End of Life Care in America

(This essay appeared in Dailykos blog with multiple comments for those interrested)

This is a review, more of a strong recommendation for reading a long article in New Yorker Magazine "Letting Go, What should medicine do when it can’t save your life?" by Atul Gawand on end of life medical care.   It is well researched, written by a physician who follows several individuals facing death from terminal cancer.  While this depressing subject is systematically ignored, for many reasons it must not continue to be so.  I am writing this because I learned important information that is contrary to what I thought about the Hospice movement, and how it is handled under Medicare. 
This article does not focus on the fiscal effects of end of life care, as important as this is since the current system is far beyond this nation's financial ability to maintain.   Written by a physician, he writes with both a professional and a human sensitivity.  While there is a natural aversion for individuals to face their own, or loved one's, impending death,  one of the tragedies that has exacerbated the inherent difficulty of the subject is it's being distorted for partisan political purposes.  As a person who did considerable research resulting in serious objections to the recently passed Health Reform,  this article describes one laudable, and actually cost saving provision that encourages primary physicians to discuss this issue with their Medicare patients.   This became part of the attack by partisan opponents, decried by many as a foot in the door for  "Death Panels."
For those who don't read the long article, I will cover a few of the points that were most important. The writer introduces the subject with:
(pp 4) Like many people, I had believed that hospice care hastens death, because patients forgo hospital treatments and are allowed high-dose narcotics to combat pain. But studies suggest otherwise. In one, researchers followed 4,493 Medicare patients with either terminal cancer or congestive heart failure. They found no difference in survival time between hospice and non-hospice patients with breast cancer, prostate cancer, and colon cancer. Curiously, hospice care seemed to extend survival for some patients; those with pancreatic cancer gained an average of three weeks, those with lung cancer gained six weeks, and those with congestive heart failure gained three months. The lesson seems almost Zen: you live longer only when you stop trying to live longer. When Cox was transferred to hospice care, her doctors thought that she wouldn’t live much longer than a few weeks. With the supportive hospice therapy she received, she had already lived for a year.
Hospice has tried to offer a new ideal for how we die. Although not everyone has embraced its rituals, those who have are helping to negotiate an ars moriendi for our age. But doing so represents a struggle—not only against suffering but also against the seemingly unstoppable momentum of medical treatment.  
Dr. Gawand does not place himself above the pressures that militate for treatment beyond objective reason.  He describes his own experience, this time in his role as a surgeon.   It was with one the patient followed for the article, a women named, Sara Monopoli, in her thirties whose terminal cancer was discovered shortly before giving birth to her first child:
Ealier that summer, a PET scan had revealed that, in addition to her lung cancer, she also had thyroid cancer, which had spread to the lymph nodes of her neck, and I was called in to decide whether to operate. 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.  (Eventually he said:) We could monitor the thyroid cancer and plan surgery in a few months.
I saw her every six weeks, and noted her physical decline from one visit to the next. Yet, even in a wheelchair, Sara would always arrive smiling, makeup on and bangs bobby-pinned out of her eyes. She’d find small things to laugh about, like the tubes that created strange protuberances under her dress. She was ready to try anything, and I found myself focusing on the news about experimental therapies for her lung cancer. After one of her chemotherapies seemed to shrink the thyroid cancer slightly, I even raised with her the possibility that an experimental therapy could work against both her cancers, which was sheer fantasy. Discussing a fantasy was easier—less emotional, less explosive, less prone to misunderstanding—than discussing what was happening before my eyes.

Under Medicare, to receive Hospice care one has to agree to forgo aggressive treatment.  In surveys this is appreciated by those in their final months,  and their families suffered less, including measurable indexes of depression.  Much of the article goes into the details of this type of treatment. The following experiment by a private insurer went further, with unexpected result that has serious implications on the the fiscal and individual level
(pp8) In late 2004, executives at Aetna, the insurance company, started an experiment. They knew that only a small percentage of the terminally ill ever halted efforts at curative treatment and enrolled in hospice, and that, when they did, it was usually not until the very end. So Aetna decided to let a group of policyholders with a life expectancy of less than a year receive hospice services without forgoing other treatments. A patient like Sara Monopoli could continue to try chemotherapy and radiation, and go to the hospital when she wished—but also have a hospice team at home focusing on what she needed for the best possible life now and for that morning when she might wake up unable to breathe. A two-year study of this “concurrent care” program found that enrolled patients were much more likely to use hospice: the figure leaped from twenty-six per cent to seventy per cent. That was no surprise, since they weren’t forced to give up anything. The surprising result was that they did give up things. They visited the emergency room almost half as often as the control patients did. Their use of hospitals and I.C.U.s dropped by more than two-thirds. Over-all costs fell by almost a quarter.
Among elderly patients, use of intensive-care units fell by more than eighty-five per cent. Satisfaction scores went way up. What was going on here? The program’s leaders had the impression that they had simply given patients someone experienced and knowledgeable to talk to about their daily needs. And somehow that was enough—just talking.
The marshaling of the most advanced technology for medical care creates issues that we as a society have managed to ignore.  We are a religious people, and too easily ascribe to a higher being the right to determine when life should end.   And that "higher being" is as often wearing a white coat with a stethoscope as he is a clerical robes.   This article gives some practical information on those facing these painful decisions for themselves or loved ones, and raises larger questions that we must answer as a society. 
Here is a previous diary from Dailykos about an article by this author looking at the business side of medicine that shapes these excessive treatments.

During the HCR debate I wrote this essay, that gives some of the roots causing treatment for hopeless cases.  I paraphrased the conclusion of a White House Bio-ethics report that expresses the underlying thinking
Modern medical advances make death and debility seem no longer inevitable, and as such, even less bearable.  As we learn of both the reality and the myths of such advances, those who fear being denied them become terrified, and at times, enraged. The stakes are high, and getting higher as the previously mysterious causes of death and disease start to be understood, with the growing real prospect of intervention.

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