In addition, some states included countless details for what constitutes an appropriate decision-maker, listing everything from frequency of someone's contact with a patient to their availability to meet with clinicians in person, to their familiarity with a patient's values and religious beliefs. Other states don't mention anything aside from requiring decision makers to be an adult. (The states even had conflicting definitions of "adult.")
While it's unclear whether this variation in statutes impacts clinical care, the research team said one thing is certain: disputes about medical treatment are happening on a regular basis inside hospitals and hospice programs and there's no national standard or benchmark to guide families or physicians.
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"One important message from this study is that, in the absence of a clearly identified spokesperson, the decision-making process for incapacitated patients may vary widely depending on where they live," said Daniel B. Kramer, MD, MPH, a cardiac electrophysiologist at the Richard A. and Susan F. Smith Center for Outcomes Research in Cardiology and Beth Israel Deaconess Medical Center in Boston, who was the study's senior author. "The next steps will be to study how this variability plays out in practice, and whether specific kinds of treatment decisions, such as withdrawing life-sustaining therapy or mental health interventions, actually turn out differently in different states due to the way these laws are written."
Four of the paper's nine authors are affiliated with UChicago's MacLean Center, which pioneered the formal study of clinical medical ethics in the early 1980s. The center runs the world's largest clinical medical ethics fellowship for health care providers.
"This study continues the MacLean Center's longstanding mission of examining critical issues in clinical medicine through research and training," said Mark Siegler, MD, MACP, an internist at the University of Chicago who directs the MacLean Center. "As medical ethicists - and practicing health care providers -- we wanted to provide a comprehensive resource to help guide patients, families, and other health care providers who are trying to resolve complicated ethical dilemmas."
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