Tagged Health Insurance and Managed Care

At the End of Life, What Would Doctors Do?

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Credit Stuart Bradford

Americans have long been chided as the only people on earth who believe death is optional. But the quip is losing its premise. A recent profusion of personal narratives, best-selling books and social entrepreneurs’ projects suggest that, as a culture, we are finally starting to come to terms with our mortality. Nationally, the Conversation Project is engaging people to discuss their wishes for end-of-life care. Death Cafes and Death Over Dinner events are popping up across the country, reflecting an appetite for exploring these matters. So too, the Dinner Party and the Kitchen Widow are using meals as a communal space to explore life after loss.

Admittedly, contemplating mortality is not (yet) a national strong suit. That’s why these cultural stirrings are so significant. At a minimum, our heightened awareness and willingness to talk about illness, dying, caregiving and grieving will lead to much better end-of-life care. However, the impact on American culture needn’t stop there. Like individuals who grow wiser with age, collectively, in turning toward death, we stand to learn a lot about living.

Doctors can be valuable guides in this process. In matters of illness, people are fascinated by the question, what would doctors do? Consider the social phenomenon of Dr. Ken Murray’s online essay, “How Doctors Die.” Dr. Murray wrote that doctors he knew tended to die differently than most people, often eschewing the same late-stage treatments they prescribed for patients. The article went viral, being read by millions, and reprinted in multiple languages in magazines, newspapers and websites across the globe.

Dr. Murray’s observation even engendered studies of doctors’ preferences for care near the end of life. So far, results are mixed. In a Stanford study, 88 percent of responding physicians said they would avoid invasive procedures and life-prolonging machines. But a newly released comparative study of Medicare recipients, as well as a longitudinal study and separate analysis of Medicare data published in January, suggest that the actual differences between end-of-life treatments that doctors and nondoctors receive are slight. Perhaps like nearly everyone else, when life is fleeting, physicians find it difficult to follow their previous wishes to avoid aggressive life-prolonging treatments.

For what it’s worth, the terminally ill colleagues I’ve known, including those I’ve been privileged to care for, have usually been willing to use medical treatments aplenty as long as life was worth living, and took great pains to avoid medicalizing their waning days. In any event, the public’s interest in the medical treatments that doctors choose must not be allowed to reinforce our culture’s tendency to see dying solely through medical lenses. More to the point is the question, how do dying doctors live?

What dying doctors do with their time and limited energy, and what they say, are deeply personal, sometimes raw and often tender. Like everyone else, doctors experience pain and suffering – yet many speak of a deepening moment-to-moment sense of life and connection to the people who matter most.

Listen to a few.

Dr. Jane Poulson lost her sight to diabetes while still in medical school. After years of successful internal medicine practice, Dr. Poulson developed inflammatory breast cancer and knew it would claim her life. Writing in the Canadian Medical Journal she said:

In a paradoxical way, I think I can say that I feel more alive now than ever before in my life … When you presume to have infinity before you the value of each person, each relationship, all knowledge you possess is diluted.

I have found my Holy Grail: it is surrounding myself with my dear friends and family and enjoying sharing my fragile and precious time with them as I have never done before. I wonder wistfully why it took a disaster of such proportions before I could see so clearly what was truly important and uniquely mine.

About a year after being given a diagnosis of incurable esophageal cancer, Dr. Bill Bartholome, a pediatrician and ethicist at the University of Kansas, wrote:

I like the person I am now more than I have ever liked myself before. There is a kind of spontaneity and joyfulness in my life that I had rarely known before. I am free of the tyranny of all the things that need to get done. I realize now more than ever before that I exist in a ‘web’ of relationships that support and nourish me, that clinging to each other here ‘against the dark beyond’ is what makes us human … I have come to know more about what it means to receive and give love unconditionally.

Dr. Bartholome referred to this period before his death as “a gift.”

It has given me the opportunity of tying up the ‘loose ends’ that all our lives have. I have been provided the opportunity of reconnecting with those who have taught me, who have shared their lives with me, who have ‘touched’ my life. I have been able … to apologize for past wrongs, to seek forgiveness for past failings.

