Bioethics Forum Essay
After Roe, What’s Next for End-of-Life Care?
As concerning as the Supreme Court’s reversal of the constitutional right to abortion was in the Dobbs v. Jackson decision were the comments of Justice Clarence Thomas. In a concurring opinion he took aim at the unenumerated rights that protect decisional privacy in the most intimate of matters: birth control and how and whom we love. He wrote, “The harm caused by this Court’s forays into substantive due process remains immeasurable.” He concluded, “Substantiative due process conflicts with that textual command [the text of the Constitution] and has harmed our country in many ways. Accordingly, we should eliminate it from our jurisprudence at the earliest opportunity.”
The majority opinion disagreed and sought to distinguish other decisional privacy rights from abortion noting, “The exercise of the rights in Griswold, Eisenstadt, Lawrence, and Obergefell does not destroy a ‘potential life,’ but an abortion has that effect.” Nonetheless, commentators haven’t been reassured and the concern persists that the reversal of Roe is the beginning of an onslaught on our freedoms.
I want to add one more worry to the list and point to self-determination at life’s end. Here we have Justice Neil Gorsuch to worry about. Back in 2017, during his confirmation hearings, I wrote an essay for The Hill urging senators to ask him about end-of-life care and the right to refuse life-sustaining therapy. As might be expected, the focus of the hearings was on his views about abortion. But he had authored a book entitled The Future of Assisted Suicide in Euthanasia, raising questions about his views on choice at the end of life.
As I recall only Senator Diane Feinstein questioned Gorsuch about his views on “death with dignity.” She said, “You make the statement that there is no justification for having anything to do with the end of some’s life, encouraging the end of life.” Gorsuch replied by invoking the memory of his father: “And I’ve been there with my dad and others. At some point, you want to be left alone. ‘Enough with the poking and the prodding. I want to go home and die in my own bed, in the arms of my family.’” It was an emotional and reassuring moment for those who want to maintain choice at the end of life.
Feinstein pressed Gorsuch: “Supposing you cannot handle the pain and you know that it’s irreconcilable?” Again, Gorsuch’s testimony was reassuring: “Senator, the position I took on that in the book was anything necessary to alleviate pain would be appropriate and acceptable, even if it caused death . . . not intentionally, but knowingly. I drew a line between intent and knowingly. I’ve been there. I’ve been there.”
In personalizing the response, Gorsuch gained sympathy in the room, and this line of questioning was abandoned. But it is a conversation that needs to be revived. In the wake of Dobbs, it is important to consider how Gorsuch’s judicial philosophy might be expressed in a case that came before the court that contested a patient or a family’s right to make end-of-life decisions by alleging that these established choices were akin to assisted suicide.
As I re-watched Justice Gorsuch’s testimony before the Senate Judiciary Committee I became more concerned about the personal nature of his responses to Senator Feinstein. His replies were not conceptual articulations of the legal right to privacy that undergirds end-of-life care; rather, they were anecdotal and evasive. They should provide as much reassurance as the “settled law” responses that all three Supreme Court justices nominated by Trump gave when asked about the precedent established by Roe.
One would think that this is settled law in the wake of Quinlan, Cruzan, and Quill v. Vacco, that stare decisis would argue against the erosion of rights that date back five decades. But Roe and Quinlan were products of the same era. Both prized autonomy and dominion over life’s most important choices. And now that Roe has been overturned, other well-established precedents that rely on the logic that informed that decision, including those that govern decisions at life’s end, could be vulnerable.
My concerns about Justice Gorsuch are laid out in The Future of Assisted Suicide and Euthanasia. While most of the volume makes the case against assisted suicide and euthanasia, his argumentation seems to equate killing with letting die. This would undermine the right of patients and families to withhold or withdraw life-sustaining therapy. Two examples are very concerning. Writing of a case from Britain, he questions a ruling in which “the court seemed to assume that a competent patient has a right to refuse care, even if in doing so it might evince an intent to die.” He also referred to Bouvia v. Superior Courtas “euthanasia by omission.” That case centered on the rights of a competent patient to refuse artificial nutrition and hydration. Elsewhere he questions surrogate decision-making for patients who have lost capacity.
The challenge here is intent, and that can sometimes be in the eyes of the beholder. While Justice Gorsuch might endorse “enough with the poking and prodding,” what if those disruptions could save a life? Would ceasing to poke and prod “evince an intent to die”? And who gets to make that determination–the patient and their family or an emboldened conservative majority on the Supreme Court?
As America prepares for the further erosion of reproductive rights and marriage equality, the views of Justice Gorsuch bear close scrutiny. The final chapter of his book on assisted suicide and euthanasia warrants a careful read, starting with its title, “Towards a Consistent End-of-Life Ethics: The ‘Right to Refuse’ Care for Competent and Incompetent Patients.” Placing a right to refuse in quotations is particularly worrisome for someone who also calls for respect of the “inviolability of human life principle.”
That principle has been the alpha and omega of this court. What began at the beginning of life could well affect how we die. It would be naive to think otherwise.
Joseph J. Fins, M.D., M.A.C.P., F.R.C.P., is the E. William Davis Jr. M.D. Professor of Medical Ethics, a Professor of Medicine and chief of the division of medical ethics at Weill Cornell Medical College, Solomon Center Distinguished Scholar in Medicine, Bioethics and the Law and a Visiting Professor of Law at Yale Law School and a member of the Adjunct Faculty at the Rockefeller University. He is a Hastings Center fellow and member of the Center’s board of trustees.
Roe v Wade being overturned has already started to affect multiple lives, especially in the states where this has affected healthcare professionals’ decisions and work ethics. I completely agree that this is just the first step to opening up multiple setbacks in America’s healthcare advances, such as in reproductive rights (access to birth control) and due to the continuation of allowing end-of-life care. Currently, there are only 11 states that allow for end-of-life care: California, Colorado, the District of Columbia, Hawaii, Montana, Maine, New Jersey, New Mexico, Oregon, Vermont, and Washington, not only do we already have less than 10% of the country providing access to the patient and family involved in the process, now we have a setback of 50 years in progress. While reading Gorsuch’s book and stated by you that the final chapter of Gorsuch’s book on assisted suicide and euthanasia warrants a careful read, starting with its title, “Towards a Consistent End-of-Life Ethics: The ‘Right to Refuse’ Care for Competent and Incompetent Patients.” Placing a right to refuse in quotations is particularly worrisome for someone who also calls for respect for the “inviolability of human life principle.” I wonder what will happen within the following months, in regards to regulation. If the care of ectopic pregnancies are already at risk, I wonder what role will medical aid in dying play and how physicians and healthcare providers be affected.
Dr. Fins provides an excellent analysis of the issues at stake. One cannot take comfort in the principle of stare decisis any longer. One has to wonder if it might be time to begin a movement for an amendment to the constitution that specifically enshrines various liberties that we have come to think of as entailed by a right to privacy.