About the talk and the speaker
TED2015 | March 2015
About the talk
At the end of our lives, what do we most wish for? For many, it’s simply comfort, respect, love. BJ Miller is a hospice and palliative medicine physician who thinks deeply about how to create a dignified, graceful end of life for his patients. Take the time to savor this moving talk, which asks big questions about how we think on death and honor life.
About the speaker
BJ Miller · Palliative care physician
Using empathy and a clear-eyed view of mortality, BJ Miller shines a light on healthcare’s most ignored facet: preparing for death.
My thoughts after watching the talk
No flashy presentation slides, no “wow” moments intended to create an outsize effect, just a man talking about the way we live and die – yet this talk moved me more profoundly than any other. BJ Miller, a doctor and triple amputee, used his own experience to pioneer a new model of palliative care at a small, quirky hospice in San Francisco. Here, he cogitates over coming to terms with his own disability, and helping his patients do the same with their terminal illnesses.
It was awe-inspiring, to say the least. The first point that caught me was his assertion that healthcare was designed with diseases, not people, at its centre. Hospitals are places for acute trauma and treatable illness; they are no place to live and die. Indeed, advances in Medicine are driven by the fervour of doctors and researchers, fuelled by an obsession to treat and cure the dizzying spectrum of malicious diseases. The primary goal of Medicine, therefore, traditionally concerns itself solely with diagnosis and treatment, neglecting the vital concept of ‘wellbeing’.
It is a theme that runs throughout Miller’s talk, towards the end of which he calls for a “human-centred” rather than “disease-centred” model of care, where “caring becomes a creative, generative, even playful act”, and “aging and dying can become a process of crescendo through to the end”. This allusion to the human element, ascribing significance to the aesthetic side of life, is hardly considered in Medicine, especially when confronted with chronic conditions that we are – as yet – helpless to treat. It is perhaps the most overlooked yet most important aspect of Medicine.
Over the course of history, paradigm shifts have occurred, shifting Medicine from a paternalistic approach with the prescriptive commands of doctors accepted without objection, to an almost participatory undertaking, where patients are consulted on treatment options and increasing levels of respect are being accorded to patient autonomy. Notwithstanding this, Medicine is still fixated intensely on combatting disease. Arguably, this is rightly its main focus. However, perhaps it is time for us to overhaul past notions of pure medical treatment to devoting more resources to medical care – and then to discover the most ‘wonderful’ forms of care, the best ways each individual would wish to spend their waning days, such that, as Atul Gawande simply puts it, they can have “a good life to the very end”.
Miller’s trenchant talk touched me in another way. When he was hospitalised, one day a nurse smuggled in a snowball for him. In a few simple words he described the experience, yet I could vividly feel the sensation – and even the inexplicable emotion – of that moment. “I cannot tell you the rapture I felt holding that in my hand, and the coldness dripping onto my burning skin; the miracle of it all, the fascination as I watched it melt and turn into water,” he said. “In that moment, just being any part of this planet in this universe mattered more to me than whether I lived or died.”
I was overcome with an intense déjà vu. At first I could not identify the actual incident, I just felt a strong emotional association as his words reached me. Then it came to me. I had been confined in the ward for weeks, never once leaving the glass doors. After a long dry spell, one day it began to rain. I had always liked rain, and in that moment, the raindrops cascading down felt like the most resplendent thing. Unlike Miller, my ward was not windowless, so I stood at the window for an uncharacteristically long time, just gazing out at the falling rain. I could almost smell the rain. I could not tell you why such a commonplace thing as rain felt so excruciatingly beautiful to me in that moment. Yet it was.
If we love such moments ferociously, then maybe we can learn to live well – not in spite of death, but because of it.
BJ Miller, TED2015
When we are in pain – wrenching pain, prolonged pain – when grief and loss suffocate us, our perceptions and priorities change. Miller’s words echo in my mind, “Parts of me died early on, and that’s something we can all say one way or another. I got to redesign my life around this fact, and I tell you it has been a liberation to realize you can always find a shock of beauty or meaning in what life you have left, like that snowball lasting for a perfect moment, all the while melting away. If we love such moments ferociously, then maybe we can learn to live well – not in spite of death, but because of it.”
I used to be enthralled by the simple, everyday beauty I witnessed – or rather, felt. I was always passionate, deeply committed, unwavering in what I believed in. I had a fire for learning, a rapacity for reading, a penchant for writing. Standing at the window, that day in the hospital, I realised how all of that had been extinguished – blotted out completely – by my illness. I realised how pain could transform and mutilate us, till we became unrecognisable even to ourselves.
I hope that this will stay with me. I hope that I will never forget the pain, so that I may one day understand the pain of my patients and their loved ones, and empathise with their losses, their hopes, and their dreams.
My favourite quotes from the talk
… healthcare was designed with diseases, not people, at its center. Which is to say, of course, it was badly designed. And nowhere are the effects of bad design more heartbreaking or the opportunity for good design more compelling than at the end of life, where things are so distilled and concentrated. There are no do-overs.
For most people, the scariest thing about death isn’t being dead, it’s dying, suffering. It’s a key distinction.
I revere hospitals for what they can do; I am alive because of them. But we ask too much of our hospitals. They are places for acute trauma and treatable illness. They are no place to live and die; that’s not what they were designed for.
Next day, one of my nurses smuggled in a snowball for me. She brought it in to the unit. I cannot tell you the rapture I felt holding that in my hand, and the coldness dripping onto my burning skin; the miracle of it all, the fascination as I watched it melt and turn into water. In that moment, just being any part of this planet in this universe mattered more to me than whether I lived or died. That little snowball packed all the inspiration I needed to both try to live and be OK if I did not. In a hospital, that’s a stolen moment.
We know, for example, from research what’s most important to people who are closer to death: comfort; feeling unburdened and unburdening to those they love; existential peace; and a sense of wonderment and spirituality.
Seriously, with all the heavy-duty stuff happening under our roof, one of the most tried and true interventions we know of, is to bake cookies.
Here, this gets right at the distinction between a disease-centered and a patient- or human-centered model of care, and here is where caring becomes a creative, generative, even playful act.
There are mountains of sorrow that cannot move, and one way or another, we will all kneel there.
… I am asking that we make space — physical, psychic room, to allow life to play itself all the way out — so that rather than just getting out of the way, aging and dying can become a process of crescendo through to the end.
Parts of me died early on, and that’s something we can all say one way or another. I got to redesign my life around this fact, and I tell you it has been a liberation to realize you can always find a shock of beauty or meaning in what life you have left, like that snowball lasting for a perfect moment, all the while melting away. 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.