The most important medical professional on a patient’s care team is the pediatrician or primary care physician (PCP). The PCP needs to be a strong advocate for the patient and the family, and should be consulted before adding new specialists or making any major medical decisions. In essence, the PCP should serve as the quarterback for your medical team. The PCP should make all referrals, receive a copy of all medical records from every different specialist, and call ahead when the patient is heading to the hospital for treatment. This is true even if the patient’s insurance company does not require the PCP to make referrals.
Having the PCP serve as the quarterback not only helps to ensure that a single medical professional is overseeing the full scope of the patient’s care, but also keeps the
parents, especially the mother, from appearing in the role of the quarterback. Parent-driven medical care and decision-making is a red flag for alleged Medical Child Abuse; as one article from Cleveland Clinic published in the Journal of Pediatrics concluded, mothers who seem overly involved in medical decisions and “doctor shop” by taking their child to multiple specialists without a PCP recommendation spark a concern with physicians. See C. Mash et al., “Development of a Risk-Stratification Tool for Medical Child Abuse in Failure To Thrive,” Pediatrics, Vol. 128 No. 6, at p. e1472 (December 1, 2011). If such decisions are made with and through the PCP, they are much more likely to be accepted by other medical professionals. In addition, PCP involvement for adult patients gives adults added validation and support if they encounter a specialist who believes the symptoms are “all in their head.”
With a disorder as complex as mito, PCPs sometimes become overwhelmed by the amount of new information and are hesitant to manage the patient’s symptoms on their own. it is important to ask your mitochondrial disease specialist to support your PCP through emergency protocols, information on potential treatments for specific symptoms, and availability for consults should an emergency arise. Sharing the Mitochondrial Medicine Societies papers on diagnosis and care can provide strong foundational knowledge for PCPs and non-Mito specialists.
While it is important for the PCP to be actively involved with the treatment and medical decisions made for the patient or child, it is not solely the responsibility of the parent or adult patient to act as the secretary or the mediator to make it happen. If parents or adult patients are having difficulty engaging the PCP, they should consider using a patient advocate from the hospital or from the PCP office. Parents should refrain from calling the PCP day in and day out. For more tips on advocating responsibly, please visit MitoAction’s page on advocating effectively or Jonah & The Whale Foundation’s Advocating Tips page.
If, over time, you are not seeing the PCP step into the role of the quarterback, it might be worth seeking out another practice. Some hospitals have complex care clinics that can be useful for Mito patients who see lots of different specialists. Other primary care practices are adopting the family-centered medical home model, which seeks to provide more patient-focused care. Some practices are simply more responsive and better equipped to handle complex cases. It may take some time and patience to find the PCP that is right for your family.