He died in the fall of 2021, following 20 weeks in ICU (not COVID related). I have few words that can describe the magnitude of my grief through the many weeks of seeing my father suffer with numerous nosocomial complications as we navigated a health care system that had been stretched beyond its limits, weighed down by compassion fatigue. 

Over the course of my career, through internal medicine residency, hematology training, and then several years working in a busy leukemia and bone marrow transplant unit, death and suffering were not strangers to me. But I was left reeling as I witnessed my 76-year-old father’s drastic and progressive loss of basic human body functions. He lost the ability to independently breathe, cough, swallow, sit up, turn over, stretch his arm to relieve an itch somewhere on his body … and the list could go on. I spent an hour every morning breathing, meditating, and praying, just to gather the energy to face another day of seeing my father suffer. So much of the suffering had been preventable had the medical system not been bursting beyond its seams.

But what felt like the strongest punch to the gut was the mechanical sense that accompanied the medical care my father received. The busy landscape of medicine with its lists of differential diagnosis, discussions of risks and benefits, diagnostic procedures and treatment options seemed strikingly barren and harsh from this vantage point. I felt angry and helpless amidst an unwanted, growing existential crisis. Why is this happening? How do I make sense of this immense suffering? What is missing here? These questions came alive for me in ways they had not before.

sunflower Mircea Ploscar pixabay.com cropped.jpg
"My heart broke every time I wondered if he yearned for the warmth of sunlight or simply to use his voice to share his anguish. Did he long to hear the sounds of nature?" - Dr. Ghazala Radwi (photo credit: Mircea Ploscar, pixabay.com)

For 20 long weeks, my father was deprived of the simple things that bring joy in life like the ability to connect with others through touch and words, despite having a preserved cognition. Confined within the growing limits of his own body and the walls of an ICU room, his world was reduced to hospital lights and the sounds of monitors and alarms beeping around him. The sterile hospital environment seemed devoid of what was truly healing to human spirit. 

My heart broke every time I wondered if he yearned for the warmth of sunlight or simply to use his voice to share his anguish. Did he long to hear the sounds of nature? Did he miss the taste of food in his mouth? Where was the human connection? No one else seemed particularly interested in these questions. I asked the questions in a void and found no answers. There seemed to be an invisible yet impenetrable wall between me and the medical world around me. The deeper my anguish became, the thicker that wall became. With a sinking heart, sitting on the leather seats outside the ICU, I realized I was now the “difficult family member, out of touch with reality” discussed at physician rounds. In moments of tear-filled clarity, I realized that the invisible wall was the armour I had worn many times as a physician. It was the desperate attempt at self -preservation by a medical team drowning in its own anguish.

With the final round of sepsis caused by a multi-drug-resistant organism, his body finally succumbed. I was called in and by the time I arrived, my father had already taken his final breaths. At 2:30 a.m. the night my father died, the physician who briefly met with me had the following words to share, “He was very sick, as you know. You’re a physician yourself.” He had shrugged his shoulders and had little else to say. But my physician training and experience had not automatically prepared me to face the darkest hours of my personal life. In the weeks following his death, I grappled with the loss of an integral part of my life and my sense of who I am. Months later, the grief of his loss seems bearable, but I continue to be stunned by memories of the mechanical nature of medical care that I had witnessed, and I struggle to integrate that heart-wrenching experience into the tapestry of my memories.

According to Dr. Rachel Naomi Remen, “No matter what means we use, service is always a work of the heart. There are times when the power of science is so seductive that we may come to feel that all that is required to serve others is to get our science right, our diagnosis, our treatment. But science can never serve unless it is first translated by people into a work of the heart.”

The “work of the heart,” as Dr. Remen beautifully calls it – isn’t this what drew us to this noble calling in the first place? I invite you to now turn inwards for a moment of reflection. Where has medical training cut you off from your own heart? Has your medical training prepared you to deal with life’s biggest sources of suffering – illness, tragedy, death? Do you immerse in your busy world, looking for respite from the growing ache of being severed from your own heart? 

In a profession where we are exposed to so much vulnerability and often the depth of human tragedy, inequity and suffering, the logic would follow that we have mastered the art of living. But have we? In the busy pursuit of productivity, publications, and academic success, behind the masks we put on to go to work every day, within our cores – we are exhausted and depleted. The landscape in medicine feels barren, with little space or time to immerse in the work of the heart.

“Who has time for that?” we say. The work of the heart involves processing years of repressed emotions and unprocessed grief. But the price we pay for repressing that grief is huge. How are we asked to sit with the suffering of others when we have not been allowed space to honour our own woundedness and suffering? In Greek mythology, Chiron is the wounded healer who, through the acknowledgement of his two-fold deep wounds of being outcast and physically injured, is able to find inspiration and insight into the healing of others. 

Wholesome definitions of healing include an increased capacity to be present during suffering and not be limited by it. It includes the capacity to experience deep love, joy and the connection that we crave and that can replenish our empty tanks. For as long as humanity has existed, so have intricate wisdom frameworks and beautiful rituals that give us access to our innate capacity to hold suffering with tenderness and deep compassion. Over thousands of years, art, music, poetry, story-sharing have made the unbearable bearable and have helped humans open to the presence of suffering and of death. 

So here is my bold call for action. Let’s create dedicated spaces and time within the world of medicine to cultivate the safety, knowledge and wisdom needed to allow our medical services to be a work of heart. Let’s elevate this work of heart and make it the overarching competence required in medicine and one that is given as much worth as – if not more than – scientific paper writing and academic titles. Let’s make space within our medical curricula to learn how to respond to emotional and psychological distress and have frameworks within which we make sense of suffering, illness and death. 

At our joint hematology and hematopathology educational half-days, we have initiated “Reflection Rounds.” These are spaces to contemplate the vulnerable, often uncomfortable, dimensions which weave the fabric of humanity. I also teach the eight-week mindfulness-based stress reduction (MBSR) program, an immersive, experiential program that helps cultivate the capacity to be present for our own suffering, and with it, the capacity for deep joy, love and tender wisdom.

I continue to be visited by memories of the final days of my father’s life and the circumstances of his death. But just like Chiron, the wounded healer, it is in the compassionate witnessing and acknowledgement of my own suffering that I am called to write this piece. It is in embracing the ache in my own heart that I am able to sit next to another aching human being. And it is in this mutual honouring of each other’s wounds that we stumble upon the healing and opening to life we have all been yearning for. 

Recommended articles and resources

  1. Meier, D. The Inner Life of Physicians and Care of the Seriously Ill JAMA. 2001;286:3007-3014
  2. Makowski SK, Epstein RM. Turning toward dissonance: lessons from art, music, and literature. J Pain Symptom Manage. 2012 Feb;43(2):293-8. 
  3. The Wounded Storyteller, Body, Illness and Ethics Second Edition by Arthur W. Frank 

Banner image credit: Aurélien Barre, pixabay.com