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NCS Currents Sept 2016

NEUROCRITICAL CARE ETHICS Ethics in Neurocritical Care: Discordance Between Surrogates and a Living Will By Barak Bar, MD and Michael Teitcher, MD Case Narrative: An elderly woman is admitted to the Neuro ICU with a catastrophic ICH. She is comatose and has no husband, but has two adult daughters who are the next of kin. By the State Healthcare Surrogacy Act of Pennsylvania, the daughters are the legal surrogate decision makers, although neither one had been appointed power of attorney (POA) by the patient. The patient specified her preference in a living will that, under circumstances of an incurable or irreversible terminal condition or permanent unconsciousness, she would choose to forego life-sustaining measures. However, her daughters now request the team to proceed with life-sustaining measures in her current clinical state. How should the medical team proceed? Neurocritical care is a setting in which clinicians may be called upon to respond to requests Barak Bar, MD made by surrogate decision makers that are in conflict with wishes previously expressed by the patient. While there may be clear legal guidelines that usually ascribe non-binding status to a living will and mandate acquiescence to the surrogates, the ethical contours of the case are not at all straightforward. By expounding on the ethical dimensions at play, we hope to better empower those involved in the care of critically ill patients to navigate the murky moral landscape of neurocritical care. Language and Issues of the Case: Patient Autonomy and Decisional Capacity Autonomous decision making seeks to avoid medical paternalism and ensures that a patient is treated in the context of his or her own values, beliefs, and wishes. It requires decisional capacity at the time of the decision, including an appreciation for alternatives and possible outcomes. According to Beauchamp and Childress, “personal autonomy is, at a minimum, self-rule that is free from both controlling interference by others and from limitations, such as inadequate understanding, that prevent meaningful choice.” While a living will may allow patients to voice their preferences, it is often a document that deals only in generalities and cannot address specific facts of the case, some of which may be ethically pertinent. Perhaps the very use of a general document to guide decisions that require an understanding of specifics makes the decision inherently laden with inadequate understanding and therefore not truly autonomous. The Role and Moral Agency of a Surrogate Some argue that a surrogate should use “substituted judgment” to make a decision, which entails using knowledge of the patient to discern what the patient would currently decide if she had capacity. From a moral standpoint, a substitution implies exercising autonomy on the patient’s behalf. Surrogates may have the moral authority to overrule a living will since even patients themselves often change their health care decisions during the course of their illness. However, others argue for using a “substituted interests/best judgment” standard, which entails a discussion with the surrogate aimed at describing the patient’s values, preferences, and goals. The physician is then able to present options that would best achieve those interests. In this model, it is less important to ask what a patient would say, but rather ask “who is this patient?” The advantage of this approach goes beyond semantics, as surrogates may find it easier to describe their loved one rather than try to provide substituted judgment. Such an approach sees the surrogate merely as a key source of discernment of the patient’s values, not her moral autonomous equivalent. Perspectives and Key Points of View The Patient While patient preferences may fluctuate over time, a patient who filled out a living will took the time and thought to consider a difficult topic and to express wishes in writing. In addition, patients often fill out such documents specifically to remove the burden of decision from family members who would be surrogate decision makers. In this way, a living will is a tool that can be used to serve both the patient and the family, something often crucial in end-of-life settings. The Surrogate Owing to the fact that they often know the patient intimately for many years, next of kin are better equipped than physicians to accurately reflect the preferences of the patient. However, it is crucial to discern if the surrogates are acting in good faith. Surrogate decision makers are often thrust into these situations unexpectedly especially given the acute illnesses managed in the Neuro ICU. Coping with the intense emotions that arise can lead to irrational decisions. Using the “substituted judgment” criteria outlined above, one needs to ask whether they are truly representing what the patient would want without injecting their own interests or values. If not, they may lose their moral basis for acting as surrogates. By the “substituted interest/best judgment” standard, one must ask what values inform the decision. Do the values expressed by the life she lived demand prolongation of life at the cost of prolonged suffering? The answer to that question demands a thorough understanding of the patient’s value system applied to the specifics of the case, and can result in a moral imperative in either direction. The Physician Physicians bring medical expertise as well as experience on which both patients and surrogates rely for guidance in difficult ethical decisions. However, prognostication of outcome is fraught with uncertainty. Physicians also have their own moral agency that should be respected and should not be forced to act in a manner that violates their moral duty to do no harm. It is important for physicians to be cognizant of their own emotional and ethical points of view, as well as to recognize that what is “best” for the patient may often be a values-based decision and not a medical one. Approaching Resolution With these foundations in place, we can better navigate the murky waters of our dilemma. While the law may often grant surrogates the right to use “substituted judgment” to deviate from a living will, a discussion using a “best interests” framework might achieve a more patient-centered resolution. It is important to spend time with the family to determine the underlying reasons why their wishes conflict with the patient’s living will. Perhaps the surrogates are in a state of denial. Instead of asking the surrogates what mom would want, the conversation could start with “tell me about your mother.” By allowing the surrogates to focus on describing the patient, the burden of the decision is temporarily lifted as they reflect on the identity of their loved one. It may then be easier to direct goals of care towards maintaining the patient’s identity and dignity in her most vulnerable stage of life. Michael Teitcher, MD and Barak Bar, MD are neurointensivists at Loyola University Medical Center. They are members of the NCS Ethics Committee. Michael Teitcher, MD 17


NCS Currents Sept 2016
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