Abstract
Dear Editor:
I was a recent attendee at a pediatric palliative care conference. As I wandered the halls of the beautifully orchestrated murals in the children's hospital, and prepared for the onslaught of intensive training, I read the wall décor from the patients who had both been there and died there. The children, wise beyond their years with the suffering of this life, found hope in the love and presence of their parents, grandparents, siblings, friends, and the many workers there in that place. The doctors and nurses who dedicated much of their days caring for these kids and their families had become in a real sense the extended family.
The death of a child is never acceptable in our lives. To cut short a life just begun, with what we assume should be years ahead, is a raging injustice. I have not lost a child, but have sat with those who are in the midst of this impossible situation, and heard the screaming though sometimes silent cry, “It isn't fair.” Katie's mother would never be the “mother of the bride” like I had been. Mir's mother would never hold her daughter's babies, like I had mine. Justin's mother would never watch him get on the school bus that first day of kindergarten. So many “should have, would haves” now no longer possible.
There was a parent panel at our conference: four parents who had lost their children in years past. Our assignment was to write our question on a note card. There were many questions about what was helpful, how they first heard the prognosis, how they dealt with the grief and what they wish could have been done differently. I wrote the question, “Was there a medical person who had the discussion with you about DNR (do not resuscitate)? What was helpful? What was hurtful?” Knowing this was the most difficult talk I have had with those brave parents who have cared for their dying children at home, I really wanted to know what we could learn from these parents who had “been there.” I saw the moderator at one point look at a note card and place it in his coat pocket. As he read the last question, I realized he was not going to ask my “insensitive” question regarding DNR. At the same time, I was struck with the undeniable truth: it is US—the medical providers—who simply cannot go there. It is our unwillingness to ask that ugly question: would you want to prevent death from occurring if your child's heart or breathing stopped? Would you want the natural progression of this horrendous disease to meet its inevitable end—death—without further intervention? Can we realize that this child can no longer muster the necessary “fight” to win the battle?
I have heard parents say both of these statements, “We did everything we could … ” and “I just wish we hadn't done that last treatment … ” We live in an era of advancing medical technology; this is a known fact. We have children surviving in situations that, just 10 years ago, would have been quickly terminal. We always hope that the slim chance, the 3% or 1%, applies to our case. When the oncology doctor hands out options, and makes the statement “there is a slim chance” all that is really heard is “chance.” We are so careful to avoid being the one who “takes away hope” that we have created a hopeless situation. A situation in which children who are tired, dying, and just want to be comfortable surrounded by loved ones at home, instead are tortured in an acute care setting until the last 24–48 hours, or longer, of their life here on earth.
There is another way. I am the personal observer of parents who listened to their children, and out of utter selfless love allowed them a peaceful loving death in their own rooms, in their own homes, surrounded by loving family caregivers.
What if we, the people who have watched the suffering of these children whose silent wishes are often never heard in the flurry of “doing” for them, were able to truly advocate? The parent, we are constantly reminded, is the expert in their child's care. But what if we can empathetically and bravely speak when a child does not get to be heard?
Impossible to imagine, having to sign a form that says “do not resuscitate” my child, yet shouldn't it be more impossible to shove a tube down their throat, continue the thousands of needle pricks, and inject multiple doses of toxic chemicals in the hope that those final days can be prolonged? At what point are we as medical professionals, who understand what it means to keep a child in the hospital and continue to “treat,” responsible for not shouting from the rooftops, “Ashley wants to go home, she wants to never come back here, she wants to be done and have you, her parents, tell her it is okay to rest from the long ordeal?”
Like all the other discussions, with all the other age groups, I see the pain that is caused when asking a loved one, should their heart or breathing stop, what would you want to do? Yet my 12-year-old patient every week acts out “dying” in his coffin as a vampire, dying in space as an alien, dying in the pirate battles over flaming seas. I am aware each week that he is practicing for his own personal event, of which we do not speak but of which he is acutely aware. If he is able to accept his internal knowing that the remainder of his life is short, that he in fact is dying, why can't the rest of us?
Parents are the experts where their children are concerned. They know them and love them like no medical professional does, regardless of how empathetic or caring we may be. But we know medicine and as the professionals have watched countless examples of extra days, weeks, months added to a child's life that were filled with suffering because “we had to do everything we could.” There is no “had to,” but a choice, and many choices, made along the way. We must listen to them, support them, and allow them the grace of a comfortable death minus the extravagant “doing” of a team of medical experts who cannot ask the question “if your child's heart or breathing should stop … ” We owe it to the children.