“There will always be patients and families who are considered high maintenance, challenging, or both by health care providers. Among them are a few with evident mental illness, but most are simply trying their best to understand and manage their own or their loved ones’ illness. That we sometimes feel besieged or irritated by these advocates speaks to opportunities for improvement in both medical culture and the health care system.”
The above excerpt comes from a New England Journal of Medicine article written by Dr. Louise Aronson. I’ve written before about the idea of visceral bias – the emotional influence on our behavior when we perceive a patient is difficult, delicate, or special somehow – and its impact on medical decision making. Too often, patients who are considered to be difficult in some way are under-monitored, under-treated, and generally avoided by their caregivers. Chronic patients are trivialized as “frequent flyers” in emergency departments, while agitated patients are restrained either chemically or physically, often without consideration as to whether they might have an organic cause for their seemingly difficult behavior. This could be mental illness, or it might be simply hypoglycemia, hypoxia, or other hemostatic derangements. Students and new graduates are counseled to never ask of what crimes our incarcerated patients are convicted, in order that they would still give the same compassionate care as with any other patient.
For the record, I do not endorse the descriptions of high maintenance or difficult patients, but I do know that it is human nature for our feelings about other people to influence our interactions with them, no matter how hard we may try to overcome that tendency. As early as the days of Freud, it has been recognized that countertransference – the feelings the therapist has about the patient – can interfere with successful treatment. And, as I mentioned in the first paragraph, visceral bias is not always about bad feelings toward a patient. Sometimes, patients are perceived to be especially fragile or vulnerable, such as in the case of a violent assault victim, a scared child, or a mother suffering from a fetal demise. In other cases, patients are presumed to be of “VIP status” somehow, if they are famous or rich or otherwise well known to the caregivers. In all of these cases, our routine best care is sometimes disrupted by our own emotions, and can result in worse care instead of better care. You can check out a quick video on how this kind of thinking could result in medical error here.
Recently, a retired surgeon from Kansas told me a story about a patient who shared a double-occupancy room with a patient who was considered to be “high maintenance”. The “high maintenance” patient had the spot by the door, and the other patient (the real subject of this story) had the spot by the windows. Because caregivers had to interact in some way with the “difficult” patient in order to get to the other patient’s bedside, she reported that she was frequently skipped on rounds (she could hear the team discussing her case from the safety of the hallway), sometimes skipped for vital sign measurements and lab draws (she heard team members flat out lying to others and saying they had been unable to obtain the measurement, or the patient had been out of her room at the time), and had to request her scheduled medications more than once before a brave nurse would deliver. The surgeon and I had discussed the impact of visceral bias before, but we had never considered the impact of such bias on the “innocent bystander” – guilt by association, as he put it. Specifically, the patient said:
“When you are in a room (double occupancy) with a patient who the staff considers an intolerable, neurotic, hypochondriacal, demanding over-complainer (well-known to the staff from multiple admissions) then you yourself are doomed because the staff will not come into the room for fear of having to deal with the person.”
Have you, as a patient, ever felt that advocating for your own health has actually resulted in diminished care? As a caregiver, can you relate to the impulse to avoid “difficult patients”? Please leave a comment or email me.