As a consultant in palliative medicine, currently working at the North London Hospice, I’ve been caring for people at the end of their lives throughout my career, in my case for nearly 20 years.
I soon realised that I was more interested in the holistic wellbeing of my patients than the scientific aspects of medicine, so I knew palliative care was the best fit for me. I’m particularly passionate about end-of-life care (NHS, 2022), supporting professionals from other specialties to identify people who may be nearing the end of life and ensuring they can live their best life right up until the end.
Over the years, I’ve talked to many people living with life-limiting illness, those close to them, and health professionals caring for them. Of course, I’ve also had personal experiences of life coming to an end, as have my friends and family. Through these experiences, I’m increasingly aware that lack of open discussion about death (Nelson et al, 2021) hugely exacerbates the inevitable distress caused by terminal illness and bereavement.
“We’re all capable of listening, which can provide comfort in itself”
I was honoured to be asked to support this year’s Dying Matters Awareness Week (6-12 May) campaign. Hospice UK’s campaign is working to create an open culture in which we’re all comfortable talking about death, dying and grief.
Every year, it is an important opportunity to take another step on our long journey towards acceptance of dying as just another perfectly normal and inevitable phase of life. The sadness associated with death is of course unavoidable, but if we can overcome the current taboos, there’s a lot we can do to support one another and to minimise other sources of distress.
This year’s theme is “The way we talk about dying matters”. It is close to my heart, not only because I love talking, but because it is a way of connecting, learning and a way anyone can provide support to others.
Working with Dying Matters I have put together my top tips on talking about end of life. They are aimed at everyone – whether that’s people living with terminal illness, people close to someone nearing the end of their life, or health and social care professionals.
Don’t be afraid to talk about death and dying. Most people living with a potentially life-limiting illness or advanced age understand the end of their life may be approaching and are usually keen to share their hopes and fears.
Once we know what these hopes and fears are, we can start to help. If my patients have worries about the future (which they quite often say they don’t), they are usually about symptoms, their care or their dependents, which can almost always be addressed in some way. At the very least, we’re all capable of listening, which can provide comfort in itself.
Talking about death might make people emotional, and that’s OK. It’s very unlikely that you will upset someone by exploring their hopes and fears for the future. When people are affected by death and dying either personally or by association, they will of course be experiencing sadness.
We often worry about upsetting people unnecessarily. It is true that people may well show emotion during these conversations, but it’s important to understand that this doesn’t usually mean you’ve upset them. It means they feel comfortable sharing the emotions they’re carrying around all the time with you, and that you are successfully showing them care and support.
It is important to talk about hope in the right way. It is always possible to find realistic hopes and goals to work towards, but beware of giving false hope, which is very damaging (Eijkholt, 2020).
We often tell ourselves that by avoiding acknowledging the reality of approaching death, we are minimising distress and avoiding the risk of harm from losing hope. It feels easier, but it actually prevents acceptance and takes away potential realistic opportunities.
Also, most people are very good at spotting when people aren’t totally honest with them, which can be upsetting and damaging to relationships. It is always much better to be honest so you can focus on realistic and achievable goals.
I hope that my reflections will empower at least a few readers to have more meaningful conversations about death and dying. My favourite way to start a conversation like this is simply to ask: “How are you feeling about the future?” I’d love as many people as possible to ask someone affected by life-limiting illness this question during this awareness week. It could be a friend, relative or patient. Let me know how it goes!
Lucy Pain is a consultant in palliative medicine, North London Hospice
References
Eijkholt M (2020) Medicine’s collision with false hope: The False Hope Harms (FHH) argument. Bioethics; 34: 7, 703–711.
Nelson A et al (2021) Public Attitudes to Death and Dying in the UK. Marie Curie.
NHS (2022) What end of life care involves. nhs.uk, 6 April (accessed 2 May 2024).