I’ll start with a spoiler alert. Casey’s* story unfolds in reverse from most of our patients’ experiences. In this country with shiny hospitals, we’re not known for sparing any expense. But when Casey arrived on our floor, she came with a palliative care consult; she would not be offered another surgery, and I was to focus on making her comfortable.
You see, Casey was reduced to the few details of her transfer summary: “32-year old IVDU. Relapsed. Recurrent endocarditis. Not a candidate for surgery. Septic. Palliative care consult.” But when I walked in to introduce myself and prepared to deliver her bad news, she cut me off. “I know I’m a dying woman,” she said. “But I haven’t talked to my mom in 5 years, and she’s driving up here from Louisiana. She’s going to be here any minute. Please, can you come back later?” All that information in her transfer summary had failed to move me, but something about that—that she was someone’s daughter-- really got to me.
In the coming mornings, I’d sit on the edge of her bed and learn that she was a mother of 2 boys who were being raised by a foster family, and a Southern girl like me. Like me, she hated the cold and couldn’t find a single good biscuit in Pittsburgh. She was kind, but also sassy. Stubborn, but never rude, and she knew how to keep it real.
Casey’s story was sort of unfair, but not at all unfamiliar. She was someone who, after her first heart surgery, was discharged without any real plan for treating her addiction. She left the hospital without stable housing, and since no nursing home would take her, she was told to drive 1 hour to the hospital everyday for 6 weeks to get her antibiotics…even though she didn’t have a car. She was set up for failure from the beginning, and when she did in fact fail, no one was eager to perform another surgery. There were a lot of conditions that had to be met before she would even be considered:
Infection must be cleared. Check.
Must be on fewer opioid pain meds. Easier said than done, but okay -- Check.
Consult: psych, palliative care, ethics, opioid/addiction counseling, chronic pain. Check, check, check.
There were legitimate reasons to be concerned about another surgery in a high-risk patient like Casey. Reasons I appreciated, and many I agreed with. Still, I rooted for her. But each day, she waited for an answer from her doctors, like a Roman gladiator waiting for the thumbs up or thumbs down that would determine her fate. Here was Casey—this complex, broken, colorful woman-- whose future depended so much on the binary decisions lying in the hands of her doctors. If we let all of our patients have a chance to become more colorful, wouldn’t it give us more pause before making such big decisions?
In the end, Casey got her surgery. It took partnering with her surgeons, psychiatrists, social workers, counselors, and her family, to streamline her care so that we weren’t just treating her sick heart valve, but also looking upstream to address the causes of her illness. We did things differently this time, using integrated behavioral health as part of medical decision making in order to treat both her endocarditis and her addiction together.
It’s been six months, and I heard just this week that Casey is still clean and doing well. But her outcome is the exception, because even with the best coordination of care, addiction is a disease that often wins. And the thing that gets me is, despite all those family meetings, specialists, and addiction treatment planning—despite all that, the truth is, it would have been a lot easier for us to say “no,” and her story would have ended the way it started.
*This patient’s name was changed to comply with HIPAA requirements.