BREAKING IT GENTLY
Even doctors can be unsure of how to talk to dying patients, but new guidelines aim to make that easier, reports Lynnette Hoffman
AS a palliative care physician, doctor Louise Welch has dealt with more than her fair share of angry families. Like the parents of the 21-yearold man who entered hospital on Christmas Eve with abdominal pain and vomiting, symptoms they’d suspected might be appendicitis.
When the man awoke from surgery his parents had already gone home and the effects of the medication were still lingering. He asked the doctor what they had found.
It’s the sort of situation any doctor would dread. The young man had cancer, and it had already spread throughout his body, leaving him just weeks to live.
Whatever way it was delivered, such news would be devastating, and the nurse who was there, listening, says the doctor’s explanation was caring and sensitively spoken. It’s the timing that was wrong. And the family never quite got over it, says Welch, who is director of palliative services for the Sunshine Coast Health Service. They were furious that they hadn’t been there, and were distrustful of other doctors and nurses from that point on, refusing any medication or treatment that was suggested, even though it would likely have made the man’s dying days more comfortable, she says.
Margherita Nicoletti, director of medical services at St John of God Murdoch Community Hospice in Perth, also knows of many other such stories. There was the 60-year-old man with motor neurone disease who was told dismissively by his neurologist that he was going to die and nothing more could be done.
This man, too, was on his own when he heard the news. There was no opportunity to ask questions. No mention was made of what could be done to reduce pain and symptoms in the meantime. He learned he was going to die, and then he was sent home to tell his wife.
Often what doctors do is not talk about it. They avoid it, so the patient is robbed of the opportunity to take control of their life,’’ Nicoletti says.
Patients who don’t have a clear understanding of their prognosis are more likely to become anxious and concerned, and they and their families may be more stressed and make less informed decisions, according to a systematic review of 123 studies published on the National Health and Medical Research Council clinical trials website last year (www.ctc.usyd.edu.au/research/publications/ articles—2006.htm).
Last month the first comprehensive set of guidelines for how doctors should communicate bad news to dying patients was published in the Medical Journal of Australia (2007;186(12):S77-S108).
In another sign that the Government is taking on some of the concerns of dying patients and their families, the NHMRC also this week announced $3.5 million in funding for 22 grants for palliative care research. Along with looking at ways to improve quality of care and clinical practice, the funding will also go towards research into support for family and carers.
The guidelines, which were also funded and released by the NHMRC, make clear that talking to patients about their prognosis is a very personal thing, so doctors need to tailor their communication on a case-by-case basis.
Poor quality or lack of discussion about end-of-life issues is one of the most frequent causes of dissatisfaction and complaints about care at the end of life, says lead author of the guidelines doctor Josephine Clayton, head of palliative care at Sydney’s Royal North Shore Hospital and a senior lecturer at the University of Sydney.
‘‘ The way doctors and nurses talk with patients and families about these issues is not always done ideally — the patient may be reluctant to bring it up because it’s scary, and the health professional may be reluctant because they are worried about upsetting the patient or making them lose hope,’’ she says.
Until recently there has been a lack of guidance in the literature on how best to discuss such issues with patients and their families, and consequently few doctors received specific training in how to do it, Clayton says.
The result is that many doctors lack confidence and are uncomfortable with discussing end-of-life issues.
But while most patients want to know as much detail as they can get about their diagnosis and prognosis, not everyone does. Older patients and those from non-English-
Help at end: Margherita Nicoletti, palliative care doctor and medical director, talks to Maree Finlay, who is suffering from Motor Neurone Disese