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.

Don't become a doctor #21 - haunted

When I was in medical school, a friend of mine asked me if I saw any ghosts in the hospital. No. I don't believe in ghosts. "It seems to me that doctors are always haunted by so many ghosts." I thought my friend was so very quirky, but she was so very correct. We are all haunted by ghosts.

My first ghost was a wonderful elderly lady s/p colon cancer resection and prolonged abdominal ileus. I placed an NG tube, like I'd done numerous times before, and she aspirated, went into respiratory failure, and ended up intubated. My next ghost was a woman with terrible breast cancer who suffered every moment that I kept her alive until her body failed. I have all these shadows hiding in the periphery of my vision: the colon cancer that we didn't find soon enough, the breast cancer that didn't respond to any treatment, the heart attack that happened the day after I did a complete physical, the elective orthopedic surgery who died on the table, the blood clot that I didn't prevent. And it would be nice if these shadows were just that, painful memories that hide in the darkness, but they are more than that. These shadows had names like Evelyn and Erik and Nancy and Steven. They had spouses and parents and children and friends. They had jobs and lives and purpose. And they haunt me because I took those things away from them.

In reality, I didn't kill them. Bad things happen. As long as a doctor is not incompetent or negligent, then there is always a chance that even the most benign circumstance could end badly. Life is not fair. In fact, I've written about this no less than twice already: Perfection and Guilty. And living with the choices you make, that takes some adult sized diapers sometimes, but it's not quite the same as knowing that you took part in an event that resulted in the death of a person. And you have to talk to that person's children or spouse, and tell them what happened. How do you do that without seeing the ghost over your shoulder? If you can't deal with the shadows of your mistakes having names and faces, then medicine may not be for you.

The story of diagnosing cancer

At this point in my career, I'm well experienced at walking a family through the process of a new cancer diagnosis. From the patient side, it's a whirlwind of confusion and waiting and vagaries, but the process itself is usually the same. So from the doctor side, here is the story of diagnosing a cancer.

It always starts with one abnormal finding, something fairly innocuous, but difficult to explain. "Not sure what this is" and "We need to do more tests" are the words I tell you, and I have no evidence that it's cancer, but something doesn't sit right. I have a hunch. I go through all the millions of possibilities to explain this one finding, and in the end, I just have a gut feeling about it. "I'm not going to get a good night's sleep until I chase this down" is what I tell you, as I send you off with some labs to repeat in a few weeks, or a follow up x-ray. And two weeks later, it's still off, and maybe worse. It's a PSA of 7 or a lung nodule that's a little larger. There is a lot of mental debate, and maybe the workup starts, or maybe recheck it in another few weeks, or some more tests. The descriptions get more concerning, but still very vague: "I'm concerned that we need to rule out some serious possibilities" or "we need to take cancer off the table."

There is always that one alarming finding. Maybe the PSA comes back 157. Maybe you find bony metastatic disease. Maybe your abdominal CT reveals diffuse retroperitoneal lymphadenopathy. And if your doctor is anything like me, then maybe he throws something against a wall or maybe she curses loudly and kicks something. The language gets much more alarming. Maybe I'll be cautious and say something like, "I'm not sure what this is, but I'm really worried that this is cancer." Maybe I'll be much less optimistic and say, "At this point, it is almost certainly cancer. The only question is what type and can we treat it." Whatever words come out of my mouth, I am still guessing, because I don't have a biopsy, and I can't be sure.

There is no room for uncertainty now. I have to know, beyond the shadow of a doubt. I must have a piece of it. So I call up the surgeon or the interventional radiologist and tell them I need a stat biopsy. And normally the surgeon would say, "Screw you!" and maybe he does say that, but he readjusts his schedule, and he adds on this case, delaying or even bumping surgeries he's planned for weeks, ends up coming home late and missing his daughter's soccer game. He curses my name, but he does it because this could be cancer, and he knows the stakes.

The pathologist may get a chance at it with frozen section, where they look at it during the surgical biopsy, but more often than not, we have to wait for pathology to do their magic, and that will be 5-7 business days. And we're all waiting. Those knots and butterflies, I have them too. And so I try to keep you busy. I try to get the medical oncologist and radiation oncologist set up. I get the PET scan done. I try to keep the wheel turning so that these next two weeks of waiting can pass a little quicker. And I'm holding out hope that I am wrong, that this whole workup was a big false alarm.

The pathologist gets it and does all kinds of stains and treatments and manipulations of it, and probably they could tell me after 3-4 days that it's most probably cancer, but they know what's at stake. They have to be sure. So they keep testing it until they're sure, and then after that, they test it more to figure out what weak spots this cancer might have, where we can target therapies. They produce an exact report, but as soon as I read, "Carcinoma" then I've seen what I needed to see.

Now finally, you sit down with me and I tell you, in no uncertain terms, that this is cancer. I can tell you this because I went through many steps so that I was sure, and the pathologist went through even more steps so that she could be sure. We are sure, but you will still ask, "Are you sure?" It's not a dumb question. I asked too. And it will seem like a surprise to you, this process that you were intimately involved in, but it's always a surprise. And I am surprised too, because I was hoping so hard to be wrong. I was hoping that any number of people slipped up, and that this is one tremendous farce. And that is why I had to be sure, so that when you are sitting in front of me, crying and asking me deep, painful questions I can't answer, like "Why?" then I can I can give you the one certainty I have: this is cancer, and of that I am now sure.

Game face

I got into an argument with another provider. I really disagreed with his care. I saw his patient, and she didn't know that her diabetes was ragingly out of control, that her kidneys were actively failing, that the fatigue and dyspnea she'd been having for the last few weeks were heart failure. It was all news to her.

If you've working in any service industry, you know that what goes on in front of clients is very, very different from what happens behind closed doors. That shouting match you had with your co-worker is described as a 'friendly debate.' The flagrant incompetence of your staff is described as, 'Oh, she's still getting things figured out.' When we're standing in front of the people we're serving, we are trying to convey a sense of competence, so that they can have confidence in the care they're receiving. And sometimes, it's tempting to use this colorful language with diagnosis and management. We simplify and generalize and minimize and suddenly, terminal cancer becomes 'a concerning finding' and overwhelming sepsis becomes 'a serious infection.' In an effort to portray confidence, we create a false narrative of the events unfolding.

So when I saw this patient and told her the rather unpleasant truth, that she had multiple major medical conditions all doing terribly, she was stunned. And when I talked to the other doctor, I did not have any nice things to say, because looking competent and being competent are not the same things. And if you're going to put on a game face, then you'd better have the game performance to back it up.