Richard Smith: A short history of patient power

Richard SmithI urge you to read Michael Millenson’s article on “Spock, Feminists, and the Fight for Participatory Medicine: a History.” It’s a fascinating and very readable account of how patient power has steadily increased in the US, and it would be very good to have a similar history in Britain.

Most of what follows in this blog comes from Millenson’s article to give you taste of the pleasure you’ll get from reading it—and, I suppose, a quick summary for those without the appetite for 3000 words.

The original code of ethics of the American Medical Association (AMA) said: “the obedience of a patient to the prescriptions of his physician should be prompt and implicit. [The patient] should never permit his own crude opinions as to their fitness to influence his attention to them.”  This was, of course, at a time when many prescriptions were both ineffective and harmful.

Millenson argues that it was Dr Spock who changed the traditional view for ever when he spoke at the AMA centenary meeting in 1947. Criticising doctors who gave mothers detailed schedules on when to feed their babies, he advocated feeding them when they seemed hungry “irrespective of the hour.” Mothers deciding when to feed their babies was, he said, “obviously nature’s own [method],which was used by the entire human race until the turn of the century.”

An earlier turning point in the rise of patient power came in a Supreme Court judgement on the case of an epileptic woman who had her uterus and ovaries removed without her consent. In 1905 the court prohibited a doctor “however skilful or eminent…to violate without permission…the bodily integrity of his patient…and [to operate] on him without his consent or knowledge.” A 1914 judgement said that it was assault for a doctor to do so.

Despite these judgements it wasn’t until the 50s that patients won the right to be fully informed on the benefits and risks of what the doctor planned to do, and only very recently have the courts made clear that the patient has the right to know not just about what the doctor plans to do but also about alternative options.

While the law worried away at the problem, 12 Boston feminists “frustrated and angered…by not having a say in our own health care” published Women and Their Bodies, which sold 200 000 copies and led to Our Bodies, Ourselves, which sold millions of copies. It argued that “women can become their own health experts.”

Inspired by the civil rights movement the women began to talk of patients’ rights and created alternative birthing centres that demedicalised birth and spread rapidly across the US.

The AIDS pandemic in the 80s led to completely new levels of patient participation in their care as “gay activists immersed themselves in the clinical details of AIDS research” and “asserted that the disease, no matter how deadly, was less important than the person harbouring it.”

The work of Jack Wennberg on variations in practice showed that much of health care is driven not by evidence but by “physician preference” and led to the creation of the Foundation for Informed Decision Making that aims to arm patients to become partners in their care.

The arrival of the internet has given a tremendous boost to patient power, and in 2001 the Institute of Medicine concluded that involving patients in decisions about their care was “the right thing to do ethically, provided better outcomes clinically, and was socially unavoidable” because of the explosion of information on the internet.

The global reality is, however, very different with doctors in many countries still practising in a paternalistic even dictatorial manner as if Our Bodies, Ourselves had never been written. We need further change, and a global history of patient participation would be an important step.

Richard Smith was the editor of the BMJ until 2004 and is director of the United Health Group’s chronic disease initiative.