Katy Butler provides an incisive picture of death and dying in the U.S. [“The Long Goodbye,” interview by Sam Mowe, April 2014]. I worked as a hospice medical director and palliative-care consultant for more than twelve years, administering to thousands of patients and their families.
It’s good that thoughtful people continue to be ambivalent about intentionally hastening death. I do think life can be worth living even after the ability to communicate is gone. Given the way our society still oppresses minorities, the poor, and the disabled, I am relieved to know that euthanasia is outlawed.
Having been a hospice nurse, I am glad to learn about Katy Butler’s work. My two decades with hospice were the best years of my life: the people I met, the homes I was welcomed into, the relief I was able to provide my patients. But it made me sad and furious to watch as for-profits came into the field and misused Medicare funds. Those companies’ sole purpose was to make money, and they twisted the hospice mandate to serve that end. The nonprofits I worked for had only the patient’s and family’s interests in mind. It now seems the whole hospice movement, which is of tremendous value, has been diluted.
The Katy Butler interview on “How Modern Medicine Decreases Our Chance of a Good Death” hit home.
Seven years ago, at the age of seventy-nine, my mom was diagnosed with interstitial lung disease, a rare side effect of cardiac medications. She had already endured many surgeries to prolong her life. She submitted to a lung biopsy only under the condition that she not be put on a ventilator.
After the procedure, she was put on a ventilator anyway. She painstakingly wrote in block letters on notebook paper that she was ready to die and wanted to be removed from the machine. When my sister and I presented her wishes to her internist, he said he couldn’t do that; if an ICU nurse reported it, we would all have been charged with manslaughter.
My fierce mother was weaned off the ventilator and spent the next four months in a nursing home. She wanted to return home but never made it. She was hospitalized again, and a different physician allowed her to die.
When I tearfully asked my internist how I could prevent this horrible scenario at the end of my own life, she said, “The only way to avoid it is not to enter the healthcare system.”
My father was clear of mind toward the end of his life, and he gave specific instructions not to keep him alive with desperate measures. As death approaches, however, the desire to live often overrides the rational mind. My father contradicted his previous directives and opted for a treatment with a poor chance of success.
As he said, “It’s different when the doctor points a finger at you and says, ‘You won’t live a month unless you try this.’ ”
As a geriatrics physician who works with a local hospice organization, I very much enjoyed “The Long Goodbye.” Katy Butler’s portrayal of the politics of dying is quite accurate. I agree that patients and their families need to learn about their choices and assert their wishes.
I’m also a primary-care provider (PCP), and Butler makes a compelling argument as to why PCPs often don’t or can’t discuss patients’ wishes regarding the dying process. I am happy to report, however, that Medicare now pays for its beneficiaries to have annual doctor visits to address end-of-life healthcare directives. And reimbursements to the PCP for these visits are, in fact, much larger than for a routine visit.
In many states there is a form available to record seriously ill or frail patients’ specific wishes regarding treatment. It’s called Practitioner Orders for Life-Sustaining Treatment. When placed in a prominent place in the patient’s home, it informs emergency medical personnel of what life-saving actions are appropriate.
Katy Butler is right when she says that modern medicine has greatly altered the dying process. I believe money is the primary reason for this shift. Medicine has become big business. Doctors will routinely keep a patient alive at all costs, often after any reasonable expectation of a satisfactory life exists.
In 1982, when my mother’s liver cancer was diagnosed, her surgeon informed me that there was only a 10 percent chance she would survive, but he recommended chemotherapy anyway. Incredulous, I asked why. His response was, “We don’t want the patient to give up hope.” Despite the odds, my mother opted for chemo, and I respected her decision. She died not long afterward.
Until we alter our views on end-of-life issues, countless patients will be forced to endure extended and excessive suffering at the hands of the medical profession before they die. Becoming mentally or physically incapacitated with no hope of recovery is far more terrifying to me than death.
I was disturbed by the interview with Katy Butler and the subsequent book excerpt on the hospice death of her father [“The Art of Dying”], who may have died from dehydration. The jury is still out as to whether a death by dehydration is painless. Was her father really suffering prior to becoming dehydrated, or was only the family suffering because it was difficult to care for him?
It worries me as a nurse that a daughter would say of her father, when he appears not to be in any real physical pain, that his death was “belated.” It worries me that so many people believe a life that isn’t “productive” by society’s definition is not worth living or somehow lacks quality. We are all dependent on others in various ways. Some just show it more than others.
The answer is not to let those with physical and cognitive challenges die so that they won’t burden their families. Instead we need government programs such as free or subsidized in-home care.
Katy Butler responds:
Sharon Beth Long and I share a concern for the suffering of the helpless, and I agree that we need better government support for exhausted caregivers, the disabled, and the gravely ill. From there on, however, we part company. First of all, my father died of pneumonia, which a wiser generation of doctors called “the old person’s friend.” Second, the jury is still out as to whether any means of dying is entirely painless. Would Long have preferred that my father die of pneumonia over ten days rather than five?
My father was not in physical pain, but he was in emotional pain. Three years before his death, he told me, “I’m living too long.” I took that pain seriously. I take exception to the suggestion that I considered my beloved father unworthy because he was disabled. My one-armed father was disabled before I was born, and I loved him more openly in his dotage than I did in his intimidating prime. There is a vast difference between living with a stable disability — and having a life experienced as worth living — and with a progressive fatal disease like dementia. My father would have been horrified to learn that medically drawn-out dying is becoming the norm.
In addition to revising our views on death and dying, as Katy Butler suggests, we also need to reexamine how the bodies of our loved ones are cared for after death. The Buddhists say it takes three days for the spirit to fully leave the body. Anyone who has sat with a dead person can attest that changes take place for many hours after the official time of death.
I had the privilege of being with my mother as she died. Afterward her other loved ones and I cared for her body. For the first several hours we kept her eyes closed with small beanbags, and we tied a scarf around her head to keep her mouth closed. After washing and dressing her body, we put dry ice around it. We cooled the room and filled it with flowers.
My mother’s body lay in her own bed for two days while friends and family came to pay their respects. Finally we placed her unembalmed remains in a casket for burial.
It is perfectly legal in most states for anyone to do this. Most myths and fears we have about corpses are fostered by the funeral industry. There was no smell, no decay, and no health hazard in keeping my mother’s body at home — which, of course, is what all families used to do. Embalming only came into practice during the Civil War, when bodies had to be shipped long distances. It is an unnecessary and horribly invasive procedure.
All winter I have been struggling with a cancer that threatens to kill me. In a hopeful moment I decided to resubscribe to The Sun as a special treat. I was looking forward to its fine writing.
Today my first issue arrived, and it’s all about death and dying. Believe me, when you are facing imminent death, shallow, self-absorbed “experts” yapping on the sidelines are not helpful or edifying. Armchair philosophizing about death is a luxury only the healthy can afford.
Sadly it seems that The Sun is not what I need right now after all. The writing is indeed excellent, but the general tone has become far too depressive. I can — and will — deal with my aging and death on my own.
Last month I flew across the country to support my mother, who had fallen into a deep depression over my father’s progressing dementia. I brought the April 2014 issue with me, without having opened it before I left. I had no idea that it would grant me patience and compassion I otherwise wouldn’t have had.
The interview with Katy Butler, Stephen and Ondrea Levine’s words of wisdom on the nature of mind [excerpt from Who Dies?], and Mark Brazaitis’s essay on being on a locked ward [“Locked in to Life”] all gave me a feeling of serendipity during this challenging time.