Wishes at the end of life: comparing the right to try and right to die

By Oliver Kim

After an initial procedural hiccup, the House of Representatives passed a modified version of a federal “right to try” bill, legislation that would allow pharmaceutical companies to bypass the federally-prescribed clinical trial process to allow terminally ill patients to try experimental drugs. Similar legislation passed the Senate as part of a horse-trade in order to allow the swift passage of the FDA user fee reauthorization before that program expired. A majority of the states have passed right-to-try legislation, which is largely ineffective given federal preemption.

Much has been written about the ethical and legal questions surrounding the right to try as well as the political forces behind it. Proponents argue that the right to try is based on notions of mercy, compassion, and autonomy.

What has interested me about this debate is that often those same notions are used to justify the “right to die,” or aid in dying usually for terminally ill patients. I’ve written (and will be publishing a longer piece) and will be speaking about this question and if there are lessons that proponents of the right to die can learn from the political success of the right-to-try movement.

I also am interested in the possible legal questions if a new federal scheme is set up for those terminally ill patients wanting to take experimental drugs outside of the FDA’s compassionate use program. In Vacco v. Quill, the Supreme Court held that there was no equal protection violation when a state distinguished between terminally ill patients that refused medical treatment with those that want to physician aid in dying. The Court noted these situations were different because “when a patient refuses life-sustaining medical treatment, he dies from an underlying fatal disease or pathology; but if a patient ingests lethal medication prescribed by a physician, he is killed by that medication.” A patient’s intent for rejecting treatment may be very different from someone seeking aid in dying. Thus, the state’s ban on assisted suicide was did not violate the Equal Protection clause, and such bans exist now in many states and at the federal level.

But here, the states and potentially Congress are creating a right for certain patients to take certain drugs but only for prescribed reasons: to extend life potentially. That is a very powerful argument, particularly for someone with a terminal illness. But it is more than distinguishing between refusing medical treatment and wanting to die—it is saying someone can receive drugs (although experimental and not FDA-approved) in hopes of one outcome but not receive drugs with the intent of dying (clearly outside the drug’s approved use). Something feels “unequal” in allowing some terminally ill patients to choose one path but not the other although it’s still possible to argue a Quill distinction between the two.

While there is some indication of renewed efforts to pass medical-aid-in-dying laws among the states, one wonders if the right to try movement will aid these efforts, either politically or legally. After all, as one California proponent of the right to try argued, if a state allowed the right to die, it should allow the right to try. Wouldn’t the opposite be true as well?

Oliver Kim

Oliver is an adjunct professor with the University of Pittsburgh School of Law and a policy consultant in Washington, DC. He has over fifteen years of federal and state legislative and policy experience, including serving for eight years as a senior advisor to Senator Debbie Stabenow (D-MI) and two as deputy director for the Special Committee on Aging under Chairman Bill Nelson (D-FL). He was selected for the Woodrow Wilson foreign policy fellowship, the AcademyHealth Health Policy in Action award, the Hartford Foundation Change AGEnt program, and the American Council of Young Political Leaders’ international exchange program. He received his BA from Indiana University, JD from University of Minnesota, and LLM from the Georgetown University Law Center.

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