Pulitzer Prize-winning journalist Saul Friedman (bio) writes the weekly Gray Matters column which appears here each Saturday. Links to past Gray Matters columns can be found here. Saul's Reflections column, in which he comments on news, politics and social issues from his perspective as one of the younger members of the greatest generation, also appears at Time Goes By twice each month.
I assume you recall the summer of the “death panels.” That was last year when a few right-wing demagogues led by Sara Palin (who else?) warned that the health care reforms under debate would lead to deaths of patients whom doctors considered too old or ill to treat. Now we know they probably helped hasten the deaths of the desperately ill.
Here’s the background. In August, 2009, with the help of unthinking journalism and, naturally, the Fox loudmouths, Glenn Beck and Rush Limbaugh, the phrase “death panels” set off a fury of raucous town meetings with organized right-wing plants stirring up the mob, bringing confused innocents along with them on a tide of anger.
Few would listen to or even allow speakers, members of Congress, to explain the issue and call the lies for what they were. Even veteran Senator Charles Grassley, R-Iowa, who helped write the reform bill (he voted against), told a crowd that there was a genuine fear that “Granny” would die at the hands of a death panel. He regretted that stupidity, but the damage was done.
The section of the reform legislation that caused the furor, which was introduced by a Republican, was optional and totally benign. It merely authorized Medicare (and insurance companies) to pay physicians for their services if, during a period of five years, they are asked to and provide counsel to patients on alternatives to treatment, including hospice or palliative care.
Republicans and assorted right-wingers who did not support any health care reform cried “euthanasia.”
Cowed and frightened by the furor, President Obama and Democratic sponsors of the health reforms deleted the section. There have been sad consequences. Those fear mongers who raised the false alarm of “death panels” may have been responsible for the early deaths of terminally ill patients, who could have lived longer and more comfortably, free of pain, with hospice or palliative care.
“[D]octors have found that patients with terminal lung cancer who began receiving palliative care immediately upon diagnosis not only were happier and in less pain as the end neared – but they lived nearly three months longer...The findings...confirmed what palliative care specialists had long suspected. The study also, experts said, cast doubt on the decision to strike end-of-life provisions from the health care overhaul passed last year.”
Palliative care, which is optional for the patient, means forgoing curative treatment such as surgery, radiation or chemotherapy any of which may be more painful or debilitating than the disease.
A physician, whose office visits, exams and treatments are partly covered by Medicare, may also advise a patient (for no extra fee) on the possibility of palliative care. If the doctor states that the patient has less than six months to live, the palliative care (which may include pain-killing drugs, physical examinations, and even chemotherapy that is not meant to cure) is usually provided by a hospice organization whose services are fully covered by Medicare.
And, as I’ve written, hospice care won’t end if the patient lives beyond those six months. It’s called “open access.”
Indeed (a personal acknowledgment), I have been on ‘open access” palliative care, with the help of the Hospice of the Chesapeake, for more than six months because the cancer I’m fighting seems not to be growing. I live with uncertainty, but I have the comfort of knowing the hospice professionals are there to help if things change.
Dr. Diane E. Meier, director of Mount Sinai School of Medicine’s Center to Advance Palliative Care told the Times, the study
“...shows that palliative care is the opposite of all that rhetoric about ‘death panels.’ It’s not about killing Granny; it’s about keeping Granny alive as long as possible – with the best quality of life.”
Dr. Atul Gawande, a Harvard Medical School surgeon who has written long articles on medical care for the New Yorker, called the results of the study “amazing.” His latest article, Letting Go – What Should Medicine Do When it Can’t Save Your Life, recounts the long suffering of patients who chose to fight cancer with radiation, surgery or poisonous chemotherapy before their deaths.
As the Times reported, while the study could not determine why the patients lived longer, experts pointed out that depression and constant pain deprived patients of sleep, and chemotherapy means th loss of appetite, nausea, hair loss and other debilitating side effects.
Dr. Sean Morrison, president of the American Academy of Hospice and Palliative Medicine, told the Times that the study was the
“...first concrete evidence of what a lot of us have seen in our practices – when you control pain and other symptoms, people not only feel better, they live longer.”
Of course, depending on the diagnosis and prognosis, some people opt for any treatment no matter how painful to fight their disease. But there is no way of knowing how many people have been denied access to hospice and the comforts of palliative care for their terminal or extended illness, which may not be cancer. And there is no way of knowing how many people were denied a longer, better quality of life.
But my hospice social worker pointed out that many doctors are more inclined to treat illnesses and try for a cure than suggesting palliative care. That’s part of their training. End-of-life counseling and palliative care are fairly new developments in dealing with illness.
If my case is an indication of the process, my oncologist did not know how my cancer was progressing, but he told me that some chemotherapy could not cure it or get rid of it, but may curb its growth. That meant palliative, non-curative care. I could have opted for more aggressive treatment. But I was admitted to hospice, which has cared for me ever since, sparing me from having to go to emergency rooms for small problems. As luck would have it, something, perhaps the chemo, stopped the progress of the cancer – for now.
I’m not accusing doctors of being greedy but under our system, the vast medical industrial establishment of physicians, specialists, hospitals and labs get paid more by Medicare and insurance companies for the expensive efforts to cure, which may include CT scans, MRIs, blood tests, radiation, chemotherapy and surgery. And they have great investments in buildings and technology to pay for.
In addition, there is a natural conflict between palliative care specialists and oncologists and surgeons who are battling cancer and see palliative care as “giving up.”
Because of the “death panels” furor, doctors won’t get paid (the fees would have been relatively small) to counsel on end-of-life decisions for Medicare patients. But with that section no longer part of the health reforms, privately insured patients in their fifties who have spreading cancers or other terminal illnesses will have difficulty getting covered for getting access to information about palliative care and hospice unless the physician volunteers it.
A note to Sarah Palin, et al: your death panels rants have probably denied at least some Grannies of a longer, more comfortable life.