What really matters, BJ?
I stumbled across a TED talk delivered by a palliative care doctor by the name of BJ Miller; a triple-amputee following a teenage-years misadventure, larking about on the roof of a parked electric train connected still to the power lines. What could possibly go wrong?
BJ Miller's talk goes by the title of What really matters at the end of life (which is not a question you will notice). It was delivered -- seated, unlike most TED talks -- at what appears to be day two of a health professionals’ conference. If I'm picking up correctly how BJ frames his talk, he seems to be a context-setter for the theme of the day (whatever that may have been back in 2015 when his presentation received the first of its 6,539,793 views -- 90,000 thumbs up and -- remarkably -- 2,900 thumbs down).
The talk draws on BJ's personal history (of course) as well as his professional insights and experience. There is a mild to moderate critical re-appraisal of traditional hospital responses to acute and chronic health crises, coupled to an acknowledgement (again, of course) that without the traditional acute system and its professionals (the stars of everyone's cautionary tale about modern health systems) BJ would probably have died a younger, foolish man.
BJ drew from his palliative care experience to set up a contrast -- which I think is correctly stated -- between disease-focused health systems and people-focused health systems. That chimes with my own experience.
BJ illustrates his manifesto with counter-intuitive anecdotes about what he calls “system design for death": a woman whose health was rapidly failing as a result of a neurological condition who yearned to smoke French cigarettes to experience the sensation of smoke in her lungs as her physiological state declined. In another illustration BJ spoke of the importance of cookie-making in a facility’s kitchen as companionship and a sensory stimulus for people in the late stages of life who may be losing sight, touch, taste, hearing and / or voice but who retain some sensory response -- a memory trigger or sensation in their final phase of life -- in one or more but not all senses; worthwhile in any case therefore.
None of the lessons in designing for death struck me as particularly novel or radical or innovative. But BJ was not making those claims. He was simply relating his experience and thinking about systems / services built around the whole human rather than predominantly or exclusively disease-focused ‘intervention’.
That might have been -- even in 2015 -- provocative at a run of the mill health conference but surely not at a TED-talk health conference? Their communities are, I think, a bit self-selecting. Simply to be someone who wants to attend such gatherings reveals your propensity or willingness to go with the TED-talk flow, if not always be inspired.
As I watched BJ’s TED talk, I thought back to Ian (brother of Anna, son of Alice) who died of AIDS-related system failures. I don't think I ever knew exactly what precise medical cause was written on Ian’s death certificate. But AIDS killed him.
Young -- as many of us were thirty years ago -- Ian died in Milestone House, a hospice established by Waverley Care, in Edinburgh. At its inception the idea of a place dedicated to the end of life, palliative care of people with HIV / AIDS was controversial: all those homosexual men and drug-users who shared their needles (a cause of death of endemic proportions among a cohort of young men of Edinburgh in the late 1980s and early 90s).
“Tut, tut,” said some. It was, they whispered, their own fault. As if …
Ian was a drug-abusing sharer of needles. By the time I first met him, although he was not yet in the hospice, he knew well the risks he took. Even though it was not the case when we met, Ian regarded himself as beyond the point of no return. But he could not -- would not -- give up the hit that heroin gave him. And so, by the time we sat together again, his days were numbered. He would end them in the hospice where I met him for the last time, a few days before his death, his emaciated body finally prone before us on the bed in that peaceful setting. He said his feet were cold, so Susi rubbed his soles while he fell asleep. My paralysed hands would have been of no use or comfort.
The three of us passed those few moments together in the fading light of a kind, gentle, non-judgemental place designed for death. Ian asleep (mercifully I thought then and think still). Susi softly rubbing his feet. Me just being there.
BJ Miller ends his TED talk with these words:
"We can design towards death … you can always find a shock of beauty or meaning in the life you have left. If we love such moments ferociously then, maybe, we can learn to live well, not in spite of death, but because of it. Let death be what takes us, not lack of imagination".
Makes sense to me, BJ. But life comes first.