Are you alive? What makes you so sure?
These strange questions are the opening lines of a new book by College of Law professor Elizabeth Price Foley. The Law of Life and Death uses stories of real people – some of whom, like Terri Schiavo, readers are sure to recognize – to examine the laws that govern life and death questions.
The book journeys through a range of provocative issues like abortion, in-vitro fertilization, life support and physician-assisted suicide. In her discussion of cryogenics, Foley poses troubling questions for the future. The law deems those cryogenically preserved to be dead, but what if science one day succeeds in resurrecting them? “Would such a person become un-dead?”
Case by case, the book reveals the complexities of answering life and death questions, both legally and personally. Readers will find themselves turning those questions inward. What is the essence of being a person? If it is more than just eating and breathing, what does that mean for those in a vegetative state?
Like the opening lines, The Law of Life and Death will give you pause. FIU Magazine caught up with Foley recently to talk about the book.
What motivated you to write this book?
My father died in the summer of 2004, when I was writing my first book about constitutional law. His death wasn’t a “good” death, and it raised a lot of issues in my mind about the meaning of life and death. Beyond the basic philosophical questions raised by these types of moments, I became intrigued – as a lawyer – with the specific question of how the law defines life and death, and how those definitions relate (or don’t relate) to each other.
Life and death would seem to be the most straightforward of antonyms. But that’s not so in the law. Why the ambiguity?
Life and death, in the eyes of the law, aren’t opposites. In fact, my research revealed that the two concepts don’t relate to each other at all, legally speaking. The law has a pretty well defined definition of death, but no definition at all of life. I think this is due to the fact that defining life is laden with moral judgments and has implications for controversial issues such as abortion. And while there are certainly controversies surrounding the definition of death – something I spend a good deal of time exploring in the book – the law simply cannot, pragmatically, punt on defining death.
Everyone will die, and this necessitates a relatively clear and stable legal definition of death so that wills can be probated, insurance proceeds can be distributed and crimes can be prosecuted. The law simply cannot afford to equivocate on the definition of death in the same way it can with the definition of life.
What do U.S. laws reveal about our relationship to death and dying?
They reveal something I find fascinating and relatively unexpected: That the law of life and death is much more fluid and multifaceted than one might expect. While this may seem initially disturbing, I became convinced, while writing the book, that this was a good thing. It’s good because it allows the law to accommodate a diverse array of viewpoints on issues that are intensely personal and vary wildly by things such as religion and culture. This is one area of the law where a one-size-fits-all approach would be counterproductive and unnecessarily divisive.
Most people might be surprised to learn there’s such a thing as “wrongful life” and “wrongful conception” and “wrongful birth.” What is the purpose of these laws?
Wrongful life, wrongful conception, and wrongful birth are all tort claims – in other words, private lawsuits that seek money damages. In each of these torts, the basic idea is that a child has been born or conceived, and this birth or conception has resulted in harm, either to the parents (who didn’t want to become parents) or to the child (who was born with disabilities). These are all relatively “new” torts – cropping up in the last 30 or 40 years – and they are quite controversial, as you can imagine, because they acknowledge that life isn’t always a good thing, but a harm to be compensated for.
States have a surprising amount of authority over life and death legal questions. Where does the State of Florida fall in the spectrum of laws regarding life and death?
In general, Florida is relatively conservative on its legal approach to life and death issues. In the realm of death, for example, Florida law requires “clear and convincing evidence” to terminate life support – an issue that was hotly debated in the Terri Schiavo case.
We just marked the death of Dr. Jack Kevorkian in June 2011. Did his crusade make any difference in the right–to–die versus right–to-life movements?
Certainly. Dr. Kevorkian brought the issue of physician-assisted suicide to the forefront of the American public’s mind.
His methods were crude and often offensive, but he forced American society to debate the desirability of physician-assisted suicide and shed light on longstanding practices that were occurring regularly, albeit behind the scenes. His crusade was undoubtedly a big impetus behind passage of laws in Oregon and Washington that have legalized physician-assisted suicide. But it was also a backstory in the Supreme Court’s decisions in 1997 denying recognition of a constitutional right to physician-assisted suicide.
You write about heads cryogenically preserved in the hopes that they may one day be reattached to a clone or robotic body. Can you talk about some of the issues society will face in the future if science manages to resurrect these human body pieces?
If this ever becomes reality, all bets are off. If the essence of our “personhood” is defined by a functioning brain, then the successful unfreezing of a cryogenically preserved head (or just brain) would imply that the person previously declared legally dead is no longer so. How the law would be able to accommodate such a resurrection is an open question.
Presumably, once declared legally dead, all of one’s assets dissipate and are distributed to others. Once resurrected, those assets could no longer be reclaimed and the “person” would literally have to start over, in terms of personal and professional identity.
