My mom died.
Almost three weeks ago, Anita Koerner Adler, nearly 83 years old, moved on, and in doing so, left me both grieving and deeply troubled by the current and future state of US healthcare. Of course, death is no stranger to anyone who has lived a long and productive life, but the years of suffering my mom endured at the end is what deeply troubles me now.
For more than three years, my mom complained of a growing constellation of symptoms, the cause of which sent her to more than a dozen board certified internists and specialists at multiple hospitals countless times for answers. Almost every few months she would return from a doctor visit with yet another oftentimes peculiar (from my neurosurgical perspective) diagnosis, and yet another medication. Yes, she had a primary care doc, two of them in fact, who would spend the requisite ten minute visit, and perhaps a generous extra five or ten minutes if I were in attendance. They “listened” and wrote notes and filled out scripts, before passing Mom on to yet another physician.
Given our current healthcare system, each of these doctors had conscientiously completed their MOC (maintenance of certification), filed the appropriate paperwork in a HIPAA (Health Insurance Portability and Accountability Act) compliant fashion using the latest ICD9 (International Classification of Diseases) coding (before implementing ICD10 codes) and increasingly demonstrating “meaningful” use of their new EMR (electronic medical record) and perhaps meeting some new “quality standard” created by a sundry committees commissioned by CMS (Center for Medicare Services) before ultimately submitting time consuming bills that complied with the most arcane Medicare requirements. Despite following accepted healthcare processes, not one physician seemed motivated to connect all of the (now in retrospect) flashing neon dots to make a proper diagnosis, (or at least refer her to someone who could) even in the face of mom’s obvious relentless deterioration. Heck, maybe she was simply old? In a last ditch effort, and without seeking permission from her medical team, I insisted that mom go to a big time medical center. I dragged dear mom to UPenn, not so much because they had expertise with complex and more obscure diseases, but mostly because I knew that Anita Adler might finally encounter a physician who cared about HER, her medical resident granddaughter, and my progeny, Brit Adler.
Although the holidays and my daughter’s junior status at UPenn compromised the efficiency of the inpatient work up, it took a little over a week to finally diagnose Mom with T-cell lymphoma, an unusual but hardly rare disease. After three years of fruitless, yet very expensive (clearly more than $100,000, if not three times that), outpatient and inpatient medical work-ups from so many faceless specialists, mom and the family could finally put a face on the enemy. As luck would have it, there was a promising new, highly targeted, fairly non-toxic “experimental” therapy for her condition. In the end, it all proved to be a little too late. Less than 6 weeks from first treatment and three weeks after returning to the care of her longstanding and largely anonymous medical team, mom died of presumed sepsis (my diagnosis). Presumably from her doctor’s perspective, another old lady simply died?
As I conduct my post mortem of Anita Adler’s illness, I am haunted by the belief that the only physicians who ever really “cared” about her throughout her three year odyssey were me, her son (and in this case, a worthless neurosurgeon), and her clearly much smarter granddaughter. More importantly, I am forced to conclude that as a result of such careless indifference, my mother (like so many other “moms” out there) suffered needlessly for three years and at great expense to society. In resigning myself to this outcome, I am also forced to conclude that in all likelihood the “system” healthcare towards which our society is currently racing was “accountable” for significantly shortening Anita Adler’s life. As in life, and so now in death, mom teaches me yet again. What I learned in such a personal and painful fashion is that I don’t want a healthcare “system” with elaborate quality checks and processes dreamed up by academic whiz kids from think tanks who have long ago left the trenches of medicine, to direct the care for me or my family. When it comes to protecting my loved ones, as well as myself, from death and disability, I want medical care anchored by “a” physician who cares almost as much about my loved ones as I care about them.
When I am faced with illness, I want for me the very doctor that I always aspired to be to my patients. Truthfully, it is a lot to ask. Because the all-encompassing 24/7 life of such a doctor is intrinsically so difficult, I want to make the rest of my doctor’s life as easy as possible. The doctor I want for me should be an esteemed member of our society with no financial worries whatsoever and should be freed of all mindless clerical tasks and endless quality processes so that my doctor can do what a doctor is suppose to do, truly care for me and protect me from death and disability like he/she would want for themselves and with NO excuses whatsoever; ironically that means “my” doctor may need to increasingly protect me from the “healthcare system” itself, which too often provides neither “health” nor “care.”
Beyond the still raw grief of my mother’s death, seeing firsthand how far away our “system” of healthcare has mindlessly drifted from the idealized physician advocacy I desire (and patients deserve), my sadness is turning to despondence. I now find myself praying that my wish to live and work in a world of medical “care” does not die alongside my mother. Goodbye mom.