title: Deciding in the best interest of clients with dementia: the experience of public guardians.
abstract: We conducted an in-depth interview study of public guardians in three local jurisdictions in the state of Maryland to explore the decision-making process utilized by court-appointed public guardians making medical and EOL care decisions on behalf of their clients with dementia. Overall, public guardians appeared to make their decisions in the context of relevant ethical principles and relevant case law and state statute, and the basis upon which they made informed decisions was dependent on their training and experience. The stated goal of public guardians is to make decisions that they believe are in the best interest of their clients. In the case of a healthcare decision, their goal is to maximize quality of life; and in the case of an EOL care decision, their goal is to minimize pain and suffering. In general, public guardians gathered information in order to identify previous preferences of their now-incapacitated clients, so that they could develop a preference profile to assist both an initial decision on whether an individual ought to have a court-appointed public guardian, and with healthcare and EOL decisions once an appointment was made. When guardians were unable to develop a preference profile for a particular client, they relied on past decisions in similar situations. Healthcare and EOL decisions were most often triggered by a recommendation by the client's healthcare provider. Once a decision-point was identified, the public guardian considered the risks and benefits of the proposed intervention in light of the client's current condition. At times the guardians reviewed informational resources such as textbooks and the Internet. In addition, most guardians sought advice from a medical consultant who is available to all public guardians in Maryland. Some guardians sought the advice of this medical consultant only when faced with more complex decisions. Guardians challenged physicians' recommendations when they believed the physicians were recommending an intervention that was not in the best interest of the client--that is, they advocated against either overtreatment or undertreatment. Ultimately, guardians took particularly difficult issues to the court and obtained a judge's opinion.
authors.affiliation: Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Berman Institute of Bioethics at Johns Hopkins University, Baltimore, Maryland, USA. htaylor@jhsph.edu
authors.forename: Holly A
authors.initials: HA
authors.lastname: Taylor
authors.forename: Betty S
authors.initials: BS
authors.lastname: Black
authors.forename: Peter V
authors.initials: PV
authors.lastname: Rabins