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

August 19, 2010

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.

Compassion & Choices
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Patricia A. González-Portillo
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VICTORY: Colorado Gov. Jared Polis signed the improved End-of-Life Options Act.