What does it mean to be dead? You’d think the answer to that question is binary. You are, or you are not dead. But the fact is every state in the US determines death differently. And when it comes to brain death specifically, the subtle differences can have major consequences for doctors, patients, and their families. This was a challenge before COVID-19. The pandemic has underscored the already urgent need to reconcile these differences as soon as possible. 

On this episode of the Medical Liability Minute, Jeff Segal, MD, JD, discusses brain death with Thaddeus Pope, JD, PhD. Professor Pope is one of the world’s leading experts on medical law and clinical ethics. Brain death and brain death legislation are among his specialties. If you’ve spent even a modest amount of time researching the subject, you have likely read his work. We are privileged to have Professor Pope as our guest on this episode of the Medical Liability Minute. 

Listen to the episode on the embedded player below – or click here to read the episode transcript.

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Episode Transcript

Automatic transcript provided by Happy Scribe. Click here to jump to the post-episode discussion…

Jeff Segal, MD, JD 

Greetings, everyone. Today, we are going to speak with Thaddeus Pope – and I’m excited to have this conversation. Professor Pope is a law professor and bioethicist who has spent a great deal of time focused on several things, including brain death and the Uniform Determination of Death Act. Just when you think you know everything about brain death, you will learn that you do not know everything about brain death. And the law may be ripe for an update. Here’s a bit more in terms of background. 

Professor Pope has appointments at several different institutions, including the Mitchell Hamline School of Law in Minnesota. He is an adjunct professor in Australia. He also works in the Center of Bioethics and has spent time at the medical school in the Caribbean, Granada. He’s got a giant list on his curriculum vitae. And if I spent time reading it in its entirety, we would be out of time. So, without further ado, let me invite and bring in Professor Thaddeus Pope. Good morning! 

Thaddeus Pope, JD, PhD 

 Good morning – thanks for having me.  

Jeff Segal, MD, JD  

One of the things that got my attention has to do with my own background. I practiced as a neurosurgeon for a decade. 

I honestly believed I understood with clarity the concept of brain death. I certainly had been living with that understanding since I practiced medicine in the era of organ transplantation. But one of the things that was somewhat surprising, and indeed shocking, relates to several articles that were passed in my direction. I think you are one of the authors.  In 2020, it is possible, although unlikely, to be declared dead in one state and not dead in another state. 

And this inconsistency is a bit more than an inconvenience. The states are supposed to be laboratories of innovation, but death defines when patients can be buried, when organs can be donated for transplantation, when life insurance policies start paying off, when spouses can remarry, and whether a suspect will be charged with aggravated assault versus murder. The list goes on and on. I‘d like to do get started with how our concept of death has evolved. 

If you go back 100 years, it was very simple. It was a binary proposition. Walk us down memory lane and go through the traditional description of declaration of death and where we are today and the various milestones that we hit, which changed our conception of death and how it applies to modern medicine. And this will be a dynamic back and forth discussion. 

Thaddeus Pope, JD, PhD 

Sure. If I could just quickly expand on the point you just made, which is today, it’s not just possible for a patient to be dead in one state, but not dead in another state. It’s possible for a patient to be dead in one hospital, in one city, but not dead in another hospital, in the same city. In fact, it’s possible for a patient to be dead in the same hospital – but if a different clinician had been in charge, that patient might not have been dead. 

In other words, there’s variability in the criteria that are used from state to state, from hospital to hospital, and from clinician to clinician. That’s where we are right now. 

Jeff Segal, MD, JD  

And with that, does it also imply that someone could be declared dead in one state and then actually be transported to yet another state and somehow be resuscitated on paper, if nothing else?  

Thaddeus Pope, JD, PhD 

Right. And that’s has absolutely happened. It’s very famously happened with Jahi McMath. She was determined to be dead in California, then declared to be dead in California. A death certificate was then issued. Jahi McMath was then flown to New Jersey, where she was considered to be alive. 

And it was years later, almost five years later, that New Jersey issued a death certificate for her. So, that’s a very famous case where she was sort of resurrected, at least legally, by moving from California to New Jersey.  

Jeff Segal, MD, JD 

Interesting. Let’s go through the history. When did things start to change? I’m guessing around the era of organ transplantation. Certainly, kidneys were the first organs to be transplanted. You did not need a dead body. 

We have two kidneys. But ultimately, we moved to heart transplantation. And to pull a heart out, you need a beating heart, for the most part, and a dead patient. 

A combination of the two.  

Thaddeus Pope, JD, PhD 

Right. It does coincide with heart transplantation. In 1968, Christian Barnard did the first heart transplant in South Africa. And then that was quickly followed by one at Stanford. The patient wasn’t dead, but it was the actual process of obtaining the heart that caused their deaths. So, those surgeons proceeded, nonetheless. But in the early history of organ transplantation, there were other physicians who were criminally charged and sued for causing the death of the patient by procuring non-paired organs.  

