April 1, 2019

A Mother’s Love

One fall morning, two decades ago, I arrived at the emergency room before the sun. The unit was already bustling with sick people. I was a new attending and within days I felt as if I had come home. Everything about this place made me want to be there: the adrenaline, the organized chaos, the opportunity to meet new people. Most days, even with the sick patients I tended, I was happy. But there exists that moment – most of us know – when the world shifts under us, the day lasts forever as a lesson and a scar, a day when a patient leaves their legacy in our hands. This was my day.

My patient was Sean. He was acutely ill. That was the first thing I noticed when I walked into room 10. Shortness of breath was the chief complaint. This was typical fare in the ER, I remember thinking. He was sitting crossed legged on the stretcher.  I thought this was odd.

He was a small man with a soft, gentle voice. He was cachectic. I introduced myself. “Hi”, he said. His gaze was downward and fixed.  An older woman sat by the stretcher with a look of concern.

He was already hooked up to a cardiac monitor and pulse oximetry. I attempted to take a history, but his words were faint.  He motioned with his hand to the woman sitting there. It was his mother.  

A nurse had implemented protocol orders—oxygen supplementation, IV insertion, phlebotomy, electrocardiogram. She was prepping him for a STAT chest x-ray. Meanwhile, I asked Sean’s mother to tell me his history.  “He has Muscular Dystrophy,” she said.  He was complaining of shortness of breath.  This was not an unusual complaint for him, but this time it was different, more severe. 

I understood now why he sat in that unusual position. Sean was diagnosed with Duchenne Muscular Dystrophy at two-years old.  He was now 19 and wheelchair bound. He could no longer straighten or move his legs.  After finishing his history and physical, I talked with Sean and his mother about the severity of his condition, along with the possible treatment options.

I was beginning to discuss resuscitation options, including intubation, when suddenly Sean gently raised his hand.  In a barely audible voice, and gaze still fixed downward, Sean responded: “I don’t know,” he said. He signaled with his hand to his mother. 

She responded that he does not want to be intubated or resuscitated.  This took me by surprise.  He was only a teenager.  Perhaps there could be a chance, a glimpse of hope that he could make it through this episode.

I pleaded with him to think about it further.  They asked for a minute to talk privately.  Respecting their request, I left the room. Upon my return, his condition had worsened. 

I turned to the mother, pleading that we needed to work fast to resuscitate him. She lifted her own hand. “No,” she gestured, and then the words came out calmly. She had thought about this moment for thousands of days. Her voice was soft and compassionate, “Hasn’t he suffered enough?  This is his wish.  We have had this discussion many times.  We knew this day would come, and he is ready.” 

My eyes filled with tears.  I knew she was right, and I felt pain recognizing how difficult the decision was for her.  I asked her if I could call someone. “A priest,” she said.  “And just make him comfortable.” 

We focused on allowing Sean to be as comfortable as possible.  We adjusted pillows, humidified the oxygen and administered medications. The priest arrived and he did God’s work. He delivered last rites.  The room was filled with prayer.

I was constantly in and out to check on Sean.  I ached for this mother and her son. Enough. He had suffered enough. She knew. He knew.

At last, I watched this small, strong woman lean over him, her hand touching his face. She kissed his forehead. He quietly closed his eyes and took his last breath. 

His final features included lips that were parted into a gentle smile. He had a look of tranquility on his face that we recognized with humility.  The three of us stood at his bedside in silence. As tears emerged from my eyes, she was the healer in the room.  She turned to me and wrapped her arms around my shoulders.  She thanked me for listening and making sure her son spent his last hours well-cared for. We sat, talked and cried together.  Later, she left to make arrangements for his funeral. 

I cried again on the ride home.  The tragedy of a mother losing her son was overwhelming.  I was awed by the strength they both possessed. For seventeen years, she had known his prognosis. Over the years, he understood it too. They knew a slow crippling death was inevitable.  They were prepared.  I had witnessed the grace and acceptance with which Sean died—with which his mother let him die. I knew they were right.  I admired them. 

But in that room, on that day, I wasn’t ready to accept it.

I have had two decades of doctoring and I now know that the day Sean died was when I realized the beauty of a mother’s true love.  She had acted with the utmost kindness and self-less love.  At the time she and Sean came to my emergency room, palliative care was not common.  But they asked us to provide them, essentially, with palliative care.  I am grateful to them for giving me the opportunity to listen and support them in accordance with their wishes, to truly be there for them in their time of need.  They allowed me a chance to contribute to the alleviation of Sean’s suffering by caring for his whole person, his body, mind and spirit.  Being in the presence of the courage and love Sean and his mother showed each other made me a better physician. I realize now that I was a healer in those moments after all.

Annabella Salvador-Kelly MD, FACEP
Associate Chief Medical Officer
Vice President Medical Affairs
Associate Professor, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell

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