The decision to follow through with a plan of care is a big undertaking. It is often a huge ask for the patient and is what I often describe to patients as a dance where the steps and the music will change mid-pattern. It can be frustrating and emotionally taxing. I think we all have patients that do not want to follow through with a plan of care, but what do you do when a patient does not want to follow through with the plan, but still wants to come in for routine visits?
I have spent the last several months navigating such a relationship. This has happened before, but something about this patient has made me honestly ask: What keeps patients coming back, to go through the motions without actually trying to heal?
In my first clinic encounter with this patient, he was perched on the edge of the armchair, appearing uncomfortable but somehow also appearing unbothered. His breathing was labored, his abdomen tense under his T-shirt. I introduced myself and asked what brought him into the cardiology clinic today. He had been short of breath recently and was looking to find out what was going on. He had seen a cardiologist before but was somehow lost to follow-up. I quickly clicked on the “cardiology” tab in my EMR and brought up a litany of visits. My newly short-of-breath patient had an extremely poor ejection fraction and his last echo had been years ago.
I have come to see him regularly in the past few months. My interactions with him are similar each time, whether I am seeing him in the clinic or as an inpatient. He is unsure of his medications, seems to be ambivalent about steps he needs to take to stabilize his heart function, and appears to be used to being uncomfortable. He will disappear for weeks at a time, not showing up for the appointments with other specialists that he needs greatly as his heart continues to fail. When he is at our visits, he is blunt. He once told me, "I know I’m dying and I’m not afraid.”
And while he is very honest about not fearing death, he keeps coming back to me, and I'm not sure why. We end up seeing each other every few weeks, sometimes when he is scheduled or in the hospital. I've told him about what will happen, about the need for an implanted defibrillator, about how the blood flow to his brain would decline over time, and how the rest of his organs will suffer as his heart weakens. I did not share this in a “scared straight” way, but because I felt like maybe if we talked about what he can expect as his severe heart failure progresses unchecked he may feel differently about it, and possibly feel less ambivalent about his future health.
It didn’t benefit him much, because he still seemed to look at his disease process as something that was not a part of him, but rather something that was around, like a roommate. I can't help but wonder why he comes back to see me when he doesn’t appear to intend to follow through with any of the plans for his care that we make. I’m not sure if he keeps coming back because he feels like it is the right thing to do, or if he hopes that something will have changed each time.
As time wears on, I wonder if he really is OK with plugging along until he can’t anymore. I wonder if my services as a small community clinician are enough. I also wonder if he is as blunt with his mother as he was with me, and if so, how does she feel about it? As a mother myself, I’m not sure how I would feel. Probably dejected at best. If it were me with an ejection fraction as poor as his, I do suspect that I would keep coming back for a while, but if and when the options for treatment began to dwindle, I would escape to the south of France, with a pack of cigarettes, a case of champagne, and my family in tow. However, I have only conjecture to offer, which at this point does nothing.
I’m not sure what the right approach to this type of patient relationship is, so I guess I also am going through the motions at each visit. I don’t want to let him down; I don’t want him to feel unheard or left behind. I want somehow to go back in time and create another chance for him to have been more accepting of the care that he had in the beginning, before things got so bad.
Our days in training are crammed full of time talking about patient outcomes, ways to preserve function, ways to make care cost-effective. We talk about comfort care, palliation, and hospice. We talk about patients who will receive bad news and just never follow up again, choosing to control their health outcomes with avoidance. I don’t remember talking about what to do in this case though, and the weeks that I have spent writing this down have brought me no closer to an answer. I realize that I feel like a void is left when I sign my notes on our visits. Just once I want ask him: “Why do you keep coming back? Is what I have to offer not a viable option? Is there something else you would rather be doing?”
Is there a right thing to do when a patient is not interested in the plan of care but still wants to be your patient? Am I doing him a disservice by continuing to go through the motions? Possibly, but if being blunt with him is not enough to spur his interest in his health, I only stand to look like a jerk by asking him why he keeps coming back, and don’t see how this would be that helpful anyway. So the appointments continue, and even though this is very much real life, it continues in a way that lacks measurable utility. Despite my feeling that we are wasting the last bits of his time with insouciant pleasantries, this is the direction that we have taken. I guess going through the motions is enough for him and will have to be enough for me.
Blythe is a cardiology NP in the greater New Orleans area. Her special interests include improving social determinants of health in underserved communities and prevention of lateral violence in health care. She is a devoted mother, enjoying sewing and gardening in her spare time. She is a 2021–2022 Doximity Op-Med Fellow.
All names and identifying information have been modified to protect patient privacy.
Illustration by April Brust
