Our childhood and teenage years are meant to be the best years of our life. Or so we are told—unburdened by responsibility and empowered by fearlessness, we explore all the world has to offer, taking it in through all our senses for the first time. We live in the present. The future can wait.
But when we talk about young people who have a terminal illness, we are forced to reconsider. Faced with the devastating, perplexing incongruity between a young patient’s innocence and the stark reality of death, we falter. How is this fair? How are we meant to respond to this?
“By the time you get to the palliative stage, the outcome is, unfortunately, certain,” says Jason*, a Sydney-based paediatrician. At that stage, the medical team’s focus shifts from prolonging life to “making the patient comfortable”. That approach is unique among medical specialisations, and one that families often struggle with, mistaking it for giving up on their child’s chance for survival.
“There’s some [parents] that are still begging, negotiating with us, asking ‘Can’t you do more?’ It’s heartbreaking,” Jason admits. “But you just try and answer as many of their questions as possible without giving them false hope.”
We form a particular image of the ‘sick kid’, similar to that portrayed in the media and through charity campaigns: helpless, precious, bedridden, pitied. It’s an image primarily framed around their illness, rather than their youth; an image of the potential which has and will be ripped away from them, rather than their individual potential for growth and exploration now.
I asked Jason what the word “comfortable” means in this difficult context. Often, “it just means being pain-free,” he replies. When pain is a constant physical reminder of the threat of this enigmatic illness, being stripped of pain can be liberating. Your mind goes elsewhere. For a brief moment, you’re able to dream of things outside your present reality, maybe even getting to experience “a comfortable day, if not strictly normal.”
In Jason’s experience, and that of many other paediatricians, that sense of stability and comfort is what their young patients wish for the most while in the middle of this confronting process.
To them, the best days or years of their life are ones which are strikingly normal. Going down to the shops, meeting up with friends, sleeping in their own room.
Transformative movements in end-of-life care are being spearheaded most notably by BJ Miller, a physician and triple amputee who formerly ran Zen Hospice in San Francisco. Zen Hospice had the appearance of a New York townhouse, much more homely than the sanitised pale halls of a hospital or aged care facility. Residents could come and go as they pleased, supported by a squadron of medical staff, social workers and volunteers who connected with residents. Zen Hospice has closed its doors, but Miller remains active in public life, advocating for innovative models of care which enable people from diverse walks of life to reclaim death as a personal, rather than medical, experience in which the patient retains their agency.
Miller’s philosophy of care draws on Atul Gawande’s Being Mortal, about how a medical practitioner’s job is more than to ensure survival. “It is to enable wellbeing. And well-being is about the reasons one wishes to be alive.”
The question, then, is not how we should prepare for death, but how we can live fully until our final moments.
It should be a priority that young people with a terminal illness, in addition to world-class medical treatment, are afforded psychological and emotional support so they can have a chance to construct an identity separate to their illness.
Their representation should acknowledge the breadth of their experiences, ordinary and extraordinary.
When we consider how very normal the desires of young patients in palliative care are, and how we can easily fulfil them with a small shift in mindset, we come one step closer to enabling sick kids to experience what are supposed to be the best years of their life, to provide moments which are dignified and beautiful in their simplicity.