In the preceding chapters, we established that initial moral concerns regarding medicine ultimately derive from questions regarding practical competence. Prior to the 19th Century, there had been three main obstacles to overcome in addressing these concerns and establishing an effective medicine. Firstly, there was the lack of
scientific knowledge with regards to the causes and nature of disease. Secondly was the general absence of any centralised regulation (state-sanctioned or otherwise) of doctors’ abilities and conduct and/or structures for the systematic dissemination and enlargement o f knowledge. Finally, there was the preponderance of superstitious or (increasingly) pseudoscientific alternatives allowed to compete with ‘scientific’ or professional medicine on a more or less level footing. As we have seen, by the end of the 19th Century, the cohesion provided by bodies such as the BMA and AMA had begun to address all of these concerns. Whether, once these goals had been achieved, doctors would face other moral challenges seems not to have been considered (we may consider Dewey and Leake as possible exceptions to this). By the 1960s, however, it was becoming increasingly clear that social changes and the rapid advance of the science o f medicine were raising difficult moral questions for which ‘professional ethics’ had no clear answers.
The following chapter will seek to examine five different ways in which the creation o f a medical establishment, effective medical science and changing social conditions presented fresh moral concerns for medical ethics in the mid-20th Century. Firstly, we will consider the effect o f advances in scientific medicine on traditional conceptions o f health and the ‘good’ of the patient. We will then move on to consider two
important elements o f scientific medicine in particular: the use of human trials for experimentation, and the effect o f the increasingly scientific nature o f medicine on conceptions of the doctor-patient relationship. Following that, we will consider one further important area of social change: the emerging social and political debate as to how an increasingly expensive scientifically-based system of healthcare should be provided and paid for. Finally, we will examine perceptions of the doctor as a paternalistic or coercive figure and the growth o f the ‘patients’ rights’ movement. In doing so, we will hope to achieve three aims: to illuminate the key questions with
which mid-lO* Century medical ethics was faced, to explore the ways in which these questions reflect an ongoing response to underlying concerns, and to consider why traditional medical ethics found them so difficult to cope with.
Moral Concerns Regarding Advances in Medical Knowledge and Life-Sustaining Treatments
At the time Percival was writing Medical Ethics, the pathology o f disease was still far from understood; over the course of the 18th and 19th Centuries, however, rapid advances were being made. In 1750, techniques were established for mass inoculation against smallpox with cowpox (the effect had been popularly known for some time prior to this), laying the groundwork for widespread vaccination programs1. In post revolutionary France, the study of particular tissues began to supersede that of the organs in importance; at the same time, increasing study of the body post-mortem provided an impetus towards explaining internal disease, leading to the invention of the stethoscope . In Germany, advances in lens-making technology enabled the development of cell theory, which was applied to a range o f biological and medical fields such as embryology3. Similar technical progress allowed for greater accuracy in monitoring patients’ physical states and importance began to be accorded to
comparing the effects of disease on such states with ‘normal function’4. Study of the pharmacopeia was brought into the scientific sphere, allowing for advances in the effectiveness o f drug treatment5. Chloroform and cocaine were developed for general and local anaesthesia during surgery . Beginning with Semmelweiss in Austria and continuing with Lister in Scotland8, recognition o f the importance o f hygiene in preventing the transmission of disease started to reduce the rate of post-operative and obstetric infections (although at first it was believed that dirt or ‘putrid matter’ itself was the problem, rather than any pathological agent9, a position maintained by some doctors well into the 1880s10).
In the wake o f such dramatic and rapid successes throughout the 19th Century
there came to exist ‘a virtually utopian b elief in the possibilities of applying scientific discoveries to medicine1 *. As the 20th Century passed its halfway point, there seemed little reason to doubt such optimism and the 1950s ‘revelled in the progress of medicine’. The Second World War had ‘spurred [an] effort to improve military
medicine’, an effort which had ‘spilled over’ into peacetime. In the twenty years from 1945 to 1965 the advances for the doctor were the most dramatic yet: streptomycin was introduced to treat tuberculosis; penicillin had been synthesised and its use in treating infections became more widespread; and other drugs were developed for a wide range o f physical and mental health problems. These were paralleled by the development o f new surgical techniques such as open-heart surgery and organ transplantation, and new technologies such as the cardiac pacemaker and haemodialysis. Vaccines were developed for illnesses such as polio, raising the possibility that infectious disease could be wiped out altogether12. Yet beneath this widespread confidence lay growing concerns.
