We chased the small, 5-year-old girl down the hall, our stethoscopes swinging around our necks. She turned and ran as fast as she could to escape, but ended up crashing into a locked door at the end of the pediatric ward. There, she collapsed on the gray linoleum floor as a team of physicians pulled her clothes away to examine her.
Afterward, they hurried off. I lingered to help her get back up.
She had a devastating liver disease, and had received a liver transplant. She had spent much of her life in the hospital. Sadly, she died not long afterward.
But I will never forget her.
I was doing my medical training, working on a pediatric ward, and saw so many children suffer from horrific diseases that lacked effective treatment. Many died. Some understood only partially what was happening to them.
Every year in the United States, some half a million children cope with life-threatening diseases, and more than 50,000 die. Millions more die around the world.
Children younger than 6 years old often do not understand death. They tend to think it is somehow temporary and reversible, like sleep. They may engage in magical thinking, like that they will see everyone they love in heaven.
Palliative care has developed to offer comfort to patients — whether young or old — whose diseases we cannot alleviate or cure. And while we might not be able to save them, we can seek to improve their quality of life, relieve their pain, suffering and distress, support them and their families, and help them cope as best as possible.
Yet many patients and their families — no matter what their age — are unsure whether to accept palliative care. They think it may be best to pursue aggressive interventions that may have limited, if any chance of success — and that may at times cause side effects more painful than those of the illness itself.
Adult patients usually make these decisions for themselves — unless they lack the mental capacity to do so, due to advanced Alzheimer’s or other mental impairments. But children facing severe illness often cannot fully understand the issues involved. And so, their parents must make this excruciating decision.
This is the dilemma that Michelle Moon and Steven Snow have confronted since their daughter, Julianna, was diagnosed with Charcot-Marie-Tooth disease. Julianna is 5 years old, and now, she has told her parents, she would prefer to go to heaven than go back to the hospital.
We physicians try to respect patients’ wishes, while doing good and avoiding harm to patients. Here, the best we can do may be to provide comfort, because Julianna’s doctors apparently say she cannot be cured. Countless patients greatly appreciate such comfort, and it gives them quality time and dignity at the end of their lives.
Of course, the plight of children like Julianna and others is a reminder of the importance not just of investing in palliative care, but of spending on ongoing research aimed at developing effective treatments and even cures. So it is particularly sad that this country has, for example, seen real dollar cuts to the National Institutes of Health.
Some politicians oppose such research centers getting funding increases, suggesting that drug companies alone should pay for research. But historically, vast amounts of the critical initial groundwork for developing new cures was funded by the federal government. And while such research won’t ease the tragic circumstances confronted by many today, it may help prevent many thousands facing them in the future.
In the meantime, Julianna Snow’s family is not alone in having to face a potentially life or death choice. And while their daughter may not fully understand the options, the parents seem determined that their daughter will enjoy the time she has left. That is a courageous decision that may inspire many others as well.
We can all learn from their plight, and what it says not just about those facing tough choices today, but preventing countless others having to face these decisions in future.