A healthy defiance is often palpable within the personal decisions of doctors who are living in the growing shadow of death. My friends Herbert Mauer and Lisa Mills, long-married oncologists, boldly renewed their vows before a crowd of family and friends during the months Herb was dying of cancer. In “When Breath Becomes Air,” the neurosurgeon Dr. Paul Kalanithi relates the decision he and his wife, the internist Dr. Lucy Kalanithi, made to have a child, while knowing full well that he was unlikely to see their daughter grow up. Such affirmations of couplehood in the face of death are not denial; but rather insubordination, eyes-wide-open commitments to living fully despite the force majeure.

Gratitude also commonly emerges in the experiences of dying clinicians. In one of our last email exchanges, my friend, the clinical psychologist Peter Rodis, wrote:

The shock of knowing I’ll die has passed. And the sorrow of it comes only at moments. Mostly, deep underneath, there is quiet, joyous anticipation and curiosity; gratitude for the days that remain; love all around. I am fortunate.

The neurologist Dr. Oliver Sacks concluded his essay “My Own Life” in exaltation.

Above all, I have been a sentient being, a thinking animal, on this beautiful planet, and that in itself has been an enormous privilege and adventure.

These experiences are like dabs of paint on an Impressionist’s canvas. Taking in this contemporary ars morendi we can appreciate how dying and well-being can coexist. For all the sadness and suffering that dying entails, our human potential for love, gratitude and joy persists.

How fitting would it be for a corrective to the medicalization of dying to come from the medical profession itself? The general public’s interest in what doctors do can teach all of us about living fully for whatever time we each have.

Ira Byock, a palliative care physician, is founder and chief medical officer of the Providence Institute for Human Caring in Torrance, Calif. His books include “Dying Well” and “The Best Care Possible.”

Leaving the Pediatrician? Not at 26

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Lule Rault, 26, talks with her doctor, pediatrician Ramon Murphy, who she’s visited since childhood at Uptown Pediatrics in Manhattan.

Lule Rault, 26, talks with her doctor, pediatrician Ramon Murphy, who she’s visited since childhood at Uptown Pediatrics in Manhattan.Credit Yana Paskova for The New York Times

Lule Rault took a seat in the waiting room of Uptown Pediatrics on Park Avenue, across from several young mothers with babies in tow. A toddler played with the toys on the waiting-room floor.

“I felt like they might think I’m just another young mom or something,” she said, “since I am so close to their age.” But Ms. Rault, a 26-year-old medical student, was there this month for her own annual checkup. She has been a patient at Uptown Pediatrics since her own infancy. And she plans to remain so until she finishes her M.D. at Tulane University. At that point she will be 29.

She is not looking forward to the transition.

“I don’t have to leave Dr. Murphy, do I?” she said in an interview by email. “I’m only 26!” And she is not Dr. Ramon Murphy’s only patient long out of high school. “The last time I was there, he told me there was one patient older than me — a boy.”

A poll from the Pew Research Center last month found that for the first time in more than a century, young adults are more likely to live with their parents than with a partner or a spouse. So it should come as no surprise that many are perfectly happy to remain with their childhood physicians. The age at which patients leave the pediatric nest varies, depending on whether their doctors are trained to treat adolescents and young adult patients. Historically, that age has been 18 to 22. It seems to be moving up.

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Lule Rault, 26, left, emerges from an appointment at Uptown Pediatrics in Manhattan. The waiting room there caters both to young children and to patients in their twenties.

Lule Rault, 26, left, emerges from an appointment at Uptown Pediatrics in Manhattan. The waiting room there caters both to young children and to patients in their twenties.Credit Yana Paskova for The New York Times

Under the Affordable Care Act, children can remain under their parents’ insurance plan until they are 26, which since 2010 has added three million young people to the insurance rolls, according to the Department of Health and Human Services. But that doesn’t mean healthy young adults are regularly visiting any doctors.

“Young adults on the whole are not very connected to the health care system,” said Dr. Patience White, a director at the Center for Health Care Transition Improvement, a group that studies the transition from pediatric to adult health care. “They often turn to the emergency room when they get sick.”

