It’s okay to talk about dying
How healthcare professionals can overcome their reluctance to talk to patients about death and dying
Healthcare professionals can get over their reluctance to talk to patients about death and dying, says a report
A report by the Royal College of Physicians reveals that while open discussions are fundamental to managing care, giving patients choices and control over the rest of their lives, professionals continue to find them challenging.
‘It’s disappointing that we’re still worrying about raising the subject,’ says the RCN’s professional lead for long-term conditions and end of life care Amanda Cheesley. ‘As healthcare professionals, we’re terrified of saying the wrong thing or upsetting somebody. And doctors, in particular, have a sense of failure if they’re unable to treat someone.’
It is a view echoed in Talking About Dying. It pinpoints several more perceived barriers to holding timely discussions, including the practicalities. ‘There can be environmental constraints,’ says Ms Cheesley. ‘In a busy hospital ward trying to find somewhere more private where you have time to talk can be difficult.’
Project to make conversations happen
But significant improvements are possible, with the nurse-led work of Royal United Hospitals Bath NHS Foundation Trust showcased in the report. Five years ago, it began a quality improvement project designed to improve conversations about end of life care, which started in one ward and has now spread throughout the trust.
‘There was a feeling that you had to be a specialist to have these kinds of discussions,’ says lead nurse in palliative care and end of life Helen Meehan. ‘But we need to recognise that everyone has a role to play. That may be listening and picking up on cues, letting other staff know the person is ready to talk.’
In practice, as part of ward multidisciplinary meetings, staff consider whether a patient might be in the last few weeks or months of life or has an uncertain future, explains her colleague, Rachel Davis, a clinical nurse specialist in palliative care. ‘We encourage staff to be more active in their communication with patients and families around uncertainty, listening to what matters most to the patient at this time,’ she says.
To remind staff of the crucial elements of the project, they have devised the CHAT acronym:
- C - consider patients with a poor prognosis or end of life care needs.
- H - have conversations with patients and their families.
- A - advise your team of the outcome of those discussions.
- T - transfer information when the person is discharged.
‘Throughout, we’ve tried to keep the messages simple,’ says Ms Meehan.
Documenting conversations is crucial
‘We were finding that staff were having meaningful and important conversations with patients, but they were getting lost in the body of their notes,’ says Ms Meehan. Now a symbol against a patient’s name on the white board acts as a prompt to ensure the steps are followed.
‘Talking about what you wish for at the end of life is not going to hasten it,’ she adds. ‘But expressing what’s important, and letting everyone know, can give you a sense of control.’
A second project featured in the report focuses on providing support for 30 care homes, where nurses are often working alone, so may feel isolated and lacking in confidence. ‘What they wanted was someone to stand side-by-side with them,’ says Marie Roberts, lead clinical facilitator for supportive palliative care for care homes at Salford Royal NHS Foundation Trust. ‘They feel they can trust us and ask questions,’ she says. ‘We’re not judgemental but there to take the pressure off, especially in decision-making.’
Through expert coaching and role modelling, care home staff feel more empowered, while the feedback from families has been overwhelmingly positive. Questionnaire feedback shows they have trust and confidence in the service, have been treated sensitively and given good emotional support. ‘It’s made a huge difference,’ says Ms Roberts.
Patients with dementia
Having end of life discussions with patients who have dementia can be particularly challenging. ‘We need to be having these conversations much earlier, when people have capacity, rather than in the last year of life, when you’re more likely to be talking to their families,’ says Sharron Tolman, a consultant Admiral Nurse with the charity Dementia UK.
Improving healthcare professionals’ understanding that dementia is life-limiting would help, she says. ‘They may not be talking to patients because they don’t understand the implications of the illness themselves,’ says Ms Tolman. ‘But if there’s been a conversation, it gives families the strength to think they are basing their decisions on what the person would want.’
Tips for talking about dying
- Make sure you have enough time and privacy. ‘You may also need to raise the subject and then be able to come back to it at a later stage, after the person’s had time to think,’ says Ms Cheesley
- Listen to what your patients and their families are saying. ‘Silence is a useful tool, so don’t jump in with what you think the answer might be,’ says Ms Meehan. ‘Given space, patients and families will open up’
- Be yourself. ‘Think of the person as someone you love and how you might talk to them,’ advises Ms Cheesley
- Document everything, so it’s accessible for other healthcare professionals caring for the person, says Ms Tolman. ‘If it’s not written down, it’s hard to take it into account,’ she says
- Ensure you have some formal training and education around end of life, says Ms Roberts. She also suggests practising with a colleague and seeking feedback. ‘Film yourself if you can. And take time to shadow professionals who have these conversations regularly. It will help build your confidence’
- If a patient begins to confide in you but you don’t feel comfortable, let the patient know you’ve heard them, then explain that you’ll find someone in your team to talk to them. Never just leave it, says Ms Meehan. ‘That might be the only time the person ever says they’re worried. If you shut them down, they may never open up again and the opportunity is lost’
- See advance care planning as a continuing process. ‘There’s this idea that it’s one document, filled in once by a professional, but lots of us change our minds,’ says Ms Tolman. ‘And with dementia, we’re dealing with an illness that has a lot of uncertainty’
- Recognise the signs that someone might be in their last year of life including reduced function and mobility, being withdrawn, eating less and repeated infections that do not respond to treatment
- Above all, don’t be afraid to broach the topic, letting patients know it’s fine to talk about dying if they choose. ‘Some don’t know these kinds of conversations are possible,’ says Ms Roberts
Lynne Pearce is a health writer