profession

Caregivers have boundaries when speaking for patients

What authority does a caregiver have for an incapacitated patient?

The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to philip.perry@ama-assn.org, or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA. Posted May 6, 2013.

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Scenario Sometimes a caregiver is necessary for the daily care of a patient and becomes part of a patient-caregiver-physician triad. What are the limitations of the caregiver's decision-making role for the patient?

Reply This situation is commonly encountered in clinical practice. The caregiver might be an employee of the patient or the patient's family, an unpaid friend, a spouse or other relative of the patient. The patient becomes temporarily compromised mentally due to illness or medications, and the caregiver has to interact with the physician on behalf of the patient.

Adults, even if elderly, beset by disease and in need of a caregiver, have the legal right to act and make decisions on their own until a court declares that they lack this ability and subjects some or all aspects of a patient's life to the supervision of a guardian. Of course, it is possible for the usually competent patient to lose capacity for making medical choices temporarily and regain it later.

The physician is allowed — subject ultimately to court review — to determine whether a patient lacks decision-making capacity regarding medical matters, and guidelines have been established to help physicians make this determination.

The first role the physician gives the caregiver in such a situation is that of informant. The physician may need to hear from the caregiver the circumstances that produced the patient's current condition, the medications the patient is taking, the patient's medical conditions, the patient's baseline functional abilities and other necessary information.

The caregiver also may know about the prearranged designation of a surrogate through a durable power of attorney for health care, and there may be an advance directive that the caregiver can help locate.

If there is no such prearrangement, the informant role of the caregiver usually expands, and the physician may support the caregiver in the role of surrogate decision-maker as well, depending on other aspects of the caregiver's relationship with the patient. The laws of the jurisdiction (or customary practice in the community if the law is silent on the matter) determine who should have authority to serve as patient surrogate. If the caregiver is the patient's spouse, he or she usually is the surrogate decision-maker. Others next in line, such as the reasonably available adult children of the patient, should get the opportunity to act as surrogate decision-makers if the spouse declines, is unavailable or is otherwise unable to serve.

The doctor's role

The physician is expected to be reasonably diligent under the circumstances in gathering information about who the surrogate should be. If the patient's condition demands a surrogate decision urgently, reasonable diligence may not require as much verification of the information received by the physician.

For example, this could happen if a caregiver accompanies a patient in critical condition to the hospital emergency department, falsely representing himself or herself as the patient's spouse, and makes decisions on the patient's behalf. More careful inquiry might reveal that the caregiver has misrepresented the relationship and that another person is the appropriate surrogate. The physician who accepts the word of the caregiver in this urgent situation might be mistaken but is still acting reasonably under the circumstances.

In general, the caregiver who is found through the reasonable diligence of the physician to be the patient's surrogate should be given the authority to exercise autonomy on behalf of the patient, setting the patient's goals of care and choosing among available medical options.

The patient's caregiver surrogate does not have absolute authority to decide the physician's goals for the patient or the modalities that will be employed to achieve the patient's goals. Some jurisdictions impose legal limits on the caregiver surrogate's authority to make decisions about withholding or withdrawing life-sustaining interventions. In addition to legal constraints, there are ethical guidelines for surrogate decision-making. The caregiver surrogate should make decisions based either on what the patient would want or, if the surrogate doesn't know that, the patient's best interest.

The physician is again expected to use reasonable diligence in gathering information about whether the caregiver surrogate is exercising authority properly. If the caregiver surrogate is the patient's spouse and tells the physician that the now mentally incapacitated patient would not want a particular intervention, but insists that it be done anyway, the caregiver surrogate's authority to make that choice is questionable.

If, in another scenario, no one knows what the patient would want, and the caregiver surrogate is making a decision that is not in the patient's apparent best interest, the authority of the caregiver surrogate to make that choice is again questionable. In such situations, if the physician is unable to redirect the caregiver surrogate to accept and promote a more appropriate decision, the physician may need to question the authority of the caregiver surrogate, involving the hospital ethics committee or, if necessary, the courts.

There may be other situations in which the physician cannot fully accept the decisions of the caregiver surrogate. This may happen when the goals embraced by the caregiver surrogate on the patient's behalf are not reasonably achievable. For example, in some cases, the goal of the patient as expressed by the caregiver surrogate is to get strong enough to undergo chemotherapy, but it is clear to the physician that the patient will never regain that much strength.

Moreover, the caregiver surrogate acting on behalf of the patient cannot be allowed the authority to choose from the medical arsenal every possible means to achieve the patient's care goals. If chemotherapeutic agent X is not indicated for the patient's cancer, the physician should not offer it as an option to the patient's caregiver surrogate. The physician has no obligation to give an inappropriate therapy, even if the patient's caregiver surrogate demands it.

The physician always should encourage an informant role for the caregiver and support the caregiver in the role of surrogate decision-maker in appropriate circumstances, but the physician cannot give the caregiver who qualifies as surrogate unlimited authority to direct the medical care of the patient. The physician should not abdicate the responsibility to offer only options that have a reasonable chance of helping patients more than harming them.

John M. Halphen, MD, JD, Division of Geriatric and Palliative Medicine, Dept. of Internal Medicine, University of Texas Medical School at Houston

The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to philip.perry@ama-assn.org, or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA.

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