Wednesday, March 16, 2016
Tonight's picture was taken in March of 2005. We took Mattie to Bunnyland at Butler's Orchard in Maryland. Around Easter, this farm has a wonderful spring event, that includes an Easter Egg Hunt. Mattie loved to go and experience the hay rides, the tractors, and collect eggs. It wasn't so much what was in the eggs, since Mattie did not like candy, but it was the process of the hunt!
Quote of the day: Cure sometimes, treat often, and comfort always. ~ Hippocrates
I received an email today from a fellow cancer advocate. What I have come to the conclusion after this exchange is that my fellow advocates (who have personally experienced childhood cancer) do not always understand or appreciate psychosocial issues or support. It is very disheartening for me to know that our Foundation stands behind psychosocial support and services yet many families do not value nor do they feel it is their responsibility to advocate for them. Why? Because we as a society have gotten used to the mantra that childhood cancer is about the medicine, finding cures (a WORD I despise) and developing new biomedical treatments. Naturally Mattie Miracle stands behind that position, but we believe that the medicine and psychosocial care are equally important. You can't do one effectively without having the other in place. They complement each other.
My fellow advocate wrote to me because he did not agree with a psychosocial fact I stated....
"For children and families, treating the pain,
symptoms, and stress of cancer enhances quality of life and is as important as
treating the disease (Institute of Medicine 2015 - Comprehensive Care for
Children with Cancer and Their Families)."
After reading my statement, it caused this advocate said, "Of course it is important to treat the pain and symptoms –
but that is not psychosocial, it is part of treatment for the
disease. Nothing is as important as treating the disease and certainly, the psychological issue of stress does not rise to that level. As far as treating the pain and symptoms of
cancer, that goes beyond psychosocial." In addition, he let me know that he doesn't agree with me that psychosocial care is as important as the medicine.
Clearly there was a lot about his statements that did not resonate with me, and this feeling has lingered all day. First of all, I do not back down from my position. Physical pain in childhood cancer is real and it can produce devastating psychosocial consequences if not managed properly. Physical pain is known to impact quality of life, but we also know that psychosocial care can help mitigate such symptoms. This isn't a Vicki and Peter fireside chat, this is documented in the research. I am not sure how you argue with facts. Also even if the literature wasn't confirming this, we know all too well that psychosocial issues can and DO arise during childhood cancer treatment and the issues can hit critical! Peter and I lived through several psychological crises with Mattie that resulted from the treatment, NOT the other way around. Once you see your 7 year old develop clinical depression, anxiety and symptoms that looked like PTSD, you NEVER forget it. Which is why we created the Foundation to address these issues, to create standards of care so children have access to psychosocial services before they become critical and this impacts medical treatment. To say that these issues aren't as important or worse that psychological issues do not rise to the level of importance as the medicine is a myth and a faulty assumption.
I am happy Mattie Miracle exists to be able to give voice to all the children and families who have been altered and impacted psychosocially by cancer. These voices need to be heard and we can't be intimidated or afraid to share this reality and to advocate for our needs.
Specifically this is what I had to say this morning about the issue......
Beside the fact that the Institute of Medicine acknowledges my statement, pain and symptom management are crucial and are real psychosocial
issues. I refer you to our psychosocial standards of care (#7 anticipatory guidance,
and #13 palliative care). Psychosocial professionals understand the distress associated
with treatment and its side effects (such as physical pain). If this distress isn't
managed then this greatly impacts a child and family's ability to adhere to
medical treatment. You can't talk about the medicine without talking about the
psychosocial needs of the child and family. They go together and greatly
influence one another. Therefore, in our Foundation's opinion and most likely
the field of psycho-oncology...... it is definitely as important to address the
psychosocial needs as well as the medical ones. It is impossible not to address
psychosocial issues when a child is sick. They pop up on a daily and sometimes
hourly basis!
Pain is NOT just about end of life issues. Some cancers,
like Mattie's (osteosarcoma) for example provide EXCRUCIATING pain! Because pain
wasn't managed well in his case (like many other children) it sets up a VERY bad
psychosocial cycle of fear, anxiety, and depression. All of which compromised
how doctors could interact with Mattie, his compliance to take scans (and you
know if scans are delayed so is treatment), and when in pain there is NO
quality of life (no playing, no interacting with others, not functioning independently,
and less likely to comply with medical treatment because the child knows it produces more painful side effects). Addressing quality of life issues are
vital for our children and let's not forget the Hippocratic oath which
addresses CURE sometimes, CARE often, and COMFORT always. In medicine we CAN
NOT keep compartmentalizing these issues especially when the data and our own
personal experiences tell us otherwise.
In addition, the whole palliative care field is based on the
notion of supporting children and families in pain (the actual symptoms!) to
improve their quality of life. Many of the professionals within a palliative
care team are psychosocial providers. Pain and symptoms trigger psychosocial
issues. In addition, being a person who also deals with chronic pain, I know
FULL well that when in pain (the pain itself) life looks pretty hopeless and it
impacts what I physically and can mentally focus on. So I am definitely talking
about both the pain and also the psychosocial impact of pain.
I wholeheartedly believe that medicine and psychosocial care
are equally important. I have seen first hand in numerous children, that if
psychosocial issues are not addressed, then the medicine is NOT as effective.
If we do not address the pain and symptoms, then it will be impossible to focus
on medical care. I do not like the word CURE. Since in cancer it doesn't exist.
Mattie's oncologist told me a long time ago to change my lexicon because once
you have cancer, it is part of your life. You may have no evidence of disease
but that is as good as it gets (which is also a psychosocial issue to manage).
So getting to your point, I believe managing psychosocial concerns are equally
as important as treating the disease. You can't talk about one without
addressing the other. It isn't an either or philosophy in order to achieve
effective care. Again, I refer you to the palliative care standard which
clearly shows the importance of comprehensive care that needs to be supplied
across the disease trajectory.
I believe every palliative care professional would stand behind what I am
saying. Their whole philosophy according to the World Health Organization is
that Palliative care is an approach that improves the quality of life of
patients and their families facing the problem associated with life-threatening
illness, through the prevention and relief of suffering by means of early
identification and impeccable assessment and treatment of pain and other problems,
physical, psychosocial and spiritual.
