Death with Indignity

How Medicare and other federal subsidies rope the elderly into painful, futile, and costly end-of-life care.

How is it that the one place my father swore he never wanted to set foot in again was the very place he spent ten of the last twenty days of his life? At eighty-four, desiccated and frail, his life had narrowed to reading in short bouts between naps. He could no longer sculpt or carve jade, or had the will to paint. The high point of his days was now focused on going out to lunch with my brother or stepmother. He was deaf in one ear and so hard of hearing in the other that conversations could never proceed in a linear way, but constantly looped back upon themselves because he needed things to be repeated. To the end he retained his sense of humor.

Mar15-Volandes-Books
The Conversation:
A Revolutionary Plan
for End-of-Life Care

by Angelo E. Volandes
Bloomsbury USA, 240 pp.

A series of medical emergencies, small and large, had landed him in the hospital multiple times over the previous decade. A side effect from a cholesterol drug led to kidney failure and three weeks in the hospital on dialysis. There was a small stroke, and then another. He was hospitalized for constipation that over-the-counter remedies could not resolve.

Many of these ailments meant a trip over the Coast Range to the big hospital in Portland, Oregon, where the doctors and nurses are caring, but the indignity and pain left Mick loathing every second he spent there. During his previous stay, he fumed that the nurses insisted on accompanying him to the toilet to prevent him from falling. “I can’t even take a piss on my own!” He outsmarted them by perching on the edge of the bed and using a urine bottle, a trick that was probably more likely to lead to a fall than if he shuffled the ten steps to the bathroom on his own. Once he returned home, he told me, my brothers, my stepmother, and anybody else who would listen that he never, ever wanted to be in that hospital again.

In November 2013, however, he developed a volvulus, a loop in the gut that at first shows up as constipation and vomiting but if left untreated often leads to a section of the bowel dying and the patient developing a fatal infection. My brother took him up the coast to the community hospital, where the loop in his bowel was straightened out with a simple procedure. They could have kept him there overnight to see if the volvulus developed again, but the emergency room doctor said Mick might be having a small heart attack and he didn’t “feel comfortable” keeping him there. He wanted him to go to the hated big hospital in Portland. Keep Mick away from Portland, I urged my brother on the phone from my home 3,000 miles away. No chance. Into an ambulance Mick was bundled for the bumpy ride across the mountains. So much for respecting the wishes of the dying.

Once in Portland, my father’s new set of doctors began “working him up.” Blood was drawn, vital signs taken. He was assigned a young hospitalist, a primary care doctor employed by the hospital to interact with the family and coordinate the various specialists involved in my father’s case. Shortly after arriving, Mick suffered another volvulus, which was again resolved with a quick procedure. But now it was apparent that this was probably going to keep happening. The only treatment for recurrent volvuluses is abdominal surgery.

There was almost no possibility that Mick would emerge from major surgery in any shape to leave the hospital, much less resume his old, already much diminished life at home. On the phone again, I urged my brother to ask for a consult with the palliative care team. These doctors are trained to relieve symptoms and help patients and families understand their choices when a patient is seriously ill. Yet when my brother requested the consult, the hospitalist replied, “We aren’t there yet.” In other words, in the hospitalist’s (erroneous) view, palliative care was strictly for the dying, and my father wasn’t yet at death’s door, just in the waiting room.

By the time I got to Portland, a cardiologist had succeeded in giving Mick a useless nuclear stress test to determine if his heart was fit enough to have a surgery that the rest of his body could not withstand. Once that was done, the surgeon confirmed that my father was not a candidate for surgery. Now, finally, the hospitalist was willing to call in palliative care, but not before he managed to hook my father up to something called “total parenteral nutrition,” an IV line that delivered a milky glop that did nothing but prolong his dying.

Curing Medicare: One
Doctor’s View of How Our
Health Care System Is Failing
the Elderly and How to Fix It

by Andy Lazris
CreateSpace Independent Publishing
Platform, 290 pp.

The one bright spot in my father’s stay was his nurse, Eric, a former military medic who offered respect and humor. Mick wasn’t talking a lot, whether from weakness or anger at being in the hospital or some combination, but he would answer Eric’s questions.

One day, when my youngest brother was there, Mick sat up in the bed, grasped my brother by the wrist, and looked him in the eye. “Take me home,” he said. “I’m ready to die. I just want to go home.” My brother could see that our father was desperate to get out of there, and his eyes welled up. “Dry your tears,” Mick said, “I’m done.”

A little later, Mick began struggling with the bedclothes, trying to swing his legs over the edge of the bed. This set off an alarm in the nurses’ station, sending Eric into the room. “Mick,” he said. “What do you want?”

“A head start,” replied my father.

