As a North American palliative care fellow training through the ACGME, we are required to spend at a minimum, two weeks of time rotating on pediatric palliative care. To be honest, I think most palliative care trainees, especially those of us who train in adult medicine, hold our collective breathes during this rotation. We tended to avoid training in pediatrics due to our discomfort working with seriously ill children. I enjoyed my pediatric palliative care experience at Duke, mainly because not a single patient died while I was on service, and I spent the majority of my time working as a psycho-oncologist helping to use my med-psych skills for symptom management.
However, in the short few weeks I have been in Kenya, my pediatric experience has increased exponentially. On the "adult" public wards, adulthood starts anywhere from the age of 12-14. So it is not uncommon for the palliative care team to be consulted for a 14 year old with Stage IV rhabdomyosarcoma or a 16 year old with acute leukemia. This aspect of the work here, has been by far the most challenging to me, especially because I am a new father.
The psychiatrist inside of me understands the "positive countertransference" I develop each time I see a young Kenyan child, and how this causes me to over identify and be less objective. At the same time, I know that the inner strife and sympathy, is an appropriate human response, and so I do my best to keep these "positive feelings" in balance, especially when I am faced with a critically ill child.
We had been caring for "Denice," a radiant 18 year old Keyan girl, for the past 4 days after she was admitted with nose bleeds, fatigue, weakness, and recent infections with Typhoid. Denise was the middle, and only, daughter in her family. She was ebulent, talkative, and in many ways, appeared much younger than her age revealed. She reminded me a popular high school senior, who was just getting ready to launch into the world.
Her workup had revealed very low platelet counts, and one of the highest white blood cell counts I had ever seen on a CBC (191k). The oncology team had a working diagnosis of acute leukemia. In this setting, acute leukemia is essentially a death sentence. The supportive care needed (IV antibiotics, bone marrow stimulating medications, sterile conditions, etc.) are non-existent to keep a patient stable with the type of toxic chemotherapy needed for a potential cure or palliative treatments. She was suffering from an oncologic emergency, at high risk for death, and the modern treatments such as leukophoresis are an interesting discussion on rounds, but not a clinical reality.
Denice and her family are some of the few patients on the public wards who speak fluent English. Thus when the palliative care team was consulted to assist the oncology team with breaking bad news to her family, this was an experience which hit closer to home because of a lack of the language barrier. Her mother and father were accompanied by their pastor for a the meeting late last week where we provided a "warning shot" that she likely had a blood cancer, and that her prognosis was likely poor. The family opted for treatment if the oncology team could offer this to her. Since we did not know the exact type of leukemia yet (we were waiting for further "investigations" from pathology) we could not initiate treatment until this week. We planned to re-convene today to discuss her treatment options after we learned she had n aggressive form of Acute Myeloid Leukemia.
So this morning when I stepped onto the wards a little before 9am to have a "meeting before the meeting" with the oncology team I was not prepared for what came next. I rounded the corner on the Nyaya wards, and in her bed, where usually two patients lie, was a single person, lying still, beneath a blanket. I froze for a moment, in shear disbelief. Praying and hoping that it was not Denice lying dead there under the covers. When I stepped to the bedside, the other 40 or so Kenyan patients and family members in the surrounding beds were somberly watching me. I pulled the bed sheet back, and lying motionless and breathless, dry blood on her nose, mouth and bedsheets, was Denice. Tears immediately welled up in my eyes, and my thoughts drew blank with shock. Just 24 hours earlier, this young girl, with a radiant smile had been laughing and carrying on, and now she was dead.
My sadness then rapidly turned to anxiety, as there was no family at the bedside, and I knew that her whole family was traveling 2 hours this morning for our meeting. The bad news meeting morphed into a terrible news meeting. I spoke quickly with the clinical officer who showed me her chart and explained that she became acutely short of breath, began bleeding, and then suddenly went into cardiac arrest. She decompensated too quickly to be resuscitated and ICU care was not available due to no ICU capacity in the hospital. I surmised that she developed acute hyperviscosity syndrome/leukostasis, likely pulmonary edema, and then sudden cardiac death.
I have broken the news of a patients death to family members too many times to count. But as an adult physician, this often is a discussion after a protracted illness, prolonged hospital stays, and in general allows families to have some time to prepare for this event. Instead, I found myself in the unfamiliar waters of breaking the news of a tragic death, a sudden death, not just of a patient, but of a child. I was terrified of their reaction, and concerned that I would make a cultural blunder as well.
Her family was devastated, her mother in shock, and more than anything they just wanted to see their daughter. My nurse and I accompanied Denice's parents and brother to the mortuary, to allow them to see her, and try and make some sense of things. Our team spent almost 2 hours with the family, processing their questions, sharing tears, and trying to offer a modicum of support. Denice's father turned to me at one point and said, "I still do not believe this, it is a dream, one I hope to wake up from soon." He thanked me, with a firm handshake and a deep look in my eyes, for accompanying them to the mortuary, and for being honest with them about what had transpired.
I know, that for Denice's family, I am now a part of a deep seeded memory, of likely the worst day of their lives. I just hope that by just being present with them today, sharing their sadness and grief, that I upheld what I feel is the greatest role in healing that we can play as physicians, which is never, ever, abandoning a patient or family, at their greatest time of need.
