An ongoing dialogue on HIV/AIDS, infectious diseases,
October 1st, 2021
A Thank You to One of Our Best Patient-Teachers
Harvard Medical School and Brigham and Women’s Hospital lost one of their best teachers this week.
No, it wasn’t a distinguished professor or astute clinician.
It was one of my long-term patients, who had given himself selflessly to teach dozens of medical students, residents, and (especially) ID fellows over the nearly 30 years I’d known him. Let’s call him Tony. Boy, are we going to miss him.
He worked in a fancy haircutting salon in Boston, where he was highly popular. We first met in the hospital room of his longtime boyfriend in the early 1990s, a grim time for HIV disease. His partner was dying of aggressive lymphoma; I was consulted on the case because of persistent fevers, but there was little we could do.
When our brilliant and perceptive social worker realized that Tony — clearly a kind and friendly man — would soon be alone, she reached out to him.
“How are you doing?” she asked.
“Not so well,” Tony said. “My test is positive too. And I hate my doctor.”
Yes, that could have been a red flag for a difficult patient. But it turns out Tony’s doctor really wasn’t a good match — he was highly judgmental about the fact that Tony had HIV. “He spends more time telling me not to spread it to others than he does trying to help me. I can’t stand the guy.”
So I became his doctor. Over the next few years, Tony’s CD4 cell count fell, he suffered several HIV-related complications, and required admission to the hospital a few times — but through it all he remained cheerful and unfailingly nice. When able, he continued to work full time at the salon, sometimes walking over to the Ritz-Carlton to blow dry a fancy person’s hair before an important event.
“It’s important to them!” he’d say, proud of being in demand. “Plus the money is great.”
Tony had a humble background — he was born in another country, raised in a “rat-infested” (his words) apartment by immigrant parents who didn’t speak English, and he never attended college.
No matter. He got along with everyone — not just the fancy ladies (it was mostly ladies) at the Ritz, but also our aforementioned social worker, our front-desk staff, our nurses, and most notably, our ID fellows.
Over the next 29 years, he must have seen at least a dozen different fellows as they went through their fellowships. He treated each one of them like his primary ID/HIV doctor, never once acting as if they (as trainees) were just “pretend doctors” waiting for the “real” doctor (me) to show up. You can’t imagine how important and empowering that attitude is for doctors in training.
Plus, he agreed to speak at Harvard Medical School classes several times a year, sharing his stories about what it means to live with HIV in the United States. In these sessions, he generously offered his unedited views on American medicine, never sparing certain doctors he’d met with lousy bedside manner.
“He treated me like I was his next down payment on his Cape house,” he said about one particularly aggressive surgeon. “Cha-ching!”
Nope, he wasn’t shy. But what great teachable moments for these young doctors-in-training.
Why do some patients embrace this role in our teaching hospitals? What is it about their personality, and makeup, that gives them the generosity of spirit to help train clinicians? And conversely, why do some people go to a teaching hospital and resent, ignore, or avoid the students, residents, and fellows, treating them as an inconvenience? Don’t they know what the word “teaching” in “teaching hospital” means?
Although I don’t know the answer to these questions, I can assure you that we physicians are exceedingly grateful to the former group for their taking on this very important role — something I told Tony repeatedly over the many years I knew him.
One of the privileges of being an HIV specialist all this time, of course, is witnessing the transformation of this previously fatal disease into one that’s treatable. Tony faithfully took combination antiretroviral therapy as soon as it became available in 1996, and it saved him from dying of HIV. His virus has been under control since then.
Not dying of HIV means that regular diseases of aging start to take their toll, and these did not spare Tony, in particular because he was a lifelong smoker — severe osteoporosis, arthritis, COPD — and innumerable aches and pains plagued him. When he started to lose weight earlier this year (he was already rail thin) a workup quickly established he had pancreatic cancer. “It’s the cancer that gives cancer a bad name,” one Dana-Farber doctor memorably told me.
It was only a couple of months from his diagnosis to his death this past week. He was surrounded by his family, friends, and most importantly, his current partner.
When I mentioned just how grateful I was for all the generous teaching Tony had done over the years, his partner shared that he drank his morning coffee each day always from the same mug.
“It’s a Harvard Medical School mug,” he said. “Has to be that mug.”
Makes sense.
And not bad for a guy who never went to college.
17 Responses to “A Thank You to One of Our Best Patient-Teachers”
Paul E. Sax, MD
Contributing Editor
NEJM Journal Watch
Infectious Diseases
Biography | Disclosures | Summaries
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None of us would be where we are without teaching patients like this! Hopefully we have done you all proud with the care we provide because of your willingness to teach us – thank you again!
