New Legislation in “End of Life” Care Rights

Part I of a Two Part Series

By A.K. Lehmann, Paralegal
The End of Life Counsel Bill (A 7617/S 4498), recently passed in the New York State Legislature, requires doctors caring for a terminally ill patient to offer information and counseling on available options for palliative and end-of-life care. This new obligation to inform patients of their medical care options is based on the fundamental right of “informed consent.”

“End of life” treatments include:
• Hospice • Pain Management, and • Palliative Sedation.

The Senate explained the need for doctors to initiate this conversation:

“The lack of communication with respect to basic end-of-life options is a continuing problem. Patients often do not know what options for palliative care and pain management are clinically and legally available to them at the end of life. Patients must be empowered to control his or her own medical care decisions by having access to full information.”

Patients may accept or decline the offer to “end of life” counseling – but at least now they, and their family members, do not bear the responsibility for beginning the process of what may be the most difficult and important decisions of their lives.

Furthermore, studies show that earlier referral to hospice and palliative care results in higher quality of life and greater patient and family satisfaction. By making comprehensive medical care information available to patients earlier on in the process of dying, patients and their family members will have greater access to a higher quality of care.

The New England Journal of Medicine reported yesterday that lung cancer patients who receive palliative care actually live three months longer than similar patients not receiving such care.

New York’s Hospice and Palliative Care Information Act (PCIA) was supported by David Leven, Executive Director of Compassion & Choices, “Now, at last, patients nearing the end of life will receive an offer to discuss it. Some will decline the offer. Many will accept and use the information to negotiate a death that honors their life and leaves memories of peace and comfort for their loved ones with them at the end. […] This bill will change the medical culture’s imperative to never speak of death and offer any treatment, no matter how remote the chance of success.”

The media has taken an interest in this very important health care issue which has come to the fore of our nation’s consciousness due to President Obama’s health care reform. Vice Presidential nominee and media celebrity, Sarah Palin, made “end of life” counseling rights controversial by relating them to a type of “death panel.”

It is important to note that the bill clearly states that patients may decline the offer of information on health care options which will end the discussion.

Recently The New Yorker published an article written by Dr. Atul Gawande that illustrated stories of uninformed patients suffering from endless aggressive medical treatments like chemotherapy, surgery and/or radiation. Gawande attributed this type of care to the medical profession’s general inability to muster the courage to discuss imminent death. Without thorough information about medical care options, terminally ill patients are unable to ask critical questions about side effects of treatments and their chances for success.

Last week, Frontline also broadcasted a series entitled “Facing Death.” Watchers applauded the producers saying that it is time for Americans to learn how to talk about one of the most important aspects of our lives. “Learning to let go” was the principle advice of those interviewed who were at the “end of their lives.” The fourth and particularly poignant episode in the series is entitled, “Talking About the End of Life.”

Ettinger Law Firm, as New York elder law attorneys, will keep its clients posted on developments on these emerging “rights to information.”

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Next week:
Part II: New Legislation in “End of Life” Care Rights Dartmouth College’s Study of “End-of-Life” Care and Finding An Advocate for “End of Life” Planning