Unrepresented Adults Face Adverse Healthcare Consequences: The Role of Guardians, Public Guardianship Reform, and Alternative Policy Solutions

Abstract

Persons without family or friends to serve as healthcare agents may become "unrepresented" in healthcare, with no one to serve as healthcare agents when decisional support is needed. Surveys of clinicians (N = 81) and attorneys/guardians (N = 23) in Massachusetts reveal that unrepresented adults experience prolonged hospital stays (66%), delays in receiving palliative care (52%), delays in treatment (49%), and other negative consequences. Clinicians say guardianship is most helpful in resolving issues related to care transitions, medical treatment, quality of life, housing, finances, and safety. However, experiences with guardianship are varied, with delays often/always in court appointments (43%) and actions after appointments (24%). Policy solutions include legal reform, education, and alternate models.