9) The Patient Redux?

Introduction

Arguably, the most siginificant feature of modern medical practice is the 'disappearance' of the patient, the end of any active role for the patient in configuring the diagnosis and treatment of their ailments. If patients figure at all in such development, it is as passive and inert objects of medical practice.

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The Makings of Discontent

  • Antibiotic resistance: Following penicillin's success, drug manufacturers began making it for use by the general public in 1943. But, 4 years later, the first strain of penicillin-resistant bacteria appeared. It was noticed that evolution occurs in bugs and germs, and resistant bacteria and viruses could pass it on to other viruses and bacteria. By 1960, René Dubos was warning about the inescapable dynamics shaping the process, but his warning went largely unnoticed. In 1994, medical researchers identified one bacterium that was resistant to every antibiotic at the time. Dubos noted that we are so pursuaded by the power of technology that we always expect it will eventually find an answer. A sort of arms race developed between the mutating bacteria and more developed treatment.
  • From the Salk to the Sabine vaccine: The rapid development and introduction of a vaccine for polio, thanks to Jonas Salk and Albert Sabin, in alliance with the National Foundation for Infantile Paralysis, came to symbolise the power of modern medicine to conquer all diseases. But, the 1955 Cutter incident changed this as a vaccine containing supposedly inactivated polio hadn't be inactivated enough, leading to 250 polio cases. The incident ended public euphoria over the vaccine and resulted in the suspension of the American national vaccination programme. Although this was resumed the same year after the manufacturing method changed. They also changed how the vaccine was delivered from injection to oral delivery so the American public would forget the history of the vaccine and its side effects. But, there is still a lot of suspicion surrounding vaccines today.
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Continued

  • Thalidomide: In 1958, British doctors began prescribing thalidomide for nausea in pregnancy, nervous tension, migraines, and as a general sedative. On the basis of its own in-house trials, it was described as so completely atoxic that it was almost impossible to overdose. But, in 1961, doctors realised the drug caused severe congenital disabilites and it was withdrawn from sale. However, the drug was present in a number of medications, including some cough mixtures, for example, whose labelling didn't use the word thalidomide, so it remained in many home drug cabinets, continuing to cause infant malformations. The resulting lawsuits still continue.
  • Heart transplants: In 1967, Christian Barnard became renowned across the world for succeeding in the first heart transplant while racing against Michael Debakey. But, in their race for surgical fame, the intensive aftercare of patients was largely abandoned. So, the patients involved in this race didn't live for very long without massive medical life support. This raised questions about whether these interventions were actually experiments on human subjects in an area where the medical profession made up laws and regulations as it went along. The power of medicine to define what was and wasn't ethical was so dismaying that, in 1968, the US Congress held a series of hearings on the issue which are often viewed as the founding moment of modern biomedical ethics.
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Continued

The Tuskagee Syphilis Study took place between 1932-1970 that involved the US health service carrying out a study to better understand syphilis. People were identified to either receive treatment or not receive treatment. But, it was mostly coloured people who did not receive treatment which was reasoned by saying that black men lived a lifestyle that predisposed them to syphilis. It has been linked to the Nazi experiments.

The Nuremburg trials of Nazi doctors worried a lot of people too which led to new codes which must be followed in the medical community, including things like informed consent.

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Discontent and Social History of Medicine

The growing concern about the power of medicine was captured by Ivan Illich who argued that, 'the major threat to health in the world is modern medicine'. Such criticism coincided with the expansion of the sociology of health and illness (research into the relationship between social organisation, health and illness). Influential writers, like Thomas McKeown, added to the criticism that the achievements of modern medicine were overblown, instead suggesting the modern improvements in health and longevity were the result of better housing and diet.

In a similar vein, the sociologist Ivan Waddington, argued the chief and distinctive feature of modern medicine was the 'disappearance of the patient'. Before modern medicine, the pysicians' reputation rested on access to aristocratic patients as, when confronted with them, power was evenly distributed between patient and physician. The same goes for physicians with lesser status, who competed with other providers of remedies to illness. So, the physician asked 'what is wrong with you?' and a conversation ensued, aiming to reveal the disease. Modern physicians ask, 'where does it hurt?', and thereafter the patient no longer has any input in understanding their condition. Thanks to expert knowledge about the patient's body, power is no longer evenly distributed between patient and physician, so the patient has disappeared. If the patient is present, it is only as the passive and inert object of medical analysis.

This is what worried critics of modern medicine.

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AIDS and Patient Activism

While Waddington's criticism was pursuasive, during the late 1980s, growing patient activism raised some questions. If the critics of modern medicine argued that patients were removed from any active role in their treatment, it seemed that those diagnosed as HIV+ challenged the medical establishment in a way these critics couldn't have imagined.

While we are now used to not regarding people diagnosed as HIV+ as different, in the 1980s, AIDS was regarded as the new, silent plague that would eventually affect everyone. It was regarded with so much fear because it originated among homosexuals and intravenous drug users, and was mostly transmitted through the most intimate and unspoken connection, sex. Removing the stigma associated with HIV and AIDS was due to activist groups who worked incessantly to challenge public fears, and promote research into new cures, sometimes calling into question the medical theories about, and practices in the development of treatment.

At the same time, there were deep divisions among activists about the best way forward. There were those much less visible activists who called for investment in energy and resources in fighting public fears, like providing funding for public education, and increasing and improving terminal care. Then there were far more visible activists who called for investment of energy and resources in medical research, and they were not opposed to objectification and medicalisation. These divisions became more noticeable as AIDS activism has provided the model for increasing involvment of patients in the evolution of contemporary medicine. 

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Whither the 'sick man'?

Arguably, what is at issue in these divisions is not so much the disappearance of the patient as that of the 'sick man'. For Georges Canghuilhem, the 'sick man' was ontologically distinct from the 'healthy man'. He argued that modern medicine effectively erases this qualitative difference.

On the other hand, patient activism contructs a new form of existence. In one version, medical understanding of what it means to be normal is no longer an external and imposed norm, but one that is internal: we ourselves understand our own embodiment in the same terms as the medical profession, so that to be ill is to live a life so unworthy of living that we demand evermore powerful ways of defeating disease.

But, there are other kinds of patient activism, especially in the disability rights movement.

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