Before Mick died, I knew on an intellectual level that we do death badly in America. Only 19 percent of Americans die at home, which is where the vast majority of us want to spend our last days. Most of us die in the hospital or nursing home. I recently helped produce a report on dying in California which found that in parts of Los Angeles, one in six patients with terminal cancer receive chemotherapy, are put on a ventilator, or receive some other form of “life-sustaining” (that is, death-prolonging) treatment in the last month of life, despite the fact that the American College of Oncology says it’s bad medical practice. I knew that magical thinking by patients and families contributes to the insanity of futile care. A survey conducted about a decade ago found that 35 percent of Americans believe that any disease can be cured with enough money and the right doctors. In other words, death is optional. But knowing the statistics is one thing; it’s quite another to understand, and feel, the suffering a medicalized death so often entails, on the part of both the dying and the surviving.

By now, many more Americans have begun to gain such an understanding, from reading Atul Gawande’s moving and lyrical Being Mortal: Medicine and What Matters at the End. Published last fall to great acclaim, including a glowing review in these pages (Phillip Longman, “The American Way of Dying,” November/December 2014), Being Mortal movingly depicts many of the indignities visited upon the dying.

But two other books by physicians are needed to round out a clearer view of why we have made such a mess of death, and what we can do about it.

In The Conversation: A Revolutionary Plan for End-of-Life Care, author Angelo Volandes’s telling of seven deaths eloquently illuminates both how and why we fail the dying. One is the story of Taras Skripchenko, a Ukrainian immigrant with no family, dying of inoperable lung cancer. Volandes was a young resident, still in his training when Skripchenko was admitted to the hospital from a nursing home. The patient was in the final stages of multiple chronic conditions but was too delirious to direct his own care, and thus was automatically placed on “full code,” meaning do everything to delay death.

Volandes was in a cramped elevator with his preceptor, a senior resident just a couple of years older, when Skripchenko, whose heart had stopped just a little while earlier, went into cardiac arrest. The younger doctor climbed up on the gurney to straddle their unconscious patient to do chest compressions, breaking ribs in the process. Volandes tried, unsuccessfully, four times to remove the fluid from the sac around Skripchenko’s heart with a long needle inserted between the ribs. Finally, the patient was placed in the ICU, where he was hooked up to eight different IV lines and tubes, including a urinary catheter, a rectal trumpet tube, and a tube that snaked through a hole cut into his chest to drain the fluid around his heart. Skripchenko would linger another two weeks in the ICU, never regaining consciousness before he died.

After delivering their patient to the ICU, Volandes voiced feelings of misgivings to his preceptor. “Perhaps it was because I was a young doctor,” he writes, “not yet numbed to the brutal experience of caring for hundreds of patients.” The senior resident replied, “We did everything by the book. Look, this is the system. We have a job to do.”

“End-of-life care is broken at every level,” writes Volandes, and patients and their families are largely in the dark about what awaits them at the end of life at the hands of the health care system. This lesson was conveyed to him by another patient, an intelligent, highly educated woman who was dying of cancer, about whom Volandes told me in an interview two years ago. On call late at night when she was admitted, Volandes asked her if she had thought about how she wanted to be treated as she approached death: Did she want comfort care? CPR? Intubation? She told him she didn’t know what she wanted—because she had no idea what he was talking about. In a moment of inspiration, he decided to show her. He wheeled her upstairs to the ICU, where a patient happened to be having a ventilator tube removed. Afterward, she looked at Volandes and said, “Whatever that was, I don’t want it.”

The doctor says, “Do you want us to do everything for your mother?” The family hears, “We can save your mother’s life.” Volandes began to perceive the gulf that lies between what doctors say and what patients and family members imagine. Over the next decade, he created a series of short videos intended to bridge the gap. Each video describes in simple terms and images what end-of-life care entails.

For example, one three-minute video shows a woman in the advanced stages of dementia, while the narrator describes the typical course of dementia, which inexorably robs sufferers not just of memory, but also the ability to speak, understand simple questions, and perform such tasks as eating and going to the toilet. Another shows a patient on a ventilator, or breathing machine, as the narrator slowly and simply explains that a tube will be inserted into the trachea, and the patient must often be sedated and cannot speak. Each video includes easy-to-understand statistics about, for example, how rarely frail, elderly people get off a ventilator and actually go home. (Full disclosure: The videos are narrated by Volandes’s wife, Aretha Delight Davis, also a physician and a member of the board of my organization.)

The proof that seeing is understanding lies in a series of rigorously controlled studies Volandes has done with funding from the National Institutes of Health. In one study, published in 2010, two groups of terminal cancer patients either were shown a video or heard a verbal description of their end-of-life choices (the words in both the film and the description were the same). Of those who saw the video, more than 90 percent chose comfort care, versus 22 percent who heard only the words and opted for greater medical intervention.

