Alex Smith said… Thanks Helen and Wendy. I would like to see more about the role of the primary care physician. Would be great if the New Yorker picked a primary care doc next Jerome Grupman is a neurologist, and Atul Gawande is a surgeon. For those of you interested in hearing more from Atul Gawande on this subject, he will be interviewed by Terri Gross today Thursday. One thing that struck me was how young patients were.
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Ultimately, Gawande suggests, the problem with the way we deal with death today is that we have forgotten the art of dying. Palliative and hospice care can help us recover a lost art, he adds, though not quite in the way most of us expect. The goal is not to cut costs and curtail suffering by shortening the process of dying. In fact research shows that those who receive hospice or palliative care often live longer than other patients. Once again, higher quality care translates into more affordable care.
First, aim for better care. The savings will come. It started with a cough and a pain in her back. Then a chest X-ray showed that her left lung had collapsed, and her chest was filled with fluid. A sample of the fluid was drawn off with a long needle and sent for testing. Instead of an infection, as everyone had expected, it was lung cancer, and it had already spread to the lining of her chest.
She exercised. She ate well. She had wavy brown hair, like her mom, and she was perfectly healthy. Paul Marcoux, told her that the cancer was inoperable. She had a right to know. Even with chemotherapy, the median survival is about a year.
But it seemed harsh and pointless to confront Sara and Rich with this now. Vivian was in a bassinet by the bed. They were working hard to be optimistic. As Sara and Rich later told the social worker who was sent to see them, they did not want to focus on survival statistics. She had told her family on several occasions that she did not want to die in the hospital. She wanted to spend her final moments peacefully at home. It is something else to recognize that death is imminent.
First, our own views may be unrealistic. A study led by the Harvard researcher Nicholas Christakis asked the doctors of almost five hundred terminally ill patients to estimate how long they thought their patient would survive, and then followed the patients. Sixty-three per cent of doctors overestimated survival time.
Just seventeen per cent underestimated it. The average estimate was five hundred and thirty per cent too high. And, the better the doctors knew their patients, the more likely they were to err. You worry far more about being overly pessimistic than you do about being overly optimistic. And talking about dying is enormously fraught. When you have a patient like Sara Monopoli, the last thing you want to do is grapple with the truth.
I was, too. This second, unrelated cancer was in fact operable. But thyroid cancers take years to become lethal. Her lung cancer would almost certainly end her life long before her thyroid cancer caused any trouble. Given the extent of the surgery that would have been required, and the potential complications, the best course was to do nothing.
But explaining my reasoning to Sara meant confronting the mortality of her lung cancer, something that I felt ill prepared to do. So she was geared up, eager to discuss when to operate. And I found myself swept along by her optimism. Suppose I was wrong, I wondered, and she proved to be that miracle patient who survived metastatic lung cancer? I told Sara that the thyroid cancer was slow-growing and treatable. The priority was her lung cancer, I said. We could monitor the thyroid cancer and plan surgery in a few months.
They did not want to talk about dying. This does the patient no good. But, he went on, there were also experimental therapies. He told them about several that were under trial. Sara and her family instantly pinned their hopes on it. To enroll, she would need to wait two months, in order to get far enough past the episode. In the meantime, [her oncologist] suggested trying another conventional chemotherapy. An opportunity to prepare for the inevitable was forgone. And it all happened because of an assuredly normal circumstance: a patient and family unready to confront the reality of her disease.
For me, the long tail for a patient like her is three to four years. Four years would give her the opportunity to get to know her daughter as a person, and to leave her with the firm memory of a mother who loved her. Little wonder that Sara was eager to try anything. On February 12th, she completed five days of radiation treatment, which left her immeasurably fatigued, barely able get out of bed. She ate almost nothing. She weighed twenty-five pounds less than she had in the fall.
She confessed to Rich that, for the past two months, she had experienced double vision and was unable to feel her hands. He went to a medical library when he got the diagnosis and pulled out the latest scientific articles on the disease. The news was devastating. But then he began looking at the graphs of the patient-survival curves.
The patients were not clustered around the median survival but, instead, fanned out in both directions. Moreover, the curve was skewed to the right, with a long tail, however slender, of patients who lived many years longer than the eight-month median. This is where he found solace.
And he did. Following surgery and experimental chemotherapy, he lived twenty more years before dying, in , at the age of sixty, from a lung cancer that was unrelated to his original disease. Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way.
For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light. There is almost always a long tail of possibility, however thin.
Hope is not a plan, but hope is our plan. She was gray, breathing fast, her body heaving with each open-mouthed gasp. She looked as if she were drowning. He tried turning up the oxygen in her nasal tubing, but she got no better. A few minutes later, firemen swarmed up the stairs to her bedroom, sirens wailing outside. The team prescribed a small dose of morphine, which immediately eased her breathing. The next morning, they were the ones to hold back the medical team.
At least she was spared at the very end. Twenty-five per cent of all Medicare spending is for the five per cent of patients who are in their final year of life. Spending on a disease like cancer tends to follow a particular pattern. There are high initial costs as the cancer is treated, and then, if all goes well, these costs taper off.
Medical spending for a breast-cancer survivor, for instance, averaged an estimated fifty-four thousand dollars in , the vast majority of it for the initial diagnostic testing, surgery, and, where necessary, radiation and chemotherapy.
Yet when the spending begins, no one knows which patients will survive. Maybe this is just a set-back; maybe the situation will turn around. Demagogues shout about rationing and death panels.
Market purists blame the existence of insurance: if patients and families paid the bills themselves, those expensive therapies would all come down in price. The failure of our system of medical care for people facing the end of their life runs much deeper. To see this, you have to get close enough to grapple with the way decisions about care are actually made.
As for last words, they hardly seem to exist anymore. Technology sustains our organs until we are well past the point of awareness and coherence. Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are?
Is someone with terminal cancer, dementia, incurable congestive heart failure dying, exactly? When there is no way of knowing exactly how long our skeins will run—and when we imagine ourselves to have much more time than we do—our every impulse is to fight, to die with chemo in our veins or a tube in our throats or fresh sutures in our flesh. The fact that we may be shortening or worsening the time we have left hardly seems to register.
We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do.
We want these choices.
“Letting go,” and why it’s so hard to do: Atul Gawande explores the challenges of end-of-life care
Shopping For all but our most recent history, dying was typically a brief process. Whether the cause was childhood infection, difficult childbirth, heart attack, or pneumonia, the interval between recognizing that you had a life-threatening ailment and death was often just a matter of days or weeks. Consider how our Presidents died before the modern era. George Washington developed a throat infection at home on December 13, , that killed him by the next evening.
Atul Gawande: “Letting Go: What Should Medicine Do When It Can’t Save Your Life?”
Ultimately, Gawande suggests, the problem with the way we deal with death today is that we have forgotten the art of dying. Palliative and hospice care can help us recover a lost art, he adds, though not quite in the way most of us expect. The goal is not to cut costs and curtail suffering by shortening the process of dying. In fact research shows that those who receive hospice or palliative care often live longer than other patients.
A surgeon and writer, Dr. In his article Dr. Gawande explains that expense is the reason that end-of-life medical care has become a topic of discussion. However, if the disease worsens, treatment escalates, and cancer-related expenses create a U-shaped curve.