Ethics subcommittee surrogate for patients

Policies for patients without decision makers

It is heartbreaking dilemma faced by hospital staff everywhere — a patient is brought to the emergency department (ED) unconscious, the victim of a severe stroke or brain hemorrhage that leaves the person incapacitated and unable to participate in decisions about his or her care.

A search reveals no one — no close friend or family member — who will step forward and serve as a surrogate decision maker, no one who can give the health care team guidance on what that person would want, or not want.

"A typical person might be someone who lives alone and is isolated from friends and family. [The person is] found unconscious [at home], is brought in from somewhere, and there is no way to identify family members," says Doris Hawks, JD, an elder law attorney and member of the ethics committee for the Santa Clara (CA) Medical Association. "The question then is, do we need to institute a guardianship or a conservatorship to get someone appointed to make decisions, which is tedious, time-consuming, and expensive? Or should there be a way that a decision can be made without having to go to a court?"

To answer that question, the Santa Clara County Medical Association developed a model policy two years ago to allow hospital ethics committees to appoint ad hoc subcommittees to serve as "surrogates" for patients in this situation.

The policy, which has since been adopted by most of the hospitals in the county, got its start when the medical association’s ethics committee heard from several members that their hospitals were being challenged to deal with such cases.

In 1999, the county committee formed a task force to study the issue and develop a policy, which was first approved by the committee as a whole, and then by the county medical association before being distributed to area hospitals.

Nationwide, this has been a pressing issue as well, Hawks notes.

The American Bar Association’s Commission on Law and Aging convened a national meeting of stakeholders in November 2002 to discuss solutions. They published a monograph of the meeting’s discussion and findings.

Nationwide, it has been estimated that 20% of residents in skilled nursing facilities meet the definition of lacking decision-making capacity, but not having someone who can speak for them, she says.

Time is of the essence

Obviously, when a patient is admitted to the ED, he or she is treated for that acute condition and admitted to the hospital, says Alan Carpenter, MD, a retired physician who serves on the ethics committee of El Camino Hospital in Mountain View, CA. El Camino adopted the county’s model policy last year.

It is when the patient’s condition shifts from a medical emergency to a question of life-sustaining treatment and other procedures, that questions arise.

"In general broad strokes, there are many things that physicians do because they know it is right. And yet, these things that they recommend be done, do require informed consent from the patient," Carpenter says. " It is a two-way street. It comes from the physician and then is processed through the patient’s mind. Now, we are talking about a person who doesn’t have decision-making capacity, and that second part of the loop cannot happen. That is the legal and ethical conundrum that exists."

In developing the policy, the medical association committee wanted to support a search for family members who might be willing to serve as surrogate decision makers. These people would provide a basis for pursuing court-ordered conservatorship for long-term decisions, if necessary, and also give immediate guidance to caregivers about decisions that needed to be made, says Hawks, who also serves on El Camino’s ethics committee.

Therefore, the model policy and the policy at El Camino provide guidance for the hospital ethics committee in how they should proceed if a physician, nurse, or other staff member comes to them with this type of case.

As a first effort, hospital social workers are empowered to perform an exhaustive search for the patient’s family. It is after that has been exhausted that other options are pursued.

"Part of the protocol is also that the social workers go out and beat the bushes to try to find someone to act as a spokesperson for this patient before anything irreversible is taken care of," Hawks explains. "And in discussion, what seems to have happened at our hospital and at least one other hospital, is that the efforts by the social workers and others in responding to this policy have been absolutely incredible so that they are often able to find someone to come forward and agree. This policy, from my perspective, has really given clout to the social workers and that whole procedure of trying to find somebody."

Subcommittee takes patient’s part

If the social worker cannot locate a family member or other person to agree to serve as a surrogate decision maker, then the ethics committee is authorized to convene an ad hoc subcommittee to determine what actions are in the patient’s best interest.

The subcommittee can vary in size and composition depending on the patient’s status and the nature of the decisions that need to be made.

"A lot of it has to do with the questions that are being asked," Carpenter explains. "Is the question being asked, Do we need to take the patient to surgery?’ or is the question, Should we stop using the respirator because the patient is essentially dead?’

"They are completely different questions. But with either one, the physician has to admit that there is some conflict, at least in his or her own mind, about what is right. In this case, the committee’s job is to analyze the potential conflicts and come in on the side of the patient to support the doctor," he adds.

The position of the subcommittee as the patient’s direct advocate is the unique part of the Santa Clara policy, says Hawks. Traditionally, ethics committees serve in advisory capacities, listening to both sides of a dispute and advising parties on how to proceed.

"There is a protocol. There are guidelines for steps to take and what to do and how to formulate the subcommittee who will actually be acting as surrogates for the patient," she says of the policy. "But the crux of it is that a subset of the ethics committee actually takes on the role of the surrogate."

Lack of policies often lead to overtreatment

Since the protocol’s adoption, the hospital has had to invoke it more than once, and staff are largely pleased with the results, says Fran Myers, RN, a critical care nurse and member of the hospital ethics committee.

Without input from family members on what the patient would have wanted, physicians often felt obligated to pursue any available treatment — what Myers refers to as a "full court press" — even on older patients with little prospect for full recovery.

"The physicians felt that they had to pursue certain courses and the nurses felt, in some instances, that they were actually [being] harmful to patients," Myers says.

"But this committee has acted on numerous occasions in the best interests of patients, and the staff feel very supported and able to call on the committee. The policy is still in its infancy, and there are still physicians who aren’t aware of it, but we are getting more well known and getting more referrals," she adds.

Moving toward standard of care

The Santa Clara Medical Association originally wanted the provisions of their policy included in the state health care law, which would make the policy accepted medical practice across the state, Hawks says.

State legislators decided not to include the measure. However, Hawks and other advocates are hopeful that if more hospitals like El Camino adopt such policies, they will become the standard of care, encouraging other hospitals, in California and beyond, to do the same.

Reference

1. Karp N, Wood E. Incapacitated and Alone: Healthcare Decision-Making for the Unbefriended Elderly. American Bar Association’s Commission on Law and Aging. To order the report, contact abaaging@abanet.org or call (202) 662-8690.

For more information

  • An article summarizing the policy recommendations in the American Bar Association Commission on Law and Aging’s report on incapacitated elderly patients without designated surrogates can be found on the American Bar Association web site at: www.abanet.org/irr/hr/spring04/incapacitated.html.

Sources

  • Doris Hawks, JD, 851 Fremont Ave., Suite 102, Los Altos, CA 94024.
  • Alan Carpenter, MD, and Fran Myers, MD, El Camino Hospital, 2500 Grant Road, Mountain View, CA 94040.