Breaking it gently to the dying
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 www.mja.com.au/public/issues/ 186—12—180607/cla11246—fm.html#0— i1093824