Continued from Part I.
The day I got her admission package, I stared at the history in front of me, document after document of her tragedy. One paper I couldn’t get past: her goals of care designation. C2.
In Canada we don’t have DNRs; we break down DNRs into exactly what a patient may or may not want. In the Resuscitate section, there are categories based on whether you’d want chest compressions and CPR, intubation, ICU care, etc. In the Medical section, all medical management is offered without the heavy mechanical interventions: big gun antibiotics, steroids, and the like–anything that may treat a patient and their condition. The Comfort care section is just that–comfort. Maybe antibiotics only if the patient has a pneumonia giving them a distressing cough. Mostly just painkillers and anti-nausea medications. But lots and lots of painkillers.
I guess with her sudden and drastic decline, the hospital she came from asked the family to make her C2. They informed the family that her time was extremely limited. They did what we’re always told not to do as medical professionals, and they gave her an expiration date: 1-2 days, they said. Prepare yourselves, they said.
But here they were, 5 days later, now wondering how much longer she would outlast their expectations. The family I talked to didn’t sound like they were prepared. They sounded like a family who’d had their hearts shattered and readied themselves for the worse, only to watch their loved one somehow fight through an enormous medical disaster and appear to somewhat stabilise again. They sounded like people who had been convinced that this patient was appropriate for C2 goals of care. But when I asked how we should approach management for this patient, they told me, “Well, since she’s starting to be herself again, couldn’t we do whatever we can to make her better? And… do you think she’ll be around for Christmas? We’re hoping to put on a family get together and just have everyone say goodbye.”
This wasn’t an absolutely unrealistic expectation. This was family who had accepted a palliative diagnosis and were aware that no miracles would take place on this unit. But they asked if we could continue vitals, keep her comfortable, work up any small problems that might come up along the way, treat this human with dignity, and if at all possible, enhance her mental clarity so she could at least interact with her family in her last days.
But let me be clear: it wouldn’t have been unrealistic if she had been a Medical management level of care. But with a C2, there’s literally nothing we can do. Spiked a fever? We won’t bother finding out the source. Developed a rash? Yikes, too bad for you. Turning yellow? Well, we’re not doing any bloodwork so we’ll never know what happened. This family comprised of laypeople with no medical background are going to take the advice of whatever doctor in a fancy white coat tells them. I only wish the doctors they’d encountered had reassessed the situation after she was brought back from the brink of death, and maybe saw that C2 had been appropriate at the other hospital, but right now she had a possibility of not imminently dying within like, the next two days. Maybe she might make it til Christmas. Or, even if not, maybe there are things we can do to bring her to a higher level of consciousness. Maybe we can flush out some of those toxins with artificial means just temporarily so she can be herself again with her family for a few days.
We weren’t able to do that for them. Despite my adamantly arguing that this patient may deserve to be a Medical level of care, despite the fact that she had easily correctable electrolyte abnormalities that would enhance her lucidity, despite the fact that I talked to the family alone and explained my position and disagreement with others on the team, it just didn’t happen that way. Such are the consequences of being a measly medical student, I guess.
Things I’ll be taking from this:
- Reassess, reassess, reassess. Doctors want to think that goals of care are something permanent. “Yessss we’ve convinced the family of the terminally ill patient to finally let go!” Except, things can change, patients can get slightly better, sometimes patients with a palliative diagnosis can suddenly have that label removed and go on to live years. I’ve seen it with my own eyes.
- Personal directives are not enacting what the substitute decision maker thinks is best for the patient. They are not for doctors to enact what they think is best for the patient. Personal directives are intended to act what the patient would have wanted. Whether that is completely irrational and they want to live forever or they want the quickest means to die–it is still THEIR DECISION.
- Do not ever, ever, ever waltz into that room with your white coat swag and tell the family about your x number of years experience and how you’ve seen it enough times to watch how this will play out. No matter how much you mean well, that is just arrogant. It’s arrogant to assume that patients are all the same, that your beneficent doctor knowledge outweighs patient autonomy.
- Don’t completely undermine your medical student. Yes, some of us are idiots, but we spend a hell of a lot more time with our patients than you do. We heard the story firsthand. We heard the patient’s wants and fears. Please, trust us to at least be a decent set of ears. We’re not all useless.
Cara died two days after I left the service. Her bloodwork confirmed exactly what I thought. I don’t know if any interventions were made by the on-call doctors, but I can only presume they weren’t.
I’m probably not supposed to do this, but I’ve been creeping her and her husband on facebook. Their wedding album is made public. Looking at the dates, she would have been diagnosed one year after the wedding. The strength this would require from her husband is mind blowing, who has struggled with this journey for years.
But the strength displayed by Cara is what needs to be honoured right now. Congratulations Cara on your beautiful wedding and the short life you two have shared. Congratulations on your terrific fight that no one expected you to have battled for so long. Congratulations on living a full life in the years after your diagnosis, fuller than most people do in a lifetime. Congratulations on your legacy and the impact you’ve left on everyone else, including me. Thank you for what you’ve taught me.
Rest in peace Cara. Your photos as a gorgeous bride don’t do justice to your true beauty.