End-of-Life Care: 40 Years of Incremental Progress

Veronica Hackethal, MD

February 11, 2015

In an overview of the past 40 years of work on improving end-of-life care, experts in law, bioethics, and public policy have noted "incremental" progress but highlight the difficulties that remain in providing care that matches patients' needs and preferences.

The article was published online February 12 in the New England Journal of Medicine.

"Our healthcare system is still failing the 2.5 million people who will die this year and the millions of others facing life-threatening illness. We need to face this reality and to integrate end-of-life care into our efforts to improve our healthcare system," commented coauthor Nancy Berlinger, PhD, research scholar at the Hastings Center, in Garrison, New York.

Dr Berlinger and coauthors Susan Wolf, JD, professor at the University of Minnesota, in Minneapolis, and Bruce Jennings, director of bioethics at the Center for Humans and Nature, in Dobbs Ferry, New York, separate the last 40 years of end-of-life care into three phases.

The first phase (1976-1994) concerned establishing patients' rights, advance directives, and the authority of surrogates. The era began with the 1976 case of Karen Ann Quinlan, whose father sought permission from the New Jersey supreme court to end mechanical ventilation for his daughter, who was in a persistent vegetative state. Similar cases followed in which courts began to establish the right of patients to decline life-sustaining treatment, though the authority of surrogates remained controversial.

A report by the President’s Commission on Bioethics (1983) and ethics guidelines by the Hastings Institute (1987) both advocated for a patient's right to decline life-sustaining treatment. The Hastings Institute report also proposed a standard for surrogate decision-making.

In 1990, the US Supreme Court case of Nancy Cruzan, a Missouri woman in a persistent vegetative state, and the 1990 Federal Patient Self-Determination Act both provided impetus for the promotion of advance directives.

The second phase (1995-2009) concerned clinical barriers to progress in end-of-life care. In 1982, Medicare added the hospice benefit, though many barriers to hospice access existed. During the 1990s, professional societies began to put forth articles and policies highlighting obstacles to improving end-of-life care.

In 1995, Oregon became the first state to legalize physician-assisted suicide. Washington State and Vermont followed, with courts in Montana and New Mexico subsequently issuing rulings to allow physician-assisted suicide.

The tables turned, though, with the controversial Terry Schiavo case in 2005. The case concerned a dispute between parents who rejected medical opinion about their daughter being in a permanent vegetative state and a husband's ability to act as surrogate to end tube feeding. The case revealed deep conflicts even after decades of progress regarding surrogate authority.

In 2009, conflict resurfaced when opponents of the Affordable Care Act (ACA) generated fears that physician reimbursement for end-of-life discussions would result in "death panels." Political pressure resulted in removal of the provision from the ACA, as well as removal of a similar Medicare proposal.

The third phase (2010 to the present) has focused on reforming end-of-life care through institutions, systems, and finance. In September 2014, the Institute of Medicine issued its "Dying in America" report, which updated its earlier 1997 report on end-of-life care and called for major reforms. The report emphasized patient- and family-focused care, integrating palliative care with treatment, improving communication skills and training of clinicians, and reimbursing physicians for end-of-life discussions.

In 2013, the Hastings Institute updated its guidelines, also calling for high-quality care and a patient and family focus. The report addressed clinical, institutional, and systemic issues, such as financial costs and access for the uninsured.

Clinicians caring for patients near the end of life have much to contribute in system-wide change as well as improving the experience of individuals and their family members, according to Dr Berlinger.

All clinicians caring for patients near the end of life should know how to support informed decision making, Dr Berlinger told Medscape Medical News. They should also have appropriate evidence-based training in conducting end-of-life discussions, supporting decision-makers, resolving basic conflicts, conducting advance-care planning, and using documents to support patients' preferences. Generalist palliative care training and cross-specialty collaborations are also important, she added.

"Patients and families rely on healthcare professionals and institutions to make rights work in practice," Dr Berlinger emphasized. "Patients and families cannot fix clinical, organizational, or financial barriers to good care near the end of life, including incentives that still reward escalating interventions and medically inappropriate transfers when a person is dying."

"All clinicians need to be prepared to be effective advocates for patients and families affected by these and other systemic problems," she concluded. "Clinician-leaders are crucial in these efforts."

Dr Berlinger reports receiving grant support from the Donoghue Foundation, the Sussman Charitable Remainder Annuity Trust, and the Anika Papanek Memorial Fund. Bruce Jennings reports receiving personal fees from the United Hospice of Rockland, New York. Prof Wolf reports receiving personal fees from the Hastings Center.

N Engl J Med. 2015;372:678-682.


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