ethical doctrines in society are often codified into laws.

The best known written code for practitioners, drawn up by insiders, is the Hippocratic oath.⁴ A central statement is: “I will use my power to help the sick to the best of my ability and judgment; I will abstain from harming or wronging any person by it.” The code is written in the first person—a moral agent is envisaged. The most famous outsiders' code, drawn up by judges and used as part of the judgment against the doctors on trial for crimes against humanity, is the Nuremberg Code.⁵ The first of the 10 points on permissible medical experiments begins: “The voluntary consent of the human subject is absolutely essential.” It is sobering to note that this code was based partly on earlier regulations from 1900 and 1931 in Germany, which were more enlightened than in any other country.⁶

The cervical cancer inquiry was an inquiry into allegations of an experimental research programme undertaken by Dr Herbert Green at the National Women's Hospital in Auckland. It was alleged that the research entailed withholding conventional treatment from patients with carcinoma in situ of the cervix to study the natural course of the disease. Judge Cartwright, who led the committee of inquiry, concluded that the research programme had resulted in inadequate treatment for many women. About 40 of these women eventually developed invasive cancer.²

Summary

• The stories we tell about failures of good medical practice, such as about the Bristol case and the New Zealand cervical cancer study, can restrict our thinking about solutions

• In New Zealand, the stories told in the report of the judicial inquiry and by women's health advocacy groups were shaped by a concentration on external morality—the view from the outside, reflecting the ethos of the wider society and of bioethics

• Internal morality—those values, norms, and rules that are intrinsic to the practice of medicine—was ignored or even denigrated; external controls were proposed as solutions

• The story that best fits the facts is that it was doctors acting in accord with their traditional obligations who brought the problem to light and limited the harm to patients

• We conclude that external controls are blunt instruments for finding the solutions in particular cases and require a functioning internal morality to interpret them

During the Cartwright inquiry and its aftermath dimensions of internal and external morality were played out in the actions and views of different groups and individuals. The inquiry was set up after allegations were made by a feminist journalist and an academic, Sandra Coney and Phillida Bunkle, in a magazine article in 1987.⁷ The starting point for their investigations had been a paper written by three other doctors at the hospital and a statistician.⁸ This paper had recorded the apparent outcome of Green's study and showed that women in the group receiving no, delayed, or incomplete treatment for cervical carcinoma in situ were 25 times more likely to develop invasive cancer than women in the group for whom initial treatment was successful. Judge Cartwright found that the research programme into the natural course of carcinoma in situ of the cervix had been approved in 1966, at a time when Dr Green and his colleagues were well aware of the prevailing view that it was a precancerous condition and warranted treatment. About 160 women, with neoplasia not only of the cervix but also of the vagina and vulva, were inadequately treated for varying lengths of time.² The judge found that nearly all the patients were unaware that they were part of a trial. The trial was reviewed by an internal working party after expressions of concern by two hospital doctors in the early 1970s, but it was never formally ended. The events leading to the inquiry, the inquiry itself, and its aftermath have been interpreted in conflicting ways. Four different stories can be identified.

First story: internal morality had failed

The first story is embodied in Judge Cartwright's report and recommendations. She concluded that internal morality had failed. She wrote: “Twenty years of oral and written expressions of concern by Dr McIndoe, supported for much of the time by Dr McLean and latterly also by Dr Jones, failed to persuade any part of the medical profession to review the implications of the 1966 trial for the patients.”²

Her recommendations emphasised not internal but external morality. She recommended review of treatment protocols as well as research by ethics committees; regional rather than hospital based ethics committees with half lay membership; a patient advocate at the National Women's Hospital, independent of the hospital; and the appointment of a health commissioner. The health commissioner's role was envisaged as negotiating and mediating complaints and grievances of patients and heightening professional understanding of patients' rights. So even educating the professions was to be done from outside.

