Yves here. I had mentioned yesterday that Maggie Mahar, author of the must-read book Money Driven Medicine, had an important post in the works on how doctors and medical facilities can refuse to comply with the clear wishes of elderly patients and their families. By happenstance, her post was published the day after we ran our reader, Mark L’s account of the considerable difficulties his mother had in getting her husband released from a “rehabilitation center” that was doing him more harm than good.
The story Maggie tells is longer and in many ways more alarming because it gives a more detailed picture of how the deck is stacked against aged patients and their relatives.
By Maggie Mahar, a financial journalist who wrote for Barron’s, Time Inc., The New York Times and other publications. (Her first book, Bull: A History of the Boom and Bust 1982-2003 (Harper Collins, 2003) was recommended by Warren Buffet in Berkshire Hathaway’s annual report. For more on her books, click here. She also writes regularly at Angry Bear. Originally published at The Health Beat
Thanks to better diets, exercise, and advances in medical knowledge, more and more of us are living to four score and seven. But the downside is that in too many cases, our bodies are out-living our minds. As I note in the post below, since 2011, 40% of the increase in Medicare’s outlays can be attributed to spending on Alzheimer’s patients.
Why is the incidence of Alzheimer’s (AHD) spiraling? Because we are less likely to die of heart disease or strokes, millions of Americans are living long enough to be diagnosed with senile dementia. One could say that longevity is the proximate cause of Alzheimer’s.
Because women live longer than men, they are more likely to fall victim to AHD, the most common form of dementia. If a woman lives into her 60s her risk of being diagnosed with Alzheimer’s at some point over the rest of her life is 1 in 6. By contrast, for breast cancer, her risk is 1 in 13. By 2050, the number of people age 65 and older suffering from Alzheimer’s may well triple, rising from 5 million to as many as 16 million.
Why then don’t we hear more about this scourge? Because at this point there is little or nothing that doctors can do to stop it. The Mayo Clinic’ website explains: while some drugs can “temporarily improve symptoms of memory loss and problems with thinking and reasoning . . . these treatments don’t stop the underlying decline and death of brain cells. As more cells die, Alzheimer’s continues to progress.”
More than half experience side effects. And they’re expensive, costing anywhere from $140 to more than $656 monthly..
Even a small benefit or chance of improvement might be worth it if Alzheimer’s drugs were risk free,” Consumer Reports observed. “But they are not. They can cause side effects such as insomnia, nausea, muscle cramps, diarrhea, and reduced appetite, all of which can be troublesome for people with dementia.” Occasionally, the drugs may cause more serious side effects such as internal bleeding and a slowed heart rate that could be potentially dangerous.
Meanwhile, the average Alzheimer’s patient lives 8 years—and 40% of those years are spent enduring the most severe, late stages of that disease. Some patients linger for 20 years. This is what makes Alzheimer’s so expensive.
The Need for Long-Term Care
At this point, we cannot cure senile dementia, but we can reduce the suffering that patients and their families endure by creating the long-term palliative care system that millions of baby-boomers and many of their parents will need. First, this means figuring out how to fund such a system. Medicare pays for some treatments, but it does not cover long-term care.
Up until now relatives have provided much of that care at home, but increasingly, the burden is becoming too great for aging spouses. And even if their children live close to home, daughters as well as sons have jobs that they cannot leave.
Medicaid will pay for nursing home care, but only after the patient and spouse spend down nearly all of their resources. (New laws now make it very difficult families to transfer assets to heirs when they see Alzheimer’s coming.) And even when families exhaust their assets, nursing homes and hospices often do not provide the combination of palliative care and skilled nursing that patients require.
Finally, and most importantly, we need to think about how to ease the path to death. Here, I am not talking about euthanasia. (In a later post, I will address ”aid in dying” –a.k.a. “physician-assisted suicide”–and explain why some palliative care specialists have had second thoughts about that solution.)
In this post, I am focusing on reducing the fear, the panic, the overtreatment, and the medical flailing about that makes what I have called “the American way of dying” so traumatic. Death always will involve loss and suffering, but it does not have to be impossibly cruel, and it does not have to wreck families.
