End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Posts TaggedPCIA

Medical Society of New York Fights Palliative Care Information Act Despite Mounting Evidence

The ink of Governor Paterson’s signature is barely dry on New York’s Palliative Care Information Act (PCIA), drafted and sponsored by Compassion & Choices and its New York affiliate, yet evidence mounts daily for its vast and dramatic impact on end-of-life care. I predict this bill will shift decision-making authority radically from physicians to patients, and dwarf the impact of the Oregon and Washington Death with Dignity bills that, themselves, sent tremors through Medicine over the last thirteen years.

The PCIA merely instructs physician to discuss prognosis with seriously ill patients and ask if they would like information on hospice, palliative care and appropriate end-of-life options. But this simple requirement runs counter to an endemic medical culture that keeps prognoses secret and imposes painful, intensive technology on uninformed, dying patients.

Evidence of woefully uninformed patients has been clear for years. In 2002 researchers reported in the Annals of Internal Medicine that even if patients with cancer requested survival estimates, physicians would provide a frank estimate only 37% of the time. These authors reported “In general, we found that the propensity to avoid frank disclosure was relatively homogeneously distributed among patients and physicians. That is, most types of physicians tend to avoid frank disclosure for most types of patients with cancer.” In 2008 only 16% of oncologists told researchers they would discuss a terminal prognosis, even “if my patients ask about it.”

The Palliative Care Information Act changes all that. The duty to offer information arises when the physician perceives a patient is likely to die within six months, with or without disease-focused treatment. Having an affirmative duty will force the analysis of prognosis, and prompt the conversation 83% of patients say they want.

I would remind anyone squeamish about state lawmakers telling doctors how to practice medicine that the Medical establishment is notoriously protective of its prerogatives of secrecy and dominance in the doctor-patient relationship. Organized Medicine does not willingly assign decision-making power to mere patients. We would not have the doctrine of informed consent were it not for courts asserting the right for patients to understand alternatives and risks prior to consenting to surgery and other procedures. The 1972 D.C. Appellate case Canterbury v. Spence, first set forth the duty to inform. We would have no standards for the scope of pre-consent information, were it not for state legislatures codifying informed consent requirements throughout the nation.

The Medical Society of New York apparently sensed a threat in the PCIA and vehemently opposed it. In an embarrassingly revealing letter to colleagues, Society president Leah McCormack deplores the destructive impact palliative care information will have on “a patient’s spirit.” Dr. McCormack asserts, “Mandating physicians to offer terminally ill patients information about end-of-life care options may undermine patients’ beliefs and convictions that they can prevail against the disease and could undercut their confidence in the course of treatment and in their physician.”

Recall the conversation Dr. McCormack rejects occurs only after the physician determines the patient will die within six months, regardless of choice of therapy. So it seems her preference would be to withhold prognostic information, raise false hope for cure and entice patients by promoting “confidence” in therapies of ever-diminishing benefit. All the while she would withhold information about palliative therapies shown to prolong life by an average of three months in lung cancer patients. And she would do this in the service of the patient’s ‘spirit’ — or rather, in the service of her particular beliefs about the patient’s spirit.

A physician presuming to know the needs of my spirit, and acting on that presumption, is a scary prospect. I think it would scare most patients, dying or not. And as if to underscore the legitimacy of this fear, last month’s Journal of General Internal Medicine includes a study entitled “How Well Do Doctors Know Their Patients?” Centering on health beliefs, it reveals doctors to be generally clueless about their patients’ beliefs and values. A sample of 29 physicians and 207 patients from 10 clinics demonstrates physicians’ perceptions of their patients’ beliefs are usually wrong, because physicians assume their patients’ beliefs align with their own.

All this research underscores the finding published three years ago in the New England Journal of Medicine that 40 million Americans receive care from physicians who don’t believe they are obligated to disclose information about medically available treatments they consider objectionable. One hundred million have doctors who feel no obligation to refer them to another provider for such treatments. Total sedation at the end of life emerged as one such treatment likely to be kept secret from patients. Compassion & Choices’ pursuit of laws protecting patients from such “doctors of conscience” began with that study.

