This year, New York became the second state to enact a law requiring health care providers to provide information on end-of-life options to terminally ill patients. California was the first; the Right to Know End-of-Life Options Act has been in effect there since January 1, 2009. New York’s Palliative Care Information Act took effect on February 9, 2011.
What do these laws mean, to whom do they apply—and in a larger context, is it possible to legislate one of the most difficult and intimate conversations a health care provider can have with a patient?
It’s the Law, But What Does That Mean?
First, the facts about these laws:
California’s Right to Know End-of-Life Options Act states that “when a health care provider … makes a diagnosis that a patient has a terminal illness, the health care provider shall, upon the patient’s request, provide the patient with comprehensive information and counseling regarding legal end-of-life options … and provide for the referral or transfer of a patient ... if the patient’s health care provider does not wish to comply with the patient’s request for information on end-of-life options.”
The law defines a “health care provider” as an attending physician or surgeon. However, it is further stipulated that the phrase “also means a nurse practitioner or physician assistant practicing in accordance with standardized procedures or protocols.”
New York’s Palliative Care Information Act states that “If a patient is diagnosed with a terminal illness or condition, the patient’s attending health care practitioner shall offer to provide the patient with information and counseling regarding palliative care and end-of-life options appropriate to the patient, including … prognosis, risk and benefits of the various options; and the patient’s legal rights to comprehensive pain and symptom management.”
The state Department of Health further clarifies that physicians and NPs are subject to the requirements of the law. PAs and other health care professionals may also, consistent with their scope of practice, provide information about these services but are not required to do so.
It is unclear how much of a difference these laws will make. In California, there has not been a noticeable flurry of concern or activity in response to the law; some clinicians haven’t even registered its existence on their radar. In a state facing an ongoing and major fiscal crisis, enforcing this type of law probably is not going to be a top priority.
New York’s law was passed despite protests from the medical society, which felt that parties that would be directly impacted by the law were not sufficiently consulted on its import and implementation. In May, two physicians from Maimonides Medical Center in Brooklyn wrote in the New England Journal of Medicine that “Physicians and health care organizations are struggling to understand what the law requires.”
Whether such laws are enforceable or effective in and of themselves, they do serve another purpose. They remind us of a largely unmet need in patient care: the need for an open and honest discussion about the end of life.
Shattering Hospice Myths
Medicine is about healing. Someone becomes sick, and the clinician strives to make him or her well again. But there are devastating diseases about which we don’t know everything, and for many of them, a full-blown cure is not yet available. Even where life can be prolonged, death is never completely vanquished. Everyone knows that, but it is not easy to accept.
“Because most people die in old age, these issues get a lot of attention in the geriatric medicine arena—but this is across the lifespan,” says Freddi I. Segal-Gidan, PA, PhD, Co-Director of the Alzheimer’s Research Center of California at Rancho Los Amigos National Rehabilitation Center in Downey. “Many people spend a lot of money in their last months of life because we are a very interventionist medical society. And we still believe that we can cure and save everybody.”
“It’s true that we can always do something more,” says Karen Ayers, ACNP, who works with Hospice of Humboldt in California. “But is it futile? Is it going to work? Or is it just going to flog somebody? That’s really the question.”
Americans have already proven that they are not ready for a discussion of the financial aspects of treatment for terminal illnesses and other chronic, life-shortening conditions. (Recall the “death panels” propaganda?) But the larger issue is how individual patients would prefer to die, if “in my sleep, at a very old age” is not possible.
Some are inclined to fight until the last moment; if two rounds of chemo didn’t do the job, well, let’s try a third. Others would prefer to be as comfortable as possible for the remaining days/weeks/months of their lives. Most do not want to spend the end of their lives hooked up to machines in a hospital.