Aggressive Medicine Can Leave Patients Stranded, Phantoms of their Former Selves, Waiting to Die.
In Knocking on Heaven’s Door: The Path to a Better Way of Death, Katy Butler describes what happened when a doctor insisted on outfitting her father with a pace maker a year after he had suffered a stroke that shattered his mind.(This month (May 2014) you can download a digitalized version of this book,, via Amazon, for $2.99.)
At 80, Jeffrey Butler’s personality and his brain were dissolving—and he knew it.
While he was still able carry on a conversation, his daughter reports that he told her he felt his wife would have been better off if the stroke had proved fatal. “‘She’d have wept the weep of a widow,’ he told me in his garbled, post-stroke speech, in the fall of 2002. ‘And then she would have been all right.’”
Katy added: “It was hard to tell which of them was suffering more.”
A year after the stroke, Jeffrey Butler needed a hernia operation. Dr. Rogan, the cardiologist who was asked him to clear him for the surgery, told his wife that first, he needed “a pacer.: Otherwise, his heart might stop under the stress of general anesthesia.”
This was the second time that Dr. Rogan had seen Butler. A year earlier, when Jeffrey Butler was still vigorous and intact, Rogan had recommended the device. But at the time Butler said that, unless was absolutely necessary, he wasn’t interested. His internist, Dr. Fales, agreed– he considered the pacemaker overtreatment.
But now Dr. Rogan presented the pacemaker not as a choice, but as a necessity. As a cardiologist, he was focused on the part of the patient’s body that he could fix—the heart.
Valerie Butler agreed. “I wasn’t ready for his dying,” she later told her daughter. “I still hoped we could improve things.” Of course, senile dementia is a progressive, chronic diseases that does not “improve.” But Hope trumped Acceptance.
She did not call Dr. Fales. He was notified of the decision by Fax. He tried to intervene, but without success: “Because the surgeon and the cardiologist went a couple of extra years in their training, my opinion didn’t weight in heavily, even though I knew Jeff better than anyone else,” he later told Katy Butler.
Often a family doctor who has known an elderly patient for years is in the best position to understand his or her desires and fears. Before letting a specialist who has seen the patient a few times make a decision, the family should consult the family should consult that doctor and/or a palliative care specialist trained to listen to patients and their families, ask questions, and help them make difficult decisions.
Years later, Fales also told Katy Butler that if her father had not received the pacemaker, “finally, his heart would have just stopped beating. He would have died peacefully. But nowadays we don’t get to see this natural course much, because everyone gets devices.”
“Not having a pacemaker would not have guaranteed my father a quick or easy death,” Katy concedes. “But having a pacemaker deprived him of his best chance of one.”
If Butler had been 65 when he suffered a stroke, a pacemaker that helped him through the surgery would have been appropriate. At 65, his mind was still intact. But, as the Butlers would later realize, for an 80-year-old in his condition, the implant was totally inappropriate
Yet in 2002, there wasn’t time to consider other options–or so it seemed.
Butler explains: “A sense of urgency, combined with the assumption that the treatment offered has no alternatives and no downsides are common ingredients in medical decision, later regretted, involving the frail and the elderly.”
Thus her father fell victim to what some call “Fast Medicine,” a term invented by Dr. Alberto Dolara, an Italian cardiologist. In 2002 he published an essay comparing “fast medicine” to “fast food.”
“It involves a barrage of rapidly prescribed tests and treatments, ‘fixing’ rather than healing,” Butler writes.. “Death by fast medicine is protracted, traumatic, and expensive.”
Slow medicine, like slow food, values restraint, calm and above all, time: time to weigh the physical and emotional costs of medical treatment; time to evaluate new methods and technologies; time, as the end of life approached, to stop frenetic doing, and to take care, instead, of the broader needs of patients and their families . . . . .
A Slow Death
Butler’s heart was weak, but the pace-maker would keep his body alive for five more years– five long summers and five long winters– as he slid “into dementia, incontinence, near-muteness, misery and helplessness.”