This modest Palliative Care Information Act certainly has its work cut out for it. The habits, culture, presumptions and prerogatives of a powerful profession conspire to keep dying patients uninformed, even as they endure needless suffering from a futile, aggressive and brutal battle against mortality. As it happens, New York is exactly the place to start. Graduate medical education is big business in New York, where giant teaching hospitals establish medical practice patterns of a lifetime. At least one in six American physicians receives their training there. Now that training will include the duty to start a conversation about realistic prognosis, palliative care and end-of-life decisions. This gives me hope.

New York’s Palliative Care Information Act: A Sea Change in End-of-Life Care

Word came Sunday night from Compassion & Choices New York that Governor Paterson had signed our bill, the Palliative Care Information Act, (PCIA) and it would take effect in 180 days. Hooray!! We hope and trust this event marks the beginning of the end for endemic medical habits that cause so much suffering at the end of life. If we had been in the office, we would have lifted a toast of bubbly!

A simple bill, it instructs New York doctors and nurse practitioners to offer terminally ill patients information on hospice, palliative care and appropriate end-of-life options. Patients may accept or decline the offer, but at least they do not bear responsibility for starting what may be the most important conversation of their lives.

The bill, developed by Compassion & Choices in concert with our New York affiliate, passed the Assembly and Senate by large margins, but the governor’s signature remained in doubt because the Medical Society of New York pressed him for a veto. The Society’s inane claim that doctors who ask if their patients want to talk about palliative care, won’t also “fight” for their patients or “go the extra mile” to “aggressively recommend treatment options” defies both common sense and medical research.

Study after study disproves such muddled misconceptions and affirms the enormous value of conversations about end-of-life care. Just today the New England Journal of Medicine reports that lung cancer patients who receive palliative care actually live three months longer than similar patients not receiving such care.  The medical society’s arguments perfectly demonstrate how the mindset of doctors can trap their patients in a state of ignorance and subject them to escalating rounds of futile, burdensome and even life-shortening therapies.

David Leven, Executive Director of Compassion & Choices New York, urged these arguments on the governor, along with New York’s Hospice and Palliative Care Association and many influential physicians. Now, at last, patients nearing the end of life will receive an offer to discuss it. Some will decline the offer. Many thousands will accept and use the information to negotiate a death that honors their life and leaves memories of peace and comfort for the loved ones with them at the end. The PCIA will do what $100’s of millions in professional education did not accomplish. It will change the medical culture’s imperative to never speak of death and offer any treatment, no matter how remote the chance for success.

And not a moment too soon. New York and the nation recently got an insider’s look at end-of-life decision-making from a heart-wrenching article by Dr. Atul Gawande in the New Yorker. It displayed a catalogue of suffering from endless aggressive treatments visited upon willing and uninformed patients as doctor after doctor failed to muster the courage to discuss imminent death. Perceptive readers of the article might have noted the relative absence of informed patients, asking critical questions about side effects of treatment and chances for success. With no offer to discuss options other than more chemo, surgery or radiation, patients assume there are none.

PCIA will change those assumptions, but it will not force frightening facts on unwilling patients. The bill is clear that patients may decline the offer of information and that ends the discussion. Patients whose wish is not to know will still get that wish.

Many readers may recall the disturbing end-of-life story of Dr. Desiree Pardi, a well-known palliative care specialist at Weill Cornell medical center. As reported, Dr. Pardi requested and even demanded the most brutal cancer treatments right up to her death. Throughout her ordeal she willfully maintained a state of ignorance about progression of her cancer. She directed that all information go to her husband, referred to herself as the “queen of denial” and suffered a miserable death.

Nothing in the PCIA will influence those who prefer denial and ignorance to choose a different course. But it will empower the thousands more who welcome an opening for the conversation they secretly yearn for. Those are likely to absorb what they hear eagerly and make informed, well-considered judgments about the unfolding of the last chapter of their lives. Greater numbers will choose concurrent palliative care or hospice services delivered in their own homes. Many will find comfort knowing unbearable symptoms can be addressed with palliative sedation, and they can choose to discontinue treatments like dialysis or artificial ventilation at any time.

Compassion & Choices believes knowledge is power, and PCIA empowers patients to chart their course from a base of understanding.  How well it accomplishes this depends on regulations and implementation guidance from the New York State Palliative Care Education and Training Council.  We hope that body grants patients the full measure of empowerment PCIA promises and helps countless patients find their own path to a peaceful death when medicine offers no cure.