Jan 6 2012
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New Year's Resolution: Fully Informed Choices

As we head into 2012, the Human Capital Blog asked Robert Wood Johnson Foundation (RWJF) staff, program directors, scholars and grantees to share their New Year’s resolutions for our health care system, and what they think should be the priorities for action in the New Year. This post is by Diana J. Mason, PhD, RN, FAAN, Rudin Professor of Nursing and Co-Director, Center for Health, Media & Policy, Hunter College, City University of New York; Strategic Adviser, Future of Nursing: Campaign for Action; co-editor, “The Nursing Profession: Development, Challenges, Opportunities,” RWJF Health Policy Book Series.

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While I was editor-in-chief of the American Journal of Nursing, I and some of the editorial staff noticed that most of the manuscripts we received for our narrative column, Reflections, were about death and dying. We begged people to submit columns on other topics, lest Reflections become As I Lay Dying. But I shouldn't have been surprised.

As a nurse and daughter of a man who died at 58 from metastatic cancer, I have cared for many dying people and have been privileged to be with some at the moment of their deaths. I've had patients who told me that they were going to die that night—and they did. I've seen an 85-year-old woman kept alive on a respirator with an open abdominal wound for four weeks before she became septic and died, despite her stated wishes to not have such extraordinary measures. Caring for my father during the last month of his life was the most precious gift I was able to give to him—and to myself. Yet, I had to fight with the health care system to ensure that he was adequately medicated when hospitalized or to be able to remain with him during an emergency room procedure. I fought to take him home so he could die there, as he wished, with love and comfort care.

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These experiences imprint themselves indelibly on our memories and our souls. They can be rich and profoundly move us to confronting the realities of our own life and inevitable death. Or they can make us witnesses to torture and inhumane treatment of the dying, and shake our core beliefs about how a rational, caring society behaves.

This is not just a personal matter. It's also a public one that speaks to the problems of our costly health care system that too often fails to deliver the right care (defined here as what a fully informed patient prefers) at the right time. About 25 percent of Medicare spending is during the last year of a beneficiary's life and 40 percent of that is in the last 30 days. And yet, some of this spending is for unwanted, futile treatments. The Medicare costs are twice as high for people who die in hospitals compared with home. Some private insurers, such as Aetna, have successfully piloted programs that give fully informed patients more options for advanced illness care. Doing so has improved patients' and families' satisfaction with care while reducing costs.

So, the New Year's resolution that I'd like to see be a priority for our health care system is that we quickly and thoughtfully build upon these efforts and commit to providing more humane options for end-of-life care. Let's encourage, expect, and pay for ongoing conversations between health care providers and patients and their families about their treatment and care options, ensure that patients are fully informed about these options and can express their preferences, expand hospice at home and in facilities as needed and wanted, and develop quality indicators that will hold health care providers and institutions accountable for focusing on supporting patients and families during this important life transition.

From economic and moral perspectives, expanding people's choices for advanced illness or end-of-life care is the right thing to do.

Tags: End-of-life care , Nurses, Family caregiving, Patient-centered care, Human Capital, Campaign for Action, Future of Nursing, Health & Health Care Policy, Health Care in 2012, Nursing, Voices from the Field