“My father’s strung-out dying and my mother’s suffering were the consequence of our culture’s idolatrous, one-sided worship of maximum longevity,” Butler observes.
Ultimately, the suffering would crush both Jeffrey Butler and his wife, Valerie, who was caring for him roughly a hundred hours a week.
In the autumn of 2007 Valerie Butler was 83, “’as lucid and bright as a sword point, and more elegant in her black jeans and thin cashmere sweater than I could ever be,’ her daughter recalls. Still, Valerie had come to end of her rope and her hope: ‘She put down her teacup . . . put her hand, hard, on my arm‘ and said, ‘Please help me to get your father’s pace-maker turned off. He is killing me. He. Is. Ruining My Life.’”
This was a request Katy Butler had both “dreaded and longed to fulfill.”
A reporter, she knew what to do next: research.
Incredibly, she managed to find a bioethicist who had been an engineer for Guidant, the third largest U.S. manufacturer of pace-makers and other implantable heart devices. Her source told her that a pacemaker could be turned off painlessly, and without surgery. A white ceramic device that functions like a TV remote could be placed on her father’s chest, just below his collarbone, and when “someone pressed a few buttons, the electrical pulses that ran down the pacemaker’s spiraled wires to his heart would slow until they were no longer effective. My father’s heart would probably not stop. It would just return to its old, slow rhythm. If his aging heart had deteriorated since the pacemaker was put in, he might die within weeks. If he were unlucky, he might linger for months.”
As it turned out, it would not be that easy.
In a phone conversation, Katy told me: “There is an American fantasy which says ‘I can sail along completely healthy and at the exactly the right moment –tell the doctor I want to pull the plug. I can be immortal thanks to the blessings of technology, and the flip side of that is the notion that I can leave this planet without woe and suffering.’”
The cardiologist refused to deactivate the device . . . Turning off the pacemaker would be “like putting a pillow over his head,” Dr. Rogan declared.
He explained that “he’d feel okay about not replacing the pacemaker’s battery when it ran down. But turning it off would be ‘too active.”
Mother and daughter then went to Dr. Fales. “He had been opposed to the pacemaker from day one, ‘but turning it off, he said, was ‘something else again.’”
“Without the device, my father might get dizzy or faint, fall, break a hip, and end up in the hospital. . .
‘Keep him out of the hospital at all costs,’ Dr. Fales said. ‘Try not to call 911.’ As he looked at my mother, Butler remembers “his eyes were filled with tears.”
Fales knew that, once in the hospital, Butler would become part of “the system” — a system that follows the institution’s own protocols as to what is best for patients. Butler could end up dying, alone, in an intensive care unity. By then, Katy’s mother had come to think of doctors as “skilled technicians who have their own agenda.” Some feel that it is there duty to “do everything possible.”
Dr. Fales then suggested: “Why don’t you just let the batter run out? It probably only lasts five years, and it’s getting close.”
When they got home, Katy and her mother found the file her mother had kept on the device. The battery of this particular pacemaker had a ten-year life.
They had another five years to go.
A Living Will and a Medical Proxy– No Guarantee
Katy Butler contacted Compassion and Choices, a successor to Hemlock Society, the organization that first advanced the notion that the fatally ill had a right to die without interference. The law was clear, she was told. “Her father had the right to ask for the withdrawal of any medical treatment—included an implanted device. She and her mother, as his designated health-care proxies, had the right to insist that his wishes be followed when he could no longer express them.”
But “in an era of advanced medical technology,” Katy Butler soon learned that, “having legal and moral rights was not the same thing as having power. . . . Those who knew my father best– Dr. Fales my mother and I –wanted to let him die naturally. Those who knew him least and least understood his suffering were eager to prolong his life, and had the know-how and power to do it.”
Katy Butler was advised that she “should not be rude or threaten a lawsuit. When family members become agitated or disruptive, “hospital bioethicists. . . may decide that the surrogates lack ‘decision-making capacity’ and the medical team may simply ignore them, or go to court and ask to have the troublemakers removed from the job. If that happened, my father’s medical proxy wouldn’t be worth the paper it is written on.”
