Bioethics Blogs

Dying: Closing the Gap between What We Know and What We Do

Time is running out on fixing the way we die. As readers of this blog know, the courts first declared a right to refuse unwanted life-sustaining treatment in the 1976 Quinlan case. Nearly four decades later, too many people are still burdened with treatments they don’t want, can’t get support for care at home, and are dying without good relief of pain and suffering. So it was no surprise that the highest court in Canada finally threw in the towel. In its February 6 opinion in Carter v. Canada, the court found people still “suffering intolerably as a result of a grievous and irremediable medical condition.” The court thus recognized a right to physician aid in dying. Canada now has a year to set up a system that will permit the practice while protecting the vulnerable from abuse.

Regardless of your views on physician aid in dying, too large a gap remains between what we know is high-quality care at the end of life and what we actually do to care for dying people. The February 12 issue of the New England Journal of Medicine included four articles on the problem, including our analysis, “Forty Years of Work on End-of-Life Care: From Patients’ Rights to Systemic Reform.”

In the years after Quinlan, judicial opinions and legislation, combined with ethics analyses and clinical guidelines, succeeded in establishing patients’ rights to refuse unwanted treatment and their option to use advance directives to document treatment preferences in advance of a medical crisis. Yet by the mid-1990s, data from the Robert Wood Johnson Foundation-funded SUPPORT study showed that even when trained nurse-advocates communicated patients’ treatment preferences to their physicians, end-of-life care did not reliably improve.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.