As I had been lectured to by a physician about the dangers of morphine use in my child, I agonised over allowing its administration, which only prolonged my son’s suffering. It is one of my biggest regrets upon looking back on Austin’s time here on earth.
A lack of education on the positive benefits of morphine actually increased the time of his suffering. It’s still hard to digest. When Austin received morphine he did not stop breathing, die, or lose his personality as I had feared.
Instead, he was able to regain some of the weight he had lost during his bouts with dystonia and spasticity and could enjoy life within reason.
He could even smile again, something that I had not seen in a full month of his suffering in the hospital.
He died at age 14, but not before enduring other periods of time dealing with horrific spasms.
Austin’s pain became unmanageable in February 2005 and I had to make the painful decision to withdraw nutrition and hydration in order to end his horrible suffering, as there was no cure for the disease he had and no end in sight for the pain.
Our family began like many others: A mom and a dad with hopes, dreams, and visions of a family that included a “happily ever after” ending. For us, that meant that our son and new baby daughter would grow to have fun, healthy, and productive lives.
However, most good storytellers will share with you that even the best stories have intrigue, sadness, and maybe even a surprise or two along the way.
Such as it was with the story of our lives. On January 16, 1991, Austin Thomas Gray came into the world, announcing his presence amidst robust newborn cries.
Big shouldered and blond haired, baby Austin was pronounced “healthy” by the pediatrician. However, that was a short-lived time of life for all of us as Austin was seen falling over and over while trying to learn to walk at 18 months.
After years of diagnostic testing, it was determined that Austin, a beautiful football playing, beach-loving four-year-old, had a rare recessive genetic disorder: neurodegenerative brain iron accumulation.
I remember looking at the photos of kids with the same diagnosis in medical textbooks, thinking “absolutely no way. Austin must have some other form of this disease because he looks nothing like those kids.”
Little did I know that the symptoms the doctors talked about (dystonia and spasticity) would sneak into my son’s body like a thief in the night, robbing his ability to walk, move, talk, and eat over a five-year period.
By age nine, Austin was in excruciating pain from dystonia that seemed to slither like a snake throughout his body.
It would take control of his lower back, legs, and at times his neck, upper body, and jaw. Sometimes, he would clench his teeth so tightly that his molars would crush under the pressure.
It seemed as though Austin’s body was fighting an internal war and often, the only thing he could do was to cry while dystonia raged in the body portion of its choice.
Dystonia became the ‘enemy’ as it slowly caused the loss of the little boy I loved and left in its wake the shell of a 10-year-old child, exhausted from enduring pain that I thought would surely kill him.
Survive he did, however, and all of our roles changed during those years. Once a mom with hopes of doing homework and car-pooling, I became a vigilante, watching every hour of the day, for some sign of the pain that might engulf Austin’s body for hours on end.
As part of an arsenal to fight Austin’s pain, the physicians suggested we try morphine, only after we had tried baclofen, Ativan, valium, phenobarbital, and several other medications to manage the symptoms.
Like most parents, I fought the administration of morphine and methadone, as I had received a lecture from physicians about the dangers of the narcotic and the possible lethal ramifications of using it on my child.
And, like many parents, even the word terrified me. I remember saying to my family and friends: “Morphine, they want to give Austin morphine,” while sobbing on the phone from Austin’s hospital room in southwest Florida.
I was scared for my son’s life, as though allowing the physicians to give him this drug would kill him immediately. Now it’s time for surprise number one: It didn’t.
Morphine when administered properly does not kill people and it didn’t kill Austin.
What morphine did do for Austin was to finally stop his horrid muscle spasms, inverted C posture, and crying that would go on for four to six hours at a time.
Surprise number two: Morphine did not take away Austin’s personality, it brought it back. When Austin suffered in excruciating pain for three years, without morphine, he would whimper and vocalise the most horrible sound, while digging his heels into the bed in pain. I can still hear the sound of his voice if I close my eyes.
With morphine in his protocol of pain medications, Austin would rest and so would I… finally. With rest, he gained weight.
During Austin’s intense bouts of dystonia, he would expend more calories than he could even take in and lost a significant amount of weight.
At one time, he looked like a living skeleton and I remember feeling horrified at the sight of his protruding shoulder blades.
