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Who Determines How We Die?

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“Time is running out on fixing the way we die.”

This is the argument made in a recent article in the New England Journal of Medicine and related post from Harvard Law School’s Bill of Health blog. Susan M. Wolf, J.D., chair of the Consortium on Law and Values in Health, Environment & the Life Sciences joins co-authors Nancy Berlinger, Ph.D., of the Hastings Center and Bruce Jennings, M.A., of the Center for Humans & Nature, providing an overview of 40 years of end-of-life discussions and outlining more that needs to be done.

End-of-life issues take on new urgency as Baby Boomers age and their children and grandchildren grapple with how best to respect the wishes of a generation that is famously resistant to growing older. The reality on the ground is that, despite case law and legislation in the 1990s granting patients the right to refuse unwanted, life-sustaining treatment, declaring those rights was not enough to alter treatment patterns and larger systemic issues.

A major report from the Institute of Medicine (IOM) reinforces the importance of improving care for the dying. The Washington Post characterizes the report’s argument as follows: “Neither individuals nor the health-care system are at all ready for the inevitable.” For example, an article published in the New England Journal of Medicine reported 69 percent of patients with advanced lung cancer and 81 percent of those with advanced colorectal cancer did not understand that their condition was incurable.

What is to be done in the face of the obvious need for reform? Wolf and her co-authors make the following recommendations:

  • Clinicians should be trained in the communications skills needed to help patients and their surrogates make informed decisions about care near the end of life.
  • All professionals involved in caring for patients need training and support in general palliative care, which focuses on reducing suffering in the face of serious, life-threatening illness.
  • Financial and systemic reforms are needed. There are currently incentives that work against dying patients’ choices, interest and safety, such as referrals of dying patients to the intensive care unit for dialysis, the non-beneficial use of feeding tubes in patients with end-stage Alzheimer’s disease and late hospice referrals for patients with cancer.

Wolf served as principal author of the groundbreaking 1987 book on end-of-life decision-making that was revised by Berlinger, Jennings and Wolf and reissued in 2013. The 1987 work was cited by Justice Sandra Day O’Connor in the landmark Cruzan decision of 1990, the first time the U.S. Supreme Court recognized a patient’s right to refuse life-sustaining treatment, which led to the passage of the federal Patient Self-Determination Act soon after.

Listen to Wolf’s roundtable discussion with MPR’s Kerri Miller and Dr. Glen Varns, Palliative Medicine Physician at Allina Health and Dr. Jacob J. Strand, Director of Symptom Management, Pain and Quality of Life Clinic Mayo.

Erin Dennis

Erin Dennis

Erin is assistant communications director for the Office of the Vice President for Research and senior editor of Inquiry. 

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