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Reciprocal responsibilities of patients and proxies
Lessons for advance care planning
A study of the roles and responsibilities of patients and their proxies has implications today for hospital ethics committees and associated consult services, particularly with regard to the weight given to the voice of the proxy, according to "Contracts, Covenants and Advance Care Planning: An Empirical Study of the Moral Obligations of Patient and Proxy."1
In an effort to "better understand the moral obligations of the patient-proxy relationship," researchers at Weill Medical College of Cornell University and others surveyed patient-proxy pairs, in addition to individuals "who had acted as proxies for someone who had died."1
The resulting paper, published in 2005 in the Journal of Pain and Symptom Management, assessed "whether respondents believed that proxies should follow explicit instructions regarding life-sustaining therapy and act contractually or whether more discretionary or covenantal judgments were ethically permissible."1
What the researchers found in the statistically significant data was that the use of "interpretive or covenantal judgment was desired by patients and proxies when the prognosis was grim, even if initial instructions were to pursue more aggressive care," according to the study abstract. "Nonetheless, there was a valence effect: patients and proxies intended that instructions to be left alone be heeded."
According to the study, the researchers' data "indicate that the patient-proxy relationship exists on a contractual to covenantal continuum and that variables such as disease trajectory, the clarity of prognosis, instructional valence, and the quality of patient instructions result in statistically significant differences in response."
"I think what [the study] does is it helps us understand that we should give equal weight to people's choice as representatives," says Joseph J. Fins, MD, FACP, division chief, medical ethics, at Weill Medical College of Cornell University in New York City. "We've taught a generation of people to focus really on substantive preferences . . . as to what they want, and sometimes what they say they want is somewhat cryptic. I think we need to balance that against . . . what I call the procedural moral authority of [the] person chosen to represent you."
However, "under prevailing ethical and legal norms, the surrogate, if called upon, is obligated to follow the wishes expressed by the patient while competent. In lieu of explicit preferences, the surrogate is expected to invoke the substituted judgment or best interest standards. In this moral hierarchy, the discretionary judgments of a surrogate under the guise of either substituted judgment or best interests are viewed as inferior to following the articulated preferences of the patient."1
But, the study authors suggest in the introduction, "if the act of being chosen is [at] least as important as the articulation of preferences, then the proxy has two sources of moral authority. One is substantive, what he or she knows of the patient's wishes. The other is procedural, which stems from the act of being chosen."
"So, the fact that one has been chosen out of the 6 billion people on the planet," Fins tells Medical Ethics Advisor, "to me and through this research, confers a degree of moral authority that is different than if you hadn't been chosen, and gives people some discretion to use that 'chosenness' as a way of interpreting the situation, weighing both the context of the situation and the prior wishes."
Negative right stronger
In the study, there was, according to Fins, what is termed a "valence effect."
Patient in this study included 50 patient-proxy pairs and 52 individuals who had previously acted as proxies for someone who had died.
"Because patients in this study wanted their chosen persons, their proxies, to use their what I call discretionary moral authority to make judgments, especially in situations where the prior instruction was to do everything no matter what, in the face of a dire prognosis, it was suggested that patients wanted their proxies to make more proportionate choices.
However, Fins notes, "there was a valence effect that when the patient said 'no,' no means no and no wasn't open to interpretation. So, if somebody said, 'I don't want to receive aggressive care,' patients in the study weren't hoping for their proxies to countermand the negative right to be left alone."
The study results suggest that the proxy should be allowed to "interpret the evolving prognosis to be informed by the prognosis. But I think it also shows the importance of the negative right being stronger than the positive entitlement; the negative right to be left alone is stronger than the entitlement to have something done to you," Fins explains.
One conclusion that Fins draws from the research findings is that health care providers and the health care team "have to appreciate the burden imposed on the proxy, or health care agent, who has been chosen, and the responsibility of the patient and the health care team to make sure that they're prepared for this obligation that they understand the patient in his or her depth and what his or her wishes are in order to represent them."
Fins says he thinks another important point that the study findings suggest is that, "in the various scenarios . . .the patient always knew their mind better than the proxy did. There was more certainty in the choice the patient had a more extreme view, as it were, to the contract or covenant side of the equation than the proxy did."
For that reason, "it obligates us to share our thoughts and feelings with our chosen proxies, because . . . at the very moment that the health care proxy's authority goes into effect, the one person they're most going to want to speak to is unable to speak for herself," says Fins.
"The real import here is this notion of covenant . . . that there's a reciprocity, that we have a covenant with each other and responsibilities to each other," Fins explains. "[Just] as I have a responsibility to speak for you, when you cannot speak for yourself . . . the reciprocal responsibility is the patient has a responsibility to the proxy, while he can speak, to give a kind of moral guidance."
Joseph J. Fins, MD, FACP, Division Chief Medical Ethics, New York- Presbyterian Weill Cornell Medical Center, New York City. E-mail: firstname.lastname@example.org.