In New York City, many pediatricians are willing to keep their older patients so that they won’t stray from the system. Dr. Murphy and other pediatricians also said many young adults have found it impossible to find an internist who will accept insurance from new patients. Some require an initial concierge fee that runs as much as $3,000; those who do take insurance often don’t have appointments available for four to six months.

“The patient, or parent, reasons that it makes more sense to just stay with the pediatrician,” Dr. Murphy said.

Furthermore, a growing number of pediatricians are trained to treat adolescents and young adults. Dr. Murphy’s practice reflects his 19 years at the Adolescent Health Center at Mount Sinai Hospital in Manhattan. It’s a different kind of rapport from the one he has with his grade-school patients.

“I ask them about friends, school, career choices,” he said. “I wasn’t cut out to wear clown noses and funny ties.”

His waiting room at Uptown Pediatrics even has two sides — one furnished with the familiar trappings of the Sesame-Street-and-K.C.- Undercover set, the other with seating and reading material for adult-size patients.

“I think it’s a New York City phenomenon,” said Dr. Ralph Lopez, whose Upper East Side practice focuses primarily on teenage boys and young men. “Your mom and dad may pick out an internist for you, but you don’t like the doctor, so you stay with someone like me.” He added, “I’m seeing two 25-year-olds later today.”

Andrew Ruvkun, 20, who runs varsity track at Carleton College in Minnesota, plans to stay with his Manhattan pediatrician, Dr. Sol Zimmerman, at least until he finishes college.

“He’s a nice guy, so for now this is it for me,” Mr. Ruvkun said. “He signs off on my N.C.A.A. forms, and he’s the only doctor I’ve ever known.”

Suzy Storr, 25, an artist who a year ago moved back to her Park Slope home after finishing her studies in England, would have liked to keep her old pediatrician, Dr. Sylvain Weinberger, but was told she had aged out of his practice.

“It was kind of sad to me,” she said. “I’d always had a fear of needles, and while I’m better about it now, he always knew how to comfort me.”

Dr. Weinberger suggests his patients find another physician when they leave for college. Up to age 19, “they can always call me,” he said.

As a practical matter, he noted, any patient 18 or older who needs to be hospitalized will go on an adult floor, where a pediatrician may not have admitting privileges.

Ms. Storr tried an internist, but she felt that she was“kind of rushed” and that the visit was about “doing a checkup and kicking you out.”

In New York City, several private practices devoted to adolescent medicine have sprung up to fill the gap for young adults whose needs have outgrown the so-called baby doctor.

“Many pediatricians are uncomfortable with talking about birth control, condom use,” said Dr. Karen Soren, director of adolescent health care at the NewYork-Presbyterian Morgan Stanley Children’s Hospital. “This is part of why adolescent medicine came into being.”

“Traditionally,” she added, “adolescent medicine was intended to deal with kids 12 to 18 years old. It became pretty clear kids didn’t suddenly change into adults at 18, so a lot of us kept them until 21 and beyond.”

Dr. Cynthia Pegler, whose private patients on the Upper East Side primarily are young women, will continue to treat patients until they are ready to be parents themselves.

“My official rule is it is really time to go when you yourself are ready to have a baby,” Dr. Pegler said.

Dr. Soren recalled one patient who returned to her adolescent clinic after a year at an adult internist.

“I tried to prepare her as best I could,” Dr. Soren said. “I printed out her vaccines, her medical records. I made an appointment for her with the new doctor. She went once, but said she went into the waiting room and there were all these ‘old people.’ A year later she came back to refill her birth control pills, so I began seeing her again.”

Dr. David Bell, medical director of the Young Men’s Clinic and the Family Planning program at NewYork-Presbyterian, said that when he started at the clinic 16 years ago, the age cutoff was 24. Now it’s 35.

“I pushed it up to 27, then 30, and now 35,” Dr. Bell said. “I’m kind of sticking to 35.”

Pricing a Year of Life

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Credit Stuart Bradford

A radio producer investigating cancer costs once asked me, “What is another year of your life worth?” During my flummoxed silence, she informed me that experts mention the figure $50,000. Can patients like me — older people with recurrent disease — estimate the expense of a future year of cancer treatment to decide whether it’s worth it?