Second story: internal morality was the problem

The second story was told by the Ministry of Women's Affairs and by Fertility Action, a women's health advocacy group that Coney and Bunkle were involved in. They claimed not just that the medical profession had failed by its own standards but that its own standards were part of its damaging claim to professional power. This power had been at the root of the problems and needed to be dismantled. The cervical cancer study wasn't an aberration, it was the outcome of mainstream medicine. The Fertility Action closing submission stated: “This inquiry has been about power: the power of the medical profession and the patients' lack of it. This is the framework in which the events of the past must be placed. Changes in the future must have as their aim the equalization of this power imbalance, by dismantling the power of the profession and strengthening patients' rights. Only then will we be confident of claiming ‘never again.’”⁹

The Ministry of Women's Affairs, in its closing submissions, agreed: “Ultimately the issues are who controls medicine and how, about who benefits from it and who are its victims. Thus as so many witnesses have so clearly stated, the central issue, above all others, is power.” This story of medical power also looked to external controls to prevent the problem happening again. There was also an implication that the internal morality should be dismantled.

Third story: a feminist witch hunt

The third story was also about power, but from a different angle. According to this view the claim by women's groups that the central issue was power showed that it was only about power: it was a barefaced attempt by feminists to break the power of the medical profession. A revisionist view, published by the same Metro magazine in which Coney and Bunkle had made the original allegations, claimed that the inquiry was a radical feminist witch hunt.¹⁰ In an attempt to wrest power away from the medical profession not only Coney and Bunkle but also Cartwright were held to have misunderstood and misinterpreted evidence and reached unjustified conclusions. This claim did not stand up.¹¹ Moreover, the Medical Council of New Zealand, in finding Professor Bonham (Green's head of department and head of the Postgraduate School) guilty of disgraceful conduct, confirmed the factual findings of the committee of inquiry.¹² Yet many senior and influential doctors seemed to support the contradictory and obfuscating scientific assertions in Metro's revisionist article. They included the chairman of the New Zealand Medical Association at the time of the inquiry, who wrote in 1990: “The people I know feel the second Metro article has contributed towards providing a balance, a healthy questioning of people and ideas that were being set up as sacrosanct.”¹³

Fourth story: partial success, partial failure of internal morality

The last story to be told from the inquiry has received the least attention. It concluded that the medical profession's internal morality had not failed absolutely. There were heroes as well as villains in this story. What Coney and Bunkle laid bare was not unitary professional power that set doctors' interests against patients' interests. On the contrary, it was a profession torn by dissension, both privately and publicly.

It was because of this dissension that there was something to write about—that the outcome for patients could ever become public knowledge, as it did in the publications of McIndoe, McLean, and Jones,⁸,¹⁴ which Coney and Bunkle used as source documents. Green's papers reporting a relatively favourable outcome for patients did not tell the real story.^15–17 Moreover, McIndoe and McLean took appropriate steps, according to the traditional obligation to use their power to help the sick, and made their concerns about dangers to patients known first to Green, then to the hospital superintendent, and finally to the superintendent in chief of the hospital board. The internal inquiry that reported in 1975 was set up as a direct result of their concerns and confirmed the adverse effects on patients. (The internal inquiry has been called a whitewash because it failed to recommend stopping the trial, but it was candid about the effects on patients—confirming that each of the patients whose files were examined had developed invasive cancer while in the trial.²) Practice did change at the hospital subsequently, but only for new patients. The medical review undertaken for the Cartwright inquiry found that the proportion of patients with an initial diagnosis of cervical carcinoma in situ who developed invasive cancer over the subsequent 10 years fell from 7.2% in 1974 to 3.4% in 1975 and 0.6% in 1976.² Because practice did not change enough, McIndoe and McLean went through the hospital records and wrote them up for publication and also presented the results at professional meetings in New Zealand and overseas.² The one thing they didn't do was to go to the press. McIndoe died before the public inquiry but his family supported it. McLean also supported the inquiry.

