Speaking for Dying Patients, Health Care Agents Lack a Voice

From 1999 to 2003, the Washington-based Partnership for Caring (formerly Choice in Dying) explored how healthcare agents-and the individuals who appoint them-view the role and responsibilities of healthcare agents in making end-of-life treatment decisions.

The project was part of the Robert Wood Johnson Foundation's (RWJF) national program Targeted End-of-Life Projects Initiative.

The Study: The researchers recruited participants for the two-part study from two Veterans Affairs (VA) Medical Centers. In the first part of the study, researchers interviewed 53 subjects—26 principals, 18 agents who were appointed but not serving as healthcare decision-makers, and nine healthcare agents who were serving as decision-makers.

In the second part of the study, 23 healthcare agents of VA patients who had died within the previous nine months participated in four focus groups. Partnership for Caring subcontracted with the research firm Lake Snell Perry & Associates, Washington, to conduct the focus groups.

Key Findings

  • Knowledge about the roles of healthcare agents and the process of decision-making was generally poor, and helpful information was often hard to come by.

  • The study results identified a number of communication barriers, with some agents feeling that they were not valued as partners in the decision-making process and had to fight to get health care providers to respect their roles and decisions.

  • Many of the agents who participated in the study also were caregivers. Many of these individuals did not make a distinction between agent and caregiver roles or did not find the distinction meaningful.

  • The literature contains a number of studies considering the issue of a principal's shifting capacity and the problems this creates in preparing and implementing advance directives.

  • Project results suggest that healthcare providers need to develop systems to enable agents to be more consistently involved in the care of principals, so that they receive information that is relevant to the patients' care on an on-going basis.