What resulted was what we now know as the dead donor rule. Which is to say, first we declare them dead – and only then do we take the organs. But obviously, when we talk about heart transplantation, you can’t declare them dead on cardiopulmonary criteria. So, the “irreversible cessation of circulatory functions” was the definition of death, since the beginning of time, up until 1968, at which time there was a famous article published by an ad hoc research group at Harvard, published in JAMA. And they advocated for a second, additional basis on which to declare somebody dead other than the cardiopulmonary criteria. They said we needed a brain criterion to declare somebody dead. 

Jeff Segal, MD, JD 

This was in 1968. Is that correct?  

Thaddeus Pope, JD, PhD 

This was early 1968. Now, that was just a JAMA article. So, it didn’t have any formal legal status. It was just a proposal. But that got the ball rolling. And by 1970, the state of Kansas passed a statute saying that you can be dead in the state of Kansas via one of two criteria. Either/or, this is disjunctive, it’s either or. If there’s irreversible cessation of circulatory function or irreversible cessation of all functions of the brain. 

And then during the 1970s, more and more states started enacting similar statutes, recognizing that there were two different grounds on which somebody could be determined and declared dead. Unfortunately, during the 1970s, the states that were doing this all formulated their laws differently. By 1979, it was apparent that there was too much variability.  

The way in which brain death was articulated legally in one state was different than in other states. There was too much inconsistency. 

As a result, we had seven, eight, or nine different formulations.   

Jeff Segal, MD, JD  

Now, were the laws subtly different or were the differences dramatic enough that it was screaming for attention? 

Thaddeus Pope, JD, PhD 

The differences were subtle, but impactful.  There was a different adjective here or there, and some definitions referred to whole brain death versus just brain stem death. So, the variations sometimes were subtle, but I think people perceived them to be meaningful enough. To give this color, Jimmy Carter, the president at the time, convened a presidential task force and said: You guys need to figure out once and for all the definition of brain death, because it’s being formulated in a number of different ways across the country. 

And if there’s one thing that we really need to be consistent about across the entire United States is the definition of what it means to be dead. 

Jeff Segal, MD, JD  

That should be uniform. That should be consistent. It should not vary from state to state. Language is so important. And there’s a good reason to have language harmonized across all the states. I give this next example just in terms of how big a difference a single comma can make: And we’ve written about this in the past. When the World Trade Towers went down, there were multiple insurance and reinsurance policies. The question: Who was going to pay the bill for this? 

And one of the questions asked was this: When the two towers fell, was that one incident or two? And the interpretation ultimately depending on the language in the various insurance policies and they weren’t all the same. Some insurance policies suggested the collapse was one event. Other insurance policies indicated the collapse represented two events. And the distinction between the two, resting on a single comma, was on the order of billions of dollars. You can see that language does matter. You can certainly imagine whether someone is declared dead, based on the language of the law, would also be very important. 

Thaddeus Pope, JD, PhD 

We have a lot of urban centers that are close to the borders of several states and cities. Kansas, Missouri, New York, New Jersey, Philadelphia, Pennsylvania, etc. We have a lot of people who practice within the intersection of two different jurisdictions. In those urban areas especially, it’s upsetting to have variability in how death is determined. 

In the early 1980s, this task force issued a report, and they articulated what we now know as the Uniform Determination of Death Act. And they talked to the American Bar Association, the American Medical Association, and a lot of other groups that had all proposed their own definitions of brain death. But they had all proposed different definitions. They had all used different language. And so, this task force got everybody on the same page. 

We reached consensus. And in 1981, that consensus was picked up by what was then known as the National Conference of Commissioners on Uniform State Laws, which promulgates lots of uniform laws like the Uniform Anatomical Gift Act and the Uniform Commercial Code. And so, they published this new uniform definition of brain death as the Uniform Determination of Death Act (UDDA), which had a high pickup rate among the states. Almost every state adopted the Uniform Determination of Death Act.  

Generally, we could say the law of brain death in the United States is the Uniform Determination of Death Act, because each state legislature adopted it. And what that law says is this 

You are dead if either there’s an irreversible cessation circulatory functions or if there’s irreversible cessation of all functions of the entire brain.  

And so, it’s that second prong that we’re focusing on, unfortunately. 

We’ll come back to this, but the exact language that they used was not harmonized. This goes back to the way you introduced the topic – the language, while not a perfect match, was close enough and everybody thought the problem was solved. In 1981, we had the Uniform Determination of Death Act. It’s now 40 years later, and only now are things starting to really unravel. The UDDA achieved stability for four decades. 

It did a good job. This is an issue that is interesting in the history of bioethics and the history of medical jurisprudence, because it’s not a new issue. It’s an old issue. It’s more than 50 years old, but it’s an issue that we thought we solved. But we must go back and reopen the case and look at it again today, because the slight language differences that we thought were immaterial in 1981 are in fact now becoming material. 

