My Journey: Pediatric Hospice Care

Written by Dianne Gray for the Louisiana-Mississippi Hospice and Palliative Care Organization Journal

Last week, I read again Viktor Frankl's epic book Man's Search for Meaning and was reminded of a beautiful quote that holds significant meaning in my life.

The first is, "everything can be taken from a man but one thing: the last of human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way."

I originally looked to Frankl's work in 1995 when my happy, seemingly healthy four-year-old son was diagnosed with an incurable neurodegenerative brain disorder.

The messages in Man's Search For Meaning helped me as I tried to find balance in a world turned upside down. My life had become a series of benchmarks based upon my son's physical wellness or lack thereof.

"Can he still get his hand to his mouth," our doctor would ask about my six year-old son, with as much compassion as concern in his voice.

Over a five-year span, I watched Austin slowly stop walking, talking, and eating by his own hand. By age nine, he ceased being able to control movement in his legs and arms, while the disease process seemingly cruelly or maybe kindly, left his cognitive abilities intact.

We were all in shock. I kept hearing "children aren't supposed to die," from people who truly cared for us. Our community was upended that young Austin Gray was going to die.

People showered us with prayer and acts of kindness. Yet, we still felt extraordinarily alone in the our plight, especially during Austin's bouts with excruciating pain, which is why I finally made a call I had (out of fear) postponed for years. I called our area hospice and palliative care program for help.

Like thousands of other people, I felt that calling for hospice and palliative care assistance meant that I was giving up on my child, myself, and my faith in God's ability to perform a miracle.

I could not have been more wrong.

With our hospice and palliative care team's help, I grew to understand that while care was tailored for our family's very specific needs, I was a now part of a larger "community" of parents focused on providing care 24/7 for their own seriously ill children. In fact, I learned that I was parenting one of one million children in the US, categorized as being seriously ill or dying.

The numbers astounded me. Our family was no longer alone in the greater world and THAT was of more significance than I can possibly share with you here.

Our professional care providers began to share with me information about organizations such as National Organization of Rare Disease, and others. As I reached out for resources, new friendships were borne, as much out of shared fear as shared compassion. As families, we began to network, caring about not only our own children, but each other's, as well.

We chatted openly about realizing the purity (and exhaustion) of living life on the edge of death. We were scared out of our minds, if in fact, not losing our minds altogether...

But at least we were no longer alone on that very dark and scary road of life called: "Parenting a seriously ill child."

My new network of parents/ friends also discussed how refreshing it was that our pediatric palliative care providers asked our opinions and were genuinely concerned about how we were faring emotionally and physically. All of us concurred that pediatric palliative care clinicians treated us as teammates, which made us feel extraordinarily supported and respected. I had truthfully not encountered this before in visits with any of my own doctors. There is a huge difference in being talked "at" versus being spoken "with".

This team of clinicians made it clear that we had a shared goal of keeping my family free from suffering when possible, be it emotional, physical or spiritual and that messaging stayed consistent for all five years of our care.

Pediatric hospice and palliative providers are, I'm convinced, God's very special "angels" here on earth.

Why do I say this? Remember the above quote by Frankl: "Everything can be taken from a man but one thing: the last of human freedoms - to choose one's attitude in any given set of circumstances, to choose one's own way."

Our providers, as intelligent and dedicated as they were could not change the outcome of Austin's disease process and he did indeed, die at the age of 14.

Yet what they did do for me was to remind me through psychosocial care and bereavement care, that life is about love, compassion and things much bigger than disease and death.

Since Austin's passing in 2005, our hospice and palliative care team has committed to the formation of a more robust pediatric palliative care program. You see, Austin's case, our case, was one of the first pediatric cases they had encountered. While things were not always perfect (what end of life situation is), they provided care for us when they had a choice not to.

Can it be scary to provide care for seriously ill children? You bet. Can it be expensive? Absolutely. Yet now, more than ever, there is an extraordinary network of support to help you care for these seriously ill children; and much of it is free and readily available. If you continue reading through this edition of LMHPCO's journal, you’ll see my list of links and resources that can help you further your existing programs or even get started in providing pediatric palliative care for seriously ill children, who live right in your own backyard.

None of us can change the outcome for all seriously ill children, but isn't it time we answer the call and "change ourselves" by doing the best we can to provide care for all patients, regardless of age?

If you were able to ask Austin and the approximately one million children in this country now labeled "seriously ill," I assure you they would cheer you and say, "Yes!"