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Making Treatment Decisions for Patients in Prolonged States of Unconsciousness

They may have suffered devastating brain damage due to traumatic injury, or oxygen deprivation to the brain following a heart attack or stroke. They may be awake but not aware (in a vegetative or unresponsive wakefulness state) or awake but minimally aware (minimally conscious state).  Such prolonged disorders of consciousness bring uncertainty concerning diagnosis, prognosis, and potential for rehabilitation. How can loved ones apply what is known about a patient’s values and preferences to these situations? How can they collaborate with professionals to make decisions in a patient’s best interests? How can doctors and other clinicians support families under stressful conditions and when there is disagreement about whether life sustaining interventions, such as mechanical ventilation or artificial nutrition and hydration, should be maintained or withdrawn? How are these questions addressed in different countries?

These are some of the dilemmas discussed at an international seminar at University of Oxford in the U.K., on “International Perspectives on End of Life Decision-Making for Patients in Prolonged Disorders of Consciousness: Human Rights, Law, Medicine, Science, and Society,” on April 4-5. Hastings Center research scholar Nancy Berlinger gave an overview of the ethical and legal frameworks for end-of-life decision-making in the United States, with attention to the formation of legal consensus through cases such as Quinlan and Cruzan and how the right to refuse life-sustaining treatment is exercised, via surrogate decision-making, on behalf of patients with prolonged disorders of consciousness following an acute brain injury and during an extended period of prognostic uncertainty. She also participated in sessions aimed at clarifying ethical, legal, and social questions for patients in England and Wales, where the decision-making authority of families, the health care system, and the judiciary in such cases are different than in the U.S., but where ethical challenges concerning how to apply information about patients’ values and preferences in best interests decisions are similar. Other international experts discussed the relevant frameworks in the Netherlands, Germany, and Norway. The seminar was part of the Sheila Kitzinger Programme at Green Templeton College at Oxford.

Outcomes from this meeting may include drafting strategies for legal and policy reforms to improve decision-making and care for patients in England and Wales, as well as identifying questions that should be addressed through other channels, such as public education and comparative research.  Berlinger was also interviewed for the BBC World Service as part of this meeting.