Paradigm Shift in Patient Care: It’s Not What You Think
There is a measurable shift in patient health care, coming from the most unlikely of sources: the patients themselves.
As costs rise, insurance premiums skyrocket (in the U.S.) and all other forms of allopathic medicine follow suit, patients have had to become savvy. The time-constraint imposed on physicians has come at a cost to both the well-being of the patients and the relationship they would otherwise develop in times before. A doctor’s visit is simply not the same as it once was.
Instead the trend happening is patients are now their own advocates for themselves and their loved ones. Many will arrive at their respective appointments ready to have conversations about what they have researched on the latest treatment or the illness itself. Physicians get frustrated at the “Google” patients who arrive in their offices, wanting to dismiss the conversation from the beginning.
In an article published in The Atlantic in 2014 titled “Doctors Tell All – and It’s Bad, writer Meghan O’Rourke describes the 15 years trying to find the answers to her chronic ill health. It took that amount of time before a sympathetic physician did a bit more testing which eventually led to her being diagnosed with Lyme disease.
A slew of books on the demise of medicine in the U.S. and elsewhere have led to patient push-back. There is a movement of sorts for those with illnesses, or perhaps a loved one with an illness, to do their own research and to question the attending physician a bit more than they once might.
What we are seeing in the front lines
When my son was diagnosed with autism in 2000 at the age of 18 months, it came as quite a surprise how ill-prepared the attending physicians were to even discuss what the diagnosis meant. They doled out platitudes like “no hope, no cure, so don’t bother” or “might end up in a group home one day.” Truly it was the lack of information that led me to do the unthinkable…my own research. And by research, I mean looking up medical publications (the same ones the doctors read), attending conferences, seminars and listening to other experts who might provide a clue to what to do to address our son’s underlying immune issues, gastrointestinal dysfunction and related behaviors from his illness.
Truly the best experts were other parents, who were likewise doing research and attending events while simultaneously employing what they learned to treat their child. It was in this dichotomy of no information from traditional medicine, alongside parents looking for answers elsewhere, that gave birth to a trend of parents/patients finding answers outside of the doctor’s office.
By 2003, my son was declared asymptomatic from autism (meaning he recovered) largely due to medical interventions I heard about from other parents. As a result I became the parent who would continue to research, attend conferences and seminars in order to pass along information to the next parent to perhaps spur them to begin the quest for their child too.
Now in 2017, we are educating the doctors on their patients, and even on their child. As a coordinator of a local parent support group, our numbers have been increasing as we gather monthly to discuss ways to help our children or ourselves. The format is simple. It begins with general introductions followed by a brief discussion by a local invited expert who has information the rest of us want to know more about. These kind of discussions are happening all over the U.S. in one format or another.
Interesting enough is how many physicians have asked to be a part of the local informal discussion, which may include no more than a dozen participants. The reputation of the group here in Massachusetts has spread among the local medical community, because of what the experts learn from the parents. As one attending physician told me, he had never heard so much valuable information from a group of doctors, let alone a group of parents. The participants ask for resources, ideas or treatments to address a malady or symptom. They jot down the answers from their fellow participants on notepads provided for them, with the instruction to do further research before embarking down one path or another.
The trend we are seeing on the front lines is parents/patients are hungry for real information. They want answers, something to sink their teeth into. They don’t mind doing the research, implementing diet changes or making appointments. It is way better than doing nothing, they believe, since it gives them a sense of hope to become directly involved in their own care or that of their child’s.
What we are also seeing is the use of social media to begin connecting the dots or find information. Many years ago the forum most commonly used was Yahoo groups. These days you see Facebook pages dedicated to a myriad of disorders. While I embrace the concept of looking outside for more resources, I cringe when I see people posting photos of themselves or of their children to ask for specific medical advice. It’s alarming how far down the rabbit hole we have gone to seek medical advice outside the mainstream, but that is the new reality as the traditional medical model has failed so many.
It is somewhere in this confine that we begin to piece together what is right for us and for our families. What we know for certain is that shaming people away from their pursuit of the answers does not work. So when you see health articles with a sway of condescension in tone, this only fuels the notion that the paradigm shift is happening, and vested interests are concerned.
What’s working?
By far the biggest achievement that has come from the support group(s) is the level of confidence from the participants. They now know they have the ability to find the answers, or at least to ask the right questions that lead to the answers. They realize they are one person away from the next resource that may lead them to better health for themselves or their family member. And some have gone on to have their children recover from autism as well.
Lately our biggest focus has been on genetics and how understanding the methylation cycle gene expression can lead to better treatment decisions. It’s all crazy advanced kind of stuff that comes from these conversations; but then again we already know we are trail blazers. All of the articles coming out on the gut/brain connection were fodder for conversation two decades ago in autism parent groups. We’ve been breathing the science a very long time.
We have also been leading one of the biggest drives in shifting the medical paradigm as we know it. The advances we see these days were often initiated by the “google” patients who dared to ask questions.
Oh, and those platitudes we were told by the doctors on our son’s prognosis? He obliterated them. Instead of a group home he is now attending the University of Rhode Island as a Film Production major. His future is now his own, reminding us why the paradigm shift (in asserting medical decision-making) was crucial…and why it was worth it.
Mary Romaniec is a reporter and recognized authority and speaker on the subject of autism. Her own son’s recovery from autism by the age of 4 has inspired her to take on the role of mentor, writer and speaker. In addition to mentoring hundreds of families around the U.S. and the world she authored the 10 week GFCF diet calendar, which is in wide use in the autism community on various websites and quoted as a valuable tool in Jenny McCarthy’s book, Louder than Words. She has also written other articles on the topics of IEP negotiation, marriage topics and care for the caregiver. Her articles have appeared in Mothering Magazine, Autism/Asperger Digest, Autism Today and Journeys Magazine, Age of Autism, The Autism File, as well as other autism-related websites.
Her book Victory Over Autism, takes the reader through the personal stages parents will experience when their child is first diagnosed with autism; and how to use these stages to catapult to becoming part of the next generation of proactive parents who are making a difference in the well-being of their child and family.
