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GRAY MATTERS: Of Death Panels and Palliative Care

SaulFriedman75x75 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.

That is one of the conclusions of a study in the August 18 New England Journal of Medicine on the value of palliative care for terminally ill patients. As The New York Times reported,

“[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.

Write saulfriedman@comcast.net

Comments

I hear you loud and clear.
If nothing else, you are living proof.
It matters Saul, it matters!

"...access to information about palliative care and hospice unless the physician volunteers it." Guess there's something I'm not understanding in this paragraph -- Do you lose your voice during doctor's visit? Why not just ask -- ask him/her to explain all options, from extremely agressive to palliative care. If he/she doesn't have the "time to be bothered", it's time to change doctors, just as you would change your cleaning lady if she doesn't have time to mop bathroom floor. They are both YOUR EMPLOYEES, any 'professional' degree(s) doesn't or shouldn't change that.

In Denver where I live and was primary caregiver to my father who died this summer at the age of 91, there is a distinction made between "palliative care" and "hospice care." Both are available and both offer comfort care and support for the patient and family members, but with the palliative care option, patients are NOT required to forgo medical treatment as they are with hospice. In other words, patients can have BOTH palliative care and treatment.

This is a complete win-win both medically and psychologically as no one needs to feel that they are "giving up" on life in order to be out of pain and breathing easy. For my dad who maintained until the end that he would live to be "at least" 100, palliative care offered an acceptable alternative to hospice.

It looks like these programs vary perhaps by region or by provider. It seems that it would be good to keep looking until one finds a program that meets ones own particular situation.

As some of you know, I just lost my primary care physician when he joined the MD VIP program. Later this month I have an appointment with the doctor who I hope will replace him. I scheduled this first appointment solely for the subject of your post. I will tell him of my wishes on the end of life treatment and give him my medical directives.

If this doctor is uncomfortable with withholding treatment when I am terminal, I shall find another doctor. I refuse to go through painful treatments that may, or my not, prolong my life by a few months. Heroic measures are not for me.

Saul,

Each of my parents deaths had issues directly relating to this subject. They had taken what I consider to be the first step in managing the end: each had signed a medical advanced directive. But the reality of dying got complicated when the time came for both of them. It's not simple, is it?

You're blog has spurred me to sit down with my sons and talk about what needs to be done and how to go about doing it.


Saul
Thank you for all you do in keeping us informed about medical and other issues.

I wish you well.

Thanks for this thoughtful post. My mom had hospice for seven months. It was a wonderful experience. I hope to be fortunate enough to have hospice myself when the time comes.

Rush does NOT work for FOX News.

Yer, Schmidley, even the brilliant can make mistakes.
No thought on the real significance of his article?--
Rants about non-exsistant "death panels" may have adversely affected the quality of care one receives at the end of life. Saul, I pray God grants you many additional years to share your
wisdom with us. Funny how at this stage of one's life, while reading the paper, our eyes are drawn to the Obituaries to see if someone we knew has died; reading those of strangers sometimes makes one think "Gosh, what an outstanding, interesting life that man/woman led! How fortunate it must have been to have known or worked with him/her!"

Thank you, Saul, for clarifying for me what has been a confusing subject - the difference between palliative care and hospice...

All the best to you.

My 82-year-old father-in-law died last year on April 14. He had advance medical directives in place, but real life gets messy. After seven weeks of hospitalization between acute care and rehabilitation, he was incoherent toward the end. My exhausted mother-in-law did not want to make decisions on his behalf, and turned to me and my husband to decide whether to agree to a palliative care admission to the hospital. We went ahead with his directives, which were to be kept comfortable should he not be in a position to recover.

But there was drama in the last days between family members over continuing to treat the pneumonia and tube feeding. My brother-in-law insisted steps be taken to “make him better.” Even though my father-in-law fought against tube feeding earlier in his hospitalization, it was given to him toward the end when he could not fight it.

Families need to be able to talk to each other as well as the doctors involved with a loved one’s care.

You can read my father-in-law’s story at http://thefamilyplot.wordpress.com/2010/03/29/a-passover-wish/. See how important it is to speak and listen with the head as well as the heart.

This is such an excellent topic for you to discuss here. Really appreciate the content, issues and links you provide for potential references.

A few of the numerous older patients with whom I've provided therapy have had their medical conditions change (usually those coping with swallowing difficulties who must decide whether or not they want food by alternative means -- tube.)
Palliative care becomes their best choice for some. Some choose an independent approach, others select hospice.

I especially appreciate the writings and books I read by Dr. Atul Gawande.

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