Markkula Center of Applied Ethics

Medical Decision Making for Conserved Patients: When There Is No One to Decide

by Miriam Schulman

"Marie" is a 96-year-old resident of a county nursing home. She has been a widow for 30 years, and her only child died two years ago. A victim of Alzheimer's disease, Marie is unable to make decisions about her own care. Now she has gone into congestive heart failure. What should the public guardian, who is responsible for her care, do?

In 2001-02, there were almost 17,500 Californians with permanent conservators who made decisions for them on everything from finances to legal issues. Like Marie, publicly conserved patients may have outlived their families. In other cases, families prove untrustworthy, and the courts have to appoint conservators to look out for the person's interests.

There is no state oversight of conservator programs, so the process of medical decision making for conserved patients varies widely from county to county. For example, in a survey conducted by the California Medical Association in 2002, of the 31 counties responding, 18 allowed conservators to consent to "do-not-resuscitate" orders without a special court order while 13 did not. Twelve allowed the conservator to consent to withdrawing respirators and/or feeding tubes without a special court order; 19 did not.

As director of Biotechnology and Health Care Ethics for the Markkula Center for Applied Ethics, Margaret R. McLean works with hospitals throughout the Bay Area. She realized that the needs of conserved patients were sometimes getting lost in the shuffle. While there is good will on all sides, inadequate communication and planning frequently result in crisis-directed care. Instead of providing for effective disease management, this approach may lead to provision of unwanted life support due to cumbersome legal processes.

Respect for the dignity and previous autonomy of individuals who can no longer make their own decisions are ethical issues that must be addressed. McLean arranged for a study of the problem by Theresa Drought, professor of nursing at University of Virginia.

As a visiting fellow at the Ethics Center, Drought interviewed key stakeholders and convened two meetings in December 2004. The meetings, which brought together public guardians, health care providers, and representatives of disability and elder rights advocacy groups, resulted in proposals to:

  1. Develop relationships and shared understanding between health care providers, public guardian's offices, and the court in each county.

  2. Develop mechanisms for open ex-change of information about the conservatee between the public guardian and the health care team.

  3. Make decision-making processes open, consider the patient's perspective, and seek outside input when necessary.

  4. Examine documentation practices to streamline and eliminate vague or ineffectual requirements.

  5. Explore innovative court procedures to maximize responsiveness and ease of using court processes.

The Center has recommended a pilot study implementing these recommendations in at least one county, which could establish a model for similar programs throughout the state.

This project was supported in part by a grant from the Honzel Family Foundation.

April 2005