The burden of choice: Navigating the complexities of surrogate decision-making in medicine

“I could have saved him,” the intensivist murmured, reflecting on a recent patient’s death. His silhouette was framed against the fading evening light that spilled into the ICU. His words, heavy with regret and resignation, floated over the hum of life-sustaining machines, recounting the tale of Caleb Stratford.

When Caleb Stratford (not real name), 61, was rushed to the hospital last June, the shock trauma team at the University of Maryland raced against time to save his life. Mr. Stratford, who had mild disabilities, suffered a sharp fall at a local bar that rendered him unconscious. His heart had stuttered to a stop in the ambulance, requiring twenty minutes of desperate efforts from emergency technicians to coax it back into a reluctant rhythm.

In the following weeks, the hospital became Caleb’s world, filled with tubes and beeps maintaining his failing organs. His body bore the marks of a hard-lived life: HIV, liver cirrhosis, pulmonary hypertension, high cholesterol, and remnants of a gastrointestinal bleed. While the critical care teams were fairly certain they could save him, the unpredictable nature of his recovery posed challenges for palliative care conversations with his family. Questions about his future abilities and quality of life loomed large. Would he ever speak again? Recognize his family? Walk into a bar and have a drink with his friends? What would make life worth living for him?

As Caleb’s family gathered for goals-of-care conversations, their faces displayed a mix of worry and love. Hopeful signs, such as Caleb’s returning reflexes and minimal reliance on the breathing machine, were shared. Yet, beneath the hopeful veneer, the family’s fear ran deep. Clinging to what they believed were Caleb’s wishes for a do-not-resuscitate order, they weighed the potential unseen damage against his life’s struggles. Their words painted a portrait of Caleb—a life of challenges, a history of care weighing heavily on his mother’s shoulders. The family reaffirmed their faith, expressing prayers for Caleb’s well-being and recounting how much of a blessing he had been. Despite hopeful signs, the fear of long-term neurological issues and the unspoken toll of being a lifelong caregiver were palpable.

Subsequent family meetings exemplified the deep complexities of decision-making in critical care. Interpreting Caleb’s unspoken wishes amid grief and uncertainty became a daunting task. Guided by their emotions, the family pondered past conversations, beliefs, and Caleb’s personality to make pivotal choices. This process brimmed with moral dilemmas and the fear of regret, mirroring their understanding of Caleb’s values and desires. Such decisions have a profound impact on those involved; blending love, duty, and the haunting question—what would Caleb have truly wanted?

Research indicates that people’s medical preferences often change, particularly for those without advance directives, making it difficult for surrogates to accurately guess patients’ desires, with only about 68 percent accuracy. Moreover, many patients prefer involving their family or doctors in decisions, even if they have advance directives. Essentially, substituted judgment is not as straightforward as it seems, as patient preferences and circumstances can frequently change.

Despite Caleb’s steady neurological improvement, the family insisted on withdrawing life support, feeling his improvement was not meaningful enough. The family’s resolve to focus on comfort care plunged us into our own ethical dilemma. We knew we could probably save his life, but skillfully balancing the family’s decisions with professional judgment and lifelong experience in caring for patients with serious illnesses became crucial. This tightrope walk over a chasm of ethical dilemmas, with patient autonomy on one side and the duty to do good and avoid harm on the other, was a frequent challenge. Eventually, the decision was made. The family, steadfast in their understanding of Caleb’s wishes, chose to withdraw life support. The intensivist shifted to comfort-focused care, ensuring Caleb’s last hours were peaceful.

Caleb’s breathing slowed, the machines were silenced, and a solemn quiet filled the room.

My colleague’s comments about saving Caleb’s life resonate as an internal silent storm. This symbolizes a universal conflict: the profound reverence for the sanctity of life interwoven with a deep respect for the wishes of patients and their families.

The ICU is a hub of relentless activities against disease and death. It is also a place where the complexities of human dynamics come to the fore, especially in the face of a family’s decision-making, where certainty is a luxury often out of reach. Amidst these unyielding forces, we are called to navigate the delicate balance of medical intervention and the respectful acknowledgment of a patient’s wishes, often conveyed through family. This demanding microcosm of life’s vast energies embodies the intricate interplay of life and death, human vulnerability, and the inevitable journey toward understanding.

Raya Kheirbek is an internal medicine physician.

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