However, once he began to receive morphine regularly, and the dosage was accurate for him (at that time), his weight would increase.
Once comfortable, he would smile and if you ever knew Austin, you would know that he had the most extraordinary, luminous smile. If was as if his happy soul would show on his face!
It was amazing to me that this child who endured such suffering, would laugh, communicate, and even play a practical joke on us, once his pain symptoms had receded.
It’s also bizarre to me how his body that once ravaged itself became at peace once we had his pain under control.
However, like most things in life, when we get comfortable, things change again, and change they did with Austin. We had no warning that events would unfold the way they did in January 2005, just after Austin’s 14th birthday.
A nurse had turned Austin and he let out the most gut-wrenching scream from his bedroom. The how or why of it isn’t important today. What is important is that the event began yet another chapter of our ‘relationship’ with pain and how it can strip one’s entire being down to its very core.
Eight days after Austin was first injured, Austin’s hospice team and national medical experts could not find the source of the pain.
What we did become aware of was that if we fed Austin, via g-tube, we would need to change him, and changing him meant turning him.
Turning him meant increased pain, which needed more pain medication, which caused slowed motility and increased pain in his gastrointestinal system. It was a horrid cycle that we could not get out of.
With hospice’s guidance, we increased every medication we had as part of his pain management regimen, and even added a few we had not tried, all to no avail.
I was left with the most difficult medical ethical dilemma of my life: to end my child’s suffering via the removal of nutrition and hydration with hospice’s support and guidance.
It is a decision I cannot recommend nor discourage. We were at a horrible crossroads and Austin’s pain was unmanageable. Finally, on February 25, 2005, after 18 long days of life without nutrition and with minimal hydration for comfort, Austin passed away peacefully.
What I learned from our years and years of failing (and sometimes succeeding) to keep Austin’s pain at bay was that morphine was not the ‘enemy’, a lack of education on the proper administration and positive side effects of morphine is.
Austin suffered needlessly while I (and his physicians) kept morphine from our list of prescribed medications.
Why did we vacillate over the addition of morphine to the list of medications he was already taking for pain? In my case I can honestly tell you it was out of fear.
As an advocate for pediatric palliative care, I had already spoken with hundreds of other families across the globe.
During those conversations, other parents and physicians had told me that their children or patients had died following that first dose of morphine. Why? In some cases, it was because the child was simply ready to die.
In others, however, it was quietly discussed that the physicians may not have been well trained in the titration/administration of morphine for paediatric cases and possibly administered a first dose that was “too high.” I had also heard the following:
- “It will kill him.” (It didn’t).
- “It will stop his breathing.” (It slowed his breathing to a more relaxed pace, but it did not stop his breathing).
- “It’s addictive.” (In hindsight, he was terminally ill… so is this really a point of concern?).
- “He will overdose.” (It can happen, but doesn’t have to).
- “He will lose his personality.” (Au contraire! It brought back his personality, since he was no longer in excruciating pain).
- “He will sleep all of the time.” (Yes, he did sleep a lot at the beginning of his experience with morphine but I think it was due to being relaxed finally, following exhaustion caused by his bouts with pain).
Now following Austin’s passing, I can tell you I have heard the above from hundreds of families throughout the world.
The conversation on the topic of morphine administration in paediatric end of life care simply has to shift to a more accurate, fact-based conversation that includes the positive benefits.
In closing, I can share this with you. I honestly feel that if I had been better educated early on in the Austin’s medical journey, I may have accepted the addition of morphine to Austin’s pain regimen when we needed it.
Therefore, Austin would have suffered less while I struggled with the acceptance of this opiate as a part of Austin’s healthcare plan.
Morphine brought back my son’s personality. Once he could relax, he would smile at his favourite songs, grin at the jokes in his favourite Timon and Pumbaa movies, and light up at the conversational banter in his room. He gained weight, looked healthier, and his overall energy level returned. Morphine allowed my son to relax enough to die in peace.
You can learn more about the World Hospice and Palliative Care Day campaign online, including key messages and downloadable resources.
This article was originally published as part of the series: Narratives in Pain, Suffering and Relief in the Journal of Pain & Palliative Care Pharmacotherapy. It is republished with permission. To view the original article please visit the journal online