Like The Conversation and Being Mortal, Andy Lazris’s Curing Medicare: One Doctor’s View of How Our Health Care System Is Failing the Elderly and How to Fix It weaves the stories of patients throughout a larger narrative. It is also a cri de coeur from a geriatric specialist who wants desperately to care for his elderly patients with compassion and kindness, but finds himself thwarted at every turn by an overzealous medical culture, irrational regulations, and perverse Medicare payments that too often make sending patients to the hospital the easiest option.

Curing Medicare is passionate, smart, and a little terrifying. Lazris tells of patients with minor conditions who, once in the hospital, become agitated and must be “restrained”—doctor code for tied to the bed by the wrists—to prevent them from pulling out tubes or getting out of bed. Their care is overseen by young hospitalists (like my father’s doctor), few of whom, writes Lazris, “are cognizant of how to care for the elderly. They call in a squadron of specialists, tackling one problem at a time. The end result is aggressive care.”

One of his patients, a Mrs. R, was sent by a cardiologist to the hospital for a rapid heartbeat—a minor condition that Lazris would have treated in his office and then ordered a home health nurse to monitor for a few days. The family decided to follow the cardiologist’s recommendation, in part because Medicare would not pay for a home health nurse, one of the many ways Medicare reinforces bad care.

Once admitted, Mrs. R was found to have a little fluid on her lungs. She was prescribed an intravenous diuretic, but the dose was too high, causing her to become incontinent. She became dehydrated, and her blood chemistry was thrown off. She lost sleep and grew delirious. She was “restrained” and given medication to calm her, but she grew more agitated, and then unable to eat or drink, which caused her kidneys to fail. The nurses pushed liquids and food on her, which she inhaled, causing a raging pneumonia that necessitated a trip to the ICU. There she was put on a ventilator, lost blood, and developed an infection that caused intractable diarrhea. She lasted two weeks before dying.

Lying just below the surface of these three books is a set of political decisions with which the United States will be forced to grapple in coming decades. When a frail, elderly person gets sick, takes a fall, or has trouble breathing, it’s as if they have stepped onto a slippery chute leading straight into the hospital, no matter how fervently they and their families might wish to avoid invasive treatment as they age and approach death. That’s because hospital services are what our medical industrial complex has been built to offer, and delivering invasive end-of-life care is the job for which we have trained our doctors and nurses. Medicare policy, federal subsidies for hospitals, and taxpayer dollars for medical training all have helped create a technology-rich, hospital-centric system.

What we don’t do is train clinicians to talk to patients, and what we don’t have is the community-based infrastructure for delivering “high touch” care to people where they live. We don’t provide the simple services, like regular meal delivery and aides to help with housecleaning and bathing, that can help an elderly person preserve some autonomy and dignity. We don’t have enough primary care doctors practicing in the community—in part because our teaching hospitals make more money when they train more specialists—and the primary care doctors we do have are too busy to make house calls. Of course, there’s always an assisted-living facility— for those who can afford the $3,000 to $6,000 a month. For the rest of us, once we can no longer perform the simple tasks of daily living, like cooking for ourselves, or toileting, we can either move in with the kids or go to the nursing home.

Policymakers should heed Lazris’s list of the Medicare regulations that should be modified or scrapped. For instance, we should get rid of the rule that says a patient has to stay in the hospital for at least three days before being eligible for a skilled nursing facility. We should pay for home nursing for people who need a little temporary help but don’t need to be hospitalized. Beyond that, as a nation we are going to have to acknowledge our overinvestment in hospital-based care and underinvestment in communities, and recognize that few mechanisms currently exist, including Obamacare, for reversing them.

It took my family ten days to pry Mick out the hospital and get him into home hospice. Mick took another ten days to die. We eased the dryness of his mouth with ice chips. He asked for and got a sip of beer in the afternoons when friends visited. “That tastes good!” he would say. He slept more and more each day, and responded more infrequently to questions or a squeeze of his hand. Right until the end his eyes remained the clear blue of glacier ice. When he died, my stepmother and I dressed him in his best Japanese kimono, and then we sat with family in the darkening living room, as the surf boomed on the shore, drinking champagne and alternately weeping and laughing as we retold every funny story we could remember from the life of a great artist and complicated man. Dying is hard. The epidemic of futile, indifferent, often harmful medical intervention that has infected American health care makes it even harder.

Shannon Brownlee

Shannon Brownlee is senior vice president of the Lown Institute, a nonpartisan public policy think tank based in Boston. She is also cofounder of the Right Care Alliance, a network of physicians, nurses, patients, and community activists advocating for a transformed and uniquely American health care system.