Dr Constantinos Kanaris is a Paediatric Itensivist who has been looking after critically ill children for the last 15 years in a Paediatric Intensive Care Unit. He has been used to winning the survival battle 9 times out of 10. This is an extract of a longer article of his reflections during COVID-19 which is well worth a read.
Every death affects us but we are proficient at facilitating a good death for those that we can’t save; that is our bread and butter. Loved ones around, analgesia, sedation, memory boxes, prayers, christenings, readings, singing, the lot. A good death is paramount for patients and their families, but don’t underestimate its importance to healthcare staff.
Overnight we became an adult ICU staffed with healthcare providers trained to work exclusively with children. Working all day in PPE is sweaty, uncomfortable business. Human interaction is different. We can’t read faces any more; we can’t see the smiles, the winks, the frowns each of us wears; it’s remarkable, in retrospect, how much we rely on these subtleties to communicate with each other on the ICU. Non-verbal communication can signal most things, worry, elation, relief, the works. The job is much harder without it.
A tsunami of COVID-19 admissions hits and the comfort of our 9-out-of-10 survival rate in children is gone, we are looking at survival rates of 5-out-of-10 on a good day. Days away from my family morph into weeks; I lie in a sterile hospital room with no windows.
As the deaths mount, you realize the solace of a good death cannot be taken for granted. We can “deal” with the high mortality rates, internalize it, brush it under the carpet; use coping strategies we’ve developed over our years of work on the PICU. What kept us awake at night during the pandemic was moral distress; the thought that somehow we were complicit in allowing these patients to die alone. Alone, without their loved ones being able to say goodbye due to social distancing, visiting restrictions and PPE shortages for non-clinical personnel. Morphine and midazolam are poor substitutes for a human, familial touch.
There had to be a better way. So we reached out to Twitter.
One of the platform’s better uses is linking up healthcare professionals to create a common pool of knowledge. Reinventing the wheel isn’t a priority during a pandemic. The idea was to start compassion ward rounds on the ICU where a doctor alongside a family liaison nurse would videoconference a family member daily, at a predetermined time so they can see and speak to the patient. During the end-of-life families would get the chance to say goodbye remotely. Medical Twitter didn’t disappoint. Doctors, nurses, health professionals from far and wide weighed in within minutes. Soon we had a template for our battle-plan: a patient-directed questionnaire that had already been developed to address the issue of patients dying alone. This could (in part) alleviate COVID-19 related moral distress. We tweaked it to account for subtle cultural nuances and make it more legally robust. It was then presented to the hospital legal ethics committees; given the timeframe, gravity of the situation and people dying alone the questionnaire was ratified within a week.
The questionnaires were used across the hospital for adults with COVID-19 symptoms and allowed us to use their phones or hospital tablets to call their loved ones. It also enabled us to tailor end-of-life care, if necessary, based on their belief system, religion, musical and literary preferences. It wasn’t perfect but it was better than dying alone. Within a week, word spread across the region and various charities donated 250 tablets to the hospital for this purpose alone. To be used to help patients communicate with their families. We translated the questionnaires in a number of languages to ensure there was no discrimination against ethnic minorities; the compassionate revolution was up and running.
A week later Mrs X arrived to our ICU. She had already been hospitalized for a week and gradually deteriorated needing critical care. The consensus was that her chances of survival were bleak. She had limited use of English and hadn’t spoken to her family in 10 days. Imagine the fear these patients experience: fighting for their lives, on a ventilator, on inotropes, unable to understand the spoken language, unable to communicate with us. Terrifying.
Mrs X was one of the first patients to pilot compassion ward rounds. The first time she heard her daughter’s voice over a video call, in her own dialect, there were tears of joy. Not just from Mrs X but everyone else on the unit. From that point on she was galvanized. We mistakenly calculated that Mrs X had odds stacked up against her, the critical care abacus rarely lies; no one told the patient about it.
Feeling her family’s presence was the jolt Mrs X needed. A week on she was wheeled out of ICU to a general ward. On her way out, she summoned the strength to whisper something to me in her own language with tears in her eyes. I can never be sure of what she said but I suspect it was an expression of gratitude. We cannot deny the impact that compassion has on our moral distress; nor can we deny the impact it had in giving this patient her fight to survive back. Compassion rounds had done their job. That night I had no trouble sleeping. The next day, I wanted to be a doctor again.