Talking to patients about end-of-life care is not easy even for experienced health professionals, says Dr Pete Nightingale, but following simple guidelines can make the process easier.
By Dr Pete Nightingale
As a GP, you are likely to have had many patients in your care with a life-limiting condition, or who are approaching the end of their life. Speaking honestly about death with someone who will soon face it themselves can be daunting, but can also be extremely rewarding.
A new report by Macmillan Cancer Support, No Regrets, explores the taboo around death, and included the worrying revelation that while 76% of people with cancer have thought about their own death, just 8% of these have shared their feelings with a healthcare professional.
This is concerning for a few reasons. I’d hate to think that any of my patients could be suffering in silence, feeling they cannot share their concerns with me.
GPs and their teams have the potential to play a significant role in helping people work through an Advance Care Plan. Macmillan has found that when healthcare professionals have a record of where someone would like to die, they are nearly twice as likely to die in the place of their choosing.
But talking isn’t always easy, so here are some tips:
Starting the conversation
Some people will make it clear that they are ready to start talking about it, but some may be waiting for a professional to bring it up. You could try a gentle prompt, such as, ‘many people at times like this want to discuss the future’.
Listen to the patient rather than talking yourself
People with an incurable diagnosis may value a sense of control so follow their agenda as much as possible in conversations. Some people, when they are nervous, try to cover this up by talking, but all you need to do is show you are listening. Reflecting what the patient says back to them can be a reassuring way of letting the patient know you are listening.
Think about including a family member in the conversation
Ask if they want someone close to them to be present. It can provide support for the patient and can also help ease communication within families. Some families shy away from discussing Advance Care Planning, so emphasise the importance of letting the patient talk about the future, if that’s what they want.
Focus on personal preferences
Support the patient in talking about what they would like to happen and what a ‘good’ death means to them. This can include anything from pain relief, location, whether they want their family members present, religious or spiritual needs, or more. Be prepared for the conversation to be more wide-ranging than their clinical needs.
As GPs, we have an increasingly hectic working life. But remember, there is no time-scale for completing an Advance Care Plan. You can carry the conversation into other appointments, or ask other primary care staff to help. Help could come from members of the nursing team or trained care administrators and in some areas trained volunteers are involved.
Ask open questions, listen, then record and share (with permission)
If the patient allows it, let their wishes be known to family, key professionals and out-of-hours services, ideally electronically so they’re accessible.
It may be tempting to offer false reassurance to comfort the patient. This can be misleading and prevent the person from coming to terms with what is happening. Phrases like ‘don’t worry’ may seem comforting, but they also imply that you are unwilling to answer difficult questions.
It’s ok not to have the answers
You may feel anxious that you won’t be able to answer all their questions, but you don’t have to have all the answers. Be honest, and say ‘I actually don’t know, but let me find out for you’.
Take opportunities when they arise
If you have the chance to complete an Advance Care Plan with someone, or even just start the conversation, take it! Even if they seem well, remember that there may not be more opportunities to have this chat with them, and people can deteriorate quickly. It’s better to have the conversation sooner rather than later.
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