Yesterday, 11:47 am, 6 year-old boy, TJ, died of respiratory depression. He was just admitted to the Cancer institute earlier that day. He had stage 4 Burkitt’s lymphoma. The tumor began in his jaw, 6 months earlier. It slowly spread from one side of his jaw to the other, then to other parts of his face. Unlike other cases of this type of cancer, his face was not grossly disfigured by a prominent mass; rather, he seemed to have generalized facial swelling. He had lost several teeth and his eyes were slightly more protruded. He had sought medical care, but for a variety of reasons, ranging from frank incompetence to the uniqueness of his presentation, his diagnosis was delayed. The oncology team examined him at around 11am that morning. He was found to have decreased level of consciousness, likely a result of metastasis to his brain. He also had involvement of his liver and spleen. We made a treatment plan and started him on IV fluids. At 11:42 am as the team continued seeing other patients on that ward, the boy’s mother called one the resident doctors to his bedside because his breathing seemed more distressed. All the resident could do was turn the patient on his side and watch alongside his mother as he struggled some more to breathe, until he stopped altogether; it was the end.
All the resident doctor and TJ’s mother could do was watch. This child was on a regular ward with about 15 other adults and children, many just as sick as he was. We did not have an oxygen tank close by, and with the limited resources, intubating or resuscitating him would have been futile. As everything unfolded with TJ, the rest of the team was about 20 feet away discussing another patient. TJ died, and other than the two resident doctors who were directly attending to him, no body else on the team seemed to acknowledge it; we kept rounding. The nurse isolated the area around his bed with a curtain. Most patients on the ward and their families understand the symbolism of the curtain; it is sometimes used multiple times a day.
Today, 9:25 am, 5 year-old, SE, died in his sleep. He had been on this same cancer ward for one week. He was diagnosed with ALL (acute lymphoblastic leukemia) with involvement of his spleen. He had very thing arms and legs but a distended belly. He looked quite stable 3 days previously and had been started on chemotherapeutic treatment. Yesterday, he had abdominal pain that worsened with motion and change in position, signaling a likely infection in the fluid accumulation in his belly. He looked jaundiced, very ill and had grunting sound with his breathing. He also had low blood cell counts and a fever of 40 Celsius. The oncology team re-evaluated him and decided on improving his pain management, giving him a blood transfusion and covering with antibiotics. SE’s father had been by his bedside all through his hospital stay; he was clearly becoming more frustrated as his son’s condition had progressively deteriorated while on admission. SE looked very sick and was unlikely in his current state to make it for much longer. Today around 8:45 am, four residents and I arrived at the ward to examine some patients. SE’s bed was right at the entrance of the ward, I was relieved to find him sleeping apparently peacefully; his blanket was being raised and lowered in a rhythmic fashion. He was still breathing. At 9:25, we were walking out of the ward as I took a five second glance at SE. There was no motion; “he must be fine; he was fine this morning,” I thought. I had greeted SE’s father earlier that morning as he stood over his son’s bed, he was again in the same position as we left.
A few seconds after walking out SE’ s father grabs me to come examine his son. I glance at him for a couple of seconds and again seeing no motion. I beacon to the residents, jointly we determine he is pulseless, with no breath or heart sounds and fixed dilated pupils. He is peaceful and motionless. We tell his father it was all over. He cries, sobs and thanks us for caring for his son. We get the curtain and isolate his bed.
These two stories have been my most direct encounters with dying patients. Sadly, both patients were very young, both had cancers and both had potentially curable cancers. Here in Mulago, death lurks everywhere. It is commonplace to find patients’ beds empty on returning to the wards in the morning. These deaths in absentia are much easier to accept; you come in the morning and go along with the tasks of that day. But how should one deal with deaths that one personally experiences during your day. Should one call off the day to mourn the loss of one precious life or spend only but a moment consoling the family and getting on with one’s day? Are we expressing contempt for life or nonchalance by not stopping to reflect with the passing of a life? Can one actually afford to be introspective or distraught with each death in a setting where deaths occur and are experienced multiple times a day? Ultimately, how does one maintain ones humanity while also keeping the necessary focus to get mundane daily tasks accomplished?
Many questions, many questions and no clear answers!
Please take a moment to think about these two kids and many others who have died in Mulago without much notice. You can say a quick prayer for their families.
Quote of the day:
It has cost me 300 000 shillings on transport and medications. I have had to sell all the livestock I have. I am far from home and cannot work or farm to raise more money. Father of nine with a child getting cancer treatment at Mulago, about 500 kilometers from their home. (Many Ugandans don’t make 300 000 shillings in 1 year)