"Does there have to be someone watching me?"
Paula had asked the question as I was examining her. She was referring to the woman sitting in her hospital room, a "sitter." Paula had been in the hospital for days with a skin infection that was not healing. Earlier that morning, her nurse noticed a few pills covered underneath Paula's bed sheets. Nurses didn't give extra pills to patients. And patients were supposed to take pills only when nurses gave them.
So when the nurse found extra pills in Paula's room, she assumed something was wrong and brought it up during morning rounds. We talked about how her infection had not improved, even after days of prescribing her antibiotics. We talked about her previous lengthy hospitalizations for different infections. We talked about how distant she had been from her doctors and nurses for the past few days.
We suspected that Paula was intentionally not taking her pills.
We had security search Paula's room, where they found several pills -- including the antibiotics -- which she had presumably not been taking. Paula denied hiding the pills. Nevertheless, we asked a sitter, a paid hospital employee whose job it was to observe patients, to remain in her room to make sure Paula took her pills.
Paula detested the sitter. And, by extension, she detested the medical team that ordered the sitter.
"It's like you guys don't trust me to take care of myself!" she exclaimed, tears running down her face. The fact was, we didn't.
Both doctors and patients struggle when patient autonomy clashes with physician paternalism, when "the patient is always right" runs into "it's for your own good." Paternalism in medicine implies that someone in a position of authority restricts someone else's autonomy for his or her best interest.
By that definition, doctors are frequently paternalistic. A surgeon won't ask a patient's permission to do a life-saving emergency procedure. Many physicians don't tell patients each and every blood test they are checking. The psychiatrist is obligated to hospitalize a suicidal patient against his or her will.
Published surveys indicate that many patients prefer a paternalistic, "doctor says, patient does," relationship. Older, less-educated, and male patients are more likely to prefer doctor-patient paternalism. This relationship sometimes makes things easier for the doctor and patient.
Not for Paula. Our desire to improve her health forced us to use a sitter -- something that she hated. Her infection improved when we made sure she actually took her antibiotic. However, every day she asked when we would remove the sitter. She refused to participate with the physical therapists that visited her daily. At least once a day she threatened, "If you're going to keep someone in here all the time, then I'm just going to leave!"
Paternalism was winning the battle but losing the war. We felt that Paula needed the sitter because without it, she wouldn't take her treatment and her infection would spread. Paula, on the other hand, felt that we were not respecting the privacy that she deserved in the hospital. With each passing interaction, Paula further distrusted her medical team -- and the health system in general. This can have long-term consequences: One study published in 2006 in the Journal of General Internal Medicine showed that patients who distrust the health system have worse health outcomes.
As Paula's physician, I could have done several things differently. Perhaps instead of imposing a sitter on Paula, I could have had an honest discussion with her beforehand about our reasons for recommending the sitter, including that we thought she was hiding her pills. I might have asked her family member or primary care doctor to speak with her to uncover her reasons for not taking her pills. Maybe I could have given her medications in a way that didn't require a sitter to watch her constantly. There is evidence to suggest that such strategies work, even in patients with a possible mental illness.
Rather than putting the onus on individual physicians, however, some health systems are taking it upon themselves to reduce paternalism in health care and prevent its consequences. Dartmouth-Hitchcock Medical Center and other hospitals have implemented pilot programs to directly involve patients in treatment decisions. At Dartmouth, patients take surveys that assess their knowledge and goals of care before they see their doctor. That way, the doctor knows what the patient wants and can incorporate it into a treatment plan, and the patient makes sure his or her voice is heard. The Center for Medicare and Medicaid Innovation is also testing models that partly base physician payments on how well patients understand and accept their care.
After days of making sure she took her pills, Paula's infection resolved and she was discharged from the hospital. She never admitted to not taking her antibiotics or otherwise intentionally harming herself. I am not sure whether she has followed up with a physician since.
The paternalistic relationship might be right for some doctors and patients. For Paula, however, I don't think it was. I hope that she finds a doctor with whom she can establish a different relationship, more collaborative and less unilateral. Maybe then she could regain the trust that she has lost in her medical care and get the care she needs, and wants. That would be for Paula's -- and her doctors' -- own good.
"Does there have to be someone watching me?"