Tuesday, April 21, 2015

offering hope

The most common question I get asked when I am seeing a patient who was just diagnosed with HIV in the emergency department is: am I going to die? 

Over and over, I offer reassurance: this is not a death sentence. 

Even to the sickest of patients, I still reassure: this isn't a death sentence. Throughout this year, I've seen people on the edge of death because of complications from undiagnosed HIV. They have severe pneumonia, brain infections, meningitis, or cancer. A handful have had single-digit T-cell counts (normal is around 1000; AIDS is less than 200), and they still manage to survive. 

Recently, a young man came to the emergency room with severe pneumonia like so many others I have seen this year. He was diagnosed with HIV in the emergency department. His T-cell count was 10. When I met him, he begged me to tell him that this wasn't a death sentence. I reassured him that even people with low T-cell counts can start treatment and live long healthy lives. Nothing suggested he might not survive. But things took a turn for the worse; he died a few days later. At age 38. Within 2 weeks of his HIV diagnosis. 

I felt terrible. Because I reassured him that this wasn't a death sentence. Because by itself, HIV isn't. Even with pneumonia like his, it almost always isn't. For him, it shouldn't have been. I hate when patients are given false hope. I felt like I had lied to him.   

Last week, another patient came in. Instead of pneumonia, he came in because he was confused and weak. In addition to being newly diagnosed with HIV, there was a huge mass in his brain. This time, I knew that the odds of his survival were probably low. Like everyone who finds out they have HIV, he begged me to tell him he isn't going to die. I struggled to find the words. We don't know yet exactly what is in your brain. It's probably cancer, and it's probably not good. But no matter what, we are going to be here and take care of you. He died eight days later. 

Most cases of HIV that are diagnosed in the emergency department are not this severe. Most are people who came to the emergency room for something minor: an abscess, a stomach bug, a cold. Because an HIV test is ordered for everyone, it is discovered. 

In these people who are otherwise well, I struggle with how to offer reassurance without minimizing the realities of living with HIV. Because it isn't a death sentence. Because there are amazing treatment options available. Because most people with HIV live long, healthy lives. Because most people with HIV in this country die from something other than HIV. But it still is a life-changing diagnosis, and those promises of health are contingent upon rigid adherence to a combination of medications. There are still losses to grieve. Life won't be the same. But just because life won't be the same doesn't mean it can't still be beautiful.   

Friday, March 20, 2015

healthcare privilege

The first time she stumbled into our clinic on Skid Row, she was on the brink of death. A huge wool coat hung over her 83-pound frame even though it was 90 degrees outside. Thrush crawled out the corners of her mouth and over her lips. She'd been in the ICU last month; she never finished the antibiotics for the AIDS-related pneumonia she had. Now her cough (and every other concerning symptom possible) was back: 
Her blood pressure was 86/40; there was no choice but to send her to the emergency room. We gave her a liter of IV fluids while waiting on the ambulance to come because we knew she might wait a while to see a doctor once she got to the hospital. The wait to be seen by a doctor at LA County Hospital can range anywhere from 8-36 hours. We hoped that sending her by ambulance might expedite things. Sadly, it was almost 24 hours before a doctor saw her, and 28 hours until the necessary chest x-ray was done. The previous pneumonia was still there, though slightly improved. She was released the following morning after a couple doses of IV antibiotics, back to the court yard on Skid Row where she slept. 

Martin Luther King, Jr. said, "Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane." These inequalities become more glaring when I find myself on the privileged side of healthcare. On the same campus where LA County Hospital sits, half a mile down the hill, is a smaller private hospital. Recently, I found myself having to access their services.

I was sent from my doctor's office to the hospital's equivalent of an emergency room. It was less than ten minutes from when I checked into the emergency department until a doctor saw me. Over the weekend when I felt worse, the on-call doctor sent me back to their emergency room. Within thirty minutes, IV fluids were running into my dried out veins. And two days later, when it was finally clear I had to be admitted, it took under an hour to transfer me from my doctor's office into my room. 

Beyond the speed and access to services, I carry additional privilege: speaking the same language as my doctors, having the knowledge to ask questions about my treatment, and being able to read the prescriptions I was sent home with (and a home to return to)

I struggle with this privilege. Because there is no reason my patient should wait 28 hours for a chest x-ray, when in that same amount of time, I made it to a room, saw the medicine team taking care of me twice, and watched 17 episodes of Friends on TBS. Though our country is trying to lessen these disparities with things like Obamacare and the expansion of Medicaid, we still have a long way to go until everyone has equal access to healthcare. Until then, I'll keep fighting for my patients to get the care they deserve. 

p.s. - in case you were wondering, my patient is doing great. She is now on HIV medicines, has gained 40 pounds, has been living in a medical-transitional housing unit, and will be getting her own place next month after 28 years of living on the streets. 
and i'm doing much better too. :)