ELEPHANT IN THE ROOM
How doctors can give bad news:
Don't make assumptions based on cultural demographic information; clarify instead
Clarify how much detail the patient wants
Give the patient and family the option not to discuss, or to discuss later
Ask what the patient already knows or has been told, and clarify misconceptions
Offer to have a separate meeting with family members to discuss their concerns
Make eye contact (if culturally appropriate), sit close to the patient, use confident, warm body language
Give information in small chunks at the person's pace
Use clear, simple language
Check to make sure the patient has fully understood what you've just said
Listen actively and allow silence
Acknowledge how the patient might feel
Be honest without being blunt
Don't make promises that can't be delivered, or that aren't consistent with clinical evidence
Explain the uncertainty and limitations of end-of-life information
Encourage questions


Help at end: Margherita Nicoletti, palliative care doctor and medical director, talks to Maree Finlay, who is suffering from Motor Neurone

Breaking it gently to the dying

Even doctors can be unsure of how to talk to dying patients, but new guidelines aim to make that easier, reports Lynnette Hoffman | July 21, 2007
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-year-old 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 (http://www.ctc.usyd.edu.au/research/...les--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-speaking or non-Northern European cultures are less likely to want detailed information, for example. But every patient is different, so it's important that doctors steer away from assumptions and clarify what the patient understands and wants to know, she says.

Yet that often does not happen. One study cited in the review found that fewer than a third of GPs tried to gauge what the patient already knew or wanted to know about their disease. Research in the review shows doctors are not good at predicting how much patients want to know, and tend to underestimate their needs. Likewise, the research shows a discrepancy between the level of information patients say they've received, and what doctors say they've provided.

Donna Daniell, CEO of Palliative Care Australia, a national peak body for care of the dying, says many patients and their families aren't being told the information they need. "They're being denied the opportunity to really make choices about how to end their lives," she says.

In some cases that can make a big difference to the type of care a patient receives. When cancer patients are not adequately informed of their prognosis, they are more likely to choose aggressive treatments and make decisions they later regret.

For example, when evidence shows there's very little chance they will survive, they may still be undergoing radiotherapy or chemotherapy which may only extend their life minimally -- and reduce their quality of life in the process.

Other decisions, such as whether or not to resuscitate, are also made easier when families are better informed. The patient can "own" the experience and decide how they want to spend their life. Nicoletti says one patient with motor neurone disease put treatments on hold and spent his dying days at an upmarket resort with his wife, a decision he may not have made had he not had such a clear understanding of the limits of the treatment he was receiving.

On the flip side, just because a diagnosis of terminal illness is made, it doesn't mean there is nothing the medical team can do to help, Welch says. "Even if you can't be cured, there are often ways to control or improve symptoms such as pain or nausea -- and we can still offer support. There's always something we can do."

Getting that message through to patients in the midst of emotional turmoil is tricky.

Patients only remember about 15 per cent of a 15-minute consultation at the best of times, so during an emotional diagnosis you can expect them to remember even less. But effective communication isn't just something you're either a natural at or not, Clayton says. While some people may be better than others, it is something that can be learned. "Communication is certainly a skill; it isn't just based on intuition and it doesn't reliably improve with experience," she says.

Proper communication is founded on good preparation. Taking time to prepare for the discussion is important, as is reviewing the diagnosis and test results, booking a longer consultation, and making sure a loved one comes along to add support.

Clayton says doctors need to be honest without being blunt, and keep information simple and clear. They should pay attention to body language and give the patient time to ask questions and absorb the information.

Rather than launching straight into a dissertation about the disease, it's important to take the time to assess the patient's state and build a rapport. Sensitivity and empathy go a long way, she says.

Doctors aren't the only ones who struggle to find the right words -- it's something friends and family experience as well. Should they avoid talking about the situation? Should they talk about things they enjoy? Should they encourage the person to be positive?

Experts say the best thing to do is listen, be emphatic, show that you care. One way to do that is to offer practical help where you can -- offer to help with the kids, mow the lawn, bring a meal. It can also be helpful to talk about memories and shared experiences.

What should friends or family not do?

"Never give unsolicited advice about how someone should be coping, so don't say things like 'look on the bright side' or 'try to cheer up'," Clayton says.

You don't have to focus all your attention on the illness, but don't pretend it doesn't exist either, Nicoletti says.

"People sometimes want to talk about it, but their world of people gets smaller and smaller because people don't know what to say and they feel uncomfortable."

Usually if a sick person wants to discuss their illness they will say little things here and there to clue you in, she says. "You don't need to say all that much."

The guidelines can be viewed at
http://www.mja.com.au/public/issues/...tml#0_i1093824
http://www.theaustralian.news.com.au...-23289,00.html