Yale researchers find that a sizeable number of patients list non-nuclear family contacts as next of kin, increasing uncertainty about who can make medical decisions on their behalf.
The study was published April 7 in JAMA.
Laws governing medical decision making for patients who lose capacity vary from state to state. If a spouse, sibling, parent, or child is not available, critical medical decisions may be delayed because “default consent” statutes in many states do not recognize non-nuclear family relationships. To determine how many patients might be affected by this issue, postdoctoral fellow Dr. Andrew B. Cohen and his co-authors examined data collected by Veterans Health Administration (VHA) in Connecticut over a ten-year period.
The researchers found that 6% of patients who received care at VHA facilities named non-nuclear family contacts as next of kin. Often, those patients listed an intimate contact outside of marriage, such as “same-sex partner,” “common law spouse,” and “live-in soul mate.”
For patients under age 65, the percentage of non-nuclear next of kin was even higher. “The finding is significant because it may be a reflection of how family structures in the United States are changing,” said Cohen. “We may see the percentage grow further as people experience more diverse kinds of close relationships.”
If confirmed by studies of other populations, the finding presents a dilemma for medical decision makers and patients. Without next of kin who are recognized by state law, courts or ethics committees may have to become involved in life-or-death decisions. “It introduces an uncertainty into physician decision making. When physicians are uncertain about who can make decisions, care may be delayed or care may not be consistent with patient preferences,” Cohen explained.
A growing number of adults are unmarried and live alone, the study noted, a trend that is not uniformly reflected in current default consent laws. “Because there is a sizeable percentage of patients who have relationships that are not nuclear family relationships, it would make sense to consider having default surrogate consent laws that recognize these relationships and are the same in every state,” Cohen said.
Other authors include Yale’s Dr. Mark Trentalange and Dr. Terri Fried of the VA Connecticut Healthcare System.
The study was supported by the Hartford Centers of Excellence National Program at Yale University, the National Institute on Aging (T32AG1934), and the Claude D. Pepper Older Americans Independence Center at Yale School of Medicine (P30AG021342).
