BJ Miller was the keynote speaker at the RSM conference on the future of palliative care. As a student, he climbed onto a parked train — and the subsequent burns removed both of his legs and an arm. Hear from him directly in his TED talk here.
For months afterwards, he was an inpatient in a no-windows, super-sterile burns unit. All the staff and visitors had to be gowned-up at all times, so it was a very alien, dehumanising experience. BJ had the sweet goal of being closer to nature, and a nurse smuggled in a snowball for him.
Melting in BJ’s hand, this was an amazing sensory /aesthetic experience. It was also hugely symbolic: he saw that it was OK for something to melt and transform — at a time when his own life was melting and transforming in just as dramatic a way.
BJ’s personal encounter with the world of suffering and mortality means he has thought long and hard. Here are some of his ideas — as I understand them. My deep apologies if I haven’t got all of this right!
- The myth of Western medicine is that all things can be ‘fixed’.
With this idea of omnipotence, the prolongation of life / avoidance of death ends up in direct contradiction to the alleviation of suffering.
The education of clinicians focuses on acute ‘curative’ interventions.
- In medical school, medical students learn a dichotomy of normality / illness, within a pathologising convention of contrasts.
This is not ‘the truth’ .
Variation on the ‘normal’ is itself NORMAL
- Even though many more people need long-term support, than are ever going to be cured by doctors, the support of people with long-term conditions is seen as much less important or interesting than ‘cures’.
- All this means that western healthcare systems are much more about ‘doing something’ to someone, than ‘being with’ a person or their family.
In this way, western medicine acts as a poor substitute for a bigger reality.
- This is brought into especially sharp focus for people with a disability.
The disability population / disability activists, understandably, have a deep distrust of the pathologising convention of a ‘split’ between normality / illness.
They also feel often repugnance about the ‘special’ (NOT so special!) treatment afforded to people with disabilities.
BJ questioned — in a positive way — what it is to be human. He discussed how an individual may not be able to literally overcome their disability, but will have to ‘lean into’ their daily reality.
BJ then raised questions / made suggestions about palliative care.
- Traditionally, palliative care is about helping people live until they die, not fearing death, but welcoming inevitable transformations.
The value-laden dichotomy between trying to ‘fix’ individuals / and alleviating their suffering underlies many problems, including:
- the (often difficult) transition for individuals (and families) between curative and palliative care;
- how medical professionals view palliative care clinicians (poorly — as flaky non-scientists);
- and, maybe, how some palliative care professionals are taking the specialty forward (strengthening the ‘evidence base’ so they are no longer seen as flaky non-scientists).
Ideally, moving beyond a dichotomy between ‘curing’ and ‘caring’, would have ALL medicine smelling and feeling like the best bits of palliative care.
But what is the way to move forward? What is the switch?
It’s not going to be sorted by anything in current medical schools, or current postgraduate education.
We need to move from a disease orientation towards a human orientation.
After all, humans are not incidental to medicine.
- More love;
- More awe and wonder. This is usually absent in clinical encounters — but is transformative. And it is all around us;
- More on being comfortable with not knowing what to do.
This is not to throw away or ignore science or medicine.
- Science is necessary, but not the slightest bit sufficient.
Evidence-based symptom management can act well as a first step. After that, individuals and their families can move on to:
- daring to live life;
- revealing themselves;
- recognising fear, pain, and hope.