SURROGATE DECISION MAKING
Posted by recep on March 26th, 2009If the patient is not capable of making a choice and no advance directive provides an alternative basis for consent or refusal, some other person or persons must provide the direction and legally adequate oversight for care. A surrogate decider can be a person chosen by the patient under a proxy designation or a durable power of attorney, a statutorily designated person, or an informally identified person such as a close family member or a friend. The more informal the appointment, the less likely the surrogate will be able to refuse life-sustaining treatment.
In the past, elderly patients were cared for by their physician and family, who were guided by beneficence or personal convictions and respect. Although still the norm, such unreviewed, unsupervised surrogate decision making is increasingly circumscribed by growing legal awareness of the problems involved and the development of rules and regulations to guide and constrain decisions.
In the past decade, courts and legislatures have implemented rules holding that persons who cannot decide about care do not lose their right to consent or refuse. These rights may be exercised by others, based on specific legal standards with procedural safeguards and stipulated possibilities for review.
Most hospitals and physicians accept consent to provide care from a spouse, child, close friend, member of the clergy, or even a distant and uninvolved relative. Yet, in most states, none of these persons is legally empowered to consent on behalf of another. But based on tradition and the supposition that a close relative or friend would care and know most about the patient, accepting the judgment of such a person over that of a total stranger makes practical and ethical sense. Such reasoning does not apply when permission is sought from a distant, uninvolved, or estranged relative. Except in exceedingly rare cases, a decision agreed upon by hospital, physician, and family operates as the basis of care, although it may not be legally adequate if challenged.
For elderly people who have outlived family and friends, a court-appointed guardian, who is often uninterested and serves a perfunctory role, may be the only alternative. Some institutions and regions are experimenting with public guardians and patient advocates, which may prove appropriate and cost-effective.
When surrogates attempt to refuse care or decide to withhold or withdraw care (an often articulated distinction without any substantial legal or ethical difference), legal concerns increase because the outcome of these actions may be death. Since all courts agree that the state has a fundamental interest in preserving life, these decisions are often legally problematic.
The initial questions in these circumstances are (1) Who decides? and (2) On what basis is the decision made? Answers vary widely among the states. In New Jersey, after a hospital ethics committee (actually a prognosis committee) determines that the prognosis is hopeless and, in the case of elderly residents in long-term care, after the state Office of the Ombudsman determines that the decision does not constitute abuse, a specially appointed guardian may opt for a refusal that will likely permit death. The decisions of surrogates are supposed to be based first on the legal standard of substituted judgment (ie, What would this patient want?) and second on the doctrine of best interest. In Massachusetts, such decisions are made by a court after full adversary argument on the issues of patient prognosis, patient preference, and state interest. Other states have formal or informal mechanisms that balance the interests of the state in preserving life, preventing suicide, protecting innocent third parties, and protecting the integrity of the medical profession against the prior wishes of the patient, the desires of family, and the abstract notions of best interest and respect for persons.
In most states, the firmest basis for decision, in the absence of an explicit advance directive, is substituted judgment. If insufficient information is known or can be surmised about the patient and if a decision crisis has been reached, caregivers, family, and sometimes the courts appeal to notions of best interest. These discussions often focus on the intrusiveness and burden of the intervention, the likely benefit, the patient’s suffering, and the possibility of recovery. As burden and intrusiveness increase and benefit and prognosis dim, the care becomes less likely to be morally or legally mandatory.
Certain types of decisions present special problems—for instance, the decision to discontinue artificial hydration and nutrition. Care providers, legislators, judges, and clergy, as well as legal, medical, religious, and ethical scholars are struggling to analyze the issues and to propose acceptable solutions regarding such life-sustaining interventions. All courts that have considered the issues have held that the mechanical provision of food and fluid is a medical treatment and thus subject to the same strictures that guide other medical decisions. Nonetheless, as a matter of public policy, some state statutes differentiate this intervention from others.
In summary, the protocol for decision making is to use the prior explicit statement made when the patient was decisionally capable, an inference from patterns of preference and from statements and behavior (substituted judgment), or some notion of best interest that precludes unjustified suffering when the treatment is invasive and intrusive, the benefit speculative, and the prognosis hopeless. All courts that have considered the issues have found that under certain circumstances, permitting death is not incompatible with a patient’s best interest nor with the state’s interest in preserving life.
These decisions are complex for all parties: patient, family, provider, institution, state, legislature, court, and special interest groups. The legal interests of the patient are in self-determination, dignity, and privacy. The family has no legal interest unless specially appointed as proxy or designated by statute, but the family’s emotional, moral, and often financial stakes are high. Providers have an interest in maintaining professional integrity, providing legally adequate care, and avoiding civil or criminal challenge (although neither occurs often). Institutions are also concerned about possible liability. The state must safeguard the lives and values of its citizens and the values of its heterogeneous cultures, and it must be aware of its disparate special interests.
