An 

Amputee Palliative Physician Discusses What Really Matters at the End of Life

In his 2015 Ted Talk, palliative physician BJ Miller asserts that life’s simple pleasures are more powerfully healing on an emotional and psychological level than symptom management as people navigate their final days.

He recounts an incident in his early twenties that, as a result of his own carelessness, found him in a hospital bed badly burned with one arm and both legs partially amputated. Bed-bound in a sterile hospital room, he was forced to confront his own mortality and what the meaning of his life could be.

One day, it snowed, and a nurse “smuggled” a snowball inside so he could have an experience of being connected to the world – primordial and life-giving.

One day, it snowed, and a nurse “smuggled” a snowball inside so he could have an experience of being connected to the world – primordial and life-giving. It was that snowball more than anything else that gave him a sense of place and belonging, and the willingness to be alive in each moment, even though he may not live much longer.

Fast forward a few decades: Miller is now a physician working within that same med-tech system, which places diseases – not people – at the center of care. This, he says, is a design flaw that was built into the very foundation of modern medicine as we know it. This design neglects the importance of human relationships and sensual experiences in favor of biology. Although it is this focus that saved Miller’s life as a young man, he asserts that it is lacking when it comes to treating the whole person.

In light of the increasing regularity of hospital deaths (as opposed to sudden and at-home deaths) in today’s densely populated urban centers, Miller’s purpose is “to bring intention and creativity to the experience of dying… to rethink and redesign how it is we die.”

Because it is not being dead per se, but the suffering that most people fear at the end of days, Miller makes a functional distinction between two kinds of suffering: the suffering that is avoidable, versus the unavoidable.

Because it is not being dead per se, but the suffering that most people fear at the end of days, Miller makes a functional distinction between two kinds of suffering: the suffering that is avoidable, versus the unavoidable. Unavoidable suffering compels us to adjust to circumstance and make peace with the way things are, to see ourselves as part of the bigger picture. Avoidable suffering is that which is unnecessary to endure, and is remediated only in part by the symptom management offered by the medical industry. Avoidable suffering also includes feelings of dislocation and alienation that stem from receiving this kind of treatment.

It is not just those immanently nearing their deaths who are subjected to this unavoidable suffering, but those who are living with terminal illness. Miller offers us several case studies of his patients who are negotiating the undetermined period of time they still have to live; caring for these people is not about extending their lives for as long as possible, but rather helping them fully enjoy the time they have left. Sometimes this means not saying anything when a lung cancer patient takes up smoking again; sometimes it means baking cookies when comfort is needed and words fail. These are the small, sensual things that can remind us at any stage of life that we are still human, and still part of the world. These are the things that individual caregivers can do or permit. The current design of the palliative care industry permits these things, but does not necessitate that they are part of every patient’s care plan. Herein lies Miller’s call-to-arms.