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 on the paper garment while extending his hand towards mine. He is a pleasant man, overall, except for a lot of physical discomfort evident in his facial expressions.
The resident asks the patient about his symptoms. She asks whether the medication is working for him. Whether he has experienced aches. Whether he can walk, go to work. Whether the skin and joints of his arms, legs, trunk, face, palms, soles are healthy. The list goes on and on.
He tells us that, due to severe joint pain, he has not been able to drive much or work,. 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 to the dermatology clinic marked the beginning of a battle involving his disease, his caregivers and his insurance company.
His doctor has recommended several topical steroids, which failed. She then switched him to phototherapy, which also failed. Currently he has been using methotrexate, and it is failing as well. The interesting point in this case is that the doctor knew the patient would fail methotrexate. The patient knew this too. She prescribed it because the insurance policy will not cover any other treatments until methotrexate had 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. Biologic targeted therapy has shown greater efficacy than systemic and phototherapy in some patients. In this case, the doctor knew that based on this patient’s presentation, history and symptoms, he would respond best to ustekinumab. She also knew that she could not prescribe it until the insurance company had been satisfied by trials of other treatments. It is a waste of time and resources, but unfortunately the protocol needs to be followed. When a doctor feels tied to the regulations of a third party, and the patient is bound to non-ideal treatment options, the health care system loses too. It is a waste of additional appointment slots, lab tests and administrative billing services.
And perhaps, we are providing substandard care. Our system is failing this patient. Policies are dictating the way doctors practice medicine and the choices patients are allowed to make.
I worked in the United Kingdom in an NHS-based system for a period of time. The combination of the National Health Service and the United Kingdom’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 specialized in eating disorders. She was 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. Her other medical problems included osteoporosis, urinary incontinence, amenorrhea, liver failure and kidney failure.
Anorexia nervosa is a complicated disease to tackle, and this patient had been supported by social services since age 12. Her disease prevented her from being able to study, work or have a normal routine. After six years of ongoing therapy and numerous hospitalizations, she finally reached a stage where we could say that she was in “recovery.” Although one can never fully 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. 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, the patient became resistant to treatment and suffered from sudden binging and purging episodes.
One day I was chatting 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 became silent. As 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 that I need?”
I was stumped. On the one hand, it makes sense that if she were to reach the stage where her disease was under control and she was fully functional, she would no longer need to be on disability. On the other hand, who decides that point of recovery? The governing regulations have a cutoff point, where if a patient begins to recover, there is the strong possibility that she would immediately lose her benefits. However, without that extra 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 system’s 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. Health care 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 crucial in all medical care, but especially so in psychiatric illnesses.
These stories raise concerns about how much choice knowledge-empowered patients really have, and how much say medical experts have in choosing and coordinating patient care. Unless this paradoxical positioning of the key players in the health care debate is rectified, there is limited room for improvement.
Contributing Writer Emeritus
Tufts University School of Medicine
Manasa graduated from Brandeis University with a BA in biology, and from Tufts University School of Medicine with a dual degree in medicine and business. When not practicing medicine, she loves to travel, read, and write.