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Growing up in the medical system as the daughter of an eminent clinician-researcher and being an avid reader before my brain injury, I naturally gravitated towards discussing my health issues and probable courses of action with my healthcare practitioners. My long-time GP was used to consulting me before making decisions. His ability to remember what I told him always astounded me. But my father also had a similar memory for his patients and for current research findings because he needed to solve the health difficulties his patients on total parenteral nutrition ran into in the early days and his patients with complex gastrointestinal illnesses today.
They'd both been trained when physiology and anatomy were the foundations of medical knowledge and house calls were the norm. They both read medical journals widely to provide their patients with the best medical care they could. Perhaps that's why they had well-developed memory muscles, a skill so important in medicine back then and more so today with the increasing complexity of managing chronic illnesses and working with patients as equals. Perhaps that's also why they treated their patients as human beings, in a sense like family and not insurance codes.
With my long-time GP, now deceased, I felt secure in the knowledge he’d know what blood tests to order and tell me what to do if abnormal; he wouldn't dismiss me if I disagreed with him; he'd discuss with me why he believed his particular recommendation was the right one and respected my acquired knowledge and self-insights; and he'd send me to the health care providers I needed to see. He was a physician who accepted and respected patient empowerment before that phrase was invented, but at the same time, he took responsibility for guiding and directing my patient care.
Mine and others' traumatic brain injuries did strain his resources, though. Even so, I could still count on him to want to keep abreast of my brain injury treatments, to guide me with other areas of the body, and to tell me how often I needed to see him and what kinds of specialists I should see.
I miss that security.
Kamal Jethwani, MD, MPH and Jodi Sperber, Ph.D., wrote in December 2017 NEJM Catalyst, "Who Gives Us the Right to “Empower” Patients?":
"Giving power to users means that health care providers reduce our own power in the relationship. Are we ready for that? If so, health care organizations and individual providers should consider using words and language more appropriate for our role in the users’ care, such as coach, guide, counselor, or advocate. These words uphold the specialized nature of our expertise, but also equalize the relationship somewhat. We could also consider adopting a more passive persona, to correct the pendulum that is currently swung too much on the other end."
It is one thing to ask for and be treated as an equal in deciding my health care; it's another to have to learn medicine and drive it. The latter is my current situation. And I'm struggling to cope.
Recently, one physician recommended some blood tests for my GP to order. My current GP added on the usual coterie of tests since I haven't had any blood tests in three years. Why haven't I? Because I experienced a scary sensation of falling forever after my last blood test. When I asked my various physicians why that happened, my experience was dismissed as just stress and it would go away. The non-answer was predicated on the ridiculous notion that I had never experienced stress before. Since no physician was willing to think about why that happened and how to mitigate that awful, awful feeling, I avoided blood tests. I could avoid tests because my physicians had become passive personas — not responsible for any part of my health care.
I received my blood lab requisition form and scanned the items checked off. I paused at not-checked-off vitamin B12. Shouldn't I have that tested? I'm a long-time vegetarian. I thought about the effort required to call up my GP's office again, the probability of getting the decision bounced back to me (100 percent), the risk/benefit of ignoring it and worrying about whether it's a hidden factor in some of my worsening problems, the energy required to Google and read up on B12 and vegetarianism. With a brain that resists making decisions, I strived to decide what to do.
Who should have been responsible for making this decision? Who should be responsible for monitoring sources of fatigue beyond my brain injury? No wonder I'm spiritually weary.
Isn't patient empowerment about working in concert with one's physicians, not about making every single medical decision? Isn't it about the physician bringing to the table their expertise and the patient bringing to the table their self- and acquired knowledge and the two working together?
"We would argue that at the most basic level, what providers should do for patients, or health care users (to adopt Neuberger’s term), is satisfy their needs. Although we arguably do a great job today of meeting users’ clinical needs by providing accurate diagnoses and treatment options, we significantly underperform on meeting other social determinants of health, such as education about their conditions, treatment options, social support, or considerations for individual social and cultural norms, abilities, preferences, fears, or attitudes."
The passive persona doesn't meet my clinical needs. The active partner would. I have become solely responsible for my medical care. I asked for the B12 test. Only one problem: does the B12 test alone provide a good picture of my B12 status? I don't know. But driving that conversation with the passive personas is beyond me.
Copyright ©2019 Shireen Anne Jeejeebhoy. May not be reprinted or reposted without permission.