Jeff Segal, MD, JD

One of the prongs of the UDDA (Uniform Determination of Death Act) is the complete cessation of all functions of the entire brain, including the brain stem. 

My understanding had always been that the (brain-dead) patient was in a coma and that every reflex attributable to the brain stem was absent. But if you take this at face value, (all function of the brain), the question becomes this: What are all functions of the brain?  

If there are islands of viable activity in the brain and we don’t really know that there are islands of viable activity, have you satisfied the criteria for brain death? One of the ways that we typically identify whether there’s a function is whether there’s a report of a stimulus or an action, such as a motor function. 

But absent that, and particularly as we develop greater and more sophisticated diagnostics, you wonder whether even a remaining island of activity in the brain would be classified as function. I mean, you can already see that this is a setup for being too vague. And anytime something is too vague, the loopholes take over and then you must figure out what was the intent of the law and then it gets muddy – which gets back to your point. 

It’s time for a potential upgrade of what was a well-intended law.  

Thaddeus Pope, JD, PhD 

Or you could say the same point, worded little bit differently, which is the law is not vague. It’s written in rather categorical terms. 

It says, all functions of the entire brain. The words “all” and “entire” are two key adjectives. Those are categorical adjectives. And one of the problems that’s been coming up in courts across the country is that we are not measuring that.  

And the point you just made is good. But even clearer is the fact that the American Academy of Neurology, which is the leading professional association and the holder of the guidelines (at least for determining brain death for adults), wrote a report last year saying doctors are not measuring functions of the hypothalamus or the pituitary gland. 

In other words, hormonal functions. We’re not measuring hormonal functions. That’s not part of what we’re measuring when we measure whether somebody’s brain dead. And the problem with that is it appears that at least the hypothalamus is part of the brain.  

So, now you have a concession in writing that when clinicians in the United States measure brain death and determine brain death and declare brain death, they’re not measuring the cessation of ALL functions of the entire brain.  

And yet that’s what the law seems to require. The law doesn’t say “all the functions that the medical community thinks are important.” It says, “all functions of the entire brain.” One of the big problems right now is that there’s a gap. There’s always been a gap. But now it’s become spotlighted. 

A gap between what the law requires to determine whether somebody’s brain dead and the medical criteria that are being measured. And one of the reasons to amend the law is to close that gap. Again, that gap has always been with us. But now you have a lot of pro-life advocacy groups litigating it. So, they’re pushing this gap. And so, the urgency to close the gap is increasing as these lawsuits unfold. 

Jeff Segal, MD, JD

Has the gap related to the pituitary and hypothalamus been litigated to date? Meaning, someone was declared dead, and the plaintiff said, “Whoa, wait a minute, we’re still able to measure hormonal function for its presence or absence.” Has something like that gone to court? Has it gone up to an appellate court? Or is it just a hypothetical activity that’s likely to take place at some point down the road? 

What has been the trajectory of this? 

Thaddeus Pope, JD, PhD

Most of the cases have been what you might call exante cases. The hospital was planning to disconnect somebody from organsustaining treatment in the ICU, and the family wanted to stop that action.  

And there are, in fact, several of what you would call expost cases where the patient life sustaining treatment was withdrawn, and now a lawsuit for damages has been brought.  

The point about hormonal function specifically was introduced in the Jahi McMath case. That case was a medical malpractice action. Briefly – what was the Jahi McMath case? Jahi McMath had a tonsillectomy in December 2013. There were allegations that it wasn’t performed appropriately and that the post-operative care was inadequate. And as a result, she bled from the surgical site, lost her airway, and suffered an anoxic brain injury, which then led to brain death. 

Now, the parents disputed the fact that she was, in fact, brain dead. And as we talked about a few minutes ago, she was transported to New Jersey. In the med mal action, they wanted future medical expenses covered by the hospital. Which was odd, because as far as the hospital understood, she died at the hospital a day after the surgery. So, they’re like, what? What future medical expenses? 

Dead people don’t have future medical expenses, but the parents insisted she was not dead. And so, embedded within the med mal case was this fact question. “Is she dead or is she not dead?” Which is an important fact question to answer because it would make a big difference to the damages, because if she’s merely catastrophically brain injured, she could live for 25, 30 years. She’s going to need enormously expensive care – probably $300k a year with mechanical ventilation, nursing support, etc. 

Jeff Segal, MD, JD

And meanwhile, the hospital was prevented from eliminating support. They’ve got to keep the patient intubated and supported with nutrition, et cetera. And that was the injunction, right? 

