Letter 7: Doctors Killed You
Your brother, sister, Dad and I first thought that your death was truly a
one-of-a-kind tragic medical accident. We soon learned differently.
After your death certificate was issued, one of my first actions was to
contact your doctors to set up meetings to learn more. As you know, I
had not been actively involved in your health issues since I had no idea
how significant your warning symptoms were—insomnia, headaches, depression, hair loss, and weight gain. I was proud that you were seeing doctors regularly, taking care of yourself and your own health.
You suspected Lyme disease (Maryellen had just been diagnosed) or adrenal fatigue (a condition mentioned frequently at the gym where you had been a trainer). An endocrinologist thought ovarian cysts were the problem and said you were androgynous and hirsute. That was an upsetting diagnosis! I remember that you and I carefully examined your body but found no signs of excessive hair.
After your death, the Physician’s Assistant at your primary care office and the physician in charge of the practice made an appointment to meet with your father and me as soon as we requested it. Their clinical notes had said the cause of your symptoms was a mystery. They looked perplexed and said “no” when we asked if they had a computer program that would help them identify symptoms that could be the result of a medication. Maryellen and I assumed that such a program would be in place in most doctors’ offices.
We asked if they had consulted each other about your case. They honestly told us that they had not, and that it was not routine in their practice for the PA to consult the attending physician about ongoing cases. Both were personable and expressed empathy and concern about your death. I understood why you had liked the PA so much, since she had a very pleasant personality. Nevertheless, Annie, I was surprised by the haphazard way they seemed to have approached your treatment.
Oh my -- the next two contacts with your OB/GYN and your endocrinologist did not go so well. The physician in charge in the OB/ GYN office refused to come to the phone; he would only put us in contact with the Nurse Practitioner who you had seen. This lady gasped when I told her your name and what had happened to you. She said, “I remember her; she had red hair, didn’t she?” She then took my name and number and promised to call me back. She returned my call within the hour and said that she had been advised not to talk with me. I couldn’t believe it: You - a patient in their care -- die and their only concern is that they should not be blamed?! You had taken the medicine they had prescribed for cramps, menstrual irregularities, and possible ovarian cysts. And then you had died – shouldn’t they want to help figure out why?
The endocrinologist didn’t just refuse to talk –Annie, you wouldn’t believe how disrespectful they were to me: a mom trying to figure out how her daughter was suddenly dead, her remains in an urn. Your doctor was on vacation, so I asked the head physician for a meeting. She told me that was not their policy. Then she said that I was just trying to stir up trouble, and if I continued in this manner, I would never get closure.
Annie, I was flummoxed. How could she be so rude and so cruel? I had approached her calmly and with respect. We had so many questions and we felt desperate for answers.