Palliative Care Act is law in New York
Palliative Care Act is law in New York
Providers must provide info on care option
A bill recently signed into law in New York state will require a patient's health care provider to provide information and counseling to that patient on palliative care, prognosis, and end-of-life options, once the patient is diagnosed with a terminal illness.
If the provider determines that a patient lacks decision-making capacity, the provider must give that information orally or in writing to the patient's surrogate.
Compassion & Choices drafted and sponsored the act, along with its New York affiliate, according to Compassion & Choices President Barbara Coombs Lee.
The legislation was opposed in New York by the New York Medical Society; however, no representative of that physician's organization was available to speak to Medical Ethics Advisor.
Lee tells MEA that this is the second state in which this type of legislation has been passed, with California being the first, in 2008. In California, however, the bill, also originally drafted by Compassion and Choices, was known as The Right to Know End of Life Options Act, she says.
The New York law is called the Palliative Care Information Act (PCIA).
"I don't think we ever really seriously considered a Death with Dignity Act for New York," Lee says. Instead, the organization thought that the PCIA was "doable, and it would have a substantial impact on the quality of end-of-life care and the quality of the information that patients had and their ability to make end-of-life decisions."
Lee says that Compassion and Choices, which has sponsored the Death with Dignity Acts in Oregon and Washington, and fought for its passage through the courts in Montana, realized that most people aren't aware of the end-of-life options they legally have in the "other 50 states of the union."
"And they often die in agony and suffering needlessly, because they don't know about simple options like, 'Oh, gee, I could have my implantable defibrillator deactivated, or I could stop my cardiac pacemaker, or I could actually have some palliative care to support me [with] my symptoms; I don't have to end my life in an intensive care unit on a ventilator and tied to the bed," Lee says. "It's just a glaring problem."
Lee says that what really alerted her organization "to the acuity of the problem was the New England Journal of Medicine article about procedures, treatment, that physicians feel authorized to keep secret from their patients if they do not agree with them in particularly," among them palliative sedation.
"It was alarming to us, anyway that even people who had every reason to look forward to a tortured death, you know, a death with agonizing symptoms, [that] a large number of physicians felt justified in not advising patients that they could be sedated to unconsciousness at the end, if their symptoms became unbearable," Lee notes.
"Not only did they feel justified in not advising people of that option, but they also felt justified in not referring the patient to someone else who would advise them, and perhaps, offer it," she explains. "Some patients are going to accept, and some patients are not going to accept [this]. But it just seems unjust to keep a patient hostage to a physician's personal beliefs and personal biases against certain ethical end-of-life treatment choices."
National goals for legislation
Lee says she would like to see similar legislation passed nationally, or in every state.
"We would love to see that principle of a fully informed patient who asks to be fully informed, having the right to that information, in effect in every state, absolutely," Lee says.
"It just seems like a natural consequence of an informed consent process, but because there is so much research indicating that patients are woefully uninformed, and do suffer needlessly at the end of life, apparently our current advance directives and informed consent laws are not sufficient. So, we need something that spells out the duty with greater specificity," Lee says.
Source
Barbara Coombs Lee, President, Compassion and Choices. See www.compassionandchoices.org.
A bill recently signed into law in New York state will require a patient's health care provider to provide information and counseling to that patient on palliative care, prognosis, and end-of-life options, once the patient is diagnosed with a terminal illness.Subscribe Now for Access
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