As we saw in Chapter 1, from the Egyptians onward healers had always recognised in their prognoses the existence of certain diseases which simply could not be treated and accepted this as a part of their duties. As scientific medicine progressed
throughout the 19th Century, attitudes began to shift: death was no longer ‘seen... as the Hippocratics taught, [as] a natural terminus’ but as the failure o f life13. Medicine became a struggle against death and, in the utopian climate of the day, a struggle that it seemed might some day be won. Yet as Plato’s Socrates had noted with regards to Herodicus, the very efforts involved in an attempt to prevail in such a struggle may mean that it is not one worth winning. The populist writer M. Scott Peck recounts how, in 1965, as a junior doctor at a San Francisco hospital, he became responsible for the care o f an Air Force sergeant who had developed an inoperable brain tumour. The man’s condition had deteriorated rapidly to the point at which he had passed into a coma and been placed on a respirator. As the tumour began to affect the part of his brain controlling blood pressure, Peck had, in line with accepted practice, resuscitated him. The patient’s life was saved (an act o f which Peck’s supervisor approved) but to no apparent end: he did not regain consciousness and his body began to rot.
Since the patient was not ‘dead’, Peck was not permitted to cease administering treatment or life support. Privately, and against the express instructions of his Chief o f Medicine, he nevertheless ended the patient’s life by twisting the line intravenously supplying him with fluids. In doing so he defied both accepted practice and the
instructions of a superior; yet he also felt he was ‘halting an abomination’14. His dilemma was not unique. Jonsen, in describing one o f the encounters that drew him to
be involved in medical ethics, offers another example. In 1967, a colleague offered to show him a ‘real ethical problem’ and introduced him to certain haemodialysis patients who wished to be allowed to ‘turn off the machine’ and die. Nothing in this colleague’s medical education had prepared him for such a dilemma. Would the patients’ actions be suicide? Would he, as a physician, be considered an
accomplice15? The established medical profession, as with many o f the issues we will examine in this chapter, was accustomed to keeping discussion of such matters ‘in house’16. Throughout the 1960s, however, it was becoming increasingly apparent that medical advances were leading to doctors being placed in situations where the
obligation to prolong life enshrined in both professional ethics and the law could seem inhumane, and that this was placing a great strain on both doctors and their patients.
Moral Concerns Regarding Human Experimentation
As we have already seen in Chapter 1, moral problems associated with subjecting patients to untried and possibly harmful practices had been recognised since before the naturalistic turn in Greek medicine. From antiquity onwards the incomplete state o f medical knowledge also meant that it was sometimes difficult to distinguish medicine from experimentation. The Hippocratic tradition had established that ‘[the] untried and the unusual always had to be placed within a therapeutic attempt’ (that is, experimentation was only to be pursued in the context o f a course o f treatment, preferably where other methods had proved ineffective). In the Middle Ages, both Avicenna and Maimonides advanced a similar position and cautioned against the use of patients as a ‘mere means for learning’17. Additionally, whilst there is evidence that certain individuals may have pursued non-therapeutic research at certain times (under the Ptolemies, Alexandrian physicians were ‘permitted... to perform vivisection on criminals’) the medical value o f such experimentation was also a matter of debate. Galen, for example, maintained that experimentation on human subjects was not only unethical due to the risks involved but of little value ‘because the precise cause of [effects] cannot be isolated with certainty’18.