Thaddeus Pope, JD, PhD

In December 2013, there was a lot of litigation both in the state courts and then also in the federal courts. But those injunctions were all lifted by the end of December. And then she was transported to New Jersey. So, in other words, the courts in California agreed with the hospital. The patient was dead. And since she’s dead, you have no duty (hospital) to continue any sort of treatment at all. 

Now, of course, the parents could have brought that up to the appellate courts and pursued a stay pending the outcome of the appeal, which would have stalled action another year. They reached an agreement to remove the patient from the hospital. And then they took the patient to New Jersey. The California hospital did treat someone they considered to be a dead patient, but only for a couple weeks. 

Jeff Segal, MD, JD

Has that case been resolved in terms of the malpractice action and the associated damages? Because there was that gap – I believe you mentioned four to five years – where she remained alive until she had cardiopulmonary cessation. Is that accurate? 

Thaddeus Pope, JD, PhD

They bifurcated the trial. And the plan was to try this question about the hormonal functions. In other words, did she have hormonal functions, and if she did have hormonal functions, did that indicate she was alive?  A hospital or doctor determined she was dead, but were the tests they performed to make that determination legally sufficient? That was the question that was set for the bifurcated trial. And by the way, the hospital tried really, really hard to keep this from going to trial. 

But the court insisted. They passed the motion to dismiss stage. They passed the summary judgment stage. And the court insisted there was enough evidence to create a triable question of fact about whether this girl is still alive. The court was going to let this go to a trial. The parents took it up to the Supreme Court of California, and the Supreme Court of California also insisted it go to trial. But that never happened because the case was ultimately settled. 

Jeff Segal, MD, JD

Interesting. I’m not surprised that it settled, only because of how emotionally volatile the case could have become, the PR associated with it, and the potential for unlimited damages. It doesn’t shock me. 

Thaddeus Pope, JD, PhD

A key to consider is this: Once she died on cardiopulmonary criteria, that stopped the clock on future medical expense damages. So, before the case might have been 6 to 10 million dollars, but now the value of the case hit a hard stop. I think that put the case within the ranges that the parties were willing to discuss. 

Jeff Segal, MD, JD

Let’s keep going. You talked about one of the real challenges with the UDDA is answering this question: What is meant by all brain functions? And it looks like there’s a gap related to the hypothalamus and pituitary. But that’s not the only reason why the UDDA may need an update.  

Thaddeus Pope, JD, PhD

Right. It’s just one reason. Here’s another. The law doesn’t speak to the actual standards that should be used. It just says, “irreversible cessation of all functions of the entire brain.” 

But how is that measured? What are the tests?  

Well, there is a case and it went up to the Supreme Court in Nevada – the Aden Hailu case. And that case was about the appropriate controlling standards that should be used to measure the definition of brain death. And so that raises yet another question – namely, WHO decides how brain death is measured? Because a lot of people think it would be the American Academy of Neurology’s criteria for adults and the American Academy of Pediatrics’ criteria for children and infants. But as the Aden Hailu case illustrates, there is a dispute about whether those are the right criteria to be using. 

Even if you think that the criteria are legally sufficient, which criteria should we be using? Closely related to this issue is the fact that in multiple studies conducted by the American Academy of Neurology, they measured the fact that many, many, many hospitals across the United States aren’t following their guidelines. It’s not clear that they are the “accepted medical standards” or the “accepted medical guidelines” since a lot of places haven’t accepted them. 

And they know this because they pulled their policies. They went to the top hospitals in the country. Mass General, Cleveland Clinic, Mayo Clinic, etc. They looked at the policies in use at these hospitals, compared them to their internal policies for determining brain death, and found the policies in place at many of these hospitals did not match the published guidelines. 

Jeff Segal, MD, JD

Let’s give an example of what that may actually translate to. Is it perhaps that one set of guidelines may mandate two EEGs over 24 hours that are flat? Another one may say you can use a cerebral blood flow determination. Another may require prescriptive ways of doing an apnea test. Are these some of the differences from one facility to another that may be manifest in in these differences? 

Thaddeus Pope, JD, PhD 

It gets fine grained. For example, the temperature of the body before you do the test is important. And before doing any brain death tests, you must determine whether there’s a confounding variable that explains why the patient is non-responsive. You must screen out for drugs and other causes. 

But the checklists are different for how you screen those things out. You asked earlier how the apnea test comes into play. The apnea test is the final confirmatory test. You do all these other bedside tests to look for responsiveness in the pupils, putting ice water in the earetc. And then you do all these other responsiveness tests. And if the patient fails all of those, then the final confirmation comes from the apnea test. 

But how exactly do you conduct the apnea test? What is the CO2 level that you’re looking for? At a very detailed level, there are variations. You do an apnea test, but how you conduct the apnea test varies from institution to institution. 

Jeff Segal, MD, JD

And is it even a broader problem than that? Meaning there are issues related to HOW you do the apnea test, but what about issues related to WHO does the apnea test or who declares the patient brain-dead? Are there differences from one institution to another? Meaning that it must be a neurologist, or it could be any doctor, or it must be two neurologists? Does it get granular like that at the level of the institution? 

