You wouldn’t believe how many times I have been asked if I am a doctor. Honestly, it never fails that whenever Kate presents at the emergency department or is admitted to hospital that a resident, nurse or attending physician will ask me that question. Truth be told, I find it a bit flattering and justifying. I guess I’ve grabbed on to the medical lingo pretty well. I can give a ‘coles notes’ on a rare form of mitochondrial disease in a succinct 5 minutes, and carefully expand my knowledge into a 2 hour soliloquy when necessary. I can spin and use all the medical terms that have been laid on me in the past several years, having absorbed them out a sense of urgency and absolute responsibility in looking after a medically fragile and medically complex child. The urgency of ‘understanding’ Kate’s disease and being able to speak clearly about it and in a language doctors and nurses would understand and relate to was particularly important when we had no diagnosis and no case coordination. I was it. I was her doctor for all intents and purposes. Yes, I was bringing her to the specialists who had the training, equipment and facility to further help her. But I was the expert on symptom identification and management at home. It was my intuition and gut instinct that had kept her safe and alive this far. I did feel like a doctor in my own right, a PhD in Kate Drury.
I have lived several lives as a mom with a medically complex and fragile child. When I first engaged with the health care system on Kate’s behalf it was with my trusted and well liked family doctor. I had no reason to doubt his advice to me and his impression of Kate, but what I did not appreciate from the outset is that it was I (as patient advocate) who was in charge and not him. I spent several months listening to inappropriate and incorrect advice before I began pushing for a new approach. This shift from a ‘passive’ patient to a proactive mom marked my first transformation brought on by my acute and intense health care experience. I was no longer dealing with the common cold, or a fevered child. I had entered new territory and a new approach was needed. (And to be perfectly honest, it wasn’t a huge leap for me as being proactive was pretty much in my nature).
Being proactive meant I started to ask more questions, and I did not take what I was told medically about Kate at face value. I wanted more information and I wanted explanations to support the medical advice I was being given. I asked for second opinions and I asked for referrals to physician specialists I thought would have more expertise in looking into Kate’s health status. I was polite and I was firm.
Looking back now I understand that my new life as the proactive parent of a patient was an evolution along a continuum of health advocacy and health care team membership. I moved along this continuum as I gained better understanding, awareness of my role in the health care system and with the health care team on behalf of my child, and recognized my need to be engaged fully in my child’s health care team.
As I moved along this continuum I began to keep a notebook and keep detailed notes on my doctor/patient/parent visits. I started an ‘episode log’ and kept track of all of Kate’s episodes – from their onset, to medications given – how many times she vomited – to additional signs or symptoms. I started a comprehensive medical binder that carried important, relevant and current health information regarding my child. I kept this binder up to date and used it often as a resource for sharing information between and among specialists. I started my own medical file at home for Kate. I copied all relevant medical information out of her chart and continue to this day to make requests of medical records at the hospital to keep this chart and information updated. I bought medical texts and have read about physiology, metabolics, genetics and more in order to not be left behind while in detailed medical conferences with Kate’s doctors. I learned the acronyms and short form terminology for urinalysis and bloodwork results so that I understood what Kate’s results meant and could identify any important changes myself. I gained some medical autonomy.
I became an integral part of my child’s medical team and found I was often relied upon to provide insight, evidence, information to her team in order to facilitate her treatment. In the absence of coordinated care this was a significant burden, but in the context of a participatory and teamwork approach to medicine, it is integral and can be powerful.
In recent blog post, Susannah Fox talks about the term “e-patient” to describe people who are engaged in their health. While Susannah’s focus is on how we are engaged from the technological point of tracking our patient data and sharing it with our medical team – ideas that are really exciting – the sparks really flew for me when I read further about the term e-patient. Being an e-patient means (among other things) being part of collaborative teams that include patients making care coordination possible, patients petitioning to have their health care data readily available to them, patients having access to doctors notes directly, and where health care providers view patients as full partners.
e-patient = Engaged Patient
I think I am lucky because I believe my generation, and those that follow don’t feel obliged to follow the former concept of being entirely deferential to the doctor. Instead I ask questions, and I google and research medical terms and conditions. In some instances I have brought forward potential disease diagnosis for my child that have been further explored by the medical team. I am not bold or overbearing with our medical team, but I am forthright, and I am very aware that they are the experts and have decades of medical school and training, I don’t feel awed or passive when speaking with Kate’s doctors. I describe myself as an equal partner in her care with my own specific expertise and ‘credentials’. I am Kate’s mom.
Julie Drury, PhD in Kate Drury