Of course these actions were insufficient, especially for patients who already had been diagnosed before 1975 and who continued to be followed up without adequate treatment. Nevertheless, the kinds of actions taken by these doctors were models of good practice in medicine, and they were partly successful. It may have been McLean who best understood both the strengths and weaknesses of his profession. He urged Coney and Bunkle, when they were writing their original article, to handle the subject sensitively and carefully—to try to avoid getting the doctors' backs up and obstructing long term change. He said: “It's a bit like dropping the bomb on Hiroshima. You've done it, now we've got to build on it.”¹⁸

From stories framed in these ways it is possible to extract lessons from the Cartwright inquiry that are not tied to one time and place. Have the lessons been learnt in New Zealand, and what are their implications for the practice of medicine and research in other countries?

External regulation

External regulation has certainly grown in New Zealand. There is a Ministry of Health national standard for ethics committees and an independent ethics committee structure.¹⁹ Accrediting and monitoring of ethics committees is carried out by the Health Research Council. The new external controls may prevent a study such as Green's being approved in the future and will ensure the formal consent of participants. They will not necessarily ensure the independent monitoring of such a trial so that it can be stopped if found dangerous to patients, though the separate move by the Health Research Council to set up a Data and Safety Monitoring Board for clinical trials should have this effect. The Health Commissioner's Act²⁰ should also ensure that formal consent procedures are in place, as specified in the Code of Rights,²¹and will probably empower patients to complain about their own treatment. There is no specific provision in the Code of Rights for doctors or nurses to make a complaint about a colleague. The rights to complain are all phrased from the patient's perspective. Despite the fact that wider professional obligations are given no place in the code, the only major inquiry under the Health Commissioner's Act followed a complaint by doctors about patients' safety.²² Hence doctors or nurses can use the new legislation to take action against hospital management, but it is much less certain whether they will use this pathway to complain about a colleague.

The health commissioner has recently chided the profession for not using the act to “blow the whistle” on colleagues. She has also criticised doctors for protecting the identity of colleagues seeking assistance under the Doctors' Health Advisory Service and taking part in quality assurance activities.²³

Power

Both the second and third stories are based on claims of incompatible and competing interests between medicine and women. There were real issues about power identified by both sides. Gross disrespect for women patients was shown by other practices at the National Women's Hospital, which came to light at the inquiry. These included groups of students carrying out vaginal examinations on anaesthetised women without their consent and postgraduate students inserting and removing intrauterine devices on anaesthetised women before hysterectomy. On the other hand, Coney and Bunkle made no secret of their wish to dismantle professional power. But the crucial problem of power that led to failure to stop the trial was the imbalance of power among doctors. There was extreme difficulty in challenging the powerful medical leaders in the hospital, with rigid hierarchies and strong personalities.²⁴

The Bristol case investigated by the UK General Medical Council in 1998 raises the same issues. In highlighting the excess mortality in children from cardiac surgery done by two surgeons, the whistleblowing anaesthetist said: “I was seen as the problem, rather than the death rates being the problem.”²⁵

Klein noted that one of the surgeons whose performance was questioned was also chairman of the hospital medical committee and medical director for much of the relevant period, “a position more likely to command prudent deference rather than encourage open criticism.”²⁶ The initial BMA statement in response to the GMC report said that “the profession intends to take a lead role in achieving change towards a culture of openness and critical self appraisal that will render whistle blowing obsolete.”²⁵

In 1988²⁷I drew attention to similar sentiments expressed by McIntyre and Popper.²⁸ They called for a new ethic to allow the profession to acknowledge and deal with error. They recommended a critical attitude towards one's own work and that of others. But this requires tolerance—“in the search for mistakes there should be no denigration of others.”

In New Zealand this lesson about power has gone unheeded. Indeed commercial management practices in hospitals have led to less not more openness.²⁹In contrast, the 1995 GMC guidelines, Good Medical Practice, set out clearly the duty doctors owe to protect all patients when a colleague's conduct, performance, or health is a threat to them.³⁰ The issue then becomes, in the face of the sort of shortcomings shown at Bristol, whether practical ways to ensure compliance with these guidelines can be found.