Thaddeus Pope, JD, PhD

Yes – and not just at the institution, but also as a matter of state law. First, the number of doctors is an important variable. Does it have to be confirmed by a second doctor? Or can one person do the test? Some places will say it has to be a board-certified neurologist or critical care specialist. Other places will say it can be any MD. Other places will say it could be an NP, or some other type of clinician. In 2020, you have some places requiring a separate level of certification. 

They would say it’s not just a board-certified neurologist or critical care physician. It‘s a board-certified neurologist or critical care specialist who received the special brain-death determination certification. There is variability not just in the definition of the tests, but also in the definition of who can do the test and what qualifications and training they must have to do it.  

Jeff Segal, MD, JD

This would be among the second bucket of gaps that need attention. 

How do you go from a very general description of cessation of all functions of the entire brain to the more detailed, more granular guidelines? How are those guidelines implemented and who will be doing the test? It is not a trivial problem to solve. 

Thaddeus Pope, JD, PhD

And here’s the recommended solution. Do what the state of Nevada did. So, as I described, the Supreme Court in Nevada issued this published opinion that cast a lot of doubt on the status and validity of brain death determinations in the state. And so, the legislature reacted to that because the neurologists and organ transplantation professionals in the state were like, “You’ve just cast a lot of uncertainty on brain death in this state.”  

To fix that, in the statute itself, they specified that when you determine irreversible cessation of all functions of the entire brain, do it according to the guidelines authored by the American Academy of Neurology. They referenced those guidelines by name in the statute, giving them authority. Before it was not clear that it was mandatory those guidelines were followed – but now it was clear. 

Jeff Segal, MD, JD

Now, do these guidelines, as they are referenced in the statute, have the ability to be updated? My point is that the guidelines are from a particular journal on a particular date. If we fast forward 25 years from now, will we still be using that version? If the American Academy of Neurology updates their guidelines, will we be using the newer guidelines? Or do we go through this process over and over again? 

Thaddeus Pope, JD, PhD

That’s a great question. Let’s look at history and I’ll explain the reason why no guidelines were mentioned. The reason nobody mentioned guidelines was deliberate was because back in 1981, those responsible recognized that science and medicine evolve. And so, they were hesitant to enshrine specific tests fated to become outdated. 

We don’t want to put too much detail into the statute, the legislators were thinking: Better to be silent on the specifics and leave the details to the medical professionals. The problem was that backfired. Because by giving the medical profession discretion, one might say that discretion has been abused. Because now there’s too much variability.  

And I think the Nevada approach strikes a balance because it leaves discretion to the medical professionals. You’re not enshrining specific standards into the statute; you’re only referencing a set of standards that are almost guaranteed to update as medicine evolves. I think the actual language the state of Nevada uses is as follows: “The 2010 AAN standards or subsequent revisions.”  

The only challenge is that while this arrangement might work in Nevada, many other states have what is called it’s a “constitutional requirement” under the state constitution. It’s called a non-delegation rule, which means the legislature cannot delegate the rulemaking to some other entity – especially a private entity. Because that would give private entities a dangerous amount of power. 

You’d be giving power to the ANN to define the content of a Nevada statute. Most states will have to do something like this: They might say that the current rules for brain death are the 2010 AAN guidelines. And then they’d need to add to that something like this: As updated and approved by our State Medical Board or by our State Department of Health. 

In this way, the state has a way to check the guidelines.  

Jeff Segal, MD, JD

These standards would get blessed by a government agency, even though the private organization would be quite influential. The final checkpoint would be a government body implementing a statute. 

Thaddeus Pope, JD, PhD

The medical board could issue regs, or this or that state agency could issue regs. In a sense, it’s a double delegation. We’re delegating to the medical board to fill in the content of these statutes – and then the medical board delegates to the AAN. The key point is that the AAN revisions don’t automatically become authoritative unless there’s blessing 

It could be a quick vote conducted at regular medical board meetings. But something needs to serve as check, otherwise it’s likely unconstitutional for a private entity to be the sole decision-maker.  

Jeff Segal, MD, JD

The second major update for the UDDA would be to address guidelines and hopefully get them harmonized across the country and then figure out mechanically how to get them implemented by a state governmental body.  

Thaddeus Pope, JD, PhD

Correct. And I think the AAN hoped that the mere fact that they’re the leading professional association in neurology meant that people would just follow their guidelines. But they’ve written and published time and time again lamenting the fact that many people are not following their guidelines. 

You shouldn’t have to use the force of law, but this may be a case in which the force of law will help achieve compliance and therefore uniformity. 

