I had my first experience with patient death last week.
Let me clarify. I'm a medical student, not a care provider, and I am in no way permitted to make any changes, suggestions, prescriptions, or even offer friendly advice to patients. The patient is even, for the moment, alive and well enough. But Crohn's is a nasty illness, and sooner rather than later it is going to claim her.
She was younger than me, which was unusual. Most medical students start out at 22-23 and graduate four years after that. Unless you're in Pediatrics, you shouldn't be seeing too many young patients, period. A large number of people live fairly illness-free lives until the inexorable diseases of hypertension, diabetes and back pain start to kick in during middle age. I am not one of those people, but more importantly neither was my patient for the day.
She had Crohn's Disease, and she had the worst case I've ever seen for her age. Crohn's isn't an autoimmune disease, exactly, but it's very similar to them. Your immune system is in a constant inflammatory war with bacteria, food, and your own bowels. There are a lot of drugs that can delay the progression by decades, to the point where the average life expectancy with Crohn's is only 2-3 years shorter than if you never had it. It's unpleasant, but it's not typically lethal.
My patient was not typical, however. She had three tubes in her draining a collection of feces, blood, pus and God knows what else. Her list of antibiotics filled half a page. If she hadn't had Crohn's, it would still be no wonder she had no appetite. She'd been in the hospital for several weeks, with no end in sight. She was leaking onto her hospital bed and taken over by opportunistic infections that were happy to make a new home in her body. When I talked to her, she was scared and wanted to know when she was going home. Well, what could I say? I wasn't a doctor, and I wasn't even working on the medical service (that is to say, with her main team of doctors.) My job was to evaluate her mental state, empathize, and get out. I had no access to her records at the time that quietly noted hospice care might be necessary soon. Neither did she, of course.
She asked me: what is my long-term plan? When will I get out of here? I had no idea. Her doctors had no idea. Given the severity of her infections, she might be leaving via the basement. Or the heavy-duty antibiotics might clear her infections and she might live several more decades. Nobody could say.
About three patients into my fledgling medical career, and I feel like I really failed already. I have absolutely no doubt her medical care was technically excellent. The doctors I rounded with clearly empathized with her, and the pain consult was trying its best to ease her suffering. But the patient had no idea how serious her illness was. I asked my resident: who will tell her? Well, that's the job of the medical service. We were consultants, and if medical hadn't mentioned hospice care yet, there was no way he or I was going to do that. It wasn't my place, and what if we were wrong? He was not an internal medicine doctor, and I was a medical student, for goodness' sake. We just had to wait.
So, as far as I know, my young patient is still in the hospital still waiting for someone to break the news that this infection isn't like the others so far, and she might not be leaving the hospital. She will continue to receive technically excellent medical care. I hope she recovers, although I don't believe she will. If not, I hope that she is able to spend her remaining time as she wishes, instead of waiting for news from her doctor that might never arrive. We will see.
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