In the past several years in the United States, Congress and state legislatures have been involved in debates regarding the best interests of patients in situations where patient preferences could only be determined through living wills or the testimony of family and friends.
This debate particularly centers on decisions to continue or withdraw artificial nutrition and hydration (ANH) when a patient is in a persistent vegetative state (PVS).
Several state and federal legislators have attempted to establish legal presumptions that any patient who lacks decision-making capabilities, and who has not clearly expressed his or her preferences for ANH, would choose to receive ANH. Legal standing would be given to elected officials to intercede in what were previously private decisions about health care. Several such proposals have also included language to weaken the effectiveness of advance directives and living wills, even in situations where a patient’s preferences would seem to be clearly expressed.
These efforts would deeply compromise a patient’s right to self-determination, and go against the public's interests. A 2006 Pew Research Center survey showed that nearly 3 in 4 Americans believe that end-of-life decisions should be decided by families. This view is consistently shared across the political spectrum.
The AAN Professional Association (Academy) opposes policies that would presume healthcare preferences for patients regarding ANH, and policies that limit a patient’s ability to declare their medical preferences through advance directives and similar devices.
The Academy also objects to policies that would give politicians legal standing in these cases, or unnecessarily expand the judiciary’s role in determining a patient’s wishes.
The Academy supports legislation that improves patients’ opportunities to make their healthcare preferences known, such as advance-directive registries, living-will notations on licenses, and similar.
The Academy has developed an advocacy toolkit (to the right) to help you advocate on this important issue.