I believe in the practice of medicine and enjoy teaching others this amazing art. However, after experiencing nine months of interactions through medicine as the daughter of a sick patient, I struggle with my pride in the profession and fear of the health care system.
My mother would proudly tell all her physicians that her daughter was a doctor. I knew she was proud, but I didn’t believe in using my title to change the care she received. That belief changed when she became sick.
The first time I used my title in vain, senior specialists at another hospital tried to a procedure and weren’t successful. Upon arrival at the new hospital, my mother politely asked the ICU residents not to attempt the procedure without the attending in the room. The residents glibly responded, “we are the A team – and he’ll be out there.” When they didn’t listen, she looked at me with fear. I walked out and spoke with the attending. I said, “I am a doctor, and I train residents. Your residents aren’t listening to their patients.” After my explanation, he stopped what he was doing, unsuccessfully attempted the procedure, and came up with a different plan that prevented my mother from having additional pain.
When discharged from the hospital, the physician team did not know how to help us obtain sufficient home health care. I called a friend, a physician leader in the organization, and found she could help us. She knew the keywords to say and who to ask for. This personal, professional connection allowed my mother to immediately have home health.
I took my mother to the emergency room after I showed up to her house and found blood clots in the place of what she thought was diarrhea. I cleaned it up before we got in the car. I saw how much blood she lost. I personally provided the admitting resident her history. I knew her new medications and potential side effects. I knew her lab results from the previous week. I could do the math. Based on her new results, she lost the equivalent of 4 pints of blood in the past 4 hours, and she was still bleeding. The resident told me she didn’t need a transfusion. When the resident was not open to the idea of a blood transfusion, I used my title in vain. I called her cardiologist on his cell phone and told him the situation. He logged into the medical system, and the next thing I knew, the transfusion had been started.
On my birthday, my mother rapidly decompensated. I was renewing my CPR license as a cardiac resuscitation was called. I arrived at the hospital, and the resident gave me basic information. My mother’s cardiologist used my title in vain. He said, ‘No, she is a doctor. She deserves a more thorough update. You will keep her fully updated.” This resident tried, but I also received personal updates from the cardiologist.
So it continued. During every hospital visit, I used my title in vain with someone to ensure proper care or communication. My title was required to ensure the care my mother deserved as a patient.
In her final week, my mother suffered a massive stroke. I was coming to terms with the biggest decisions I made for my mother. It was time for her to officially change her status to DNR. I even had medical power of attorney forms in hand. I asked to sign papers to this effect, and was told that wouldn’t be necessary. Knowing this wasn’t accurate, I used my title in vain with the nurse to ensure I would receive an immediate call if anyone tried resuscitation. I signed paperwork to withdraw all care the next morning. The dialysis technician wheeled in the dialysis machine. I said, “No, she doesn’t need that. I have withdrawn care.” After several minutes of arguments, I finally said, “I am a physician, I know that I have the right to refuse.” Similar conversations occurred with the neurosurgeon, who was recommending aggressive medical management, the nurse who wanted to check her blood sugar, and the resident who tried to talk me out of the decision to transfer to hospice.
The final time I used my title in vain, was when I asked the team to complete FMLA paperwork. I watched the resident quickly flip through the paperwork and called his attending, upset by the amount of work involved. He came back out and said, “Well, the family member has to complete this.“ I responded, “Did you read this? The family section is complete. All you have to do is write her diagnosis here and that she was here in the ICU. You indicate unknown time.” He responded that he didn’t have the time to complete this form today. I asked him if he knew I was a physician, and he looked up startled. I said, “As an attending who teaches residents, I hope my residents never treat families how you just treated me. You just told me that you don’t have time to ensure that I can be by mother’s side during her final days.” Trembling in anger, I walked away to the hospice unit. Although that resident did not help me, after sharing my story in the hospice unit, they ensured my paperwork was done within two hours of our arrival.
My mother had many health care interactions in her final nine months. I have no regrets for using my title in vain to ensure the best care. I regret the necessity. I regret that a patient’s wishes weren’t respected and that she needed a physician daughter advocate. I fear for patients without physician daughters who understand the system or have colleagues who know code words. I regret that I carried my title of physician, and was not just a daughter, holding her mother’s hand in the final months of her life.
Santina Wheat is a family physician.
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