End-of-Life Care Guidelines Updated

Laurie Barclay, MD

May 13, 2013

The Hastings Center has updated and expanded its landmark 1987 consensus guidelines for ethical care of terminally ill patients. Oxford University Press published this second edition of The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life.

"As the population ages, more people are living with chronic diseases," Hastings Center President and guidelines working group member Mildred Z. Solomon, EdD, said in a news release. "Advances in medicine have created both benefits and burdens, including problems of quality, safety, access, and cost. We need to help patients and families better navigate their choices, and physicians and healthcare leaders must build systems of care that are wiser and more compassionate."

The guidelines target all healthcare professionals involved in caring for terminally ill patients. They discuss ethical and legal options in the United States for use of life-sustaining technologies, offer comprehensive guidance on informing patients and surrogates of their options, and include detailed strategies to optimize healthcare delivery.

Issues in end-of-life care include confusion and conflict over decision-making, poor patient–clinician communication, insufficient pain and symptom relief, and use of treatments offering minimal benefit. Consequences of poor care include reduced quality of life, greater family stress, and increased costs of healthcare without added value

A physician's offer or a family's request to "do everything" may neither respect the patient's rights nor ensure good care. Recognizing religious, cultural, psychological, and social factors affecting medical decision-making can help clinicians provide appropriate, respectful care, according to the guidelines.

"The guidelines offer a reliable framework for these discussions, and for education, policy-making, and redesign of care," lead author Nancy Berlinger, PhD, a research scholar at the Hastings Center, said in the news release. "They also encourage healthcare leaders and administrators to support better outcomes for patients by building more effective forms of care delivery and integrating care near the end of life into organizational safety and improvement initiatives."

Changes from the 1987 Guidelines

  • Recommendations based on the past 25 years of "empirical research, clinical innovation, legal and policy developments, and evolution of professional consensus";

  • discussion of decision-making for and about children near the end of life;

  • issues specific to patients with disabilities, including the effect of their perspectives on physcian–patient communication and management decisions;

  • recent evidence regarding brain injuries and neurological states, how they affect prognosis, and laypersons' misperceptions and unrealistic expectations due to media influences;

  • information regarding physician-assisted suicide and how it differs from treatment refusal;

  • discussion of controversy regarding palliative sedation;

  • acknowledgement that cost is an ethical issue in healthcare decision-making;

  • request that hospitals and healthcare organizations develop transparent policies on cost management to avoid bedside rationing; and

  • integration of "the insights of ethics and law, medicine and other healthcare professions; the experience of patients and family caregivers; and patient advocacy."

The 1987 edition of the guidelines set the ethical and legal framework for US medical decision-making and was cited in the Supreme Court's 1990 Cruzan decision. This established patients' constitutional right to refuse life-sustaining medical treatments and affirmed that surrogates could make decisions for patients lacking that capacity.

In the news release, Kathleen M. Foley, MD, chair of the Society of Memorial Sloan-Kettering Cancer Center, refers to the new guidelines as "the sourcebook for how the ethics of life-sustaining treatment and care at the end of life should be taught, institutionalized, and translated into clinical teaching and practice."

A distribution from the Albert Sussman Charitable Remainder Annuity Trust and a major grant from the Patrick and Catherine Weldon Donaghue Medical Research Foundation funded the project to produce the Hastings Center Guidelines. Donors to the Anika Papanek Memorial Fund at the Hastings Center and unrestricted donations provided additional support.

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