Internal morality unacknowledged

The fourth story was about the partial success and partial failure of the internal morality of medicine. Both the success and failure have been poorly acknowledged by the profession. The leaders of the medical profession in 1988 did not acknowledge publicly either that patients had been harmed or the profession's responsibility in failing to stop Green. They also neither identified nor praised the whistleblowers. The reasons for this lack of action are complex. In part it was because many doctors felt wronged by the stories told about them. Coney concluded her book, The Unfortunate Experiment, by reiterating: “The real problem was medical power and its exercise. It could easily have been another doctor, another hospital or another city altogether.”¹⁸

Her presumption was that all doctors were equally bad, and many doctors felt this to be unjust. The medical profession was demoralised and indeed failed to act morally at the most important time, just after the report was released. One reason for this was that the chairman of the New Zealand Medical Association was also a senior member of staff at the National Women's Hospital who had been criticised in the judge's report for giving incorrect information to the public outside the inquiry.²It is a particular danger in a small country that few professionals are likely to be totally uninvolved. Subsequently, Bonham and Green did face disciplinary charges by the Medical Council, though the proceedings against Green were dropped because of ill health.

Conclusions

The operation of an internal morality was ignored in the making of policy after the Cartwright inquiry. The external controls, designed as if they had the whole task of regulating the moral conduct of doctors, have been clumsy and unsatisfactory, as could have been expected. The Code of Health and Disability Services Consumers' Rights²¹ leaves little room for interpretation, and the dangers of dogmatic interpretation are being felt. For instance, the health commissioner was reported as being adamant that all patients who were not to be given cardiopulmonary resuscitation must be consulted about this. She said that if consent was not sought there was a high risk that doctors “will have breached the law set out in the code which says that no service can be provided or not provided without consent.”³¹ The code also proscribes various research practices, and there is no discretion to examine the benefits of the research. For instance, rules forbid the use of left over tissue samples or blood, even if anonymous, without consent. This has affected the conduct of unlinked anonymous HIV surveillance, which is standard practice in many countries.

Neglect of the importance of internal morality is widespread, despite all sorts of evidence of its vital functions. Some evidence comes from careful sociological investigations of the processes surrounding consent for treatment. Such work has consistently revealed a substantial divergence from the “law and ethics” conception of informed consent in clinical practice. It is the tradition and context of medical care that makes a difference to consent.³² Investigations of participants in research also suggest that patients pay little attention to what is written on consent forms, at least when there is a high level of trust. Hence the assumption of patient autonomy and informed consent alone offer insufficient protection to patients. Physicians need to live up to the trust placed in them.³³ Even bioethicists have criticised their discipline for ignoring real moral agents and concrete situations in favour of abstraction.³⁴

There needs to be a place for both external and internal morality and an effort to understand their connection. In New Zealand we face the danger of reducing one set of norms and values to another, so that there is only external morality. We are finding that external controls are blunt instruments in particular cases and require a functioning internal morality to interpret them. There is a special danger for trust. Complex regulations can disempower those forced to observe them. If they accept they cannot be trusted there is a risk they will become less trustworthy and obey the letter of the law only. Arguments for professional self regulation rely on the notion that trustworthiness is enhanced by the self respect accompanying ownership of professional standards.³⁵ Evidence that a service ethic is functioning probably also enhances public trust.³⁶ Distaste for the self serving nature of some professional activity should not blind us to instances where internal morality has worked in the interests of patients. Instead we need to examine how it works, how it can be adapted to new circumstances, and how it is connected to external morality.

Figure.

The website of the National Womens' Hospital, Auckland (http://www.nwhealthinfo.co.nz/index.html)

Figure.

Read about the Cartwright report online (http://www.nwhealthinfo.co.nz/page33.html)