May 17

Dying Matters

Posted: 4 May 2017

Bill Mumford - Dying Matters

In the run up to Easter BBC Radio Cumbria hosted a series of conversations on the theme of death and dying and I was invited to address the question: “What is a good death?” 

For those of us of a certain age we remember Pete Townshend’s youthful plea in the Who’s song My Generation: “I hope I die before I get old!” Perhaps he meant old enough to care?  When are we old enough to think about death and dying? That date keeps receding the older I get! 

We know as a society people are living longer and we also know that sudden death is quite rare these days. The length of time people are unwell, possibly morbidly unwell with a number of conditions, for their last years is getting longer and longer.  Medical interventions enable to live longer despite our ageing frailty and, sadly, nearly two thirds of us spend our last breath in a hospital bed. I am beginning to think Pete Townshend had a point after all!

A book I should recommend as essential reading for everyone is Being Mortal by Atul Gawande, who, as a compassionate physician, provides great insights:

Being mortal is about the struggle to cope with the constraints of our biology, with the limits set by genes and cells and flesh and bone. Medical science has given us remarkable power to push against these limits... But again and again, I have seen the damage we in medicine do when we fail to acknowledge that such power is finite and always will be. We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being.

Gawande goes on to argue:

And well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: what is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?

Clearly then the answer to the question when is the right time to think about death and dying is right now.

Dying Matters Awareness Week – from 8 to 12 May - is a national public awareness campaign organised by the National Council of Palliative Care. You can find out more by looking at the excellent website: http://www.dyingmatters.org/whatcanyoudo

Across the country there will be many events - even fun events - to encourage us to overcome our understandable reluctance to discuss death and dying and encourage open conversations. Of course, we should all be thinking about what we should do ourselves: make a will, plan for our funeral, decide future care wishes and perhaps sign up for organ donations etc. For all of us working in health and social care settings we should also be thinking about how do we help those we support embrace their fears and clarify their hopes, to facilitate their understanding of the ‘trade-offs’ that are important to them.

Going back to the radio interview, I made the point that palliative care is less about a good death and more about a good life - right to the very end. The interviewer then asked about how hospice colleagues cope with the emotional and sometimes spiritual challenge of supporting people at end of life, day after day. My answer was what they always tell me: “It is a unique privilege - we never forget we only have one chance to get it right”. 

I finished with a lovely anecdote shared with me by Dr Teresa Storr, the Consultant in Palliative Medicine at Eden Valley Hospice, who has observed many times that someone who is very close to death often tries to pass on a “gift” to their loved ones by their side. A gift of a smile, a squeeze of the hand, a way of offering reassurance they are ok. A good death.

If you’re interested in learning more about end of life care, Skills for Care has a range of resources that can help you and your workforce develop your skills and knowledge.