Death is a human constant. Fear of it is another.
It is not the being dead we’re afraid of — it’s the dying. We don’t want to suffer. We don’t want to linger. We don’t want to be in pain. We don’t want our loved ones to be in pain. Who would deny that the sweetest fortune is to die in one’s sleep? Or that to die at home, tucked in one’s own bed, is to die for? We should all be so lucky.
Death comes to everyone. The timing is much less certain. More straightforward is the fact that we are spending more time in hospitals in our final days, suffering through last-ditch efforts that buy us weeks at best, the cost of which too often leaves behind a wretched inheritance of financial hardship.
According to the Dartmouth Atlas Project, which tracks health care trends, more than four in five Americans who die have a long, progressive illness such as cancer, heart or respiratory failure, or Alzheimer’s disease. More than four in five of such patients say they want to avoid hospitalization as their earthly life comes to a close. But that’s not what’s happening.
So desperate are we to prolong our curtain calls that the average time spent in hospice and palliative care, which stress comfort and quality of life once an illness becomes incurable, is falling. The fatally and frightened ill, or their anguished surrogates, are more often choosing needless medicine over comfort care, compounding and prolonging physical torments beyond any sensible point.
As a result, people today are actually sicker than ever as they die. Too late, treatments are discovered to be worse than the illness. Doctors, pressured to press on, practice “exhaustion medicine” — treating until there are no options remaining. Life in its waning days is ignoble, and death with tubes emerging from every orifice is indecent.
At some point in life, the only thing worse than dying is being kept alive.
More precious time at home at life’s end could come sooner if families knew how to talk about alternatives to aggressive treatment. Many conversations can be had about what lengths to go before each of us — as is likely — one day becomes seriously or terminally ill. At least once, such conversations should involve our doctors.
Right-minded politicians recognize that as a nation we are poorly matching treatments to patients’ goals and wishes during serious illnesses and at the end of life. To correcting this imbalance, we need end-of-life counseling — well before our days are done — between ourselves and our physicians. And necessary to such counseling is reimbursement for the physician’s time and guidance.
This sensible and humane idea, withdrawn under duress from the health care reform bill passed earlier this year, is again being proposed in legislation (the Personalize Your Care Act) soon being introduced by Rep. Earl Blumenauer, D-Ore. Never mind the nonsense about government “death panels,” the politically brilliant and terribly misleading phrase issued by cynical politicians and talk-show demagogues trafficking in fear — in this case, our fear of death and dying, and of loss of independence.
Aren’t we all in favor of counseling and palliative care being available to the terminally ill? Shouldn’t cancer patients, as well as people with failing hearts and lungs and minds, get better end-of-life guidance? Why is this idea controversial?
This isn’t about euthanasia. If one wants to fight death to the bitter end, chancing that the end might indeed be bitter, no other should deny that match.
It isn’t even about skyrocketing health care costs — though without some national course correction, our extravagant attempts to cheat death will one day bankrupt us. Americans need remind themselves that there is no constitutional right to life everlasting.
It’s about living life and death with dignity, and learning how to let go. In the words of the enduring Truman Capote: “It strikes me as absurd and rather obscene, this whole cosmetic and medical industry based on lust for youth, age fear, death terror. Who the hell wants to live forever?”
When I become threadworn and brittle, when my days and spirit are dwindling, mercy calls that my end not be excruciatingly slowed by artificial means after any meaningful form of life remains to me. Such a denouement would make a parody of the fullness of my life.
All that I ask — don’t you? — is that my doctors, having been consulted beforehand and compensated for their time, guide me to an easeful death. To deny that to me and to my loved ones would be to add cruelty to my misfortune.
Todd Huffman is a pediatrician at McKenzie Pediatrics in Springfield.
Reprinted with Dr. Huffman's permission. This originally ran in THE REGISTER-GUARD, EUGENE, OREGON on Sunday, Jul 18, 2010