As the Baby Boom generation ages, the population of elderly with dementia expands and the number of seniors who live on their own increases, experts are predicting a growing problem with “unrepresented patients” in hospitals.
The problem for health care givers involves the question of who will make important decisions for such patients, who have no close relatives or friends.
If a patient is in a coma, for example, who will be responsible for deciding life-support systems should continue?
“Unrepresented patients are those who have no surrogate or advance directive to guide medical decision making for them when they become incapacitated,” explains Scott J. Schweikart, in an article in the AMA Journal of Ethics.
Schweikart has identified three different approaches in various state laws and institutional policies: a physician approach, an ethics committee approach, and a guardianship approach.
“The model of allowing the physician to be the ultimate decision maker is the main approach,” writes Schweikart, a senior research associate for the American Medical Association Council on Ethical and Judicial Affairs. “Some states allow physicians to act as decision makers until a guardian can be appointed. … Some states directly empower physicians to make decisions for unrepresented patients, like North Carolina, which will allow physicians to make end-of-life decisions for unrepresented patients without court approval as long as reasonable efforts are made to find a surrogate.”
In the ethics committee approach, hospital ethics committees help make decisions for unrepresented patients by deliberating and then offering a recommendation, Schweikart said. Quoting Thaddeus Mason Pope, of the Mitchell Hamline School of Law, he said the advantage of an ethics committee is that it can “offer various perspectives and can utilize a multifaceted array of both medical and ethical considerations,” in contrast to a single decision maker, such as a physician or guardian, who may be subject to financial incentives or bias.
Finally, if a court determines that an individual lacks capacity to make decisions, it might appoint a guardian with legal authority to make decisions for that person. Some experts see this approach as being costly, time consuming, and overly cumbersome. Guardians often are not adequately trained and do not know the patient.
Schweikart finds that debate among ethicists about the best approach tends to focus on the physician and ethics committee models. Those who support the physician approach argue that doctors’ knowledge and skill, coupled with their fiduciary duties to the patient, make them ideal decision makers for the unrepresented. Those who support the ethics committee model believe that such panels are less susceptible to conflicts and biases than physicians.
“A recent development in hospital policy and law is a tiered approach, which applies aspects of both the physician and the ethics committee approach in decision making for unrepresented patients,” Schwikart notes:
In the tiered approach, treatments and procedures are assessed and assigned to one of 3 risk categories—low-risk or routine treatment, major medical treatment, or life-sustaining treatment—as a basis for decision-making policy. For example, a physician may make decisions regarding low-risk treatments that are routine and in keeping with accepted medical practice standards. For medium-risk procedures that would normally require written informed consent, a physician might be required to consult with another physician or an ethics committee. The highest-risk or highest-stakes procedure, typically deemed to be withdrawing or withholding life-sustaining treatment, might require a physician to get approval and consensus from an ethics committee. These examples give a rough sketch as to how a tiered approach might function—the exact parameters and requirements vary. For example, Colorado, New York State, and Montana have instituted statutes with a tiered approach similar to that just described. The Cleveland Clinic has also generated a similar institutional policy based on 3 risk categories: routine care, decisions for which informed consent would ordinarily be needed, and decisions about withholding or withdrawing life-sustaining treatment.
Schwikart concludes that a collaborative, multidisciplinary approach to the problem of unrepresented patients, although imperfect, is preferable to a unilateral approach.
“As Jennifer Moye [professor of psychiatry at Harvard Medical School] et al argue, ‘collaboration is key to illuminate their [unrepresented patients’] needs and rights,’ while providing a ‘menu of options’ that involves all 3 of the major decision-making approaches: physicians, ethics committees, and guardianship. Taking this collaborative approach (which includes guardianship) and combining it with a tiered approach (which strikes a balance between physicians and ethics committees) creates a multifaceted decision-making method, involving layers of options and ethical safeguards, thus making it likely the best possible solution to this most vexing of bioethical quandaries.”
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