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Experience July/August 2023

Death and Taxes: At Least One Is Certain

Christina Woodward Strong


  • The moment death legally occurs is still in debate.
  • It's difficult to balance the patient’s autonomy and dignity to have end-of-life care with the family’s or the state’s interest in protecting life.
  • There's a need for these laws to be standarized, accepted, and uniformally applied among different jurisdictions.
Death and Taxes: At Least One Is Certain
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We’ve all heard that there are only two certainties in life: Death and taxes.

Still, just as artisans of tax law may succeed in helping their clients avoid the brunt of the latter, heroic healers and medical technology have combined forces to hinder and delay, and sometimes even avoid, death. The current clinical reality surrounding death’s diagnosis is sparking a discussion of how the law reflects or defines death.

As a health lawyer whose practice focuses on end-of-life care and anatomical gifting, and for my brothers and sisters in the law who practice estate law, civil litigation, and criminal prosecution, death is a sine qua non—the jumping-off point for all that comes next. Without a death, there’s no gift of a transplantable heart; no estate to haggle over; and no wrongful death, homicide, or manslaughter to pay for or prosecute.

Getting death right is almost as important to our system of laws as it is to our health care system. And at present, the importance of the topic seems to be the only thing doctors, lawyers, judges, bioethicists, and patient advocates can agree on.

The early legal landscape

The Uniform Determination of Death Act was originally promulgated in 1980 by the National Council of Commissioners on Uniform State Laws, now referred to as the ULC. Even then, the UDDA was playing catch-up to technology. Technology allows for the maintenance of breath and circulation even as it enables physicians to diagnose the end of brain function.

It’s well established that, when the brain has been severely injured and machine-supported circulation and respiration can’t return the human brain to a functioning state, the individual has died.

Similarly, if a person permanently ceases to have spontaneous circulation and breathing, they’ve died. Hence, the UDDA recognized two different ways to determine that death has occurred: “The irreversible cessation of all functioning of the brain, including the brain stem” and “the irreversible cessation of circulatory and respiratory functions.”

In 1980, the ULC expressed confidence that the new UDDA “recognize[d] cardiorespiratory and brain death in accordance with criteria the medical profession universally accepts.” Indeed, by 1980, mechanical ventilation had been widely available for 30 years, and the practice of recovering life-saving transplantable organs from neurologically dead patients was well underway.

Patients gain control

Since the 1980s, advances in understanding of the dying process, aided by better diagnostic technology, fueled a patient-led movement advocating for the rights of patients to direct their own end-of-life care. The focus for the majority of patients became the ability to refuse mechanical support of breathing when there was no reasonable hope of recovery, consciousness, or survival.

Decisions such as New Jersey’s Matter of Jobes [] and In re Quinlan [] and laws such as the ULC’s Health Care Decisions Act [] allowed patients and their surrogates to choose not to sustain function.

In effect, patients are allowed to state that, based on their decision or the futility of further treatment, their death could be declared by a permanent cessation, not necessarily irreversible cessation. In other words, even though breathing and circulation could be sustained by machine, it wouldn’t be, at the physician’s advice and the patient’s direction. Hence, the UDDA term irreversible was being routinely interpreted by clinicians as permanent.

In a similar manner, the UDDA language requiring that “all functioning of the brain, including the brain stem” irreversibly cease may not have taken into account new learning about the ability of the hypothalamus to have some level of function in an otherwise deceased body when circulation is being artificially maintained.

Difficult questions are being debated

The ULC has been engaged in an effort to study and draft an updated UDDA for three years. Not surprisingly, given our country’s polarized policy debates, distinct viewpoints have been debated, including whether permanent loss of consciousness can be measured or predicted or whether consciousness should matter at all in determining death.

Questions have been raised on patients’ autonomy, whether either patients or their family should be permitted, or even required, to maintain circulation indefinitely, in the face of a complete absence of clinical hope of recovery, because arguably the irreversible standard may not have been met.

A thorny challenge implicated by these discussions is the question of resources. Who’ll bear financial responsibility if the issue of whether a patient is dead is left entirely, and in the long term, to patients and their families, rather than a definitive clinical diagnosis?

Asked another way, who’s charged with the care of the mechanically supported never-to-be conscious patient? Does the patient’s interest in autonomy and dignity outweigh the family’s or the state’s interest in protecting life? And finally, what choices may have to be made between the support of this human’s body versus the support of a patient whose recovery is obviously indicated?

These are topics most of us would prefer to avoid. They’re also ones that are inescapably implicated by the discussions surrounding revisions to the UDDA.

Standards needed, THEN evenly applied

In addition to the consideration of substantive revisions to the UDDA’s existing text, some are discussing statutory mandates on the timing and nature of physicians’ communication about the brain death exam. They’d perhaps even allow patients’ families to block the diagnosis of death based on a moral objection to brain death.

This train of thought strays into so-called death-adjacent territory, such as statutorily directing who may gather at the bedside of the newly deceased and for how long. That’s an area that has long been decided by families and hospital pastoral care, palliative care professionals, social workers, and grief specialists. Those individuals’ case-by-case compassion and expertise outstrips the judgment even of state legislatures. But there are those who wish to make these areas subject to state mandate.

No matter how disposed we are to handing the responsibility for clinical and sensitive medical decision-making to legislators, however, most people would agree that death should be even more certain than taxes. It’s even more crucial that any legal standard be accepted, uniform, and evenly applied. The same patient shouldn’t be deemed legally dead in Kentucky but alive (and receiving benefits) in New Mexico. And this determination should certainly not be impacted by any ability to pay for care or the beliefs of anyone but the patient.

Regardless of our beliefs about what may or may not happen for patients after life, death of a generous organ donor does mean life to a person awaiting a transplanted heart, liver, or lung. The public trust that this gift happens only at the death of the donor is key to our nation’s world-leading system of donation and transplant. For this reason, too, the impact of our legislative decision making on this topic is, literally, life or death.