I’m going to present four linked multimedia pieces at my show on Ultimate Living at Wandsworth Arts Fringe (more details below). Together, they tell the story of how my intimate knowledge of my dad’s love of skiing meant that I could help him die well.
Helping my dad die was probably the most important thing I have ever done.
Helping him also helped with my own bereavement.
I want to share my own approach to try to help other families, and other patients. Especially since there is going to be a tidal-wave of death, as the demographic bulge of baby-boomers start to die.
I’m not suggesting that family collaboration can replace specialist staff.
Even though I do think it’s important to recognise that the specialist staff do have some limitations. The Royal College of Physicians has identified that “the timely, honest conversations about their future that patients want are not happening.” This is the case even though proactive discussions are “fundamental to effective clinical management plans.”
There is already work going on to help junior medical staff with this in the Second Conversations project.
But maybe there is an even more fundamental problem than learning some ‘transactional’ communication skills. It’s shown in the shock many doctors feel when they go over ‘to the other side’, and become a patient.
This is well exemplified in Keiran Sweeney talking about the poor relational competency of staff after his own terminal diagnosis. Sweeney clearly said that it’s “not good enough” and that the doctors were “not brave enough” in talking to him.
When and where is this sort of thing discussed?
Recent Compassion in Dying research challenges the idea that death is a taboo – that it’s too awkward or difficult to talk about, or that people simply don’t want to. Compassion in Dying “have found the opposite – people with terminal or life-changing conditions, and those around them, want and need to talk about death and dying.”
BMA qualitative research in 2014 showed that the impacts on families and loved ones of end-of-life care and after a death were a major concern for the majority of the public. Doctors were less likely to mention families as important.
So how, practically, to move this forward?
Sweeney talks about “rediscovering the humanity in a patient” and how this can be “infinitely rewarding” for healthcare professionals. Manek found that the best thing she could do for one patient was to bring buckets of KFC.
Manek has written that good end of life conversations are “more about life than any other conversations I had ever had with my patients”.
She is concerned that doctors are “failing to hear what really matters to [patients and families] at a time when their choices should be most respected”.
This is where my WAF work comes in.
Not everyone is as keen on skiing as my dad was – but that’s the point.
Individual families are experts on themselves.
Let’s allow, support, facilitate this!
ULTIMATE LIVING WITH WAF
- Black Run: I knew my dad wasn’t interested in anything which wasn’t fun – so I had to make dying fun for him. I asked about his last ‘Black Run’: as something difficult, that you do by yourself, and fun. He told me about how he hit Black Ice – and then you cant stop or turn. We agreed it was a great analogy to help him.
- After he’d stopped talking, my dad somehow got out of bed to stand and ski: Deathbed Skiing
- I witnessed a heart-stops-last cardiac arrest when my dad took his last breath. To show this, there are lights activated by the sound of clapping; plus, projected behind me. an acorn germinating (fueled by my tears) to show that there truly is a Cycle of Life.
- After he died, I washed my dad’s body. The warm water means that the small tree which grew from the acorn, grows into a large fruiting forest. Very definitely, Ultimate Living!