Jane McCredie: What dying patients really want

It used to be said that pneumonia was the “old man’s friend”, allowing a gentle decline into oblivion at the end of life.

But such a simple death is becoming an increasingly rare phenomenon, as technology offers an ever-expanding array of means to prolong life.

The seemingly endless menu of possible tests and interventions poses an ethical conundrum: how should the principle of primum non nocere (first do no harm) be applied in a terminally ill patient?

In a moving piece published recently in the New Yorker, US surgeon Atul Gawande said modern technological medicine had “utterly failed” to meet the needs of the terminally ill.

Surveys showed dying patients’ top priorities were to be spared pain, to be with family, to have the touch of others, to be mentally aware and to not become a burden, he wrote.

He documented cases where, instead, patients were subjected to sometimes cruel and unnecessary interventions, including that of a 70-year-old woman with metastatic cancer and fungal pneumonia.

She had chosen to refuse treatment but ended up on a ventilator and antibiotics after being pressured by her oncologist.

In her book, published this month, titled Tell me the truth,  Melbourne oncologist Dr Ranjana Srivastava grapples with similar questions, writing about how hard it can be for doctors to know when the best and kindest option is to do nothing.

Clinicians’ understandable reluctance to discuss the nearness of death can also make it hard for patients to have all the information they need to make the best decisions about what is left of their life.

Cancer patients and oncologists often “exist in a fog”, she writes, each feeling uncomfortable about what the other doesn’t know.

In similar vein, Sydney intensivist Professor Ken Hillman waxes nostalgic about his grandfather’s death at home under the care of a skilled GP.

These days, doctors “are often complicit in refusing to face the inevitability of dying and death”, he writes in his book, Vital signs, citing the case of a patient who had not regained consciousness 2 weeks after a massive stroke:

Five years ago he would not have been admitted to ICU. Now we removed a large part of his skull to allow the brain to swell … There is little convincing data that patients improve markedly after such a radical procedure but because we can do it, we feel we must.

The nature of the health system, doctors’ own discomfort with death, the expectations of patients and families and fear of litigation all combine to push doctors to offer treatments whose only effect may be to worsen a patient’s last weeks of life, Hillman suggests.

Medical specialists, even cancer specialists, are often uncomfortable with patients who are dying. They can usually think of something more that can be offered … Up to 70 per cent of people now die in acute hospitals; surrounded by well meaning strangers, inflicting all that medicine has to offer; often resulting in a painful, distressing and degrading end to their life.

Declaration: Ken Hillman’s book was published by UNSW Press, where I am employed part-time as a publisher.

Jane McCredie is a Sydney-based science and medicine writer. She has worked for Melbourne’s The Age and contributed to publications including the BMJ, The Australian and the Sydney Morning Herald. She is also a former news and features editor with Australian Doctor magazine. Her book, The sex factory, on the science of sex and gender will be published by UNSW Press later this year.

Posted 13 September 2010