Americans with health insurance are generally used to having open doors when it comes to medical care. Patients with terminal conditions often pursue treatment up until the very end — even when the benefits are negligible. But should that necessarily be the case?

Iplex vial from Insmed
Photo by Insmed

A recent New York Times article, “Fighting for a Last Chance at Life”, exemplified this issue. Iplex, an experimental drug developed to treat muscular dystrophy in children, was the last glimmer of hope for a group of patients suffering from Lou Gehrig’s disease (also known as A.L.S.). However, they had no scientific evidence to back up their hopes — anecdotal accounts of successful treatments were all they had to go on.

Iplex isn’t cheap. Even at $100,000 per year, the patients faithfully used Iplex as a last resort. While the patients in this case were taking the financial burden upon themselves, the situation still poses a question: in cases of terminal illness, at what point should treatent stop?

In a system where financial risk is spread across all participants, spending endlessly raises costs for everyone. Increased spending leads to higher premiums and fewer individuals being able to afford health insurance.

In the UK, the National Institute for Health and Clinical Excellence (NICE) uses the Quality Adjusted Life Year (QALY) to determine their spending limit. For example, if Iplex extended an A.L.S. patient’s life by 1 year (assuming 100% quality of life), the cost per QALY would be $100,000. NICE denies therapies that exceed a cost of £20,000-30,000 ($30,000-46,000) per QALY.

To make health care more accessible and affordable for the 45 million Americans without insurance, Congress will eventually have to find ways to control health care spending. But, even in a system wrought with runaway costs, at what point should spending stop?

Should insurers have to fund endless interventions up until death, should the terminally ill have to settle with palliative measures, or should they eventually have to take on the financial burden themselves? And who can even make that decision?