I began to understand the origin of the number when my nephew sent me an article in The New England Journal of Medicine, “Updating Cost Effectiveness.” Its authors explain: “For more than two decades, the ratio of $50,000 per quality-adjusted life-year (QALY) gained by using a given health care intervention has played an important if enigmatic role in health policy circles as a benchmark for the value of care.”

Used by economists, the QALY calculates quality and quantity of life to judge the monetary worth of medical inventions. Since my cancer was diagnosed in 2008, I have wondered how to make this reckoning within our for-profit health system. So with misgivings I set aside the plight of the uninsured and began considering not generic measurements of cost-effectiveness but how much I — as an insured patient — had paid for one year of cancer treatment.

It turned out to be impossible. Never — during four years of operations, radiological interventions, and cycles of chemotherapy — had I been informed beforehand about the cost of any consultation, procedure, equipment or drug. Nor did I understand what would be covered by insurers and (when I got older) Medicare or what would have to be paid out-of-pocket.

After the consultation or procedure, I received impenetrable statements from providers, stamped in large letters, “This Is Not a Bill.” They were followed by cryptic printouts from the hospital that clearly were bills, although next to many entries the word “pending” appeared.

Now, given my erratic bookkeeping, I cannot calculate what I ended up spending.

The camouflaging of cancer costs poses an unprecedented problem. There is no analogue in life — including the approach of death — in which I remain so ignorant of expenditures. Although I have ascertained what cremation, a grave site, and a marker cost, I have no idea what the costs of my treatments amounted to.

During those same years, I could not predict treatment complications that required subsequent procedures and outlays. When an operation necessitated another, the bills multiplied. Humbled by my own unknowingness, I took to heart Kierkegaard’s insight that we must live life forward, even though it can only be understood backward.

Obviously, I was in neither the physical nor the psychological state needed to adjudicate the paperwork. Dazed, frightened and depleted by the alarming threat to my mortality and the debilitation of treatment, I demoted the bills to a nasty irritant. An excellent job with good benefits buffeted me from facing what less lucky people confront: a financial crisis triggered by cancer treatment.

Stints in the hospital enlighten many patients about prohibitive co-pays and costs above coverage ceilings for the large sums charged by surgeons, anesthesiologists, radiologists and oncologists; for operating and hospital rooms, tests and scans, medicine and equipment as well as a box of tissues. The title of an article in The Oncologist about the financial distress of insured patients speaks volumes: “The Financial Toxicity of Cancer Treatments.”

Add to these expenditures exorbitant out-of-network fees, the loss of wages resulting from treatment-related appointments and disabilities, the cost of travel to and from the hospital, and the need to hire child care or housekeeping or elder care assistance. All these combined payments can be staggering.

As for the new cancer drugs, pharmaceutical companies apparently charge whatever the market will bear. A new type of medication, a PARP inhibitor similar to the one I receive in a clinical trial, has been approved by the Food and Drug Administration for recurrent ovarian cancer patients. Lynparza, produced by AstraZeneca, costs about $11,000 a month. That would come to $132,000 a year. After a media flap a few years ago over Zaltrap — doctors at Memorial Sloan Kettering boycotted it, saying it was no more effective than a less expensive drug — its producers cut the price in half.

No wonder, then, that people with cancer are more likely to go bankrupt than other Americans. The authors of The New England Journal of Medicine article conclude that the QALY has been underestimated. For a single threshold now, they would suggest either $100,000 or $150,000 per QALY.

Whatever the estimate, a crude ratio of cost effectiveness, like the QALY, seems presumptuous. How can qualitative factors (nausea, fatigue) be converted into quantitative numbers? How can general calculations account for individual variations (my preference for fatigue over nausea) or overriding personal beliefs and principles about what constitutes a valuable existence?

Yet it would help patients like me to participate in sober public conversations on these issues since many of us are aware that individual decisions about medical costs sidestep vexing social questions of why they are inflated and how they will tax our children and grandchildren. At the least, more transparent communications would alleviate widespread fears that living life forward could trip us backward into penury.

For the past three years, the clinical trial in which I participate has covered most cancer-related expenses. When the drug in my trial fails, I want to have some say about whether another year of my life is worth the cost of treatment. But it will take a change in the current way of doing medical business to make that possible.

