advanced directives, advanced planning, distributive justice, health care, Hospice, medical ethics, medicine
In an interesting but slightly troubling op-ed in the NY Times, Susan Jacoby argues for the need for advanced planning and directives as a means of cutting costs in the face of end-of-life care. She describes how her mother’s choice of leaving the hospital to live her days out at home brought her comfort, not just because she was home but because she wasn’t costing money to be spent unnecessarily. She uses her mother’s case to discuss the need to be more conscious of our health care choices as we age, both as a means of planning ahead, but, seemingly more importantly, as a cost cutting measure.
To me, this is the challenge we face in American society today. The author is correct in her assertion in the second to last paragraph that while we have choice, we don’t use it when we should. Yet, to argue that our choices should boil down to the question of, “what is it going to cost” is short-sighted. We do not know how we will react when we are truly faced with, “you have a life limiting illness and treatment will most likely not prolong you life.” Many of us when faced with reality might respond differently than when we are healthy. This does not mean a person shouldn’t plan ahead. Rather, as I have shared in other posts, one must be cognizant and conscientious to review every so often what one’s wishes are, because you never know how your thoughts might change.
One additional point. While distributive justice is a legitimate ethical principle, I think the usage of it in individual real life decision making is insensitive. On a grand scale, it is a conversation, but to tell someone we won’t treat you because it isn’t cost effective is placing a monetary value on human life, which is beyond numerical value.
I WAS standing by my 89-year-old mother’s hospital bed when she asked a doctor, “Is there anything you can do here to give me back the life I had last year, when I wasn’t in pain every minute?” The young medical resident, stunned by the directness of the question, blurted out, “Honestly, ma’am, no.”And so Irma Broderick Jacoby went home and lived another year, during which she never again entered a hospital or subjected herself to an invasive, expensive medical procedure. The pain of multiple degenerative diseases was eased by prescription drugs, and she died last November after two weeks in a hospice, on terms determined by explicit legal instructions and discussions with her children — no respirators, no artificial feeding, no attempts to buy one more day for a body that would not let her turn over in bed or swallow without agony.
The hospice room and pain-relieving palliative care cost only about $400 a day, while the average hospital stay costs Medicare over $6,000 a day. Although Mom’s main concern was her comfort and dignity, she also took satisfaction in not running up Medicare payments for unwanted treatments and not leaving private medical bills for her children to pay. A third of the Medicare budget is now spent in the last year of life, and a third of that goes for care in the last month. Those figures would surely be lower if more Americans, while they were still healthy, took the initiative to spell out what treatments they do — and do not — want by writing living wills and appointing health care proxies.
As the aging baby boom generation places unprecedented demands on the health care system, there is little ordinary citizens can do — witness the tortuous arguments in the Supreme Court this week over the constitutionality of the Affordable Care Act — to influence either the cost or the quality of the treatment they receive. However, end-of-life planning is one of the few actions within the power of individuals who wish to help themselves and their society. Too few Americans are shouldering this responsibility.
Of course many people want more aggressive treatment than my mother. And advance directives aren’t “death panels”; they can also be used to ensure the deployment of every tool of modern medicine. They can be changed or withdrawn at any time by a mentally competent person.
But public opinion polls consistently show that most Americans, like my mother, worry about too much rather than too little medical intervention. In a Pew Research Center poll released in 2006, only 22 percent said a doctor should always try to save a patient’s life, while 70 percent believed that patients should sometimes be allowed to die. More than half said they would tell their doctor to end treatment if they were in great pain with no hope of improvement.
Yet only 69 percent had discussed end-of-life care with a spouse; just 17 percent, or 40 percent of those over 65, had done so with their children. One-third of Americans had a living will and even fewer have taken the more legally enforceable measure of appointing a health care proxy to act on their behalf if they cannot act for themselves.
The latter omission is especially disturbing because by 2030, more than 8.5 million Americans will be over 85 — an age at which roughly half will suffer from Alzheimer’s disease or some other form of irreversible dementia. For many members of the baby boom generation — more likely to be divorced and childless than their parents — there may be no legal next of kin.
Without advance directives, even a loving child may be ignorant of her parent’s wishes. My mother remained conscious and in charge of her care until just a few days before she died, but like most women over 85, she was a widow. My younger brother died of pancreatic cancer two weeks before she did. It was an immense comfort to me, at a terrible time, to have no doubts about what she wanted.
My mother drew up her directives in the 1980s, when she was a volunteer in the critical care lounge of her local hospital. She once watched, appalled, as an adult daughter threw a coffeepot at her brother for suggesting that their comatose mother’s respirator be turned off. Because the siblings could not agree and the patient had no living will, she was kept hooked up to machines for another two weeks at a cost (then) of nearly $80,000 to Medicare and $20,000 to her family — even though her doctors agreed there was no hope.
The worst imaginable horror for my mother was that she might be kept alive by expensive and painful procedures when she no longer had a functioning brain. She was equally horrified by the idea of family fights around her deathbed. “I don’t want one of you throwing a coffeepot at the other,” she told us in a half-joking, half-serious fashion.
There is a clear contradiction between the value that American society places on personal choice and Americans’ reluctance to make their own decisions, insofar as possible, about the care they will receive as death nears. Obviously, no one likes to think about sickness and death. But the politicization of end-of-life planning and its entwinement with religion-based culture wars provide extra, irrational obstacles to thinking ahead when it matters most.
As someone over 65, I do not consider it my duty to die for the convenience of society. I do consider it my duty, to myself and younger generations, to follow the example my mother set by doing everything in my power to ensure that I will never be the object of medical intervention that cannot restore my life but can only prolong a costly living death.
Susan Jacoby is the author of “Never Say Die: The Myth and Marketing of the New Old Age.”
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