When it comes to managing a severe chronic disease, how far should doctors push patients? | Expert Opinion

I was taken aback when a new patient showed me the fistfuls of paper towels he wedged into his underwear each day to absorb the pus draining from small openings across his groin. He had been doing this for years.

My patient, who was in his 20s, was living with a severe form of a difficult-to-treat disease called hidradenitis suppurativa (HS). It’s a chronic inflammatory condition that targets the folds of the body, especially in the buttocks, groin, and armpits, excavating little connections under the skin called sinus tracts and fistulas. These fill with fluid, become tender, and drain pus for days, weeks, even months or years.

Though HS is not life-threatening, it can cause debilitating pain and is strongly linked to depression and poor quality of life. People with HS can have trouble forming intimate relationships. The disease often causes its embarrassed sufferers to hide from the world.

The pain was making my patient’s work as a baggage handler challenging. At home, he was becoming more dependent on his mother to take care of him. Even sitting down could be excruciating.

After a few months of standard treatment, I put him on a more aggressive regimen of an infusion medication (infliximab, brand name Remicade) and later added an oral medication (methotrexate), both immunosuppressive drugs. His disease had improved about 80%, by his estimation, but the progress had plateaued. I wanted him to think about changing his medications to control his disease more completely, but he was hesitant to push further.

As a dermatologist who has treated dozens of patients with HS, I know that even when a particular medication works, it often feels more like luck than anything else. Sometimes in medicine, a complete resolution is just not possible and any appreciable improvement may be the focus. To some patients, 80% is good enough, but I thought it was strange how easily he accepted his condition with the remaining 20% not addressed.

Despite the effectiveness of his infusions, given the plateau, I encouraged him to try switching to a different injected medication (adalimumab, brand name Humira) that has proven useful for many HS patients.

After I convinced my patient to try the new treatment, he had to stop the previous one that merely got him to 80%. Unfortunately, not long after this change, he experienced a bad flare-up. He ended up with large wounds in his armpits and buttocks that kept him bed bound for months and took more than a year to heal. Though flares are common and this one was not necessarily caused by the new therapy, I felt intensely guilty for having pushed him to try it. Now that he was down to 20% control, I would’ve done anything to get him back to 80%.

If he were happy, even with his disease only stable but persistent, who was I to impose or suggest additional treatment? Worse, had I risked losing his trust in my care?

My patient is now stable on his original infliximab infusion therapy, but his HS still flares now and then. Yet he rarely grumbles. When I examine him at checkups, I still may find paper towels packed in his underwear, but he insists he is doing just fine.

What drove me to keep pushing is imagining what I would want if I were in his position. But maybe that’s my mistake. We all know about the Golden Rule: Do unto others as you would have them do unto you. But perhaps I should be following the Platinum Rule, conceived by Tony Alessandra, the prolific author and business leadership expert: “Treat others the way they want to be treated.”

Maybe the Platinum Rule should be the guiding principle in medicine — or at least my guiding principle.

My patient’s care is likely to remain challenging for years to come. I hope he knows I’ll stick with him, and advocate on his behalf. But I also hope I can remember to check myself when I can’t help but want to get him to 90% and to respect his autonomy. I must wield his confidence in me carefully, and only recommend what truly fits his goals.

I want him to live the life he wants and respect his judgment. If 80% better is good enough for him, it should be good enough for me.

Jules Lipoff is an assistant professor of dermatology at the University of Pennsylvania Perelman School of Medicine.