A seventy-four-year-old man presented to the emergency department for evaluation of a basal ganglia hemorrhage. He was alert, oriented and spontaneously breathing; no surgical intervention was indicated. Within 24 hours of intensive care unit (ICU) admission, he became more lethargic, requiring external ventricular drain (EVD) placement. No family was available for consent, so the procedure was performed as a lifesaving measure. The ICU social worker attempted to locate family members or identify a surrogate decision maker. During the next nine days, the patient’s mental status improved with EVD drainage, and he was transferred to the step-down unit. Subsequently, his mental status worsened, requiring emergency intubation for airway protection. Continued attempts to contact family were unsuccessful.
Treatments included EVD reinsertion, broad-spectrum antibiotics for ventriculitis, ventriculoperitoneal shunt and percutaneous endoscopic gastrostomy tube placement. Neurologic status remained impaired, with inability to follow commands or respond to voice or noxious stimuli; some spontaneous purposeful movements were noted.
The social worker and ICU team continued trying to locate family members to provide insight about the patient’s values and preferences and make care decisions on his behalf. People identified as nephews were contacted; they referred the ICU team to the patient’s daughters, who lived in Paris and had been estranged from their father since childhood. The patient’s ex-wife and other daughter declined involvement.
The team held almost daily phone conversations via a French interpreter with one daughter to explain the gravity and irreversibility of her father’s condition. The daughter was presented with two options: tracheostomy and transfer to a long-term care facility or forgoing life-sustaining measures and allowing an unimpeded dying process. When asked what her father might prefer under these circumstances, she replied consistently that, not knowing his wishes, she could not make any medical decisions.
Ethics consultation was requested by the ICU team. Given the patient’s lack of capacity, advance directive or willing surrogate, the Ethics Committee emphasized that his significant vulnerability triggered heightened professional obligations of protection and advocacy. Efforts to identify a surrogate located a close friend who had visited the patient. The friend explained that the patient had asked her to make medical decisions if he were unable to do so, but this had never been legally documented. She described in detail the patient’s values and requests not to be maintained in the diminished condition predicted by his physicians. After considerable discussion, the ICU care team and bioethicist concurred that she could credibly represent the patient’s wishes.
Based on her knowledge of the patient, the friend advocated forgoing further life-saving interventions, and performing compassionate/terminal extubation. The patient died peacefully nine hours post-extubation.
ICU patients often lack decisional capacity, especially when the cause of illness is a neurologic condition or injury. In these cases, clinicians must turn to advance medical directives and surrogate decision-makers to guide treatment decisions. There are two specific types of advance directives (ADs). One is the living will, which provides insight into the patient’s wishes for specific treatments but is subject to interpretation and may lack applicability to the circumstances at hand. The other is the durable power of attorney (POA) for healthcare, which appoints a surrogate decision-maker who is charged with making decisions that the patient would make for him-/ herself. Not all POA forms include authority for medical decision-making, so written documentation must be available and reviewed by the clinician.
When a patient lacks decisional capacity, has not executed an AD, and does not have a court-appointed proxy decision-maker, clinicians must identify a surrogate to speak on the patient’s behalf. Identification of a surrogate decision-maker is often outlined in state statute, and generally reflects descending order of familial relationships. States vary in the inclusion of an option for designation of an “interested party” to make decisions for the patient in the absence of a higher-priority surrogate. Clinicians must know state laws and policies that pertain to their organizations.
Surrogate decision-makers are expected to participate in shared decision-making with the healthcare team by representing the patient’s previously expressed wishes, values and beliefs. In some cases, the patient has previously expressed wishes regarding specific medical treatments, and the surrogate is merely responsible for conveying these preferences to the healthcare team. Often, the patient and surrogate have not discussed the specific decision at hand, and the surrogate shares the patient’s general values and beliefs about medical treatment and quality of life. Finally, in those circumstances in which the patient has never had capacity (ie, a person with lifelong, severe cognitive delays), the surrogate must balance the benefits and burdens of the proposed treatment and make decisions in the patient’s best interests.
Even in the absence of an AD, this system typically functions well if the patient’s wishes are known and a surrogate is identified who respects the patient’s beliefs. Healthcare teams and surrogates generally reach consensus even if the patient’s wishes are unknown by applying information about the patient’s values and lived experience. Challenges arise when the surrogate does not appear to be acting in a manner consistent with the patient’s values and beliefs or when a surrogate cannot be identified. In these circumstances, ethics consultation or involvement of legal experts is helpful.
In this case, the patient lacked decisional capacity from the time of initial presentation. Lifesaving treatment was provided while the medical team attempted to locate family. As family members were identified, they were provided with information and, to the degree possible, they were engaged in the process of shared decision-making for the patient. While the patient’s daughter was willing to discuss her father’s treatment with the team, her ability to act as his proxy was limited by their estrangement. Had she been willing to make decisions for her father, she would be able to articulate what she felt was in his best interests based only on what she believed others might choose in a similar situation based on perceived benefits and burdens. Although not explicitly stated, it is assumed that the nephews were unable or unwilling to serve as surrogates.
This case reveals the limitations of the presumption that family members are best equipped to act as surrogate decision-makers. In the absence of an AD, two actions are necessary: 1) identify the surrogate decision-maker per state law or organizational policy, and 2) query those closest to the patient about the patient’s values and beliefs. Medically appropriate treatment options are then presented, and shared decision-making occurs. If the legal decision-maker is unfamiliar with the patient’s values and beliefs but an alternative source of this information can be identified, it can be useful to engage both parties in discussion. When discord occurs, clinicians are ethically obligated to negotiate a patient-centered outcome.