Jeff Segal, MD, JD

And what’s fascinating about guidelines in general is that they do vary. There are professional societies that are authoritative for a particular organ, if you will. But there may be more than one organization that claims ownership of that organ, and they issue guidelines that may overlap or may conflict with the other organization’s guidelines. Because creating guidelines by consensus is essentially a human activity, you can well imagine how at some point conflict can take place. 

Thaddeus Pope, JD, PhD

Right. And this goes to some points you made at the beginning. Consider the different guidelines about mammograms. Do you start them at 40? Do you start at 50? There’s different guidelines and conflicting guidelines on a lot of different medical interventions, but this is about who’s alive and who’s dead. And so, the stakes go beyond medicine, right? 

As you said, it links back to property rights and many other legal and personal consequences. And therefore, if there’s ever a need to have uniformity for something, it’s here.  

Jeff Segal, MD, JD

But if it is that important to get uniformity or harmonization of these laws across the country, why would we ever leave it to the states? I mean, the states are supposed to be laboratories of innovation. And ultimately, the thinking is that if you need some type of harmonization of the laws, it may need to be done at the federal level – assuming it can even be done at the federal level from a constitutional standpoint. 

But you can well imagine that it wouldn’t take much for there to be a change in the reading of the law from one state to another to again create these conundrums in 20 or 30 years from now, even if we have updated the UDDA to modernity. 

Thaddeus Pope, JD, PhD

That is a fantastic point. And I think the rule is the traditional respect of federalism requires that you at least try to do it through the states because this is a traditional state function. And even in the 1981 report, the consensus was that if we cannot achieve uniformity by leveraging the state system, then we’re going to have to try through the federal system. But let’s try to see if we can achieve uniformity state by state first and then only go to federal if we need to. 

And that may very well be required. Let’s pretend we could go to the Uniform Law Commission and make them publish a revised Uniform Determination of Death Act. And then all the state legislatures think about that in 2021 and 2022. It seems unlikely that they’re going to adopt it exactly as it is. For some weird political reasons, somebody is going to change a word there, or change a word here, and then we’ve solved nothing. 

A federal brain death law may very well be in our future. That’s true. I agree with that – and it seems likely. If we’re really worried about uniformity, that may be what’s required to achieve it. 

Jeff Segal, MD, JD

And it maybe we must go through this issue with the states to ultimately figure out what the best federal law will be for us. There may be some minor discrepancies between one state or another, and we use that as a learning experience to figure out the shape of the final (or initial) federal law that we can update as necessary. 

Thaddeus Pope, JD, PhD

That’s a great observation. Like I said, Kansas enacted the first U.S. brain death law in 1970, and we didn’t have a UDDA until 1981. We had a decade of a bunch of states passing a bunch of different laws. And then you saw a lot of different commissions and task forces and law review articles and medical journal articles created during the 1970s. By the time the presidential task force met and convened in the early 80s, they haa giant body of experience and a giant body of scholarship to guide them. 

We could start with a revised UDDA, see how well it gets adopted, see what the commentary looks like on it, see what the legislative debate looks like on it, and then that’s a giant body of thinking that could guide Congress, if Congress does need to act in the future.  

Jeff Segal, MD, JD

We’re running tight on time, and I want to make sure we hit the last bucket of concerns with the current UDDA, which would be family concerns. 

And there are two components to that. One would be religious objections to the determination of brain death. And the other one would be this: Does the family need to give consent for procedures of determining brain death? In particular, the apnea test. 

Thaddeus Pope, JD, PhD

Both good questions. Several families over the past two years who have refused permission to clinicians to do an apnea test. These are mostly pediatric cases, although not entirely, but mostly. You have a kid who drowned or had some other sort of accident and the clinicians have done all the bedside tests and find the kid nonresponsive and think that the kid is probably brain dead. They need to confirm it and they confirm it by doing the apnea test. 

But the parents say, “No, you’re not doing an apnea test.” And so, the question is, do you need the parents’ consent to do the apnea test? Well, when these cases have gone to court, and several of them have gone to court over the past two years, we’ve gotten different answers from different courts and different states. The normal rule, just for context, is that you normally need consent to do anything to a patient. 

Otherwise, it’s a battery. Presumptively, you would think that you do need consent. 

Jeff Segal, MD, JD

Can you do a battery on a dead person, though? I guess that is the question. The cart or the horse? 

Thaddeus Pope, JD, PhD

Well, you can’t. But the whole point is you don’t know that they’re dead yet. And you can’t declare them dead until you do the apnea test.  

Jeff Segal, MD, JD

Right. And particularly if you get it wrong, and they are breathing, you will have a battery problem without consent. 

Thaddeus Pope, JD, PhD

And by the way, since you brought that up, one of the other big issues is that there’s a big debate about the apnea test. As I am sure you know, the apnea test is not a risk-free test. For example, take somebody who has catastrophic brain injuries. The argument is that the performing of the apnea test itself creates risk to that patient. In other words, the apnea test may kill them. They may not have been dead, but then by doing the apnea test, you made them dead, as opposed to measuring that they were already dead. 

