Surrogate model focuses on substituted interests
Emphasis is on values of patient
The American medical community has been "fixated for so long on the preferences of patients" that not enough attention has been paid to the "fact that most of the decisions" at end of life are being made by surrogates not by the patients themselves, suggests Daniel P. Sulmasy, MD, PhD, professor of medicine and the Divinity School, as well as associate director, MacLean Center for Clinical Medical Ethics at the University of Chicago.
Sulmasy, who also is a member of the Presidential Commission for the Study of Bioethical Issues, is the co-author of a paper published in JAMA online on Nov. 3 titled "Substituted Interests and Best Judgments: An Integrated Model of Surrogate Decision Making."1
The paper and model it sets forth for surrogate decision-making "would suggest a preference for a health care proxy or a durable power of attorney for health care, rather than a living will," he says.
That, however, is not a new realization, he says, because many people have been saying for a long time that patients "simply can't write everything down that could cover every possible situation in which they could find themselves," as some people try to do with advance directives.
The fact that only 5% to 25% of patients have been shown to have advance directives, according to the study, points to the need for a new model rather than the "current U.S. model," which includes "formal written or oral directives expressing patient wishes for future care."
Patients, he says, are "interested in more than their preferences being part of decision-making."
"Particularly included in that is the process of how the decisions are made, and who's involved, and what weight to give [patients'] own values versus the advice of physicians or their family members' interests and family members' own beliefs about what they think would be good for them," Sulmasy tells Medical Ethics Advisor. "So, it's really sort of getting away from a fixation on the exact getting the exact right answer [that is] would the patient want to have dopamine going at 2 mcg per minutes under this circumstance to a more organic approach to deciding what kind of a person the patient really is, what their values are, and what their interests might be in a particular clinical situation, and then arriving at the best judgment we can that best represents them as unique persons."
However, Sulmasy says that this is the approach that "good clinicians" have been taking for "many years."
"But I think that's despite what the law and bioethical theory have said, rather than because of it," he notes.
Decisions often "short-circuited"
The emphasis of the paper is on the process by which decisions are reached.
"Part of what we're suggesting is that we often short-circuit the process by going immediately to the question, 'What would the patient have wanted?' which we know we can't know very well," he explains. "But we can know better, and the family members or other loved ones are the experts on knowing who the person is, what the person is like, [and] what their values are. It's not the job for the clinician to judge what those values are authentically, but I think the family or other loved ones are experts at that. And the current system ignores that kind of knowledge that almost all families have of their own loved ones."
The traditional U.S. model for decision-making of substituted judgment "can be insensitive to familial and cultural values, and most patients do not want strict substituted judgments," Sulmasy writes.
Physicians participate in decisions
In the "substituted interest and best judgments model" set forth by Sulmasy and Lois Snyder, JD, of the Center for Ethics and Professionalism, American College of Physicians in Philadelphia, "decision making is shared with [the physician], rather than delegated to, the surrogate," according to the paper.
In the paper, the authors note, "Delegating decisions to surrogates leaves families less satisfied and more distressed than when they receive a clinical recommendation."
And that is not because of the supposed authority of the physician, Sulmasy says.
"I think it's because people feel in some ways abandoned to their own autonomy; they feel lonely making the decision alone," he says. "And sort of saying, 'It's not my [the physician's] decision really isn't as helpful to family members, even though they have ultimate authority. The physician making a recommendation seems to be helpful to [surrogates], at least in qualitative studies that have been done when people have talked about the experience."
Advance directives still have role
While "documents still have a large role" under this suggested model, advance directives serve only as a "guide, providing critical information but also stating whether patients intend their preferences to be followed strictly or loosely and who should be involved in making decisions.
"Above all, encouraging discussions with loved about the process of decision making becomes central to advance care planning," the authors write.
The paper also notes some possible objections to the suggested model, such as its potential to reintroduce physician paternalism, as well as potential conflicts between surrogates and physicians when a suggested series of questions/conversations does not occur with surrogates.
Without such conversations with the surrogate and about the patients' values, sometimes "the decision-making escalates into a sort of power struggle and sort of highlights the distrust between surrogates and physicians when this kind of conversation is short-circuited," Sulmasy tells MEA. "Or, family members can be actually in anticipatory mourning; they're really grieving. They, at some level, know that the person is dying, and a failure to attend to that can again masquerade as an ethical problem later down the line."
The authors suggest that whether their model "better serves patient values and alleviates unnecessary surrogate burdens will need to be studied."
In concluding. the writers suggest that the proposed model "seems to respect patient rights and to serve each patient's unique cultural, spiritual, familial, psychological, and clinical circumstances what clinicians want to do for all patients, those who can speak for themselves and those who cannot."
- Sulmasy DP, Snyder L. Substituted Interests and Best Judgments: An Integrated Model of Surrogate Decision Making. JAMA. 2010;304(17):1946-1947 (doi: 10.1001/jama.2010.1595).
- Daniel P. Sulmasy, MD, PhD, Professor of Medicine and the Divinity School, as well as Associate Director, MacLean Center for Clinical Medical Ethics at the University of Chicago.