With the growth of scientific medicine from the 18th Century onwards, however, the use of human subjects to test potentially dangerous techniques became more common. King George II, whilst still Prince o f Wales, only had his daughters inoculated against
smallpox following ‘[experiments]... with condemned felons’19; later in the century, Queen Caroline, wife of George IV had the vaccination ‘tested’ on orphan children before allowing it to be given to her own (Queen Victoria, by contrast, took a more personal lead with her use of chloroform during childbirth in 185321). The use o f condemned felons or terminally ill patients for the testing o f new cures or to observe the effects of parasites or infections became more widespread in the 19th Century. The French physiologist Claude Bernard approvingly notes an experiment in which a condemned woman was, without her knowledge, given worm larvae to swallow in order to see if they would develop in her intestines post mortem. His justification for this (that it would cause the woman no additional harm given her impending
execution) may well have been true (although it was perhaps fortunate for her doctor that the woman was not granted clemency at the last minute). As Jonsen notes,
however, such an attitude represents a significant shift away from a conception o f the doctor as acting only in the individual patient’s interests: the worms may not have been in a position to cause harm, but they were o f no possible benefit to the woman herself22.
Such activities were not uncontroversial within the profession. By the early 20th Century the Russian doctor V.V. Smidovich felt compelled to pseudonymously attack
19th Century practices including deliberately infecting patients (some hopelessly ill, others merely chronically so or ‘unfortunate enough to find themselves confined to a medical institution’) with biological agents relating to gonorrhoea and syphilis. Yet later, successful, experiments in determining the cause o f yellow fever carried out in Cuba seemed to prove the value of non-therapeutic research. The American doctor William Osier, who wrote defending the practice, justified such experiments before both Congress in the United States and a Royal Commission in Britain by citing the consent given by the healthy test subjects, which he viewed as the chief moral issue at stake23. Other doctors emphasised the importance o f obtaining consent even in
therapeutic research, especially where the treatment might prove painful or distressing: the pioneering American gynaecologist J Marion Sims insisted on obtaining it not only from slave-owners but from slave women themselves when developing invasive and painful techniques for curing a particular urinary problem24. The first steps towards enshrining this importance in law were taken in Germany, where from 1900 research was only permitted in cases where the test subject had
given consent based on a thorough understanding o f the risks involved in the experiment25.
As Jonsen notes, history has rendered this development grimly ironic26. The Nazi death camps o f the Second World War numbered among their myriad horrors a whole catalogue of ‘research experiments’ carried out on unwilling subjects. Some o f these were driven by an effort to improve military medicine: ‘[camp] doctors used inmates to study the effects of mustard gas, gangrene, freezing, and typhus... [children] were injected with petrol, frozen to death, drowned or simply slain for dissection
purposes’27. Others bore a eugenic stamp or reflected doctors’ own interests. Josef Mengele, for example, carried out a range o f experiments on twins: he ‘performed cross-transfusions... [and] used his twin collection for comparative studies, infecting one child and then killing both for autopsy’. He also made his own ‘artificial’
conjoined twins28. When the doctors involved in the Nazi camps were brought to trial at Nuremberg in 1947, charges were brought under ‘standards that their prosecutors had devised precisely to try them’. Whilst such ex post facto standards are usually considered ‘a legal impropriety’ it was felt that they were justified in this case as an
9Q expression of ‘moral imperatives that should be known to all civilised humans’ . These imperatives were collected into the Nuremberg Code with the intention of governing all future human research:
Nuremberg Code:
1. The voluntary consent o f the human subject is absolutely essential. This means that the person involved should have legal capacity to give consent; should be so situated
as to be able to exercise free power o f choice, without
the intervention of any element of force, fraud, deceit, duress, over-reaching, or other ulterior form o f constraint or coercion; and should have sufficient knowledge and comprehension of the elements o f the subject matter involved as to
enable him to make an understanding and enlightened decision. This latter element requires that before the acceptance o f an affirmative decision by the
experimental subject there should be made known to him the nature,
duration, and purpose of the experiment; the method and means by which it is to be conducted; all inconveniences and hazards reasonable to be expected; and the effects
upon his health or person which may possibly come from his participation in the experiment. The duty and responsibility for ascertaining the quality o f the consent rests upon each individual who initiates, directs or engages in the experiment. It is a
personal duty and responsibility which may not be delegated to another with impunity.
