Through a clinician's eyes
This is the first of a series of patient stories written by Quartet’s team of clinical leaders in recognition of Mental Health Month.
Keep Hope alive - and help her thrive
Just another case of “medical non-adherence”
Meet Hope, a woman in her 30s from the Tenderloin in San Francisco where all too often so many get deeply drawn into years of heroin dependency and the inevitable downward spiral of destruction. Fortunately, Hope worked very hard and remained clean for over a year. Unfortunately, during her recovery, she was diagnosed with HIV – the reason she came to me, an infectious disease specialist. It was 2007 and, at least in the U.S., HIV was treated as a chronic illness. Hope only needed to take her medications and she would be just fine.
Every clinic visit conversation would be the same: “How are your medications going?” “Oh fine – yes, I’m taking all my medicines,“ Hope would respond. But her numbers said otherwise. HIV counts were high and her immune system started to shut down – she was at risk of developing serious infections. We sent viral DNA sequencing tests but there was no evidence of drug-resistant mutations. I called her pharmacy and learned that Hope missed refilling her prescription a few times. I asked her about this and she said she was struggling to remember when to take her medication given multiple pills at different times. We started a new, one-pill once-a-day drug but still no progress. In her chart, we recorded Hope’s case as one of “medical non-adherence” – someone who simply does “not follow doctor’s orders.”
Three months later I was on service as the in-patient infectious disease consultation physician and received a call that Hope was admitted to the ICU with Pneumocystis pneumonia (PCP), a common presentation of HIV/AIDS from the 1980s. She remained on the ventilator for a week but ultimately, improved and transferred out of the ICU to a normal hospital floor bed. It was her first brush with a near-fatal infection – something we or, more importantly, I could and should have helped her avoid altogether.
No health without behavioral health
I needed to get to the bottom of what was preventing Hope from taking her medications. I went to her room determined not to leave until I had answers. Yes, there was some frustration with Hope, but personally, I knew I was much more frustrated with myself. I started by asking why she was not taking her medications and she responded with the usual “It’s hard to remember,” or “I’m too busy to pick up my medications.” But I kept pressing – deep down I knew there had to be another reason. A good thirty minutes later, Hope opened up. Because of her heroin dependency, she lost custody of her daughter and moved back in with her mother. She told me how ashamed and depressed she felt about her HIV and struggled to cope with this in addition to all that she went through. She was hiding her diagnosis from her mom and refused to take pills in front of her. She knew this was unsafe but she was afraid to lose her mom’s support. Needless to say, I was simply blown away that Hope was dealing with all of this on her own. I never took or simply had the time to hear how she was personally dealing with her “new normal” as a person who had recovered from heroin but also with HIV. I had been so focused on treating her “medical” condition that I neglected to check and help her underlying “behavioral health” condition.
Modern medicine – maybe not so modern
Society as a whole takes strong pride in scientific progress as we should. Case-in-point: the transformation of HIV as a fatal diagnosis to a chronic condition in only about 15 years time from the emergence of first cases in San Francisco, Los Angeles and New York. However, too often physicians and clinicians fall prey to the notion that a simple pill can “make it all go away.” We become too intent on diagnosing medical conditions, prescribing medications, and then moving on to the next patient (all under 12 minutes or less). It’s all too easy to forget we are treating whole human beings with feelings and what’s more powerful - often unrecognized, emotional forces that affect behaviors so integral to that person’s health. My miss of Hope’s underlying anxiety and depression happens millions and millions of times across America everyday resulting in unnecessary disease progression, escalation of care, and ultimately, suffering for patients and their loved ones. For healthcare to truly advance we must address health of mind as equally important as health of body. We must integrate expertise and guidance of behavioral health providers (social workers, psychologists and psychiatrists) with traditional physical health providers – and do so in fast, rapid, scalable ways to create a paradigm shift in care that achieves the highest value.
Endnote: Another chance for Hope
Once I learned about Hope’s predicament, I immediately informed the team of social workers, case managers, and nursing staff. After a few more conversations we helped Hope understand she had resources, support, and people who genuinely cared and were ready to help. Hope agreed to have a heart-to-heart with her mom to reveal her HIV diagnosis and it was an immense relief for her to know that her mom was utterly supportive and committed to helping her get better. From that day forward, Hope started taking her HIV medications and was never admitted to the hospital again. To date, she continues to thrive with a new, positive outlook on what lies ahead.