Move Over! I’m Driving!
Move over, doctors! I’m driving! Until a few years ago, I was a backseat driver when it came to my medical care. I wasn’t passive, but I clearly let my doctors take the lead. Dr. G., my family medicine doctor, is amazing. He is well-informed, attentive, kind, thorough, and utterly overworked. According to the American Medical Association, the shortage of primary care doctors will be between 17,800 and 48,000 by 2034. This situation is serious because educating a physician takes at least ten years. Meanwhile, current family physicians are taking on more and more patients, and many are retiring. The average family medicine doctor sees about 20 patients daily and spends about 18 minutes with each patient. This time does not include answering patient questions on the patient portal, reviewing test results, or answering phone messages. As with many dedicated physicians, my visits with Dr. G. are usually a little longer so we can cover everything. Like most people with autoimmune disease or other complex systemic conditions, I have a complicated medical picture that includes many specialists and various medications. Specialists look at particular body parts or systems from their expert perspectives, a practice that can offer the best treatment for specific symptoms but doesn’t treat the patient as a whole. It is the job of the primary care physician to put the pieces back together. To make the most of our time, I carefully prepare before my visits with Dr. G. I list new symptoms, diagnoses, drugs, treatment plans, test results from other doctors, and complementary medical therapies I am considering. My patient portal allows me to access information from all providers in one place. Whew, 18 minutes just doesn’t cut it, even when I’m prepared.
The doctor-patient relationship is different in chronic illness than in acute care. Often, with acute illness or injury, there is a beginning and end to the care, and the problem is either fixed or not. Given the shortage of primary care physicians, same-day care is often accessed in an urgent care clinic or emergency department. There is usually a recipe for treating specific short-term medical issues, and the outcome is fairly predictable. Patients decide if they want the treatment or are given a choice of treatments, but the doctor is really the one in the driver’s seat. Complex chronic illnesses make things a little murkier for the doctor and the patient. The prognosis is often uncertain even in well-known diseases, let alone rare ones. Sometimes the treatment suggested by one specialist triggers another facet of the condition, and the patient has to seek care from yet another specialist. Treatments must be changed or tweaked because chronic diseases often progress, and new symptoms arise.
Chronic illnesses are usually life-long, so doctors will come and go. My wonderful Dr. U., one of my specialists, is moving to another state. He was an integral part of my team, and I will miss his insight and care. But, the worst part of the situation is that I’ll have to break in a new doctor. Frequently, the first reaction to my unusually complex medical profile is disbelief and doubt. Then evidence-based practice guidelines for that particular disease are suggested, and a treatment plan is outlined. I know from years of living in this body which therapies have already been tried and didn’t work or aren’t compatible with my other treatment plans. I have to be careful about how I communicate these things to my new doctor so I’m not labeled a problem patient. Modern medicine has made considerable advances in disease treatment but hasn’t figured out how to facilitate communication and collaboration among doctors. Patient portals help, but I typically have to direct my doctors to look at recent test results or visit summaries.
I’ve noticed a dynamic that sometimes develops between my doctors and me, and it has to do with vulnerability. It takes courage to keep seeking treatment when my own knowledge of my body has been written off as hypochondria or depression in the past. It takes most people with an autoimmune disease an average of 4.5 years and four doctors to get a diagnosis, if there is one. I wrote about my journey to diagnosis in a previous blog post. I have sometimes felt reduced to bits and pieces that can be repaired or replaced like a carburetor on a car engine. The human body is extraordinarily fragile, wonderfully resilient, and beautifully complex. While those repairs allow me to function better, they sometimes make me feel unseen as a whole person. My reality of living with chronic illness doesn’t change because one part of me is repaired. There will always be more bodywork to be done, new medications to try, and complications that arise. I can be my own advocate and make good decisions if I remember to look at myself as a whole human being and not as a collection of body parts.
Modern medicine is good at keeping us alive and fixing our bodies. In part, it is surely reductionism that has made advances in treatment possible. It has given doctors many tools to treat conditions that would have been fatal in the past, and life expectancy has dramatically increased in the last century. The explosion of information in the last few decades has made it almost impossible for family doctors to know everything about each new advance in medicine. They have to rely on specialists. This mechanized model of care has given doctors and patients the false sense that all will be well if the accepted standard of care is followed. Anything else is seen as a failure, and doctors have to admit to themselves what they know to be true about the body: it’s more than the sum of its parts. It’s an awesome responsibility to take on the role of healer and be an essential part of the quality of someone’s life. It takes courage to admit that sometimes it’s unclear why a patient doesn’t get better or isn’t cured. It’s even harder to accept that some things can’t be fixed. I suspect that doubt, for a doctor, is both a liability and an asset. Doctors are trained to be decisive, and doubt is often seen as a weakness in the competitive medical school setting. Hesitation isn’t an option in emergencies. Doctors must know exactly what to do, how to do it, and when. This approach saves lives and allows doctors to make life and death decisions. But it doesn’t encourage collaboration with other doctors or patients, which is critical in caring for people with chronic illnesses. Nor does it allow for the nimbleness of care needed in treating a person with systemic issues. The need to be all-knowing leads to patient blaming or dismissing the patient’s body knowledge when the diagnosis isn’t clear or the treatment doesn’t cure the illness.
Patients and doctors need to develop a level of trust between them that honors the roles that each plays in the healing process. They can work together if they remember that medicine is a practice that uses the best science available, but the uniqueness of each person’s body makes even the best plan a good guess. There are doctors out there willing to develop this relationship with their patients, but this takes time, something that is in short supply. I have worked hard to find doctors who are open to my input and who don’t think of me as a problem patient because I ask too many questions, can’t be cured, and encourage collaboration with other doctors. I even have one doctor, Dr. S., who gave me her cell phone number for quick questions so my care with other doctors isn’t delayed while I wait for her answer via the layers in the patient portal or automated phone system. We have worked together for years, and she knows I will not text or call her unless it’s absolutely necessary.
I have to be in the driver’s seat so my care can be as effective as possible. A sense of agency helps me comply with my treatment plan, wade through the insurance bureaucracy, and not feel like a victim of circumstance. I think of Dr. G. as my co-driver or navigator and my specialists as passengers in the back seat of my 1964 Chevy Station wagon. Dr. G. tells me what lies ahead, where to turn, and when obstacles are coming my way. He also helps with routine maintenance and treats minor illnesses before they become serious. Taking the steering wheel doesn’t mean I know more than the doctors, although that is sometimes the case, or that I have the medical expertise to interpret test results or demand the latest drug I’ve seen on TV. It means I know my body better than anyone. I have to ask the right kinds of questions, ask for the right kind of help, and take ownership of the plan. It’s really up to me to guide the course of my care and treatment and ensure I have the best possible outcomes. I have to live in this body, and the stakes are highest for me, not the doctors. Sometimes being the driver is hard to do on my own, so I enlist the help of a close friend or family member.
Was Albert Schweitzer right? Does every patient carry his or her own doctor inside?