2. The experiment should be such as to yield fruitful results for the good of society, unprocurable by other methods or means o f study, and not random and unnecessary in
nature.
3. The experiment should be so designed and based on the results of animal experimentation and a knowledge o f the natural history of the disease or other problem under study that the anticipated results will justify the performance of the
experiment.
4. The experiment should be so conducted as to avoid all unnecessary physical and mental suffering and injury.
5. No experiment should be conducted where there is a prior reason to believe that death or disabling injury will occur; except, perhaps, in those experiments where the
experimental physicians also serve as subjects.
6. The degree o f risk to be taken should never exceed that determined by the humanitarian importance o f the problem to be solved by the experiment.
7. Proper preparations should be made and adequate facilities provided to protect the experimental subject against even remote possibilities o f injury, disability, or death.
8. The experiment should be conducted only by scientifically qualified persons. The highest degree of skill and care should be required through all stages o f the
experiment o f those who conduct or engage in the experiment.
9. During the course of the experiment the human subject should be at liberty to bring the experiment to an end if he has reached the physical or mental state where
continuation of the experiment seems to him to be impossible.
10. During the course of the experiment the scientist in charge must be prepared to terminate the experiment at any stage, if he has probable cause to believe, in the exercise of the good faith, superior skill and careful judgment required o f him that a continuation o f the experiment is likely to result in injury, disability, or death to the
experimental subject.
The Nuremberg Code was largely formulated by a medical man, Dr. Andrew C. Ivy, who believed that the principles it embodied represented what had long been
established through the tradition of professional ethics (although, unlike many others, -a
he was not entirely confident that these were widely known or reflected on ). It is certainly worth noting that the profession identified a distinction not made in the
Nuremberg Code when, in 1964, the World Medical Association’s Helsinki
Declaration distinguished between research that is expected to benefit a patient (‘clinical research’) and research that is not (‘nonclinical research’)32. Given the almost unspeakably vile nature o f wartime atrocities, it was perhaps a comfort to think that they were an aberration, a temporary blip caused by a tragic lapse in professional rectitude. And perhaps they were, if only in terms o f the sheer gory horror of their extent. However, it was soon to be apparent that they were not as atypical as the medical establishment may have liked to think.
Germany had not been alone in carrying out experiments in biological warfare during the Second World War. Japan carried out research on prisoners of war at Pingfan in Manchuria to test the effectiveness o f biological weapons ; The United States,
working on the assumption that Nazi Germany would develop such weapons, had manufactured anthrax and botulin bombs; and Great Britain carried out military testing o f anthrax in both Scotland and Dorset34. During the Cold War, under the looming prospect of having to deal with the consequences o f a nuclear exchange35, members o f the United States armed forces were subjected to secret radiation tests. As Porter argues, it is possible that the physicians involved believed they were acting in highly exceptional circumstances36. Jonsen notes that the use of unwitting subjects may even have been the result of administrative error: in a grim irony, a declaration from the Secretary o f Defence stating that such trials should be subjected to the
Nuremberg Code remained classified as Top Secret until 1975, long after the tests had
finished . What he fails to acknowledge is the damage this does to the widespread contention that the Code merely expressed what the ‘good’ doctor already knew38: were this the case, such an error would have been merely a humorous irrelevance as those involved would presumably, whether guided by their own consciences or professional ethics, have followed the protocols anyway.
If such experiments can be excused as having taken place under the shadow of the atomic bomb (and it is by no means certain that this is the case) others were even harder to justify. The infamous Tuskegee Experiment, in which 600 black men from the eponymous town in Alabama who had been diagnosed with syphilis were
unwillingly used as guinea-pigs to observe the effect o f the disease was one. 400 of the subjects were left untreated (the remaining subjects formed the control group). All were instructed, on false premises, to report for periodic medical examination. Begun