BJ Miller’s TED Talk from September 30th, 2015
“Those who enter healthcare truly mean well. But we who work in it are also unwitting agents for a system that too often does not serve. Healthcare was designed with diseases, not people, at its center. Badly designed. 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.”
This is a universal issue: To rethink and redesign how it is we die. To be a patient means “one who suffers” but there is suffering that harms and suffering that is necessary. The latter of which is where healing happens, where care giver and care receiver unite in compassion–suffering together. On the systems side, a different suffering is invented and unnecessary. A caregiver is one who cares and one who should relieve suffering–not add to the pile.
Palliative care is fundamental but poorly understood. It is not limited to end-of-life or hospice care. It is simply about comfort and living well at any stage. A palliative physician acts as a reflective advocate as much as a prescribing physician. Loss is one thing, but regret, quite another. Patients with life-threatening diseases need not only protection but the support to figure out what is best for ourselves over time. It’s a shift in perspective. Perspective, that kind of alchemy we humans get to play with–turning anguish into a flower. Hospice centers welcome death with warmth rather than repugnance. Hospitals are filled with blinking lights that don’t stop even when the patient’s life has, body is whisked away as if they never existed. In the name of sterility, hospitals assault our senses with numbness, with anesthetic–literally the opposite of aesthetic.
I revere hospitals for what they do–my cousin formerly living with a calcified tumor is alive because of them. But we ask for too much of them. They are places for acute trauma and treatable illness. They are not a place to live and die. We need to feel just a part of this planet in this universe which may matter more to some than whether they live or die.
In critical and chronic care, there are many people who are ready to die. Not because they had found some final peace or transcendence, but because they are so repulsed by what their lives had become. There are already record numbers of people living with chronic and terminal illness. We need infrastructure dynamic enough to handle seismic shifts in our population. The key ingredients are policy, infrastructure, training, systems.
- Tease out unnecessary suffering
- Tend to dignity by way of the senses “the aesthetic realm”
- Lift our sights on well-being, beneficience
Research has found what is most important to those close to death: comfort–feeling unburdened and unburdening to those they love; existential peace; and a sense of wonderment and spirituality. Sensuous, aesthetic gratification, where in a moment, in an instant, we are rewarded for just being. So much of it comes down to loving our time by way of the senses, by way of the body–the very thing doing the living and the dying. As long as we have our senses–at least one–we have the possibility of accessing what makes us feel human, connected. Primal, sensorial delights that say the things we don’t have words for, impulses that make us stay present, no need for a past or future.
We must make healthcare about living, making life more wonderful rather than just less horrible. This is the distinction between a disease-centered an a human-centered model of care. Caring can become a creative, generative, even playful act. This does not mean taking light death or mandate a way of dying. There are mountains of sorrow that cannot move, and one way or another, we will all kneel there. We must only make space–physical, psychic–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.
We cannot solve for death, but we can design towards it. Parts of our lives die early on, and that’s something we can all say one way or another. I’ve designed my life around this fact, and it has been a liberation to find 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.