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

Right To Know signed into law in New Yorkby Sonja

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On August 15, 2010, New York Governor David Paterson signed the Palliative Care Information Act into law. This “Right To Know” legislation requires that health care providers offer to tell terminally ill patients about hospice care and options for pain and symptom management. The law also requires that providers offer to give a prognosis with and without life sustaining treatment. Compassion & Choices national along with Compassion & Choices-New York, drafted and sponsored introduction of this legislation.

The Palliative Care Information Act requires physicians or surgeons to provide willing terminally ill patients with counseling about end-of-life care currently available to New York residents. That counseling will include information about hospice care, either at home or in a health care setting; the patient’s right to refuse or withdraw life-sustaining treatment; continuing to pursue disease-specific treatment; establishing a living will or advance directive; pain medication; and the outcomes benefits and burdens of each option, based on the interests of the patient.

“Too many patients and their families make the most important decision of their lives – how they will live their final days – without being fully informed of their legal alternatives,” said Barbara Coombs Lee, President of Compassion & Choices. “Knowledge empowers patients and gives them comfort. Only with full information can they choose among end-of-life options available to them. The New York Palliative Care Information Act requires physicians and health care providers to provide a full range of information about options. The Act puts into patients’ hands the information and power to choose.”

The Act also requires health care providers who do not wish to comply with the counseling requirement to refer or transfer the patient to another provider. In 2001, a study published in the New England Journal of Medicine revealed an alarming statistic: an estimated 40 million Americans see physicians who either feel no obligation or are undecided about whether they should present all possible treatment options to patients, based upon their personal objection. “Tens of thousands of dying New Yorkers will have a better quality of life and better deaths as a result of this bill, as most will decide, when fully informed of their options, to forego aggressive but often unnecessary interventions and choose palliative care options instead,” said David C. Leven, Executive Director of Compassion & Choices New York. “It will also result in substantial cost savings.”

“As an advocate for patients, Compassion & Choices was the catalyst and the principal force behind the measure,” said Kathryn Tucker, Director of Legal Affairs for Compassion & Choices. “The bill was modeled after similar legislation we championed in California. New York’s bill provides an even stronger requirement that patients get the counseling they need to be able to direct their care at this critical juncture.” State Senators of both parties provided support of two-thirds of that chamber and the Assembly approved it unanimously. The Act was supported by the Hospice and Palliative Care Association of New York State and the New York State Association of Health Care Providers.

The Act can help patients understand and weigh all of their options, including aggressive curative therapies, and make an informed decision that best meets their needs. It gives the physician an opportunity to discuss the benefits and side effects of all available treatments, and it can facilitate earlier access to hospice and palliative care. Recent studies prove the importance of such a conversation: research published in the October, 2008 issue of the Journal of the American Medical Association found terminal patients who have a discussion about end-of-life care with their physician or more likely to receive hospice care and establish a Do-Not-Resuscitate order. They are also less likely to enter an intensive care unit. The study further found the discussion prevents suffering at the end of life and does not make patients more anxious or fearful.

“Dying patients needlessly suffer due to a lack of essential information and too often spend their last days in agony,” said Coombs Lee.