Think back to your first memory of death.
Was it a loved one? A stranger? A pet? Were you sad, happy, or just curious?
My grandmother, nani, died unexpectedly. During the wake, my cousins and I played together in the bedroom where we had been restricted. All through that memory, there’s a strange, dark, terrible sound.
It’s the sound of my mother, keening. I want to never hear that sound again.
Several years later, my grandfather died, surrounded by family and friends. One of his many granddaughters, a physician, pronounced him dead.
His death was a celebration. The clan gathered. There was a feast. A tent was erected for all the visitors who came to pay respects. Someone said, ‘Such luck. He will climb up to heaven on a silver ladder.’
Now lets think about your death.
How do you want to die? Slowly, so that you have time to say your goodbyes, or quickly, so that you never see it coming? In a hospital, at home, or wherever you happen to be at that moment? Do you want someone with you? Do you want to be alone? What are you afraid of?
More than half the people in this country die in a hospital.
The pager beeps at 1 am. I’m a spanking new psychiatry intern on night-float call for medicine. ‘Could you please come and pronounce the patient?’
The nurse looks up from her desk and shakes her head at me as I walk into the room. The patient is an old woman, small and gray. I put my stethoscope over her chest and wait for a full 90 seconds. I check the pupils, the corneal reflexes. Rub the chest. I write the time of death down on a piece of paper. There is no one else in the room. I say a quick prayer before leaving.
Five years later, I sit with a man who has cancer spreading through his bones. ‘I’m done. This is not the life I wanted.’
The family are aghast. They pull out pictures of grandchildren. ‘What do you MEAN palliative care? He could live for months!’
Yes. But he is going to die.
Palliative care does not condemn people to death. Life does.
Palliative care and medical interventions are not mutually exclusive.
What does palliative care do?
It tries to improve the dying person’s quality of life. It provides treatment for pain. It provides treatment for breathing difficulties, for physical discomfort. It does not exclude any treatment that would acutely help the patient, including antibiotics, medicines for appetite and anxiety, even chemotherapy.
It supports the person and the family through denial, anger, grief. It may continue to support them for up to a year after the patient has passed away. The goal of palliative care is to engage the person and the family in making the most of these last moments, days, weeks, months. Not to cure, but to restore.
Hospice is just one mode of palliative care. If a person wants to die at home, palliative care can provide hospice-at-home. Patients can qualify for hospice if their life expectancy is less than six months. They can qualify for palliative care, or be helped by a palliative team, much before that.
An NEJM study showed that patients with terminal lung cancer who began receiving palliative care immediately upon diagnosis not only were happier, more mobile and in less pain as the end neared, but they also lived nearly three months longer. *
What can you do?
Talk about death and palliative care. Talk to your family and friends. Talk about their death and yours. (A death costume is not required, but use one if you must.) Make a plan.
Die as you would live, with choices.