Thanks for posting this. Moved me to tears, Sometimes people think I have PTSD when I am discussing COVID and say AIDS instead, I was in the firing line at the onset of the AIDS pandemic and share similar stories. I took care of the first AIDS patient at an affiliate hospital of a major medical school. I would come three times a day to bring his meals to him because no one would enter the room, I wore gown and gloves but the head of ID at the time wanted to throw me off the staff because I did not wear a Hazmat suit, I too had people like your patient speak at conferences, and yes they educated scores of students, house staff, and even attendings – especially in humanity
I brought hot tea to one of my COVID patients every night. I washed out my big coffee cup (only disposable during covid, no refills on mugs!) and made her herb tea as my last chore before leaving. Hot tea made her chest feel better. On one trip up to her bed, she was coughing, since her oxygen tank had run out. O2 sat in 70s. So the tea may have saved her in more than one way!
When she recovered, she brought me hand cream and a box of tea to clinic.
I never felt more satisfied being a doctor than during that time of COVID in early April.
Thank you for sharing this touching story. I love the journey through his life from the time you met him, how he treated ID fellows who came and went over the years, and finally his partner sharing about his coffee mug. Immediately made me think about one particular patient I met while on ID service at MGH who later became my clinic patient and who I still think about to this day.
Thank you so much Paul for sharing this story which is so exemplary of the altruism I have been privileged to witness for decades of so many of our patients to assist with teaching, clinical studies and the like. Certainly one of the key which makes HIV such a rewarding and special field to be part of.
Thank you Paul for honoring the contributions of Tony and everyone like him by sharing this moving story.
Great reminder that our teachers aren’t just our faculty but also the countless patients who volunteer their time to share their experiences with us.
Beautifully written. A great reminder of how we have learned. From listening and respect for others and due to those who have been willing to take the time to teach us. A great reminder also of the progress we have made in care of patients with an unknown lethal virus Thank you Paul
A very moving piece and a great reminder of the importance of treating everyone with respect. Thank you.
What a wonderful tribute. It reminds me of a few of my own patients who were so generous with their time teaching students and trainees. An unrecognized group!
Beautiful!
My patients have never disappointed me. Years ago, a new intern on the first day of internship, had a complete mental break. She simply could not take on the responsibility of caring for sick patients. I told her, the next patient will reassure you–a patient I had seen in the past, who regularly fell off the wagon many times and got sick–so without any preparation, I asked the patient to describe how important it is to get back up…no matter what. The patient was wonderful…so encouraging and so generous. But, my poor intern was so shell shocked she really could not work. I wrote all her notes, Accommodations were made. She came around and finished residency without a hitch. But I always remember how in that impromptu way, the patient really tired to help the resident.
Our patients teach us a lot.
thanks for your beautiful story.
Honoring Tony, and all our patients who taught us so much. My first clinical as a bridge APRN student (formerly engineer, now newbie nursing student) was the triple diagnosis ward at Shattuck hospital in JP- end stage organ disease, mental illness, and AIDS. I will never forget my first patient who told me honestly and openly what he was feeling as he died of liver failure and his family completely rejected him- his partner had died a year earlier. It is such a privilege to walk with our patients.
Very moving piece. Many of us have patients that deserve teaching awards. I’ve always admired their abilities to be honest and direct with medical students, residents and fellows. Rather that treat these learners as “less than” doctors, they helped support and teach them about medicine and about life.
I have a special admiration for patients like the one mentioned, reminding me of the first LP I performed on a patient with cryptococcal meningitis, and many others who treated me with such respect over my decades of learning and teaching. I often say that treating patients with HIV before having antiretroviral medications taught me how to be a real doctor.
Great tribute to the best teachers in the world. Everyday I learn from them: grace, courage, laughter, silliness, love—in short, how to live life. I have been blessed. To all these teachers, Thank you.
The Tony awards were established in 1947 to honor Broadway performances. “Distinguished Professor of Humanities and Medicine”, recipient of the Harvard Medical School Cup, Tony is the unanimous selection for 2021,
Hi, Dr Sax.
You connected me with this patient a couple of years ago when I was working on a short CME piece on the patient perspective. Talking with him was delightful, and he was extremely helpful. He also mentioned how grateful he was to you for so many years of care and kindness.
He was special. I am so sorry to hear of his death.
vinsona@gmail.com Thank you Paul. I was in tears.
Teachable moments were many as we provided care to Sonali the last 18 months as her brain tumor inexorably progressed limiting her more and more till she ended up “locked in”.
She kept her love for life till the end. Two stories stand out. One was he joy she showed blinking vigorously when one of those pink mouth swabs drenched in melted chocolate or expensive scotch were placed on her tongue. She was a foodie and her siblings came up with this for her in October 2011 four months before she died.
The second story Aruna and I have shared many times.She had fallen sick in the 3rd year of Med School a few months after her MPH from Hopkins. She thought she was home free while working at Harvard over 10 years ago now.
Knowing how difficult it would be for us after she died she left me with a memorable quote. I had gone to her room early one morning in June 2011 to relieve mom. By then she was bed bound. I found her awake. She was happy, smiling broadly. I teased her – Hi Sonali what are you so happy about. She looked into my eyes “Dad Happy is the only way to be”. I gave her a long hug.
She lost all speech in 3 weeks.
Her smiling face and words are engraved at her memorial in Bismarck.
Many have told us how her words have helped them cope with life.
Patients are amazing teachers.