Katy was learning that advances in medical technology represent a double-edged sword. On the one hand, devices like the pace-maker were saving lives.On the other hand, savings lives had become a big business.
What Butler calls “cardiac hypermarketing” grew as both Medicare and private insurers paid more for procedures than they did for the time it would take a doctor to discussion benefits, risks, and alternative options with a patient and his family.
Meanwhile, over-treatment supportes a burgeoning industry: “Reimbursements for advanced medical technologies, which become forms of medical torture when inappropriately deployed, help cover the cost of a sales rep’s mortgage payments, a hospital’s money-losing ER, a surgeon’s 2nd or 3rd home, or dividends to stockholders of Siemens or St. Jude Medical,” Butler reports. “Nothing much will change until we pay doctors and hospitals when they appropriately do less as well as we do when they inappropriately do too much.”
The danger, of course, is that if physicians and hospitals are paid to “do less” Americans who have become accustomed to overtreatment will claim that reformers are “rationing care.” The truth is that the opposite of overtreatment is not “under treatment”—it is “appropriate treatment.” As Butler told me, “the word ‘rationing’ avoids the reality that our current way of dying maximizes both death and suffering.”
Yet, in the last few years, our ,medical culture has begun to change. As Butler observes: “Reclaiming death from medicine, the way the natural childbirth movement recaptured birth in the 1970s’s, is already underway in the form of open rebellion by families like mine, the growth of hospice and palliative-care programs, and the widening number of doctors who practice Slow Medicine—though they may not call it that.”
Jeffrey Butler’s Pacemaker Was Never Turned Off.
Jeffrey Butler finally died of “the old man’s friend,” pneumonia. After his death, his daughter tells us, “The Heart Rhythm Society and the American Heart Association issued guidelines declaring that patients or their legal surrogates have the moral and legal right to request the withdrawal of any medical treatment, including an implanted cardiac device. It said that deactivating a pacemaker was neither euthanasia nor assisted suicide, and that a doctor could not be compelled to do so in violation of his moral values. In such cases, it continued, doctors ‘cannot abandon the patient but should involve a colleague who is willing to carry out the procedure.’
“This came, of course, too late for us,” Katy Bulter reports.
Butler’s death was hard work: “My father just breathed a terrible loud, ever louder breathing, like someone building a wall, like someone delivering a baby. His lungs filled with fluid. “
But he did die in the hospice unit of a local hospital, with morphine to quiet the pain. And Katy tells us, by “refusing to give him water, food or antibiotics,” Valerie Bulter “fulfilled her marriage’s final, tender and brutal vows.” She was at his side when he died.
NOTE to Readers: “Knocking on Heaven’s Door” may sound like a painful tale that could be difficult to read. But in truth, it is an easy read, because it is so beautifully written. Here, I have provided only a bare-bones précis of what is really a non-fiction novel. The prose is filled with compassion as Katy Butler struggles to love (and feel loved by) her seemingly perfect mother—and to understand the knotty romance that her parents shared, even toward the end.
In Part 3 of this series on longevity, long-term care, and the art of dying,
I will describe how Valerie Butler, always a warrior, took charge of her own death. In that post, I also will discuss “voluntary stopping of eating and drinking” (VESD) in order to hastens one’s death, which is legal throughout the United States.
When supervised by hospice or palliative care specialists, withholding food and liquids is not painful. Both palliative care specialists and those who advocate for “aid in dying” assure us that VESD offers an opportunity for a “merciful death.”
In future posts, I will explore how we might organize and fund long-term care for everyone who needs it (not just Alzheimer’s patients), discussing the limits of private-sector long-term-care insurance, and the possibility of ear-marking inheritance taxes to pay for the care that millions will need, as well as proposals that we make “physician-assisted suicide” legal.
I also will discuss a proposal that Medicare cover up to two years of home and palliative care in exchange for the patient agreeing not to expect Medicare to pay for last-ditch efforts such as a $35,000 defibrillator, or a $300,000 hi-tech death in an ICU.
Finally I will consider how and where we should provide long-term care–in the patients home, in community homes, or hospices–and who might best provide that care.