I'll soon be leaving my HIV-infected patients, some of whom I've taken care of for more than 20 years. The emotions? The outcomes? The lessons?
“I’ve got a bone to pick with you”, said Amber. “I heard that you were leaving”.
I have been taking care of Amber (not her real name) for 10 years. When I first started caring for her, her CD4+ cell count was 5/mL , her viral load was more than 1 million copies/mL, and she was resistant to every antiretroviral medication available at that time. And she was angry.1 Now, she is doing great clinically, her CD4+ cell count consistently is above 500 copies/mL, her HIV RNA is undetectable, and she usually isn’t angry.
Amber was not the first in the last month to express unhappiness with me concerning my upcoming move to Georgia. At least 10 patients have been with me for more than 20 years, and 2 have been with me for more than 25 years. Twenty five years in medicine is a long time; in HIV care, it is an eternity. It is almost impossible to convey how different everything was 25 years ago with HIV than it is today. Every one of the individuals I am about to mention in this article could not have imagined that they would be alive today when I first started caring for them. And in that period of time, I have gotten to know so much about their lives, their families, their children, and their friends that it made me incredibly sad to have to break the news to them. But tell them I did, and during those face-to-face encounters, each of my long-term patients expressed emotions that ranged from anger to love.
I realized, several months before I told them, that I needed a “plan,” especially one that provided options for their subsequent care. I also decided that face-to-face meetings with them was far superior to a letter sent via the US postal service. More importantly, I realized that I was not the first long-term HIV treater to change jobs (or retire), and that I certainly would not be the last. But writing about it now, at least for me, helps me bring closure to an incredibly rewarding 3 decades of providing HIV care to hundreds of individuals. And while I plan to continue providing HIV care in my new location for another decade or more, this upcoming move seems more like an “end of an era” than just “another chapter.”
The emotions? Lots of tears, along with some long periods of sobbing, from men as well as from women; an outpouring of love, again from both men and women; openly expressed feelings of abandonment; repeated questions of “why?”; occasional anger, directed at me, which, fortunately, was fleeting, although, no doubt, real; hugs, lots of hugs.
The outcomes? Most of my patients agreed to stay with my current practice group, with the knowledge that I would continue, on request, to be involved in their care from afar (by phone); at least 2, and perhaps as many as 4, plan to fly to Georgia to continue their care with me; a handful of my long-term patients will get their care from other long-term HIV treaters in the area, a process that was individualized to meet the needs of each of them.
The lessons? Plan months in advance for “that day”; give the news in person; get “buy-in” from your employer, including giving plenty of advance notice of your intent to leave; get help and support from your colleagues, who will be the ones taking care of the majority of your patients; make sure that your patients can contact you, either directly or through your new practice; know that it is okay to show emotion and “break down the wall” that we often erect between ourselves as healthcare providers and our patients; realize that it can be good to reminisce about how much everything has changed in HIV care over the decades.
As for Amber, I promised to continue to give her tickets to Tigers games and be involved in her care from afar. She also made me promise that I would tell her next doctor that she needs to be included, as an active participant, in all discussions regarding her health care. As for others, I gave each of them my cell phone number, went to John’s retirement party, promised Scott and Sam that I would go golfing with them and buy them a beer when they next see me in Georgia (again, not their real names), and told everyone, doing my best to hold back the tears, how much of a privilege it has been to be involved in their care for such a long period of time.