My MS doctor said the most important words any doctor can and should say to a patient. “I will prescribe things based on how I know you as a patient, not based on a number.” He was referring to my age, which is 74. I have lived over forty years with MS. I asked the diagnosing doctor if there was anything I couldn’t or shouldn’t do. He told me to do whatever I could for as long as I could. Over the years, I transitioned from outdoor running to the treadmill, stair stepper, and the swimming pool to maintain my health and mobility. My MS doctor believes this “work” I have done to stay well has kept me out of a wheelchair. Because of me doing this “work,” if a drug for progressive or smoldering (which I prefer as it sounds alluring) MS is approved by the FDA as expected, he will prescribe it as he knows quality of life is essential to me. Which leads me to the purpose of this post.
As the debate about health care subsidies continues, I suggest it’s time to redirect the goals of medicine. Decades ago, Dr. Kenneth Cooper posited that it was easier to maintain health than regain it after it was compromised. Health maintenance is cheaper. A decades old study, done when Mrs. Clinton was advocating for affordable care, demonstrated that. Sadly, the profiteering business model of medicine seems disinclined to act accordingly. If a person is diabetic, is it not more cost effective to provide drugs, education, and rewards for health maintenance rather than treating heart disease, vascular disease, retinopathy related to diabetes. Isn’t pre-natal care cheaper than intervening for a woman who has had no prenatal care and shows up at the ER in crisis? Isn’t it cheaper to subsidize health maintenance versus acute tertiary intervention? Doesn’t it make sense, not cents, to make drugs affordable so everyone can maintain their quality of life? When I retired, after forty years as a bedside nurse, I found my MS drug unaffordable, especially when financial advisors emphasized “Plan to make your money last.” Did retirement negate the importance of my quality of life? We live surrounded by wealth and abundance. Isn’t this country wealthy enough to cover the health maintenance, the quality of life of every person living in it? May Congress see the light.
Who should be driving this bus?
On a Wednesday several years ago, I underwent a Moh’s procedure for a basal cell carcinoma along the crease on the side of my nose. I went in to my dermatologist’s office expecting the result to be a spot the size of a standard pencil eraser head. After the procedure, the doctor’s assistant packed my nose with a mound of gauze, instructed me not to take it off for twenty four hours, and scheduled me to meet with a plastic surgeon on Friday. Being a nurse, I had to see what required such a dressing. I pulled back the tape. My husband had no idea what I was doing. I screamed and started to cry. He ran into the bathroom fearing something horrible had happened. It had. I looked into the mirror and found an excavation that covered two-thirds of one side of my nose. It leaked serous red drainage and I imagined one good sneeze would blow half my nose wide open. I re-taped the bandage and cried some more. Nothing and no one prepared me for the end result of this “simple” office procedure.
I met with the plastic surgeon on Friday. He didn’t have a cosmetic practice. He limited his work to reconstructive surgery for cancer patients. When he removed my dressing, he didn’t flinch, but he did schedule me for emergency surgery on Saturday. I went through my pre-op work up and went home. Let me say in all honesty, I can’t sit still. I expend nervous energy through motion, the treadmill, the elliptical machine, or the recumbent bike. Thoughts of equipment acquired MRSA paralyzed me and locked me inside my house climbing the walls.
Then I received a call from the plastic surgeon’s office. My insurance company would not authorize my procedure. I felt the same devastation I experienced the first time I saw the hole in my nose. The office manager gave me a contact number at the insurance company and suggested I call and talk to the nurse. I live in CST. The call went to a location in EST. I spoke to a nurse at the end of her day. She repeated the denial with scripted kindness. “I want to know who else I can speak to. You. Have. Not. Seen. This.” My voice turned shrill. I cried. She told me a doctor made the final decision. Out of pity, or perhaps because I was a nurse, the voice at the end of the phone gave me the number of the physician deciding the fate of my face.
CST-4 p.m. EST-5 p.m. An M.D. ready for the week-end. I explained my situation, explained the high-risk-of-splash area in which I worked, a CVICU, explained how my level of physical activity correlated with my quality of life.
“We’re not approving your procedure.”
“You haven’t even seen it. How can you decide it when you haven’t even seen it?” He was trained to respond, not react. I hung up the phone, mouth dry, my reservoir for tears empty.
My husband took pictures from several angles. I wrote an appeal. We decided if we had to we would pay for the emergency surgery.
Jump forward to 2013. Last week-end, a general surgeon I worked with for over thirty years vented to me about the state of health care. A family member, who seemed to think she earned her medical degree trolling the Internet, challenged his prescription of Reglan to prevent her mother from developing a sluggish bowel. She listed her concerns based on whatever site she had visited. The doctor calmly discussed the benefits of avoiding a bowel obstruction versus the risk of the drug side effects. “If she develops them, we can stop the drug.”
He went on to tell me how recently he found a printed form on one of his post-op patient’s charts asking him to justify his order for I & O (intake and output). I & O is a basic, easy to access tool for fluid management. His patient fell into the high risk group of geriatrics, with marginal renal function, who had an abdominal procedure which is notorious for causing significant fluid shifts. The rationale for measuring I & O is common sense. Yet someone, somewhere asked this experienced, proficient surgeon to explain his order.
Both of these scenarios raise the question: Who should be driving this bus? When it comes to pre-approval of necessary procedures, can and should these decisions be made without face-to-face contact of some sort? Every case is different. Emergency plastic surgery of the nose is not a cosmetic elective procedure. A career, a healthy lifestyle, the ability to be up close and personal doing a job without offending a client depends on it. My procedure was reconstructive surgery for cancer. Without it I would never have been able to approach a patient again. Dr. 5 p.m. EST didn’t care about that. Do lay people not realize the Internet provides information about care practices in general without consideration of the individual? In the health care system, knowledge is power, but it is not a license to micro-manage and out-guess licensed health care providers. Does asking a practitioner to justify basic orders improve patient care and alter outcomes? I would not want a cab driver to fly a plane on which I was a passenger. I would not want a quarterback to perform my open heart surgery? In the changing world of health care, decision making needs to rest with bedside health care providers, not insurers, Internet educated family members, and not a hollow voice on the end of a phone.