Related:

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In Hospitals, Smoke-Free Doesn’t Mean Abuse-Free

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Credit James Yang

The substance user and the hospital are bound by the most ambivalent of relationships. Heavy users — of tobacco, alcohol or harder drugs — see far more of the wards than the average citizen and, it is safe to say, like them even less.

They need hospitals. They hate hospitals. Hospitals make them well and sick at the same time. We are their doctors and nurses, their parents, their arresting officers, parole officers, judge and jury. Needless to say, we are not trained for the last five roles, nor are we particularly good at them.

A single principle guides us: You cannot use your drug of choice on our premises, no matter how much you may need it and prefer it to our proffered alternatives. Around that immutable core swirl large clouds of negotiation, compromise, duplicity, manipulation and general misery for all involved.

On some days it seems as if we spend all our energies managing not the conditions we are trained to manage but the addictions that complicate them.

One patient is tying his shoes as we make our rounds in the morning, and tells us cheerfully that he is going out for a smoke. He’ll be right back. We inform him, not without sympathy, that in our hospital smoking breaks are not allowed. If he leaves for even half an hour he will officially be considered discharged. His bed will be given to someone else, and to resume his medical care, he will have to go back to the emergency room and start the cycle all over again.

We propose a nicotine patch instead, but the nurses have already given him a patch, to no effect. Few other compromises are possible between the smoke-free hospital and the hard-core, implacable smoker. The discussion grows heated. We wind up discharging him on the spot, just a little sooner than we had in mind.

The patient in the next room has been in the bathroom for almost an hour. We need to examine him. We knock on the bathroom door. He yells out that he’s fine.

When he finally drifts out, drowsily readjusting the dressing covering the intravenous line in his arm, he doesn’t look fine. He looks as high as a kite, and come to think of it, the two visitors lounging by his bed do, too. We sigh. No easy compromises will be possible for him.

It was back in the 1980s that most American hospitals became officially smoke-free (and cigarette butts began accumulating in stairwells and side exits). The big exceptions were the V.A. hospitals: In fact, theVeterans Health Care Act of 1992 specifically required V.A. facilities to establish designated smoking areas for clients. In 2008, those areas were all moved outdoors, and most V.A. hospitals still have them.

This policy has been bitterly criticized as the worst kind of tobacco industry manipulation, but it does serve a useful function: It allows medical care to proceed without major interruption. Granted, that care is often for tobacco-related conditions, a cycle that strikes some observers as a common-sense, harm-reduction approach to the real world, and others as completely insane.

Still, smokers pose fewer challenges than intravenous drug users, like that young man who wandered out of his bathroom to face our interrogation. He has an infected heart valve, and is receiving high doses of antibiotics through an intravenous line in his arm, a portal to his bloodstream that is apparently proving too tempting for him to ignore.

He needs antibiotic treatment, and we have no oral options for him. Among other considerations, if his guests keep providing him with substances to shoot into that line, it may well become infected and unusable, and he will get even sicker than he is.

He promises never to do it again.

So now what? We have a set of programmed responses, none particularly satisfying or effective.

We can give him some methadone to keep him from withdrawing. We can screen his visitors or post a watcher at his bedside. Some hospitals transfer patients like him to an expensive intensive care bed for even more careful monitoring. Some make contracts and threaten to kick patients out for violations. (Can we really kick them out, as desperately sick as they are? I’ve never actually seen that happen.)

Addiction experts point out that hospitalizations offer an excellent opportunity to urge addicts into treatment. Unfortunately, inpatient acute care hospital wards are spectacularly ill equipped to provide that treatment, which would require a specially trained, dedicated team of medical and mental health professionals able to treat infection and addiction at the same time, in the same bed, on the same premises. It doesn’t sound like a particularly expensive proposition, but it must be one, because it’s another thing I’ve never seen happen.

Instead, we routinely plan for patients to be transferred to drug treatment programs when they are discharged. Quite a few don’t last that long. Our patient will prove to be one of them: After a few more days, he will suddenly be gone, well enough to walk out of the hospital (and take his intravenous line with him).

Presumably, he will try to make it out in the world until he gets too sick and lands in another hospital, where events will repeat themselves in yet another baffling health care cycle.

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