End-of-Life Choice, Palliative Care and Counseling

Posts TaggedDavid Paterson

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.

Palliative Care Information Act will allow for better end-of-life choices

By David C. Leven
August 7, 2010
LoHud.com

The end of life is a difficult time for patients, their families, physicians and other health-care professionals involved with patient care. It is also an important time for discussions to take place between physicians, willing patients and family members to determine the best course of care for the patient during the last chapter of patients’ lives.

Having these discussions empowers patients or health-care agents or surrogates to make informed decisions about treatment in accordance with the patient’s goals of care and wishes. Unfortunately, despite the fact that most patients want to have these conversations with their physicians, recent studies reveal that these discussions often do not occur. This results in unwanted treatment and diminished quality of care.

A bill that has passed both houses of the state Legislature will, if signed into law, correct this problem. The Palliative Care Information Act is designed to ensure that patients diagnosed with a terminal illness, or decision-makers for those patients who have lost decisional capacity, will have the opportunity to receive information and counseling, if desired, regarding palliative care and end-of-life options appropriate to the patient. This includes prognosis and risks and benefits of the various options.

When dying patients receive information and counseling about their palliative and end-of-life care treatment alternatives, the quality of their end-of-life care is better than when discussions do not take place, their wishes are more often respected and they are referred to hospice sooner. Unfortunately, despite all of our efforts in recent years, hospice referral rates have not changed much and patients are referred much too often, if at all, only when close to death. This is in part due to the lack of discussions between physicians and patients until patients are very near death. The median length of stay in hospice, which provides excellent end-of-life care, is, sadly, only 17 to 19 days, with 33 percent enrolled for just eight days or less and another 33 percent enrolled for 31 days or less. The Palliative Care Information Act should ensure that timely hospice referrals are made.

With some 8,000 people dying each year in this region, the bill could have a positive impact on the quality of deaths of thousands of our residents yearly. Introduced by the chairs of the Assembly and Senate health committees, the bill was also co-sponsored by local Assembly members Amy Paulin, D-Scarsdale, and Sandra Galef, D-Ossining. The Palliative Care Information Act (S. 4498, A. 7617) should be approved by Gov. David Paterson. Support the bill by writing him at Executive Chamber, Albany, N.Y. 12224.

David Leven, a resident of Pelham, is the executive director of Compassion & Choices of New York, Pelham. Learn more at www.compassionandchoicesofny.org.