In the health and care sector, I am encouraged by how much more we are talking about death. Having worked in hospice and palliative care for many years, I am glad to see that we are moving away from what was often the norm in the mainstream: hushed conversations sometimes conducted in euphemisms, a ‘doctor knows best’ culture and the perception that death is a failure of medicine that must be fought off at all costs. In wider society too, death has become almost trendy: we openly grieve for celebrities on social media, ‘death cafes’ have sprung up around the country and death is a regular feature on our TV and film screens.
Anything that gets people talking more about the end of life is to be welcomed. In all this noise, however, I worry that the issues that are of greatest concern to people are not being heard. In our eagerness to talk about ‘death’ in general, we have forgotten about the ‘dying’ part.
For instance, the theme of this year’s Dying Matters Week was ‘Are We Ready?’. Topics included funeral costs, memorialisation and grieving for a pet. Initiatives like this are a fantastic way to highlight the importance of thinking about your death, but, if I’m honest, when I read the topics my heart sank. Because it’s missing a trick; it’s missing the opportunity to inform people about the practical steps they can take to have a better death. Is it surprising that people find it easier to talk about their pet dying than face their own deaths? No. But is it what really makes a difference to the quality of someone’s end of life experience? No.
Perhaps there is a reluctance to talk about the actual ‘dying’ part because it forces us to admit an inconvenient truth: that not everyone has a ‘good’ death. If we really want to prepare people for the end of life, we cannot gloss over the difficult bits. The way we die can vary hugely depending on the conditions we are dying from, the amount and quality of support available and the settings we are dying in.
If we want people to feel ready for the end of life we have to be honest about this and reassure them that there are practical ways that allow them to think through and document what matters to them, helping to ensure that their dying experience is a better one. All of us working within end of life have a duty to educate and support individuals to ask questions so that they can make decisions that are right for them and have the opportunity to discuss them with the people close to them.
I have just begun my term as Chair of Compassion in Dying, a national charity that has supported over 44,000 people to plan for the end of life. I’m determined that we tell the truth about the full range of those experiences. The people who call our free Information Line have sometimes witnessed a family member or friend receiving unwanted or futile interventions at the end of life, or dying in pain or with poorly controlled symptoms. They may have seen a media story about someone in a minimally-conscious state with little prospect of recovery and thought “I wouldn’t want to be kept alive in that condition”. Compassion in Dying helps people translate these concerns into a care plan that is legally binding and must be followed by doctors, enabling individuals to remain at the centre of decisions about their end of life care and treatment. This can involve making an Advance Decision to Refuse Treatment, a Lasting Power of Attorney for Health and Welfare, and/or an Advance Statement.
Through these interactions Compassion in Dying has learnt what people want most when it comes to the end of life: open, non-judgmental conversations; clear and honest information about the dying process and treatment and care options; recognition that people have different priorities; and professional support to put plans in place before they reach the very end. We can have a real say over the treatment and care we receive during the transition between life and death. We should be using every opportunity to empower individuals to make use of the rights and choices available to them.
Thursday marked NHS England’s ‘What matters to you’ day, aiming to “shift the focus from ‘what is wrong with you’ to ‘what matters to you’”. At the end of life, attempting to cure ‘what is wrong with you’ is futile, but we still have a real opportunity to address ‘what matters to you’. Death is guaranteed but a ‘good’ death is not. We need to be honest about this and encourage discussions that get to the heart of what people care about most. We need to tease out their worries and priorities and give them the facts so they can be empowered to make informed decisions about the care and treatment that’s right for them. This is what gives people the best chance at having a ‘good’ death – not sugar-coating it. We can’t let ‘dying’ get lost in all this talk about death.
Dame Barbara Monroe is chair of Compassion in Dying