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A Piece of My Mind
March 24/31, 2020

The Other Side

Author Affiliations
  • 1Department of Medicine, Hospital of the University of Pennsylvania, Philadelphia
JAMA. 2020;323(12):1135-1136. doi:10.1001/jama.2020.2054

It was just an average Sunday, special only in how coveted golden weekends can be 8 months into intern year. I had planned to spend the day rejuvenating the best way I knew how—by playing as much soccer as possible—and was particularly proud that I had managed to squeeze in an afternoon haircut between 2 games. Resting in the salon with warm water running through my hair and a towel draped around my shoulders, I received a text from my mom. My dad had suffered a cardiac arrest.

He had been a healthy 56-year-old man. No past medical history. He was a lead mechanical engineer at the Goodyear Tire & Rubber Company in Akron, Ohio, a profession befitting his brilliantly logical mind and penchant for precision. An avid sports fan and accomplished former track and field athlete in college, he had remained active over the years and still spent every Sunday afternoon playing pick-up basketball at a local high school. That Sunday, he had been backpedaling to transition on defense when he suddenly collapsed on the middle of the court. Nobody could figure out what had happened. Someone called 911. Someone else scrambled out of the gym to find help. Eight agonizingly long minutes later, a member of the swim team ran in to start chest compressions. The paramedics arrived soon afterward and continued resuscitation efforts as they whisked him away to the nearest emergency department, where, 30 minutes later, he eventually gained return of spontaneous circulation.

My dad remained in the intensive care unit (ICU) for 3 weeks, undergoing a tracheostomy and percutaneous endoscopic gastrostomy (PEG)—his first ever surgeries—before being discharged in a persistent vegetative state. When I visit him now, he opens his eyes. He blinks when I touch his nose or wipe his brow. He moves his arms when I tug on them. He withdraws his hands and feet to painful stimuli. But does he see me? Or feel me? Can he hear me? If you ask the doctor side of me, the answer is almost certainly no—but that does not stop me from FaceTiming him every day or asking my mom to transmit my never-ending kisses or telling him how much I love him and how much I miss him.

I had never imagined anything like this could happen to my family. As an internal medicine resident, I care for patients and their loved ones every day, both those who are completely overwhelmed by the shock of a new diagnosis and those who have become resigned to the routine of hospital admissions. They are people who look like me and people who do not, but regardless, their illnesses and their losses had always seemed like something that happened to others. I would feel for them, but I could not feel as them.

After spending 5 weeks at home (time for which I am deeply grateful to my residency program for providing), I returned to Philadelphia to resume my intern year. However, I quickly realized that everything had changed.

Goals-of-care discussions and family meetings now carry new meaning. Every day, I attempt to navigate my own family dynamics: though I may be his legal guardian, my dad is not just mine but also a beloved father to my brother as well as a husband, son, brother, uncle, and friend. Every day, I try to appreciate cultural differences in attitudes about life and end of life, for my dad was born and raised in China, where his sister and parents still live. And every day, I struggle to determine what my dad would have wanted, incessantly scouring the archives of my memories of him, seeking to recall any clues that might hint at his convictions, and striving—and failing—to disentangle this from the snarled knot of my own wishes for him, for my family, and for myself.

Returning to the ICU as an intern instead of family member was nearly irreconcilable. In every family meeting and goals-of-care discussion, I saw my own family sitting there, hearing the news no loved one can ever bear to hear. For every family who could make the decision I could not—to let their loved one go—I both admired and envied their strength and conviction. For every family who wanted to keep going, I felt as they did as we each wrestled with the impossible task before us of reconciling an agonizing reality with the hope and faith that sustain us.

One call night, we admitted a patient who had been transferred from the floor for respiratory failure in the setting of an aspiration event. As a result of multiple strokes, the patient was nearly nonverbal, minimally interactive, and reliant on a PEG tube for nutrition. On arrival, the patient was awake, eyes staring off to the left side of the room. Both arms were flexed at the elbows, clenched against the chest—the exact likeness of my dad. The team who had been caring for the patient on the floor shared the preceding events: the rate of tube feeds had been increased to goal when the patient suddenly desaturated and started coughing. By ICU standards, it was a straightforward admission. But then, in their weariness as they wrapped up their sign-out, the floor team remarked, “You know, maybe it’s a good thing this happened. Maybe now the family will advance goals of care. What a disaster of a human being.”

This was devastating. To hear colleagues, whose compassion and kindness I knew firsthand, say that this patient’s life was not worth living—that meant that my dad’s life was worth even less. Because in speaking with the family, I learned that at least the patient could smile when they brought up cherished memories, could nod yes and say no, and could even call out their names. That was enough for them. What I would not give to hear my dad say my name again; that would be more than enough for me, too.

The following morning, the topic of our teaching rounds was difficult goals-of-care conversations. We discussed our experiences caring for patients whose families were not ready to hear that additional medical care would neither prolong life in a meaningful way nor contribute to quality of life. Every single resident in the room nodded in agreement before sharing their own experiences of trying to communicate such a message that seemingly falls on deaf ears, expressing the frustration that results from continuing to provide care for patients when it feels as if there is nothing to be gained.

Everyone except me.

I could only stare down at my corner of the conference table in shame, not daring to meet anyone’s eyes through my veil of tears. Because if they saw me, maybe they would discern the secret I was carrying—that I was on the other side and I was that “unreasonable” family member, clinging on to the tiniest shred of hope and the miracle of prayer. That I was personally guilty of perpetuating a situation in which additional medical care would almost certainly not lead to any improvement in my dad’s mental status. That I was not strong enough to make the more difficult decision. As soon as the teaching session was over, I bolted out of the room.

In the months since, I have come to appreciate that, at least for now, my family’s decisions for my dad are not completely egregious. He is stable, and as far as we know, he is not suffering. However, recognizing this does not stop me from feeling kinship with the families who grapple with these impossibly difficult decisions for their critically ill loved ones. I do not wish to overlook the value of dying well and dying with dignity, but I also wish to emphasize the importance of respecting the enormity of the decision faced by those who will have to live with the consequences, long after their loved one leaves the ICU. Although we can say that there are no wrong decisions in times like these, it often feels as if we, as a medical community, strongly favor cessation of medical care as the “right” decision and expect families to arrive at the same conclusion in a timely manner.

In medicine, we are called “to cure sometimes, to relieve often, and to comfort always.” For patients and families facing these decisions at the end of life, perhaps one of the greatest comforts we can offer is simply more time. I know my family and I are profoundly grateful for the time we have had to come to terms with our reality and for the time that we still have to find peace in the decisions we have made—and in those we have yet to make.

Section Editor: Preeti Malani, MD, MSJ, Associate Editor.
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Article Information

Corresponding Author: Anne Song, MD, Internal Medicine Residency Program, Department of Medicine, Hospital of the University of Pennsylvania, 3400 Spruce St, 100 Centrex, Philadelphia, PA 19104 (anne.song@pennmedicine.upenn.edu).

Conflict of Interest Disclosures: None reported.

Additional Contributions: I thank my family for letting me share our story.

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    1 Comment for this article
    Heartfelt and Heart Full
    Rex Mahnensmith, M.D. | Retired
    Lovely, loving, beautiful, and blessed.