Mental Health Matters: It’s important to talk about living wills now
November 20, 2014
Some 20 years ago, mid career as it turned out, I got the dreaded phone call from Mom: "Dad's dying. He doesn't have much time left."
One cross-country plane flight later, I stood at his bedside in my childhood home and heard my frail, 70-pound cancer- and pain-ridden father ask me for "help" in ending his suffering.
He had-round the-clock home care nursing services, courtesy of an excellent insurance policy no longer available. But this was the pre-hospice era, and all the well-intended nurses could think to do was stand him up on those skeletal legs and "walk" him, in hopes of preventing skin ulcerations in this dying man. Absurd, I thought.
I called his physician, chief of an oncology service at a teaching hospital, who informed me that he would not provide stronger pain medication because while it might relieve his pain, it might also dangerously decrease his respirations.
“Uncomfortable as these discussions can be when you’re relatively healthy, waiting until a medical crisis develops frequently robs you of clear thinking and independent decision making. After all, it’s what you want when you are critically ill, not what your grieving and possibly desperate, panic stricken spouse, mother, father, child or lover might desire.”
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Finally, after much negotiation, he agreed to prescribe a minor tranquilizer for "anxiety control." Dad gratefully accepted this medication and was eased into a deep sleep from which he never awoke.
Why tell this story? Because organized medicine has, mercifully, gradually changed from a "doctor knows best" model of care to a more democratic and participatory exchange. This allows the patient an added element of control over their destination and, at times, their destiny.
To gain that control, however, requires both a clear-minded understanding of the possibilities and, frequently, written documentation of your wishes in a living will, or as it's also called, an advance directive. Advance directives are legal documents that spell out your decisions about end of life care.
While it may seem counter-intuitive, a discussion about end of life care is best conducted when you are healthy and in full possession of your faculties. Discussion might occur with your physician, your lawyer, your spouse, your aging parent or your adult child, among others.
The central purpose of such discussion should be to help patients determine their priorities and to understand what methods will be employed to achieve them.
These discussions entail an understanding that the "living will" you prepare today can change over time. Says Atul Gawande, M.D., in his just published book, "Being Mortal: Medicine and What Matters In the End," "Arriving at an acceptance of one's mortality and a clear understanding of the limits and the possibilities of medicine is a process, not an epiphany."
All options should be on the table, ranging from "do everything to keep me alive" to "protect me from pain and suffering, no matter the outcome."
Questions to consider include a range of issues: "What is a good death?" "Where do I want to die?" "Who will stand for my interests (i.e. a health care proxy) should I become incapacitated?"
Uncomfortable as these discussions can be when you're relatively healthy, waiting until a medical crisis develops frequently robs you of clear thinking and independent decision making. After all, it's what you want when you are critically ill, not what your grieving and possibly desperate, panic stricken spouse, mother, father, child or lover might desire.
I'm reminded of other true stories over my years in clinical practice.
I recall an accident victim hooked up to Intensive Care Unit life support systems who showed no evidence of brain activity. There was no "living will" or end of life care document. The staff felt life support should be removed. The family wanted "everything done" and threatened to sue.
I recall a friend and colleague in his forties with a young wife and small child: He had terminal pancreatic cancer. After finishing one final scientific paper from his hospital bed, his physician, with whom he had previously discussed the matter in great detail, prescribed what turned out to be a lethal dose of painkiller medication.
In the past several years, numerous stories have been written about critical illness care, terminal illness care, hospice care and palliative care. They range from spiritually uplifting anecdotes about tender goodbyes, and a last breath with loved ones at bedside, to near unbearable tales of pain and suffering against a backdrop of family strife causing permanent damage in all the survivors. See Consumer Reports, December 2014.
Modern medicine can prolong life and, sometimes, suffering for months or years. Doctors are trained to treat illness, disease and trauma, not to make independent decisions about "withholding" or stopping life sustaining care. Doctors are expert analysts of laboratory results, not of end of life decisions.
Family and loved ones need not and should not be placed in the position of making critical care or end of life care decisions because their beloved or detested dying family member failed to chart a course when it mattered most.
A living will or advance directive solves this potential problem. Modern medicine has allowed choices and opportunities for grievously ill patients never previously possible. People should take full advantage of them by explicitly documenting their wishes today.
Incline Village resident Andrew Whyman, MD, is a clinical and forensic psychiatrist. He can be reached for comment at firstname.lastname@example.org.