A response to “The overwhelming reality of primary care: Why doctors still persevere.”
I am a primary care patient in a rural area of a western state, and I have not seen the same physician or other provider more than two or three times in the past 20 years.
I am a primary care patient, and I have 10 minutes to explain my entire medical history, including my neurologic, musculoskeletal, and mental health issues.
I have 10 minutes to share that I was born with arthrogryposis, am in near constant pain, and desperately need physical therapy and massage that I cannot afford.
I have 10 minutes to share that a former primary care physician suggested that my multiple symptoms indicated that I may (probably) have MS and that my multiple MRIs, with and without contrast, show damage from a prior TBI, but the results are inconclusive for MS. I was ordered a lumbar puncture but cannot comply because I have no respite care for my son. As a result, I am formally undiagnosed. If I am undiagnosed, I do not have it, right?
I have 10 minutes to explain that I care full-time for my adult son, who has a severe form of Becker’s muscular dystrophy that more resembles Duchenne’s than Becker’s. He is fully disabled, non-ambulatory, and has social anxiety. He needs more than I can give him mentally or physically, but we persevere to keep him at home.
I have 10 minutes to share that I am now a “wound care specialist” after treating my son’s venous ulcers from edema due to immobility for the last four years. I share that I am paying out of pocket for our supplies, as transportation to a wound care clinic is impossible, and we have used up our home health care visits.
I have 10 minutes to share that I cannot afford the copays for my Cymbalta, Modafinil, Prempro, Tramadol, Meloxicam, or any other prescription medication you might prescribe. When asked why I cannot afford my medication, I have 10 minutes to explain that I make $26,000 caregiving—too much money to qualify for Medicaid—and that my own Medicare premium leaves me with $171 of my own Social Security check. If my state drops the Medicaid-provided consumer-directed personal assistance program that pays me, we will both be in a dire situation. If I did not care for my son, I would be homeless. (My son’s Social Security is $879.00 a month. That does not even cover our grocery/household supply budget. If you are wondering, we pay $1,400 per month for a one-bedroom apartment, most utilities included.)
I have 10 minutes to explain that I am concerned about the 3,000 mg of generic acetaminophen, 2,000 mg of ibuprofen, and 800 mg of caffeine that I take daily in an attempt to manage my many “whack-a-mole” symptoms, including daily headaches, fatigue, and musculoskeletal pain. I share in 10 minutes that I am sensitive to any codeine or codeine compound and choose not to use it, but I am concerned about how to manage increasing pain in the future or even how to afford pain management.
I have 10 minutes to share that I cannot afford the dentist to fill the painful cavity in one of my four remaining teeth. I also have 10 minutes to try to convince you to tell Medicare that my dentures are medically necessary.
I have 10 minutes to share that chronic sinusitis is seriously disrupting my sleep and my life as I try to manage symptoms without making another appointment that I cannot afford to pay for. I have 10 minutes to share my current symptom list, and for the nurse to tell me, “We do not have time for all that—pick one.” (True story.)
I only have 10 minutes.
So, I go online and visit Dr. Google, and in 10 minutes share what I have found. Then, for 10 minutes, I endure the “Who gave you your medical degree?” looks and comments. If I share my medical diary along with my thoughts or opinions, I hear and feel the dismissive attitudes. If I do research or ask my pharmacist and decide that a certain medication is not worth the risk, I am non-compliant. If I disagree with a physician, I am non-compliant. If I am insistent, I am fired as a patient, even if I am right. (Another true story.)
So, I have 10 minutes to share and listen, then go home until I decide in six months or a year to try once again to receive adequate health care.
I have 10 minutes.
I have 10 minutes to see you, the underappreciated backbone of American health care. I see that you want to care. I see that the medical situation in the United States absolutely wears us down and tries to suck out our souls, but I still appreciate that you do care. I appreciate you. I even love you for the work you do. I see you are doing the best you can, but somehow, some way, we have to do better. We must do better!
We need to take health care away from non-practitioners and insurance agencies. We need to return medical care to the control of doctors. We need universal health care for those with special needs who do not qualify for Medicaid, for those times when Medicare will not cover. We need to encourage new providers to commit to more than one year in a rural primary care setting. We need you to care—care enough to fight the soul-sucking system we call “health care.” We need you to have the courage to prescribe what needs to be prescribed. We need you to be able to prescribe and treat ethically without fear of repercussion. We need palliative care that is not dictated by an insurance company. We need you, but we need more than 10 minutes.
You have 10 minutes. What are we going to do about it? What can we do about it?
Tracey Karcher is a patient advocate.