Jeff Segal, MD, JD

To our listeners who may not be familiar with the apnea test, it is one of the final tests that is done to see if there is a respiratory drive. The patient is on a ventilator and you’re trying to see that if you can artificially raise the carbon dioxide in the blood, will it stimulate the brainstem to take a gasp, to breathe, etc. But to do that, you must disconnect the patient from the ventilator, which also could cause hypoxia, and not just the rising of CO2. 

Thaddeus Pope, JD, PhD

So, again. There is variability in state law as to whether an apnea a test is required. And there’s not even consensus among neurologists. There have been surveys that even neurologists disagree about whether they think they should get consent as a matter of medical practice and ethics. And it’s worth noting that if you cannot perform the test, the patient is going to stay in the ICU until he has cardiopulmonary death. 

And that could be quite a long time. In some of the cases, the patient has been in the ICU for months and months and months, and people are pretty confident that the patient is dead, but they can’t actually declare the patient dead because they can’t do the necessary tests. This is important, I think, from several standpoints. One is a distributive justice question. These pediatric ICUs are often full. 

And here’s the issue. If an ICU bed is occupied by a deceased child, the resources “sustaining” the deceased child cannot benefit a child who is still alive. This is something that could be addressed in the Uniform Determination of Death Act. 

This would clarify one way or the other whether consent is required to do the tests.  

Jeff Segal, MD, JD

And so parallel to the family being able to veto a declaration of death, the family may also have religious objections and different states treat religious objections differently. New Jersey being the prototypical state, which says that if the family does have a religious objection, the patient is not declared brain dead. 

Thaddeus Pope, JD, PhD

Correct.  

Jeff Segal, MD, JD

That’s why people move (patients) to New Jersey to get additional care. And that was the solution to the case in California. Although, the California hospital probably didn’t have to move the patient to New Jersey, they made an accommodation and it certainly did solve their problem. It created the end to the potential litigation.  

Thaddeus Pope, JD, PhD

I think you’re right. They had no legal duty to do that. But what normally happens in these cases is that even if you lose, you take the appeal. 

And normally, the appellate court is going to grant a stay to preserve the status quo pending the outcome of the appeal. But the nature of appellate litigation is such that it is going to take months and months and months, if not a year or more. I think the hospital realized it was necessary to make a deal. The religious exemption issue is very similar to the consent issue, because if you need to get the parent’s consent and they don’t give their consent, then effectively they‘ve vetoed a determination of brain death. 

You can’t declare the kid dead on neurological criteria because you can’t do the necessary tests. The religious exemption question is similar, except that you’ve already done the tests, you’ve determined that the patient is dead. Normally at that point you would either procure organs if they were an organ donor or you would just remove organ sustaining treatments. But in New Jersey, if the patient has a religious exemption or a religious objection to brain death, you can’t do that. 

You must keep them in your hospital until they reach cardiopulmonary death. That statute is an old statute from 1991. But that’s exactly what it says. It’s as if that other prong of the UDDA didn’t exist. Remember, the UDDA says you could be dead on neurological criteria or circulatory criteria. But if you have a religious objection to brain death, then you can’t be declared dead on neurological criteria. 

You can only be declared dead on circulatory criteria. 

Jeff Segal, MD, JD

A couple of questions about New Jersey. Are insurance companies mandated to continue payment? That’s number one. And then number two, as a physician taking care of this patient, are you mandated to continue taking care of this patient, or can you find someone else to take care of them? Otherwise, there’ll be some charge of abandonment I would imagine. 

Thaddeus Pope, JD, PhD

The first statute specifically addresses insurance, so that is required. In any case, legally speaking, the patient is still alive. Legally, they have the status of a critically ill patient. But they’re not dead. So, insurance does have to cover this. In fact, that’s a key reason why people want to go to New Jersey. 

There are hospitals in New York City that are willing to accommodate. One of the biggest populations of people who assert this objection are Orthodox Jews. There are New York City hospitals that are willing to honor those objections. But the insurance companies won’t pay for it in New York. So, if they could transfer and just go across the river to New Jersey, then they could get not just the hospital’s accommodation, but they could also get payment (reimbursement). And then the other question relates to who can assert a conscience-based objection. 

Any individual clinician on the team can assert a conscience-based objection. If you have moral distress treating a patient whom you consider to be a corpse, the new rule allows you to get off the case, so long as the hospital can substitute you out.  

Jeff Segal, MD, JD

But someone must pick up the baton.  

Thaddeus Pope, JD, PhD

Right. If there’s nobody else who can step in, then you are still stuck. 

