Chances are that whatever your thoughts and reactions are to the recent Supreme Court decision on abortion, its impact on care for people with serious, advanced, or terminal illnesses may not be top of mind. I’m here to say, Watch this space. Definitions of life and the authority to direct its course affect the end of life as much as the beginning. The implications of Dodd v. Jackson’s Women’s Health Organization may be just as serious for palliative care as for reproductive care.
I’m not an attorney, so my reading of any court decision, law, or regulation is really for discussion only. I would love for my concerns to be groundless, and I look forward to comments from practicing lawyers to set me straight. But I think we are entering the part of the world map that once was labeled “Here there be dragons!”
Dodd, Roe, and Personal Autonomy
Much of the law – common, case, and statute; federal, state, and local – that we rely on to protect the rights of a person with decisional capacity to direct their medical care is founded in the same rights of privacy, due process, and personal agency on which the right to an abortion was based in Roe v. Wade and Casey v. Planned Parenthood—both overturned by Dodd.
In his majority opinion upending these decades-old decisions, Justice Alito notes that the Constitution “makes no express reference to a right to obtain an abortion” and that such a “right” is not “rooted in the Nation’s history and tradition.” Further, Justice Alito’s opinion takes direct aim at “the freedom to make ‘intimate and personal choices’ that are ‘central to personal dignity and autonomy’,” as cited in Casey v. Planned Parenthood.
In fairness, Justice Alito draws sharp lines around abortion as being distinct from any other “intimate and personal choice.” “Abortion,” Alito writes, “is different because it destroys what Roe termed ‘potential life’ and what the law challenged in this case calls an ‘unborn human being.’” He insists that “this decision concerns the constitutional right to abortion and no other right. Nothing in this opinion should be understood to cast doubt on precedents that do not concern abortion.”
Autonomous Medical Decision Making Suddenly Vulnerable
But many informed observers and commentators – including Joseph Fins, MD, MACP, FRCP – are not reassured. Writing for the Hastings Center, Dr. Fins recalls the Karen Ann Quinlan case of the 1970s, which established that personal wishes, known and expressed, could outweigh states’ interests in preserving life in the context of medical decision making. He notes, “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.” Anyone present for the “death panels” fracas a few years ago knows that the tinder is there for a spark to light.
That tinder is piled a little higher and dryer given Justice Thomas’s rejection of the tight focus on abortion in the Dodd ruling and his openly declared desire to overturn other decisions concerning contraception, gay intimacy, and gay marriage. If the autonomous decision of an adult to forestall pregnancy or love or marry the person they choose are in jeopardy, how is the autonomous decision of an adult to, say, refuse artificial nutrition and hydration not also at risk?
This risk is cast into yet higher relief by the past writings of Justice Neil Gorsuch. Famously opposed to medical aid in dying, Justice Gorsuch has cast doubt on a case concerning that very decision – Bouvia v. Superior Court – which affirmed the right of a disabled patient to refuse artificial nutrition and hydration even though such refusal would end her life. Gorsuch called such a decision “euthanasia by omission.” According to Dr. Fins, in other writings, Gorsuch also “questions surrogate decision-making for patients who have lost capacity.”
Dodd sends abortion back to the states for legislation and regulation. Alito specifically cites Washington v. Glucksberg a number of times in the Dodd opinion, seemingly as a model for how things ought to have been done, and now will be done, for abortion: That 1997 case challenged the constitutionality of Washington state’s prohibition of assisted suicide. Finding no “right to die” in the Constitution, the Court kicked determination of the status of assisted death back to the “laboratory of the states.” Over more than 20 years, this has resulted in a vast expenditure, state by state, of financial, political, and social capital to achieve a confusing crazy quilt of laws.
A Coming Heated Debate Over the Definition of Death
In the wake of Dodd, we can expect another state-by-state crazy quilt to emerge next year. The Uniform Definition of Death Act (UDDA) has been under review/revision since 2020; new wording and new model legislation is set to be sent to the states for debate and adoption starting in 2023. When the UDDA was first enacted in the 1980s – establishing a definition of death as EITHER irreversible cessation of heart and lung function OR cessation of entire brain, including brain stem, function – it caused little fanfare in the state assemblies, however hotly argued it might have been by the President’s Commission. In fairly short order, all 50 states plus Puerto Rico and Washington DC adopted the model law, verbatim, or with only minor tweaks.
We are living in very different times, and I worry about a new debate around the definition of death, and medical care at the end of life, ramping up in the current climate of uncivil discourse. The debate is likely to be just as overheated, just as emotional, just as ill- and uninformed as the debate on abortion has been. The UDDA debate, too, and the likely chaotic legislative response, will have real implications for serious illness care, organ transplantation, and autonomous and surrogate decision making at the end of life.
What Palliative Care Can – Must – Do
Given all this, it is incumbent on those of us in palliative care to be ready for assaults on or, worse, incremental erosion of patient rights. We must hold the line on the importance of patient autonomy and rights of decision making and bodily integrity, and resist any threatened return to paternalistic top-down constraints on the intimate and personal choices central to human dignity and determination.
If the ripple effect of the Dodd decision on abortion begins to disturb our placid pond, we must be fiercely clear about our commitment to ensuring that patients and their families are the ones deciding which medical treatments to accept, which to refuse, and what constitutes quality of life.
As the debate heats up – and it will – we need to raise our voices in whatever venue is likely to be most effective. When laws are proposed or regulations revisited, we must be in the legislative hearing rooms, at the town hall meetings, in the journalists’ “rolodexes,” and seated at the workgroup table. As the old saying goes, if you’re not at the table, you’re on the menu.
 DOBBS, STATE HEALTH OFFICER OF THE MISSISSIPPI DEPARTMENT OF HEALTH, ET AL. v. JACKSON WOMEN’S HEALTH ORGANIZATION ET AL. U.S. Supreme Court (2022).
 Dobbs v. Jackson Women’s Health Organization
 Sullivan, B., & Kim, J. (2022, Jun 24). These 3 Supreme Court decisions could be at risk after Roe v. Wade was overturned. NPR online. https://www.npr.org/2022/05/05/1096732347/roe-v-wade-implications-beyond-abortion. May, J. (2022, Jun 27). Justice Alito’s opinion on abortion: Not just the end of reproductive rights, but the downfall of fundamental civil liberties guaranteed by the Fourth Amendment to all Americans. Verdict online. https://verdict.justia.com/2022/06/27/justice-alitos-opinion-on-abortion-not-just-the-end-of-reproductive-rights-but-the-downfall-of-fundamental-civil-liberties-guaranteed-by-the-fourth-amendment-to-all-americans
 Fins, J. J. (2022, Jun 29). After Roe, what’s next for end-of-life care? The Hastings Center. https://www.thehastingscenter.org/after-roe-whats-next-for-end-of-life-care/
 WASHINGTON et al. v. GLUCKSBERG et al. U.S. Supreme Court (1997). https://supreme.justia.com/cases/federal/us/521/702/case.pdf
 Kovac, A. (2022, Jul 6). Inside the heated scientific debate to redefine who is dead. The Daily Beast. https://www.thedailybeast.com/inside-the-heated-scientific-debate-to-redefine-who-is-dead