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

By Susan M. Wolf, JD (University of Minnesota), Nancy Berlinger, PhD (The Hastings Center), and Bruce Jennings, MA (Center for Humans and Nature)

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 4 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 Feb. 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 Feb. 12 issue of the New England Journal of Medicine included four articles on the problem, including our analysis of “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 RWJF-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. Later efforts to provide broader access to hospice and establish palliative care as medical and nursing specialties have helped, but don’t go far enough.

In the past decade, efforts have turned to systemic reform of health care institutions and financing. The run-up to 2010 passage of the Affordable Care Act featured now-infamous false accusations that the ACA would create “death panels” simply by reimbursing physician conversations with patients to elicit their treatment preferences and plan end-of-life care. Though that provision failed to survive the controversy, the ACA nonetheless took some steps forward. One provision, for instance, allows coverage of hospice care for seriously ill children, without requiring that their parents first give up on curative efforts. Nonetheless, a report last year from the Institute of Medicine on “Dying in America” made clear there’s still a long way to go. We led a consensus project convened by The Hastings Center that came to similar conclusions and produced guidelines for better care, published in 2013 by Oxford University Press.

After so many decades of work on end-of-life care, national efforts to improve how our health care system is organized and funded now need to focus on death and dying. Financial incentives in our current system make it hard for dying people to get the care they do want, and put them at risk of receiving interventions that are unwanted and even harmful. Hospitals, nursing homes, and other providers are still rewarded for quantity of interventions rather than quality of care. Problems include people being referred to the ICU in the last days of life and an escalation of interventions prior to hospice referral, the nonbeneficial use of feeding tubes in Alzheimer’s patients near death, and inappropriate transfers of these patients between hospitals and nursing homes.

Real progress is sorely needed. What needs to be done? First, we should train and support all health care professionals and paraprofessionals who care for people nearing the end of life. Training in how to talk with patients and families about end-of-life decisions, support decision-makers, and conduct advance care are basic skills that all clinicians need. Second, clinicians need wider access to generalist palliative care training, as well as with support for evidence-based approaches to EOL care, and a team approach that minimizes confusion.

Finally, systemic reforms should prioritize good care at the end of life and support incentives to make progress. Hospitals should be competing on the quality of care they offer at the end of life. Instead, good care of the dying remains hidden, and too often seen as a waste of money. It is time to talk about the positive value of this care, about what dying people and their loved ones need and deserve.

Forty years of work on end-of-life care has yielded patients’ rights, initiatives to shift clinical realities including palliative care, and reforms in health care delivery and finance. The challenge now is to close the gap between what we know and what we do. There is no longer any excuse for patients near the end of life to experience intolerable suffering. It is time to fix end-of-life care.

The Petrie-Flom Center Staff

The Petrie-Flom Center Staff

The Petrie-Flom Center staff often posts updates, announcements, and guests posts on behalf of others.

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