Bringing death into the light – learning from MND
Dr Philippa Bayley is manager of Bristol University's Cabot Institute, which develops multidisciplinary research programmes to tackle the challenges of environmental change. In a break from her University role she is organising 'When Death Comes: Creative conversations about dying and living', a month-long art space and series of events in Bristol in September and October this year. 'When death comes' offers people the opportunity to think about, talk about and create work about dying and living. In an exclusive blog post for us, Philippa explains how her mother's death from Motor Neurone Disease prompted her to start the project.
Like many people, I made it into my 30s barely touched by death or dying. Conversations on the topic seemed unnecessary, morbid even, and even the death of my parents seemed remote. Then my mother was given a diagnosis of Motor Neurone Disease, an illness that would take her life in less than four years. Death suddenly became a very present force.
MND has no cure
MND is a tragic and relentless disease for which there is no treatment or cure. It’s a disease that no one would welcome. But my mother, Sabine, saw a gift in MND’s inevitability. We didn’t have the rollercoaster of treatment plans, successes, and failures. There was no way to chase death away from our everyday lives. She spoke about embracing her illness, making peace with it, and about how she wanted her life to end. Much was left unsaid, but we did our best to share what was important and to squeeze wonderful experiences out of her shortening life.
MND crystallises many of the issues that trouble us about good end-of-life care, and in that way we can see people with MND as our teachers. The inevitability and usually rapid progress of the disease means that sufferers have to have conversations about what they want for the end of their life, what a life and death with dignity means, and how they want to be remembered. The Motor Neurone Disease Association (MNDA) has responded to repeated and sustained calls from sufferers and carers for support in this area by producing a ground-breaking ‘End of life guide’, preparing people for the difficult conversations they need to have with those close to them. It is testament to its success that the guide is now being widely used by people outside the field of MND.
The onus is still on the dying person to initiate conversations
However, in the UK the onus is often still on the person dying and their family members to initiate conversations with the professionals who will look after them at the end of their lives. Though my mum had an outstanding GP, the default of many medical professionals is to talk about life, rather than death, potentially leaving important questions unanswered and contributing to people’s anxieties about end of life. The MNDA's guide certainly highlights many of those cases. In the Netherlands, the approach is very different. Every person with MND is allocated a counsellor who will initiate conversations about end of life choices within a fortnight of their diagnosis, and act as an ongoing liaison with the medical care team. This in no way negates the need for excellent medical care; in fact, it is part of excellent medical care. There is still a huge cultural gulf between this approach and the medical approach and support offered in the UK, even as things change for the better.
I can’t help but wonder whether the situation in the UK stems partly from the lack of options at the end of our lives. In the Netherlands, the availability of assisted dying and euthanasia mandates these conversations. That’s not a reason to introduce similar legislation in the UK. But perhaps without these options, and with interventions like assisted dying still classed as criminal acts, we can more easily put end of life options out of our minds and sidestep something we find either too difficult to tackle, morbid, or see as a failure of medicine.
On 11 September 2015, the Assisted Dying Bill will have its first reading in the House of Commons, potentially opening the route for assisted dying for terminally ill people in the UK. Regardless of what you think about the legislation, it provides a welcome opportunity for a more mature and nuanced conversation about end of life care, engaging the public and professionals alike. MND sufferers are some of the most vigorous advocates for the legislation, and I hope their voices will be heard.
Mum's art inspired me
My response to my mother’s death, rather than tackling policy or changing medical practice, has been something much more creative and heartfelt. Taking inspiration from her artistic life, I wanted to make opportunities for people to think about, talk about and share their creative responses to death and dying, loss and grief. This has emerged as an art-space, exhibition and series of events in Bristol called 'When death comes: creative conversations about dying and living'.
Events in the series will open up conversations about whether we should fear our own deaths, how to support children with life-limiting illnesses and their families, and share the genesis of the MNDA’s End of life guide. We’ll also engage people in making and creating, and share different perspectives on end of life through film screening. Events take place in Bristol from 16 September to 11 October 2015. There are opportunities to take part, adding to a body of work that can help us in our own lives as well as inspire and connect with others. We would love you to join; your contributions would be very welcome. Let’s work together to bring death into the light.
Get in touch with the When Death Comes team at whendeathcomes.uk/contact
Find out more about the When Death Comes festival at Whendeathcomes.uk
Download the Motor Neurone Disease Association's End of Life guide.