Redefining death may end treatment for brain-damaged patients.

In ⁣2013, the world watched ⁢as the family of Jahi McMath fought her physicians to continue mechanical ventilation after she’d been declared “brain dead.” Her family was able to secure her release only after ⁤agreeing to the declaration of death, and they ⁢moved her ⁤to a​ long-term‌ care facility, and eventually an apartment, in the state of ⁤New Jersey. She lived for another five years, ultimately ‌passing away in June 2018.

Complex Decisions and Legal Designations

One of the most complex decisions⁢ a family will make⁣ is⁤ to remove life support when someone they ‍love has suffered a tragic accident. When faced with these situations, medical professionals are in a unique position to⁤ provide guidance regarding how ‍end-of-life care should proceed. Most of the time, families and doctors concur when the right time has​ come to remove⁢ mechanical ventilation, and a loved one ​dies​ peacefully. But occasionally a dispute arises, like in the case of ‌McMath, and the courts become involved.

Part of ‌the reason for ‍this involvement is because “brain death” is not⁣ a ⁣medical designation, ⁢but a‍ legal one.

To bridge ‌the gap between ‍medical ⁤discrepancies, the Uniform‌ Law Commission is considering ‍an ​ updated version of the Uniform​ Determination of ⁣Death ‌Act (UDDA) — ‌the⁢ RUDDA ⁤—⁣ which it hopes will align U.S. standards with those of other nations. These standards are also meant to be adopted across ⁤state ‌lines, bringing all states in accord regarding what constitutes ​legal, neurological death.

In 1981 the UDDA was passed in response to evolving medical advances,⁣ particularly mechanical ventilation. Our⁣ new ability to renew‌ the respiration of a dying person was miraculous, but‌ it also created a⁤ conundrum: Previously, death was determined by the cessation of a heartbeat and breathing.‌ Mechanical ventilation disrupted this process and left clinicians with moral and ethical questions regarding how to confirm their patients’ ⁤deaths.

If doctors could ⁤not‌ determine death based on ⁢lack of cardio-respiratory arrest, patients could linger unresponsive for years in a⁣ hospital bed, loved ones couldn’t begin the grieving process, inheritances⁢ could not be distributed, and — in ⁢a situation where violence had occurred — justice for a loss of ⁢life could not be sought. In addition to ⁢questions about a patient’s care, mechanical ventilation⁤ could limit ​the donation of healthy organs for transplant — a novel ‍but important possibility at the time.

Challenges and Controversies

A ​new criterion for determining when death occurred was pragmatic. It would protect physicians from criminal charges and/or malpractice suits⁤ and⁢ seemed to ‍be⁢ in the best interests of both the patients and their families.

Except it may not ‍have ​been then and‌ may not be ​now.

There was immediate opposition to the guidelines from many doctors, who correctly surmised that “brain death” didn’t ⁣always mean “biological death.” There were (and still are) valid concerns that at least one step in the process⁣ of determining whether brain death has occurred ⁤— the apnea test — could lead to “irreversible brain damage” in a person who could be capable of some recovery. ⁢There are also concerns regarding the criteria disregarding some brain functions. Most initial opposition, however, stayed‍ in academic⁣ circles,​ and overall “brain death” became a socially acceptable concept.

As time⁤ has passed and‍ the general population has ‍found‌ complex​ medical ‌information more accessible, families have begun to push back and request treatment for their seemingly dead relatives.

In at least one case — that‍ of Jahi McMath — pushback displayed the problems inherent with the concept of “brain‌ death,” as McMath was clearly ⁢not dead ​and continued to grow and mature over time,⁢ even going through puberty and having⁣ menstrual ‍cycles.

Between her discharge from the hospital in ⁣2013 (where she ‍was declared ​“brain dead”⁣ and a death certificate was issued), and the actual end of her life in 2018, video evidence unequivocally proved she could hear those around her, responding to simple directions ⁢to move her fingers, hands, ‌and‍ legs.

In other cases,⁤ patients who have been declared “brain dead” have⁢ awoken ​from comas days before organ harvesting was⁢ to occur, or even in⁢ the operating room as organ procurement was about ‌to begin.

In ‍these cases, ​medical ‌consensus claims that common protocols to determine brain⁢ death were not followed, resulting in mistakes. This discrepancy could be due​ to the UDDA being a federally created legal parameter for death, which⁤ differs from one state to the next and across ⁣international borders. These discrepancies ⁣support the perception that ​a designation of “brain death” is⁣ arbitrary: ⁤If a‍ doctor in ⁢New Jersey says a person ⁢is alive, but a doctor in California says the same person is dead,⁢ who⁤ is correct? And why ⁤should we trust medical professionals with something this important when they can’t even trust one another?

Proposed Changes and Concerns

The authors of the new​ RUDDA standards ​have proposed the following reasons for the changes:

1. To make it more difficult for families, especially families ⁤of minor children, to file suit against hospitals attempting to remove‌ their children’s‌ life support.
2. To free up hospital beds and other​ medical ⁣resources.
3. To make available more organs for harvesting‌ and donation.

In other words: The authors of this revision are suggesting physicians should be able to override parents’ desires for medical‍ care, ration treatment and hospital beds (a gift to insurance ⁤companies), and end people’s lives⁢ more‍ quickly to increase the ‍supply of organs for⁢ donation.

To accomplish these goals, the specific changes‍ suggested⁤ will loosen current guidelines, requiring only ‍brain stem injury, ⁣rather than whole-brain death.⁢ It excludes ​certain brain functions ⁤from being considered evidence of life.

Also included ⁤in the draft⁢ language is a change⁣ from “irreversible” damage to “permanent” damage. The​ international chair of the Euthanasia Prevention Coalition, Alex Schadenberg,⁤ clarifies in ⁢ a recent blog post the danger of⁣ this interpretation of⁣ brain death: It could potentially allow physicians to ‌choose whether to treat patients who may be capable of recovery.

The proposed new standards have come under fire from some medical bioethicists, who agree a revision is necessary‌ but who do​ not‍ concur the proposed​ revisions ​are appropriate. Religious groups ⁣ have also expressed reservations about⁤ the proposed updates — clarifying⁣ that language included in RUDDA could create a situation⁤ where organ harvesting ‍could be the true cause of ⁢death for patients.

Without further‍ exploration of these criteria, ‌revising these standards to suit the needs of medical professionals and insurance companies rather than patients who have⁢ suffered catastrophic ⁢medical emergencies and become disabled can ⁣only result in ⁢the premature death of many living ⁤people.

Killing is not health care. To​ pretend‍ otherwise is a grave⁢ dereliction of duty, ​and physicians and lawmakers who would propose altering an already ⁢controversial ‍guideline to make it‍ even more problematic ⁤would be wise to‌ focus instead‍ on establishing trust with the ⁣people they serve.