The Unfortunate Side Effect of Death

Peggy was in her early 70s and suffered from a terrible lung disease known as pulmonary hypertension. Her case was so bad that she had a pump infusing a medicine under her skin 24 hours a day to keep the blood supply to her lungs open. Once started, this medicine, treprostinil, was known to improve life in those with pulmonary hypertension. Unfortunately, like all continuous infusion medicines of this type, it has the unfortunate side effect of sudden death if stopped for more than 4 hours. Starting it was a difficult choice for Peggy and her expert team of physicians, but her disease had progressed to a point where it was the right decision. As you can imagine, this drug was mighty expensive. We would only find out how expensive later.

On the day that I met Peggy, she was being admitted to the Intensive Care Unit (ICU) not for her pulmonary hypertension, but because she had a bleed in her stomach, which caused her to swallow blood/stomach contents into her already damaged lungs. Once stabilized, our first challenge was to ensure that she continued on the treprostinil. It took a little magic from pharmacy and the drug’s manufacturer, but we were able to get everything together and Peggy was no worse for the wear.

A few days later Peggy was improving, breathing tube out and awake and back to herself. Due to the special nursing needs with treprostinil, Peggy was required to be in the Cardiac Care Unit (CCU), a special type of (ICU), despite her progress. Even though Peggy managed this medicine at home by herself, hospital policy prevented her from transitioning out of the ICU to the general medical floor, at a fraction of the cost. Conceding that point, the decision was made to try and transition Peggy directly to Rehab. But her progress was stalled for one simple reason: treprostinil.

It turns out that if Peggy were to go to a rehab, they have to pay for her medications out of the money they receive to care for her. As it turns out, treprostinil costs $1400 per day. $1400. Now, Peggy does not pay that amount, she has a special arrangement worked out with the company and the state. But in order to make that arrangement work, the company charges full freight for the drug when the patient is institutionalized. Since the drug cost alone would wipe out payment for her stay, no rehab would accept her. So Peggy was stuck in the hospital, and stuck in one of the most specialized and expensive beds in the hospital in the CCU.

Think about that for a moment. A critical care bed was tied up for days for a patient that was well enough to leave the hospital, just not ready to go home. Arbitrage was suggested—would it not make more sense for our hospital to buy the drug for her at rehab, freeing up the CCU bed (which costs far more than daily dose of treprostinil). But we are doctors, not financial engineers. We work in the world of medicines and were unable to orchestrate such an unusual arrangement. So we did the only thing we know how to do. We stopped the expensive medicine.
This was not a financial decision. Peggy had been describing vague body pain, a known side effect of all prostaglandin medicines. Think of treprostinil as a 24-hour infusion of anti-Ibuprofen. Her breathing was actually quite good despite her recent trials in the hospital, so stopping the medicine made medical sense. We monitored her closely during the transition and she quickly improved! She was able to move around more and started on recovery. She was transitioned to a rehab shortly thereafter and continued to improve.

My colleagues’ decision to stop treprostinil was a medical one. But ironically, we would not have considered it if were not for the cost factor of the medicine. Peggy would have gone on for some time on an expensive medicine that was not helping her. At the same time, it was through one party’s insane attempt to “control costs” that simply caused costs to be shifted and multiplied. The entire health care system spent much more on Peggy’s care because no one had the vision or authority to deal with $1400 a day. Pennies compared to the amount wasted, and nothing compared to the risk undertaken by Peggy and her family during this trying time.

Andrew Schutzbank is a physician in Boston and was among the winners of the 2011 Costs of Care Essay Contest, where this anecdote first appeared.