How Policy Shapes Practice and Choice
The patient is a 45-year old man. When I enter the room with the resident, he is sitting on the edge of the exam table, wearing a poorly-constructed hospital gown. When I introduce myself, he struggles to keep the paper garment tied around him, while extending his hand towards me. He is a pleasant man, in general, except for a lot of physical discomfort evident in his facial expressions.
The resident asks the patient about his symptoms. She asks about whether the medication is working for him. Whether he has experienced any body aches. Whether he can walk; go to work, etc. Are the skin and joints of his arms, legs, trunk, face, palms and soles healthy? And the list goes on forever.
He tells us that he has not been able to drive much or work, due to severe joint pain. He has stopped seeing his friends recently. His mood is low. He struggles to function in his normal routine, while experiencing constant pain. It is especially bad when he has flare-ups of his disease.
This patient has severe psoriasis. He also has depression, a commonly undiagnosed co-morbidity associated with this devastating autoimmune disease. He has had his disease since his early 20s. His initial presentation in the dermatology clinic marked the beginning of a battle involving his disease, his caregivers, and his insurance company.
His doctor had recommended several topical steroids, which failed. Then she had switched him to phototherapy, which also failed. Currently he has been using methotrexate, and it is failing him as well. Psoriasis commonly fails to respond to treatment, which is why there are a variety of options. But the interesting point in this case is that the doctor knew the patient would fail methotrexate. The patient knew this too. Yet the doctor prescribed it anyway because the insurance policy will not cover other options for treatment that would be more effective for this particular patient’s condition, until methotrexate has been tried and failed.
Later, she and I discussed this case. A great number of patients with moderate to severe plaque psoriasis, who have had their disease for many years without adequate response to other therapies, have been shown to significantly improve in response to ustekinumab, a biologic therapy [O’Neill, J. L., and Kalb, R. E., 2009, Ustekinumab in the therapy of chronic plaque psoriasis, Biologics: Targets and Therapies, v. 3, p. 159-168]. Biologically targeted therapy has shown greater efficacy than systemic and phototherapy in some patients. In this case, the doctor knows that this patient’s presentation, history and symptoms would suggest that he would respond best to ustekinumab. She also knows that she cannot prescribe that, until the insurance company has been satisfied.
It is a waste of time and resources, but unfortunately the protocol needs to be followed. While the doctor feels tied to the regulations of a third party, and the patient feels bound to whatever options are presented to him, the health care system loses too. It is a waste of additional appointment slots, lab tests, and administrative billing services. And, we are providing substandard care. Our system is failing this patient. Policies dictate the way doctors practice medicine and the choice patients are allowed to make.
I worked in the UK in an NHS-based system for a period of time. The combination of the National Health Service and UK’s welfare system means that the laws governing medical practice are very different there. We had a patient who presented to the outpatient psychiatry unit, which specializes in eating disorders. A 23-year old female (initially presenting at age 13), with a history of depression, sexual abuse, anorexia nervosa, and numerous medical complications stemming from her psychiatric illness: osteoporosis, urinary incontinence, amenorrhea, liver failure, and kidney failure to name the major ones.
Anorexia nervosa is a complicated disease to tackle, and this patient has been on the support of social services since age 12. Her disease prevented her from being able to study, work, or have a normal routine. After 6 years of ongoing therapy and numerous hospitalizations, she finally reached a stage where we could say that she is in “recovery.” Although one can never recover from an eating disorder, it is possible to keep the disease under control and restore patients to normal function.
She started to take part-time classes several months before I met her for the first time. And she had been steadily improving, with occasional lapses in her condition. For several months, the team of psychiatrists and nurses had been encouraging her to consider finding a part-time job. For some reason, each time this suggestion was seriously pursued, she became very resistant to treatment and suffered from sudden binging and purging episodes.
One day I was chitchatting with her in the patient lounge. She seemed hesitant to accept praise and encouragement regarding the “normal” part of her life (her routine of class work), and when probed further about what triggered her binging habit, she clammed up. I didn’t have much more to say to her and I was about to leave the room, when she blurted out the question pressing on her mind the most:
“Will I lose my disability benefits if I get a job? …Suppose I really start to get better, does that mean I won’t get that help?”
I was stumped. On one hand, it makes sense that if she were to reach the stage where her disease is under control and she is at a fully functioning level, she would no longer need to be on disability. On the other hand, who decides that point of recovery? The regulations governing this have a cutoff point, where if a patient begins to recover, there is the strong possibility that she will lose her benefits. Without that support, there is a strong possibility that she will quickly relapse, especially under such severe financial constraints.
I spoke to more experienced staff members about this and they expressed their disappointment at the failure to address this issue. By keeping patients financially constrained and incentivizing them to remain “unwell” (by the definition outlined in the regulation), again, it is the system that loses as a whole. Healthcare workers invest more time and money into care of patients who may be better managed in other ways. Patients start to lose their will to recover, something which is so important in all medical care, but especially so in psychiatric illnesses.
This raises concerns about how much choice knowledge-empowered patients really have, whether medical experts have much say in choosing and coordinating patient care and whether the doctor-patient collaboration, that is highly encouraged now, is really important or not. Our system wrongly places insurance companies and physicians (along with patients) on opposite ends of the table in this debate. Unless this paradoxical positioning of the key players in the healthcare debate is rectified, there is limited room for improvement.
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