The world has changed much in the last 30 years with globalization and the Internet. Medical technology has advanced; extracorporeal organ support and transplantation have changed critical care. Societal values toward children with multiple problems and challenges (previously termed disabilities) have also changed, especially in high-income countries. I have worked in a single pediatric/cardiac ICU for 30 years, and I believe my personal beliefs and values in relation to children with complex care needs as an outcome of, or reason for, admission to ICU and also my personal beliefs and values in relation to “death in ICU” have not changed. However, my unit’s behaviors and practices have changed in response to changing patient demographics, societal, and cultural values. Over this time, more children have received repeated admission to my ICU (11% as compared with 31%). More children have had moderate-severe disability at long-term follow-up, 8.4% as compared with 17.9%, and mortality has decreased from 11.0% to 4.8%. So the combination of “bad outcome” has increased from 19.4% to 22.7% of patients. These data were published in Pediatric Critical Care Medicine in 2010 and compared the long-term outcome (survival and quality of life) of children admitted to PICU in 1982 and 2005/6 (1).
Another study in my unit reviewing deaths in the PICU itself, over an 11-year period from 2005 to 2015 with 15,917 patients and 535 deaths, revealed a mortality rate that fell from 4.2% to 2.7% (S. Brooker, personal communication, 2017). Death occurred in three main ways: withdrawal of life-sustaining treatment (WLST) ~70%, limitation of life-sustaining treatment (LLST) ~8%, and failed resuscitation ~22%; the proportions were not substantially different over time. WLST was not different in children with disability as compared with previously normal or previously functionally normal children, but LLST dramatically increased in children with long-term mild, moderate, or severe disability. Families who live with their child’s problems every day are often balanced in what treatments should or should not be offered but find it equally difficult to stop treatments that have been already commenced, as do parents of children without disability. Interestingly, this is similar to many orthodox religious views.
I find that potential end-of-life (EOL) conversations with families are often done in two very different situations; the child and family are well known to me or I am meeting them for the first time. When I enter the meeting room, I usually do not know what is going to happen, nor do I have a fixed view of what should happen. In both situations, I begin by asking the family to tell me how they see the situation and then follow on. I believe parents need the facts presented in an objective, honest, and clear way; also the facts must be stated in plain language, as well as the implication for their child and future likely outcome. Medicalizing terminology reflects the discomfort of the individual doctor and will cause discomfort and uncertainty to most families. Concepts such as “protecting the parents by stating that it’s a medical decision” or “giving false hope” are naive, dishonest, and inappropriate. Parents feel responsible for their children and usually make the final decision about EOL (unless guardianship orders etc. are in place). I follow the parents’ wishes; even in situations where I disagree, I avoid repeated attempts to persuade the family to a different course of action as I feel this is counterproductive and will create animosity and conflict.
When these EOL conversations occur with other non-ICU clinicians involved with the family, I find it best to separate the decision to cease treatment (and have the non-ICU clinicians involved in that process), with the actual mechanism of withdrawal (and the non-ICU clinicians are not involved in these conversations). Also, it is increasingly important to understand that the family may deal with death in different ways (religious, cultural) and understanding and respecting their views is essential… Pacific Islanders may sing at the time of death to escort the child’s soul to heaven; some Chinese cultures will hide the discussions from the patient; some families will wail and prostrate themselves on the floor while others show little emotion. There is no correct response!
During EOL conversations, predictions of long-term neuro-developmental and functional outcome should be given; although some minor variation from the prediction is likely, there is unlikely to be a major variation that would alter the family’s decision (whatever that may be). Health professionals often place their own values into the family meetings; the patient is not my child and my values don’t matter. I should act in the best interest of the patient and the family and respect their decision, even when I disagree with it. Over the last 10 years or so, I find I am being increasingly challenged by statements during these EOL meetings. Below are quotes from parents during conversations about possible limitation or withdrawal of treatment
“I don’t do stupid”…….. Mother who was a general practitioner
“Every time you change that syringe the child’s heart rate and blood pressure fall…you don’t have to be so efficient”… Father who was a Rabbi
“We do not accept she is dead and want to go home” Saudi parents studying in Australia, whose child fulfilled criteria for brain death and was on a respirator.
All these above statements reflect the pressure and internal conflict that these families undergo in trying to make the best decision for them, their child and their family as well as being consistent with their own religious, cultural, or societal values.
These days, I find that I receive more “thank you cards/e-mails” from families in whom I have withdrawn treatment and allowed a natural, comfortable death to occur than from those children in whom ICU has saved their life.
“During H’s last few days I wondered whether P and J fully comprehended the options before them. I wondered if they might not have understood the potential for more interventions and longer term hospital care giving them more time with their son. Albeit their son with an undiagnosed terminal metabolic disease. It was not until H’s funeral that I saw the clarity with which his parent’s agreed”….. Uncle who was a specialist in intensive care medicine and was uncertain about the decision to cease active treatment in his nephew
“We were able to grant him a merciful death, which was our last gift to our son, for him….” Father/Mother who were academics
Doing my best for my patient and their families, all the time is a concept that also allows me to engage and carry out EOL conversations and enact what the family feel is in their child’s best interests. Engaging in repeated attempts to “force the family” to change their mind or conflict merely torments and angers the family; common sense will usually prevail when patience, respect, and kindness are given to the family. I personally have never advocated legal action nor stopped communicating with a family during EOL conversations; remember a conversation involves listening not just talking.