Medical Refusal Rights: Why pregnant women have them, too

Today, we learned about the death of a 28-year-old pregnant woman from Sydney. She didn’t die today. She died last year, or perhaps even earlier. But we are hearing her story now because of a letter two of the women’s doctors have written about the case.

The letter, published in a medical journal and reported today by the Sydney Morning Herald, tells of a woman who arrived at the Prince of Wales hospital at 28-weeks, suffering from pre-eclampsia – a severe complication of pregnancy. Things go from bad to worse when medical staff diagnosed acute promyeloctyic leukaemia.

She was offered a c-section. However, the woman was a Jehovah’s Witness who objected to the transfusion of blood. The team withdraw the offer, fearing the woman would bleed to death on the table. Instead, cancer treatment was begun. The fetus died shortly after and was expelled without incident but the woman ended up having a stroke and extreme fevers. Her organs failed and, on day 13, life support was withdrawn.

In their letter, the doctors talk about the devastation of the staff at what was perceived as two “avoidable” deaths. The distress of the woman’s loved ones, who had been expecting a new baby but instead found themselves organising a double funeral, can only be imagined.

It’s an understatement to say that the case raises some very difficult questions:

Were mistakes made?

Do patients have a legal and moral right to refuse medical interventions that could save their lives? Does this right trump all others, even when the patient in question is a pregnant woman?

Are pregnant women no different to other patients, who are entitled to live and die according to their beliefs, no matter how inexplicable or cruel others may find them?

Australia and the jurisdictions that influence us – the US and the UK – grant patients the right to refuse medical treatment.

In the last 20 years a series of common law judgements have affirmed the right of capable adults to refuse medical interventions, including food and drink, even where such refusal would likely cause injury or death.

The cases that wind up in court are those that care teams find most distressing or that medical institutions worry will cause legal grief later. They include a number of Jehovah’s Witnesses refusing blood products, as well as young people with catastrophic injuries or illnesses refusing interventions that cause too many side effects or that prolong a life they no longer value.

Underlying these judgements, and the ethical framework that underpins them, is a the modern value placed on patient autonomy over medical paternalism. We used to think that our doctor’s values should guide what they told us about our illness and the treatment choices available. If this meant we weren’t told we had cancer, or wound up dying in hospital despite wanting to die at home, we took it on the chin. After all, the doctor knew best.

These days we understand that Australians hold a range of diverse beliefs and values about everything from western medical care to the meaning of life and death. Respecting those values – really respecting them – requires medical staff to be open and transparent with patients abut their condition, to present a range of options, and to respect the choice the patient makes.

What the Sydney case shows is that while this sounds simple, it can get seriously complex, especially when the choice can be life-limiting, and the beliefs on which it was made seem to some preposterous, baseless or dumb.

Is there an alternative? One is to make an Orwellian exception to the principle that capable adults can refuse medical care. The exception would read: all capable adults except pregnant women.

Would there be any justification for such a move? Not without resorting to the idea that pregnancy hormones so addle women’s brains that simply by being pregnant, women forgo their standing as capable adults. We’d also have to abandon the wisdom that hard cases make bad law, and abandon our commitment to transforming Anglo-Saxon law to recognise the full humanity of women.

There is another way. Instead of undermining pregnant patients’ rights, we’d do well to better support the medical staff that enable women to realise them. The letter written by doctors at the Prince of Wales should be seen as a cry for help in this regard. It calls for a multi-disciplinary approach to decision-making, improved paperwork and more published information to assist physicians to manage their own anxieties, doubts and potential moral disagreement with patients.

American bioethicist George Annas says rare tragedies like the one at the Prince of Wales hospital in Sydney is the “the price society pays for protecting the rights of all competent adults and preventing forcible, physical violations of women by coercive obstetricians and judges.”

The alternative is even more unthinkable.

Publication history

She was 28 weeks pregnant when she refused the treatment that could have saved her baby’s life  Mamamia