All of these questions can be worked out, but it certainly won’t be easy, and I think the inevitable answer will be that, once a certain number of years have passed under cryopreservation, the resurrected individual would be a ward of the state until such time as he/she could support him/herself. The laws could devise ways around these pragmatic financial problems, of course, such as through the establishment of special trusts or the like. But legal relationships – for example, between the resurrected individual and their lineal descendants – would be tricky and require a good deal of thought.
For better or worse, how likely is it that we will continue to see erosion or even the overturning of Roe v. Wade?
I think Roe v. Wade has already been significantly eroded. It’s not quite accurate to characterize abortion as a “fundamental” right any longer, after the Supreme Court’s decisions in Planned Parenthood v. Casey and Gonzales v. Carhart. Abortion is still a recognized liberty interest under the Constitution, but the Supreme Court has shown greater willingness over the years to sustain laws that regulate abortion, and even prohibit some types of abortion, such as “partial birth” abortions.
I was horrified by the story of Zach Dunlap. Can you share that story and its implications?
Yeah, the Zach Dunlap story made me lose some sleep. The 21-year-old suffered a traumatic brain injury in 2008. He was declared brain dead in the hospital and doctors began preparing to harvest his organs. Zach heard all of it because he was conscious but unable to speak. Fortunately for Zach, two of his cousins, both nurses, were in the room and able to demonstrate that he was responding to pain. The preparations for harvesting were stopped. Forty-eight days later, Zach went home, substantially recovered.
As the book shows, Zach’s story isn’t isolated. Misdiagnoses of brain death are more common than the medical profession admits — since they don’t really admit to any misdiagnoses at all. And although still relatively rare, they do occur, and the potential consequences are obviously devastating.
The implication of Zach’s story is that there needs to be greater understanding of brain death – both by healthcare professionals and the general public. There needs to be an awareness of its subtlety, complexity and the need to have highly trained professionals (such as neurologists) make the diagnosis over a period of time. The pressure to obtain harvestable organs reinforces the impression that an abundance of caution is warranted in making these diagnoses.
In your book, doctors don’t come across as the best advocates for people facing life and death questions. Who, then, is?
The patients and the patients’ loved ones are the best advocates, by far. They are in the best position to be objective and have appropriate knowledge about the patient’s values and preferences.
As well-meaning as doctors and other healthcare professionals may be, they don’t have the same degree of objectivity and understanding of the patient. I’m a huge advocate of advanced directives such as living wills and durable healthcare powers of attorney, but they must be drafted with the goal of effectuating the patient’s own wishes, and without any pressure whatsoever.
You conclude the courts made a wrong decision in the Terri Schiavo case. Would it be fair to say that you have a bias for life when it comes to people in various states of incapacity?
Incompetent patients – those unable to make their own healthcare decisions – are the most vulnerable among us. I do think it’s a hallmark of a civilized society to have laws that protect incompetent individuals as much as possible.
In the specific context of incompetent individuals for whom life-sustaining care is being provided, the removal of such life-sustaining care must be done only with extreme caution. These patients cannot, by definition, tell us what they want. So before making a decision that ends their life – a decision that by definition is irreversible – we should do everything possible to ensure that’s what they would want, if they could tell us.
Why devote the end of your book to scientific research and treatment?
Because the research and treatment of severe neurological disabilities – such as the persistent vegetative state, the locked-in syndrome and the newly discovered minimally conscious state – reveal that our understanding of the brain is, currently, rudimentary at best. Because the legal definition of death has been expanded in the last 50 years to include brain death, it’s critically important that we understand what brain death is and what it isn’t.
As it’s turning out, there are many more people with some awareness of their surroundings than previously understood. In my mind, this urges great caution in considering proposals to expand the definition of brain death or loosen its diagnostic criteria.
You present a mind-boggling number of variables regarding brain death and consciousness and the possibilities of technology. Is there an essential question we should ask ourselves when considering an advanced directive?
Boy, that’s a tough question. Death is such a personal moment and in many ways, we now have some legal control over death’s timing and method, in large part thanks to advance directives.
I think the most important thing for anyone to think about is this: Would you rather be extremely disabled and alive, or dead? It’s actually a much harder question to answer than you might think, particularly if (like me), you are aware of data showing that extremely disabled individuals – for example, individuals in a locked-in syndrome state – actually self-report a relatively high quality of life.
For most people, so long as there are people who care about you and with whom you can interact in a rudimentary way (talking, listening, etc.), life is worth living, even if extremely disabled. Technology is now making it possible to communicate with neurologically disabled individuals in a manner inconceivable only a decade ago.
As this technology improves, I think a lot of people will be forced to redefine their preferences for end-of-life care, in a manner that expresses preference for continuation, rather than discontinuation, of life support. Eventually, this will create financial pressures that will force American society to engage in a substantive dialogue about healthcare rationing. How America resolves this pressure is anyone’s guess, and will certainly be related to the extent to which government pays for our health care. So stay tuned. I know I will.