But the normative rules (and these are embedded in laws such as Aden Hailu rules) is as follows: As long as it doesn’t constitute an undue burden to the hospital, then they should be able to sub you out, provided the patient is still cared for. If they can’t accommodate your objection, then you don’t get to assert it. 

Interestingly, and this is outside our scope, but there are some new Trump Administration conscience rules that would further empower individual clinicians to assert conscience-based objections in a way that they’re not currently able to do. 

But those regs are currently enjoined and they’re on appeal before the U.S. Court of Appeals for the 2nd Circuit. 

Jeff Segal, MD, JD  

How would the updated UDDA accommodate religious objections? Would it touch it or leave it alone? 

Thaddeus Pope, JD, PhD

That’s a great question. I worked with a group of neurologists on crafting a proposed UDDA. It’s a big problem. Because the idea of religious exemptions is not unique to the UDDA. It applies to the UDDA, but people assert religious exemptions to vaccinations and a lot of other things. Regarding that, we didn’t craft specific language that would go into the UDDA, but we recommended that another task force be convened to investigate that specific issue. 

That one was may be too complicated for us, and maybe we didn’t consider that we had the expertise in moral and theological domains to offer specific language addressing that question. But what we did instead was call for a broader multi-professional committee be convened to answer the question.

Jeff Segal, MD, JD

Let’s wrap up. I know you’ve got a class that’s starting in a few minutes at Dartmouth. You’re doing that online.  If you couldsummarize what a better UDDA would look like as model legislation to be picked up by all 50 states. I know you’ve written extensively about that, but for our listeners, please summarize. And by the way, I’d love to have you back. I could have spent two and a half hours on this topic alone. I’m hoping that you will come back, and we can speak at even greater length on this and other topics. 

Thaddeus Pope, JD, PhD

The current UDDA merely says that youre dead if clinicians measure that there’s been irreversible cessation of all functions of the entire brain. A new revised Uniform Determination of Death Act would clarify that it doesn’t actually need to be ALL functions of the entire brain, because we’re not now measuring that, nobody really thinks we should be measuring that, and so therefore, the new UDDA would clarify that it doesn’t need to be hormonal functions because we’re not measuring the cessation of hormonal functions.

And so, the revised UDDA would clarify that we don’t need to measure that. The revised UDDA would clarify that we don’t need parental consent to administer the tests and the revised UDDA would clarify which guidelines clinicians should use when they’re measuring cessation of all functions of the entire brain. The guidelines that generally are widely accepted are the American Academy of Neurology criteria for adults and the American Academy of Pediatrics criteria for children. And the revised UDDA would just reference those guidelines explicitly, by name, in the statute. Because that would elevate their authoritativeness and reduce the variability in the guidelines that are being followed right now from institution to institution. 

Jeff Segal, MD, JD

Well, we may not have a harmonized description of brain death across the country. but I’m positive that every person listening to this learned something today. I can’t thank you enough for joining us. I’d like to include the references to the two articles that you describe. One of which is Determination of Death by Neurologic Criteria in the US. I believe that was in Current Topics in Health Law. I’ll put that reference in our show notes. And there’s yet another article which I’m looking at it here: 

It’s Time to Revise the Uniform Determination of Death Act. That’s from the Annals of Internal Medicine. Both are excellent articles. By the way, I typically underline parts of articles to revisit those items I think are important. In those articles, I ran out of ink. I had underlined almost everything in here and I thought it might have been be more efficient to just underline what I didn’t want to underline. In any event, this is a very readable article. 

It’s very detailed. It goes over the history. I can’t recommend it enough for anyone who’s ever seen or declared a patient as brain dead.  

Professor Pope, thanks so much for joining us. We will have you back. All right.  

Thaddeus Pope, JD, PhD 

Thanks for having me – it was fun.

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Meet Your Hosts

Jeff Segal, MD, JD

Founder & CEO, Medical Justice
Dr. Jeffrey Segal is a board-certified neurosurgeon. In the process of conceiving, funding, developing, and growing Medical Justice, Dr. Segal has established himself as one of the country’s leading authorities on medical malpractice issues, counterclaims, and internet-based assaults on reputation.

Thaddeus Pope, JD, PhD

Health Law Professor & Bioethicist

Thaddeus Mason Pope is a foremost expert on medical law and clinical ethics. He maintains a special focus on patient rights and healthcare decision-making.
 
Pope is Director of the Health Law Institute at Mitchell Hamline School of Law in Saint Paul, Minnesota, USA. While he serves in a range of consulting capacities, Pope has been particularly influential through his extensive, high-impact scholarship.
 
Ranked among the Top 20 most cited health law scholars in the United States, Professor Pope has over 220 publications in leading medical journals, bioethics journals, and law reviews. He coauthors the definitive treatise The Right to Die: The Law of End-of-Life Decisionmaking, and he runs the Medical Futility Blog (with over four million page-views).

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