Evidence

When I was in medical school, we spent a lot of time learning about evidence. The only way we could make good decisions was to base them off of good evidence. And so, we learned about what constituted evidence, how to critically appraise evidence, how to consider the risks and benefits, what are the ways to understand different methodologies and practices, and how to understand hidden biases.

So when I first saw the Covid studies coming out in the early Spring, I was really shocked, because we were setting global health policies on extremely shoddy evidence. Half the time, we were basing direct patient care that day on what new preprint* had just come out. None of us really knew if HCQ had done anything whatsoever. We were reacting, based on bangs and flashes, like an animal scared by lightning.

And colleagues assailed and harangued me for doubting the wondrous effects of HCQ, based on the anecdotes they had heard. And when we were scolded as a profession for hoarding and stockpiling HCQ for personal use, several colleagues got defensive and belligerent, clearly caught with their hands in the cookie jar.

I've been surprised by how people act during this pandemic. I have seen a lot of questionable things done, and the reality of the situation is that when you don't know what to do next, then sometimes people will do anything, because anything is something, and something is better than nothing. There's a reason why I have that quote, "ut aliquid fieri videatur". Sometimes in medicine, we do things not because it's right, but so that we look like we did something.

*A preprint is a submission to a journal for publication, not yet peer reviewed.

Daughters

When I was early in my career, I was working with a medical student and we walked into a patient room. This was my first day on rotation, picking up my list from a colleague who told me that the family was very needy, and patient was ready to go to subacute rehab in a day or two. Instead, when I walked into the room, there were two daughters seated bedside. They greeted me by saying, "How do I spell your name? I want to make sure we get it correct when we sue you."

Anyone who's worked in medicine for long enough knows the story of daughters. My nurse doubted me, but over the last several years, she has seen it too. Every hospice patient, every terminal situation, every tough cancer case, there's always a daughter in the room, demanding answers.

Rather than get defensive, I sat down with the two daughters and said, "Let's talk. Tell me what's bothering you." And I listened for thirty minutes about how they didn't have any answers, about how their father continued to worsen slowly and wasn't getting better, and finally about how their father had a solitary pulmonary nodule on the CT scan before and nearly died from an aggressive lung cancer. Sure enough, he was deteriorating. His mentation and cognition were dimmed from numerous acute medical issues, and he never recovered from the aggressive chemotherapy that sapped his body and mind. I listened, and I agreed. I didn't have answers. I didn't know what this nodule was. I didn't know if their father would ever leave the rehab facility.

By the end of that thirty minutes, I examined the patient, barely conscious, and then said good-bye to the daughters after going through the details of the plan that lay ahead. I hugged them both, and while they fought back the tears, they both thanked me profusely, telling me that I was the best doctor they'd ever met, and how that time spent with them meant so much.

My student was totally awestruck. He had no idea that such a chance encounter in the hospital could lead to such a profound moment for a family. We stepped into the nursing station for a moment while I talked to the patient's nurse about modifications to the discharge plan. While writing some orders, I turned to my student.

"I did nothing skillful in there today. I sat and I listened to two daughters who care very deeply for their father, and who desperately want answers. The lesson you should take away from this case is--"

"We should listen to our patients and their families?" my student suggested.

"What? No. The lesson is that if you go into a room and see daughters at the bedside, get yourself ready. You're about to get rocked."

This is the job (it always has been)

We live in a Covid world now, and it's a different reality than what existed for the last 50 years. We got a little taste of it after 9/11 with all of our bioterror scares, and a hint of this when SARS happened. But now, we are full-on living in a pandemic reality. Lots of people go into medicine for a variety of reasons, not all of them altruistic. Some people want to acclaim and prestige. Some want the lifestyle and income. Some want to help people. Some want to save themselves.

There's no "right" reason for being a doctor, but there are plenty of wrong ones, and by wrong I mean that the reason will not sustain reality. Times will get hard, and when that happens, the thought of donning your white coat and fighting disease, it loses its luster. And people will complain that this wasn't what they signed up for. They didn't sign up for risking their lives every day, putting themselves in harm's way with numerous possible chances to catch a deadly and highly contagious disease. But I have bad news for those people. This is the job. It always has been.

It's the same job that people faced when SARS hit and whole hospitals were quarantined, and health care workers died without any loved ones ever seeing them for that last time. It's the same job that people risked catching AIDS every day before anyone knew just how AIDS was transmitted. It's the same job that billions all over the world still face with the dangers of tuberculosis, ebola, and numerous hemorrhagic fevers. And now it's Covid. There will always be something. When Covid is done, there will be a new disease, a new risk.

One of my colleagues has refused to see patients in person. I get it. It's a scary world out there. Every patient represents another chance at contracting a potentially fatal illness. But at the same time, we're doctors. This is what we signed up for.

The right answer

I have an elderly patient at the end of her life. Her medical condition is deteriorating slowly but surely, and she doesn't know what she wants to do, or if she does know, she's not great at telling me.

