Confession of a Healthcare Provider
I’m finally ready to forgive myself
The names in this story have been changed to respect confidentiality.
Twenty years ago, while working in my first nurse practitioner job as a primary care provider and asthma educator, I gave up on a patient.
Kara was 10 years old when I first started managing her asthma. Her asthma never seemed well controlled. She had a lot of environmental allergies that made her asthma more difficult to control. She didn’t use her medicine consistently, and her parents didn’t oversee her care effectively. This is a common scenario with many types of chronic disease management in pediatrics that we tend to label as Non-Compliant.
I’ve always thought this label was a cop-out, where healthcare providers put all the blame on the family without taking responsibility for helping them fix their non-compliance. This is a complicated issue that requires time, effort, cultural and developmental competence, and above all a trusting relationship — all of which the systems we work in like to say they do, but don’t really support when you are given 15 or 20 minutes of appointment time.
I worked with Kara for 7 years: one step forward, one or two back. I did home visits with a social worker to help address her environmental issues which were asthma triggers. After she missed many consecutive appointments (transportation was not an issue), I felt that I had done all I could do. I was discouraged that I had made all this effort and she didn’t seem to care enough even to show up. I endorsed discharging her from the practice. I left that practice soon afterward for another job.
A year later, I was having lunch with one of the nurses that I used to work with at that practice. She told me Kara had been in the ICU on a ventilator because her asthma had finally almost killed her. When she was able to talk, she asked for me, and said I was the only one who ever really understood her and her asthma.
I was devastated at the thought that I had given up on her and vowed never to give up on anyone again.
A few years later, while working in my next practice, I met Ahmed, another 10-year-old with bad asthma. I had started a home asthma visit program as part of a large federal grant (thank you, Affordable Care Act), and he was my first home visit patient. His family was receptive to our recommendations, and over the next seven years, his asthma improved.
When Ahmed was 17 years old, he began smoking a lot of marijuana, which of course was not good for his asthma, but also not good for his mental health — another complicated issue. He became depressed, not feeling like he had a purpose or a goal in life, so he smoked more to provide that temporary relief from his emotional pain. His parents were devout Muslims and were quite upset over his lifestyle choices. Ahmed felt like his father had disowned him. His mother would call me weekly, pleading with me, “Scare him to stop smoking the weed, help him like you did with his asthma.”
I had to decide how much time and energy I was willing to commit. I knew it would be complicated. I wasn’t sure that I was the right person for the job. I wanted him to see a therapist, but he said he only trusted me. I thought of Kara and decided that I would try to help Ahmed even if he didn’t seem to want to help himself — he perceived helping himself differently than I did.
I met with him on a regular basis over the next 4 years. After a breakup with his girlfriend, he overdosed on his Prozac and was hospitalized for his suicide attempt. A year later he almost died in a motorcycle accident. I managed his concussion, his wounds, his asthma and continued to work with him on his substance use. He never missed an appointment, was always attentive and respectful, but he didn’t ever seem to make much progress.
I would say to Ahmed, “I’m just the GPS - you still need to drive the car, and figure out where you want to go and how to get there.”
When he turned 22 years old, I had him transition to an adult primary care provider. He had outgrown our pediatric practice. This time I knew there was nothing more I could do for him, and it was time for us both to move on.
Last week, I got a message that he had called the office asking to speak to me. He’s 25 years old now. I was almost afraid to hear what he wanted to talk about, hoping he wasn’t desperately seeking help again.
He wanted me to know that he quit smoking weed, got a job as a flight attendant, is going to the gym almost every day, and feels great about the direction he is taking with his life. He said he’d been thinking a lot about me and he was finally ready to take some of the advice I had offered over the years. He wanted me to know he appreciated all my time and effort and said it really did make a difference.
In my 40 years as a nurse and 25 years as a nurse practitioner, I had never felt so glad that I didn’t give up on someone. I can only hope that Kara is all right, but I don’t think I’ll ever really know. All I know is that I learned from my mistake, accept my imperfections, and am finally ready to forgive myself. I know that I can’t save a million starfish washed up on the beach, but I saved that one.
Thank you for reading. I’m also the owner of Surviving Alzheimer’s — Medium where you can read our lived experience in chronological order trying to survive the emotional and physical trauma of Alzheimer’s
