Improving end-of-life care: Lessons from 40 years of work

Thursday, February 12, 2015

Four decades of work on death and dying have failed to fix care at the end of life. While case law and legislation in the 1990s granted patients the right to refuse unwanted, life-sustaining treatment, declaring those rights was not enough to alter treatment patterns and larger systemic issues, argue three experts on end-of-life care in an article in the February 12 issue of the New England Journal of Medicine.

The article’s lead author is Susan M. Wolf, JD, McKnight Presidential Professor of Law, Medicine & Public Policy, founding chair of the Consortium on Law and Values in Health, Environment & the Life Sciences and faculty member in the Center for Bioethics at the University of Minnesota. Wolf and co-authors Nancy Berlinger and Bruce Jennings also wrote The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life, a revised and expanded edition of The Hastings Center’s groundbreaking 1987 guidelines.  

The New England Journal of Medicine article assesses 40 years of intensive effort to improve care of patients as they approach death, identifies the successes achieved and lessons learned, and proposes strategies for new progress. “History has demonstrated the need to attack the problem at all levels, from individual rights to family and caregiving relationships, to institutional and health systems reform,” the authors write. 

The authors evaluate past efforts to improve care at the end of life by securing patients’ rights, facing clinical realities that interfere with good care, and reforming health care finance and delivery systems. They also give recommendations for how to improve on those efforts:

  • 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 who are facing decisions about life-sustaining equipment or nearing the end of life need training and support. Clinicians should have at least general palliative care training.
  • Systemic and financing reforms are needed. The authors cite current 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. 

The authors call on federal, state and organizational authorities to create standards that support this progress, and for health care leaders, administrators and clinicians to identify and address persistent care problems within their organizations.

“More work is needed at all levels – to protect patients’ rights to choose care options, to improve the quality of clinical care and clinicians’ responsiveness to patients and families, and to create well-functioning health care finance and delivery systems that make high-quality care genuinely available,” the authors conclude. “The millions of Americans facing life-threatening conditions deserve no less.”