Of all the things that could possibly end her, the malady is dysphagia. She can't swallow. The answer is to put in a PEG tube and start enteral feedings. The alternative is hospice. Either choice in her situation is reasonable. She could go either way, and no one could fault her for it. But she doesn't know, and asks me what she should do.

I wish I could tell her what to do. I wish there was a right answer. I know what I would do in her situation. I'll be damned if someone's sticking a feeding tube in me. Fuck anyone who tries to prolong my solitary existence. I was ready to exit this world at the age of 17, so the thought of shooting for 100 is nauseating to me. But she's not me and I'm not her, and I can't tell her what the 'right' decision is.

Sometimes, medical paternalism is nice. Sometimes, I really want to tell this wonderful person that I know what to do, and that I know the right answer. But I'm not God. I can only guess.

Within our lifetime

I saw a patient recently who was diagnosed with AIDS in the 80's. This is somewhat of a rare find, because for so long throughout the 1980's and 1990's, HIV/AIDS was a death sentence. He reminisced to me of his many friends who have all died, and now he lives a fairly solitary life. His community was eradicated not only by the disease but also from the hate and stigma.

And I realized that for so many people today, the 1980's AIDS epidemic is not even a memory. The vast majority of millennials were babies when fear of AIDS was raging through the US. It seems like some vague memory rather than reality. And we have chosen to quietly let those memories slip away, and I think that's sad, because it is useful to remember sometimes what this country was capable of, both good and bad. People seem surprised by this current political climate, but it is not very surprising to me.

I remember in the early 80's people began to notice that gay people were dying at an alarming rate and at very young ages, overcome by very unusual infections. And eventually, it was discovered to be due to a new virus called AIDS. No one knew how it was spread or who had it. There was no visual test or identifiable features. The only thing people seemed to know was that it affected gay people. And so I was openly encouraged to avoid gay people, because I might catch AIDS. It's a hell of a thing to tell a 7 year old.

I remember when Ryan White became a household name, this fresh faced white boy from middle America who was labeled as an innocent victim of the AIDS epidemic, as if others had somehow deserved to get it. But Ryan cemented in my mind that it was possible for me to get AIDS as well. And everyone clutched their children a little tighter. And even with convincing evidence that AIDS was due to HIV and was only spread through blood or sexual transmission, people feared association with gay people. Homophobia was in the casual vernacular. Using "gay" casually is such a bizarre reality to me now, when for so long it was an insult. And on the opposite end of the spectrum, seeing "faggot" fall away from casual vulgarity seems odd, when for so long it was just another insult on par with "bitch" maybe. When Paula Deen admitted that she had used the N word back in the 60's, and people crucified her for it, for a moment, I had some sympathy for her, because I've called plenty of people a faggot to their face. I still use 'gay' these days, and I know the 'correct' term is LGBT(QI etc etc), but 'gay' is very much to me a great term. It was for so long a word that inspired fear and hatred and mistrust, and to see it now being used for identity and inclusion, that is good for this world.

Even with prominent heterosexuals coming out as HIV positive in the early 1990's, it was still a gay disease. I remember rumors flying that Magic Johnson was secretly gay. I also remember when he played in the all star game, and so many other players discouraged him from playing for fear of spreading the disease. And I remember Greg Louganis coming out both as gay and HIV+, and the firestorm of controversy he suffered for cutting his head but still competing at the 1988 Summer Games, a comeback performance that was so inspiring that he remains as one of only 4 Olympians from those games I still remember (Carl Lewis, Jackie Joyner-Kersee, and Flo Jo).

When the AIDS quilt project started, it was really the first time I realized that the people being diagnosed with AIDS, they were people. They had parents, lovers, children, families, friends, jobs. People longed to remember them, and when I found out that the reason the AIDS quilt was started was because so many of them went unburied or placed in unmarked graves, I realized that so many people had so much hate, and were willing to apply it indiscriminately, even if that should mean disowning your own flesh and blood.

When HIV treatment first came out in the late 1980's, I recall the restrictions and requirements. Doctors had to ration medication, and patients had to be 100% compliant with AZT therapy (zidovudine), a medication taken q4 hours ATC (around the clock). Think about that for a minute. Your survival as an HIV patient was contingent on you proving to your doctor that you took a pill 6 times a day every day.

I remember that because the AZT schedule was so restrictive, people became suspicious of any person taking medications in public. Suddenly, HIV patients had to secretly take their medications and hide the bottles. I remember that even being tested for HIV was tantamount to an admission of guilt. It was such a significant factor that regionally and nationally, laws still exist regarding consent for HIV testing. And in part because of HIV, we have HIPAA to protect the confidentiality of medical records.

I don't know what it's like to be gay, but I know the story of HIV from within my lifetime. And to let these memories fade would be a disservice to all the dead young men who suffered not only from the disease, but from society's cruelty to their plight.