Honoring the wishes of forgotten patients’
Many elderly and infirm have no surrogates
Remarkably little has been written or said in the ethics or legal literature about a subset of patients for whom necessary surgery, comfort measures, and even do-not-resuscitate orders often are not options: patients without surrogates.
"These patients are the truly forgotten," says Tracy E. Miller, JD, a visiting scholar in law and health policy at Mount Sinai Medical Center in New York City. Miller and others are calling for new laws that would solve this dilemma. The New York State Task Force on Life and the Law in New York City, for example, is working with state legislators to draft a measure that would allow doctors and other health care professionals to make decisions with review by a multidisciplinary committee based in their facilities.
The committee function could be filled by an existing ethics committee or a newly devised group, Miller explains. This group, which must include community representatives, would have the authority to review and approve or disapprove treatment decisions. In a long-term care facility, the committee would be required to include a resident or family member of a resident and one individual not affiliated with the facility with a demonstrated commitment to older people or nursing home residents.
A limited number of other states have set guidelines regarding medical decisions for patients without surrogates. In some instances, institutional ethics committees and even a local bioethics network have become more involved.
Ethics committee, pastoral care staff decide
At Baylor University Medical Center in Dallas, these decisions are made by hospital chaplains, generally in collaboration with a member of the ethics committee. Texas law outlines a hierarchy for decision making when the patient has failed to appoint a legal surrogate. The decision falls to "a member of the clergy" in the absence of a family member or friend, says Robert Fine, MD, chairman of the ethics committee. Baylor uses that phrase, he explains, to authorize its chaplains to make these difficult decisions.
In Washington, DC, advocates for the elderly took the unusual step of asking the local bioethics network to speak before a panel of district judges on health care decision making. They were concerned that judges were making guardianship appointments with limited understanding of health care decisions.
"At first, the judges were unsure how we would fit in," says oncologist John J. Lynch, MD, a member of the Washington Metropolitan Bioethics Network who agreed to chair a panel of members that will review guardianships on a case-by-case basis.
"The average person involved in a guardianship has no guidance on making health care decisions," he says. Yet under District of Columbia law, if the patient lacks the capacity to make his or her own decisions and has written no advance directive or power of attorney, a guardian must be appointed.
"One of the things we look for is whether the person who has applied to be the patient’s guardian has any alternative agenda that might influence their decision," says Ann Johnson, MSW, PhD, an education specialist with the Council on Social Work Education in Arlington, VA, and a network member.
Johnson conducts home visits and tries to meet with the potential guardian and patient together. Lynch’s role is to visit the hospital where the patient is being treated, meet with his or her physician, and review medical records.
"We talk to the potential guardian about how they might handle decisions to withhold or withdraw treatment, about whether they have talked to the patient about treatment wishes or values," Lynch says.
The panel then writes a written report for the judge citing its approval or disapproval of the proposed guardian.
The National Center for Clinical Ethics for the Department of Veterans Affairs (VA) has a systemwide ethics committee that meets regularly at VA headquarters in Washington, DC. The topic of how to deal with the absence of a surrogate decision maker continues to surface, says Ruth Ann Phelps, PhD, health science specialist for the national ethics center and an ethics committee member.
The VA revised its informed consent policy in 1996 to include specific guidelines for treatment decision making for patients without surrogates. (See policy guidelines inserted in this issue.)
The committee’s general counsel reviewed existing state law and drafted the new guidelines based on this information, using a three-tiered process:
• decisions for treatments with minimal risk;
• decisions for treatments for which a signature was required;
• decisions regarding withholding or withdrawing life-sustaining treatment.
"Our general consensus was that we did not want a policy that was too easy to invoke," Phelps says.
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