Then: July 1987, 17 deaths during my first month at SickKids: three were diaphragmatic hernias, three motor vehicle accidents trauma, three postcardiac surgery, two failed liver transplants, two had inoperable brain tumors. There was also an inoperable sarcoma, an asthmatic, a drowning, and a H Flu Meningitis. Seven of these children were brain dead. None had prolonged resuscitation. Ten were declared dead within 48 hours following ICU admission, four more died in the 3–4 day window, and the remaining three were dead at 9, 11, and 18 days, respectively, after admission. The annual mortality rate for 1987/1988 was 11.7%.
Now: July 2017, 30 years, 53,000 admissions and 3,104 deaths later: 16 deaths in 3 months (April, May, and June): seven out of hospital cardiac arrests (all prolonged resuscitation [> 30 min] and > 4 doses of epinephrine), four oncology patients (five bone marrow transplants, one double lung, and a liver transplant between them), one head injury with decompressive craniectomy; an infant with surfactant deficiency listed for lung transplant, and an infant with an inborn error of metabolism listed for liver transplant. A number of these patients had previously received treatment in our ICU and were readmitted from either the wards or from home. Length of stay prior to death is significantly longer now than 30 years prior (range, 3–214 d; only three patients died in the first 10 days). The annual mortality rate for 2016/2017 was 3.5%.
WHAT HAS CHANGED?
In our ICU, survival is much improved. In a unit that has nearly doubled in capacity (both beds and the number of admissions), the absolute number of deaths in the ICU has halved from more than 150 to less than 70 per year over the 3 decades.
How children die has changed. It is increasingly uncommon for a child to die from the primary insult and the time to death is increasing. In the 1980s, death was often uncomplicated and dying was quick. Death was an acceptable outcome, not a failure. Death was the other side of a crisp, clear, dark line. Now, death lies somewhere between what we can and what we should do. Into this murky zone falls the process of dying.
With public health initiatives, our ICU population also continues to change. Vaccinations have nearly eradicated many of the primary infections we used to see, and sepsis is increasingly a problem in children with chronic conditions. Regulated temperatures in hot water tanks have decreased immersion burns and fenced swimming pools have reduced pool drowning. Seat belts and helmets have made driving, cycling, and skiing safer. What we have done is generate a new and growing population of kids who have survived their initial illness or accident and are now left with complex chronic and life-limiting conditions, often dependent on technology. Many of these patients require multiple readmissions to the ICU for ventilator support, seizure control, or sepsis management. On any given day, our census reflects that a substantial number (often more than 50%) of our admitted patients are children from this cohort.
Our teams have changed. In 1987, we had a team of six fellows and four staff physicians for the 1,100 annual admissions. Today, we have 22 fellows and 17 staff physicians for 2,200 patients. This increase in people has diluted clinical exposure, dispersed knowledge, and fragmented conversations. Into this mix, add consultant teams who are increasingly organ or disease specific in their interest and knowledge, making it difficult to view the disease in the context of the whole child. Decision making with so many people and opinions makes reaching consensus a challenge.
How we care for our patients has changed. We have learned that less may be more and that striving to normalize physiology may be harmful. We ventilate with lower tidal volumes and are permissive with hypercapnia and hypoxia; we use noninvasive ventilation when possible and noninvasive monitoring increasingly; we tolerate a lower hemoglobin and try to neither overfeed nor over sedate our patients. We limit drugs that may do harm and remove cannulas and catheters as soon as we can. As we support our critically ill patients, our goals are balancing aggressive intervention and harm reduction.
Despite a better understanding and translation of the pathobiology of disease from the bench into the clinical domain, we have made very few pharmacologic advances of significance in the last few decades. Many new drugs have been tested. None have fulfilled expectations. Huge advances in technology have resulted in smaller, more sensitive supportive systems and more accurate monitoring. What we are continuing to learn is when best to apply (or not apply) these technological systems and how to interpret and respond to the explosive amount of information and data they provide.
This environment of sophisticated high tech is promoted as a place where miracles happen and, in parent’s eyes, they often do. This drives expectations higher than ever before in an overly optimistic population, an effect that is amplified by social and mainstream media.
Although the application of new technologies and understanding of disease has changed the journey to death, has our understanding of family concepts of death and dying kept up? Further, have we adapted our verbiage such that families feel connected and respected? I don’t know.
My approach to speaking with families has matured over time. I have learned that listening is more important than speaking. Subjective values about life and death vary widely with the broad range of cultural, religious, language, and belief systems found at SickKids in Toronto, Canada. Listening and learning give me insight into what is valuable and important to the family and has taught me to not impose my values on them.
When I do speak with families, I try to demedicalize my language and strive for simplicity. I use words that are unambiguous (e.g., dead is dead; “passing” has many meanings) and sentences that are short and clear. I do not say “I understand.” How can I? I do try and translate my empathy into compassion. I am mindful (cognizant) that the impact of my words may last a lifetime.
When it comes to life and death, I am cautious not to ask a family what they want me to do for their child. As a parent myself, I could not fathom being asked to choose to end my child’s life. (Some families may want to make this choice; in my experience, the overwhelming majority of families do not).
I do try to establish a common ground on what is in the best interest of their child, with comfort, dignity, and respect being key. Best interest (as difficult as that may be to determine), not outcome, is central to our discussion. I try to help parents separate their own desire for a healthy happy child, from what is the right thing to do for their child. Together we acknowledge that death cannot always be avoided and can sometimes be the better of the very bad options.
In the awkward silence that follows, I wait and listen for questions.
Later, I ponder on the implications of our work on the future life and well-being of the child—both the joy of parents taking their child home, regardless of the extent of disability, and all the suffering for the child and the family that may be associated with our heroic attempts to save life at all costs—whatever it takes!