It’s Dying Matters Awareness Week in the UK – a time when charities and health organisations emphasise the importance of talking about death and bereavement.
Addressing death doesn’t come easy to many of us, particularly those whose job it is to keep people alive, so the awareness campaign is much-needed and deserves to spread internationally. Doctors know that talking about dying with patients has never been one of their strengths. It appears to acknowledge failure (see my Cancer World article on what constitutes a successful outcome), and brings the prospect of emotion in a profession where cool detachment has become ingrained.
But it’s not entirely their fault. “Dying” is a curious concept in the first place. The word suggests a gradual transition from the state of life to a state of death. But people facing terminal illness experience nothing of the kind. There’s either life or death, nothing in between. In fact, dying is often about living life to the extreme – whether that be a good experience or a bad one, over minutes or years.
No one demonstrates this better than Dr Kate Granger – the UK doctor who was diagnosed with incurable desmoplastic small round cell cancer in 2011. Since then, she’s been writing honestly, movingly and humorously about living a life within limits. (You’ll be able to ready my interview with Kate in the June issue of Cancer World.)
Anyone who really wants to understand why talking about death is important should listen to Kate and her husband talking in a video she made for Dying Matters. As a doctor, Kate has come to understand what it means for a patient to take bad news home and live with it every day.
She knows that talking helps, and has found a supportive community on Twitter, where 43,000 devoted followers hear about the mundanities, triumphs and challenges of her life – from baking cakes to changing health services through her remarkable “Hello My Name Is” campaign asking health staff to introduce themselves to patients.
For people like Kate, who recently tweeted that she is “teetering on the edge of the cancer cliff and about to fall”, dying is an integral part of living life to the full. So for health professionals not to support patients as they explore the prospect of death can deny the possibilities that exist as well as all the challenges.
Being open about dying with patients can also expose dangerous misconceptions and assumptions that both doctors and patients cling to. Los Angeles doctor Ken Murray addresses this issue head-on the issue in the latest issue of Cancer World, in an article that has already prompted soul-searching in the United States.
Almost all doctors, he says, have seen “futile care” performed. Extremely ill patients are cut open, perforated with tubes, hooked up to machines and assaulted with drugs, he says – and what it generally buys is misery rather than life. Doctors know this, and generally would never chose brutal practices such as cardiopulmonary resuscitation (CPR) for themselves or their families.
So how is it that doctors administer them so often? Why is it that quantity of life is valued so much more than quality? Talking honestly about these issues goes a long way and helps patients and health professionals get facts and preferences straight.
Forgetting about the clumsy word “dying” might help. Considering “life left” instead might make all those working in health stop worrying about being death-stopping superheroes and help patients find what they really want.