Facing Controversies in End-of-Life Care

Barbara Glickstein is co-director of The Center for Health, Media & Policy at Hunter College City University of New York and a member of the Academy Fellows Section on Nursing.

Spending intimate time with people who are dying, and their families or caregivers, is part of being a registered nurse. All too often, a nurse‘s clinical expertise and heightened intuition informs them of a shared truth at a critical time—they, and their patients, often know when death is not far away. But the word “death“ is never uttered.

In those moments, nurses often stand silent and morally conflicted as an all-too-familiar scenario unfolds. An attending physician offers the patient and family another treatment option. The first two failed miserably. The nurse silently wonders, “This  person is dying—why isn’t the option of calling in palliative care being discussed?“ The patient looks to their loved ones for an answer. They say “yes“ to the physician, please go ahead and schedule the treatment as soon as possible.

In these situations, nurses and physicians often feel like they’re swimming in an ocean of unchartered territory with no way to know if what they’re doing is right, when it comes to helping patients—or even their own loved ones—with end-of-life choices.

Maybe that’s because death is messy, unpredictable, non-linear and complex for everyone involved. Plus, there’s really no one-size-fits-all plan for caring for individuals at end of their lives, even for the health professionals, especially nurses, who face the situation on a regular basis.

“Our health care experience and nursing care is not confined to illness and recovery. Nurses are also often our caregivers in our last moments of life,” says Donald Jonas, founder, Jonas Center for Nursing and Veterans Healthcare.

Exploring Tough Questions

To analyze the many challenges care providers face as they attempt to support their patients at the end of life, Jonas adds, “We’re proud to support the New York Academy of Medicine’s panel discussion Dying In America: Complex Choices [May 5, 2016], which we hope spurs thinking on how nurses and physicians impact our last days and hours, and how we might improve end-of-life care in the future. [We know that] each of us wants the best possible quality of life as we leave this world.”

The panelists for Dying in America will tackle many unexplored issues about end-of-life care, framing the conversation around the quality of life before death and the health professional’s role in making end-of-life care better.

Unique in their passionate approaches to the complex and difficult questions about how to transform end-of-life care, the panelists have been selected for their roles in being disruptive innovators and thought leaders on end-of-life issues, they are Amy Berman, RN, senior program officer at the John A. Hartford Foundation; Carolyn Jones, filmmaker; Kenneth Prager, MD, professor of Clinical Medicine, director of Clinical Ethics and chairman of the Medical Ethics Committee, Columbia University Medical Center; and Judith Schwarz, RN, PhD, clinical director, End of Life Choices New York.

They will share insights from their personal struggles, in some cases, and professional experiences, to help nurses an others grapple with questions such as:

Does the patient want full interventions, limited interventions or comfort measures only?

How do we support the interior freedom of the person facing death, honor self-determination, and really commit to the process of patient engagement in decision-making along their end-of-life journey?

Can we replace making people feel completely devoid of any agency, with a reliable process by which to judge their own decisions and actions? And, perhaps most important, is there a way we can restore a sense of self-determination, respect and integrity for those in our care—and for ourselves—when the time comes?

The panel’s intent is to spur progress and uncover solutions to one of the most difficult challenges facing caregivers, patients and health care professionals in the age of health care reform.

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