The experience of chronic illness is often a fraught and confusing one. For patients with multiple conditions or specialists, binders of personal healthcare information can become the norm. Most chronically ill patients are intimately familiar with the experience of explaining themselves over and over again. Limited access is one of the most significant problems in receiving adequate care, both in appointments available and accessible local clinics. Rare conditions and complex care concerns exacerbate this challenge. Leveraging time with your doctor then becomes paramount to making well-informed decisions for both provider and patient. How, then, is a patient supposed to make the best decisions regarding their care, especially when their doctors may not know all of their medical information?
Informed consent is held as the highest standard of medical decision-making. A patient’s ability to understand relevant information and treatment implications while receiving this information accurately and sensitively is paramount to successful treatment. However, it cannot be the end of the discussion for treatment decisions.
Effective decision-making must include active collaboration with a healthcare provider. It is not enough to share information and hope that a patient will choose the correct treatment. Feedback and peer review are considered the cornerstones to scientific advancement, but patients are often excluded from contributing their own experiences in diagnostic appointments. To this end, consistent care is a must. If a patient must review their entire healthcare history every time, they will never have the opportunity to voice concerns or provide the necessary feedback for successful medical care.
This is not to say that a patient shouldn’t search for doctors who work well with them, although “doctor shopping” is often seen negatively by medical providers. ACP Decisions, a non-profit dedicated to patient-centered care planning, says that collaboration and addressing patient values are essential to successful diagnosis and care. Once a patient has found such a doctor, though, maintaining regular contact and communication is vital to receiving the best care possible.