Let's Die Better

25th May 2016 Posted by: Abby Schlageter

As we all wander towards death, most people are asking how can we live longer?

Just this week Seamus O’Mahony, consultant physician at Cork University and author of The Way We Die Now, wrote a charged synopsis questioning our expectations of the medical profession’s role in extending life and managing death. In his words, ‘Medicine, and our culture, would be healthier and happier if we stopped expecting it to solve our existential problems, if we stopped thinking of our bodies as machines, and if we gave up our fantasies of control and immortality.’

So maybe a more pertinent question to ask is – how can we die better? Can we invite death as part of our lifecycle? And as we look to the future, does technology have any part to play in this?

We spoke to Ivor Williams whose design practice Being and Dying ‘build products and experiences that re-integrate death into life’. Ivor’s voice is woven into the article below as he speaks so eloquently about this emotionally charged subject.

For many people designing for death doesn’t fill them with excitement, discussions on the dying part of life are avoided at all costs in our society. For Ivor, death was just a part of his world from a young age. He explains:

To die now

The experience of dying has changed significantly for many people in the last century. People stopped dying at home and started dying in hospitals. Death became medicalised and something that needed to be fixed at all costs, using any medical procedure possible. The person dying often experiences their last breaths in sanitary corridors, surrounded by beeping and fear, no home comforts in sight. Ivor tells us:

 

And doctors are trained to give people that experience. Doctors are trained to keep people alive, not to let people die well as Ivor points out:

 

The interesting thing is, doctors know lots about dying, many of them experience someone dying after one procedure or another. As Ivor points out, the doctors can give us great insighttohow well the process of dying is working at the moment – and as you will hear, their prognosis is somewhat surprising:



Death and all its emotions

So if 90% of doctors would not have life-prolonging treatments, if they would rather not prolong death but embrace it then we need to start asking what that sort of care will look like.

This is a fundamental shift in the way we currently treat end of life care.

Luckily, people from within the world of western medicine are also speaking out, the great medic Atul Gawande advocates a completely new discussion about ‘Medicine and what happens in the end' in his book Being Mortal.

The UK pioneered this field in the past when Cicely Saunders started the hospice movement in the 1950s, to provide end of life care that encompasses the dying person’s whole life: their friends, family, fears, loves, to minimise pain and bring as much enjoyment as possible to the last stage of life. Ivor explains a little more about hospices and hospitals with respect to end-of-life care:

 


Design for death

The current state of dying definitely doesn’t inspire. As science and technology have advanced to extend our lives, we have taken that logical progression too far – to an unpleasant and dehumanised end.

Ivor thinks the first step to designing for death is to put the person at the centre of it all, we need to design systems and services that are about people.  

He also points out the difficulty in doing this in multicultural countries such as the U.K as different cultures have very different relationships to the end of life. In fact, every person’s experience is different, end of life experiences can’t, and shouldn’t, be generalised:


Technology’s role in dying

Ivor comments that much innovative technology today is about convenience and works because it was a service that was easily generalised to many people, but tech being used for health services is about individuals. It’s not clear how, and if, technology will be able to help with this kind of design challenge. However, there are some simple steps along the way where technology can help things work better now. Small things that I can see would make a massive difference to many people’s lives.

In the last five years I have lost my last two grandparents - bothendof life experiences have been unnecessarily challenging for my grandparents and my parents.

My grandpa suddenly lost consciousness when he was in his early 80s. He was living with a partner at the time and of course as he crumpled to the floor she called the paramedics - they arrived within 10 minutes and immediately used a defribillator which sparked him back to life, he was back breathing with no obvious side effects.

He went on to live another 2 years after this, but sadly it was not a seamless end.

He developed dementia after this episode (potentially due to loss of oxygen to the brain whilst he was out for a few minutes). Quite quickly he had to move to an assisted living complex as he couldn’t look after himself anymore. He was only there for a few months before we were told he would have to move to a care home – apparently he was being a little too forward with the ladies and acting too erratically. So he spent the last year of his life in a care home, visited weekly by his children, becoming less and less of the person we knew.

My grandpa was always a big eater but he chose to end his life by starving himself to death in the care home.

Always a strong-willed man, in many ways I admire his commitment to ending his life then, but I also feel it was not the death he really wanted. My grandpa had signed all the papers that said do not resuscitate him, no CPR, nothing…he was happy to end it all when his body gave way on that day. He never wanted to be in a care home, I don’t think many people do.

It is in situations like this that technology can afford some alternative as Ivor explains here:

 

These small tech interventions could mean that people like my grandpa can die with dignity,when their time comes, and we can all celebrate their life for all its wonder, not the slow and lowly demise mistakenly prescribed in the rush for life.

 

Rethinking dying in the UK

Final words from Ivor on the first steps needed in the U.K:

 

Ivor is involved in a series of different projects in the U.K that are working on these issues. He is Senior Design Associate at the HELIX Centre in London, a collaboration between the Imperial College Healthcare NHS Trust hospitals and the Royal College of Art. The HELIX (Healthcare Innovation Exchange) Centre is situated on site at St Mary’s Hospital in Paddington, enabling designers, technologists and clinicians to be in the same place, so they can work together to find better paradigms for hospital care. End-of-life care is a key focus for the HELIX centre, they are perfectly placed to learn from the insights of those working on and experiencing this right now.

In order to allow people from around the country (and beyond) to contribute easily, the Helix Centre have put together the End of Life Challenge, in conjunction with OpenIDEO and Sutter Health. This challenge allows anyone ‘to share your stories and reflections, emotions, spiritual perspective, and other personal contributions related to dying.’ It is these kinds of open and frank discussions about death that will start to transform our current malaise.

Ivor was also part of the team behind Cove, a Bethnal Green Ventures baby, which allows people to express their emotions through music. Loss, and the lead up to loss, are often hard to express emotionally. Cove allows you to create snippets of music on your phone that encapsulate how you feel. You can use it as a diary for yourself, and also to send to snippets to people when there are no words but you want to share how you are feeling.

Looking back to my grandpa’s death, I can see how this technology could have been useful. There was nothing anyone could have said or done that would have helped soften the loss. Often I (and other family members) didn’t really have anything to say about it, but there were a concoction of emotions rumbling around inside me that it would have been very comforting to share somehow. Technology definitely doesn’t have the answers, but it’s good to see people like Ivor crafting tech to help where it can.

Let’s design ways for people to approach death in the way that they have approached life.

Let’s die better.

Quote

As we all wander towards death, most people are asking how can we live longer – but maybe a more pertinent question to ask is how can we die better?

Links

Ivor Williams

Being and Dying

a charged synopsis questioning our expectations of the medical profession’s role in extending life and managing death

Atul Gawande

HELIX Centre

End of Life Challenge

Cove

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