When Death Is Not Death: Stumbling Over the Parameters of “Brain Dead”

Geese at Ketring Lake

Geese at Ketring Lake

I came across this very interesting article in the New York Times about two recent cases of young persons and death.  This is not any old death, this is legally recognized “official” brain death.  Only problem is, the definition of brain dead is a bit tricky.  In Colorado, we have advance directives that distinguish between persistent vegetative state and terminal condition.  As the NYT article points out, the Supreme Court cases which make the advance directive, a/k/a living will so popularized, were all cases involving persons (women) with the diagnosis known as persistent vegetative state, as distinguished from “brain dead.”   Colorado has recognized brain death from at least 1985 on, but one of the challenges with this definition is that it attempts to draw an arbitrary line between the dying process and death.  Where is the end of the line?

The Uniform Law Commissioners created the Uniform Brain Death Act in 1978.  Brain death became much more relevant as a result of organ transplantation and as neuroscience and its imaging technology has become more advanced, there are many more nuances known about the distinctions between persistent vegetative state and when someone has experienced brain death.  Setting aside the medical distinctions, the law does distinguish between brain death and persistent vegetative state.  Here is an article about the legal terminology and some of the techniques used by medical professionals to make such a determination.   Here, I think of the beautiful film The Diving Bell and the Butterfly, about the French writer with “locked in” syndrome as a result of stroke.  There have been several articles in Scientific American on this topic of what is “conscious awareness” and a finding cited in this article that patients who were otherwise in a vegetative state were found to be minimally conscious and capable of learning.   So much for that “bright line” between vegetative state and cognitive awareness.

Interesting and more controversial is this topic of the NY Times article, in the context of how these determinations play out with a teenage girl and a young mother, the persons declared “brain dead” by doctors in California and Texas, respectively.  Both these young women are on ventilators, and their hearts continue to beat.  The NYT article observes: “[t]he two cases are poignant because of a biological quirk of the body: the patients’ hearts continue to beat.”  When I read this observation, I knew that the authors were folks who view the heart as a pump, a pump for the benefit of the brain.  It occurs to me that this may not be a biological quirk as much as a mystery.  Perhaps we don’t know nearly as much about how the body works as we pretend to in our high tech and information saturated era.

So, I wonder – what is running their bodies if their brains are dead?  I disagree with the NY Times journalists that it is “a quirk.”  This is a most basic question yet it challenges our entire brain-centric reductionist view of what life is (rather, how it is measured) and how it is readily distinguishable from death.  My question is simple – how is it that a brain dead person can still live – doesn’t science have a bit of explaining to do here?  No, evidently not if one takes the reductionist view.  The brain is an organ of the body, but it is not on its own “the intellect” or “consciousness” (unless you are a tightly-bound reductionist, and they are represented among neuroscientists).  Since when does only the brain count in making a determination of death?  If the heart is not dependent on the brain, then why should the brain death determination override the determination of death?

Perhaps beyond the difficulties with reconciling our imposed definitions on life and death, or at least attempting to do so in order for them to be consistent with what we think we “know,” there is something that cannot be measured quantitatively but is rather a quality of being.  What if Black Elk, the blind Lakota sage, was able to see with the eye of his heart?  What if there are other ways of looking at the heart that we have not yet discovered?  I’m sure this won’t be the last time I ask this question.

Finally, one last observation.  In this country where provision of medical care is part of our free market economy, does this have bearing on a patient’s quality of life or right to continued care?  Here is a recent law review article about the tort of “wrongful prolongation of life,” which are the only lawsuits of which I am aware involving failure to follow the stated wishes in an advance medical directive.

If all of these questions are too much, I suggest some beautiful artwork on a similar theme.  It is work by Mihoko Ogaki called Light After Death and you can take a look at it here. Thanks to Tomasz for sharing it on Google+!

©Barbara Cashman  2014   www.DenverElderLaw.org

Health Care Advance Planning – Why Aren’t More People Doing It?

Independence Pass in June

First, off – let’s define some terms here.  Most everyone I talk to knows what a living will is. In Colorado, this is known as an advance medical directive or declaration as to medical treatment.  The living will is widely recognized because it has an effective advertising department in the form of U.S. Supreme Court decisions (remember the cases of Terri Schiavo, Nancy Cruzan).

Does the availability of this document – the living will – really create peace of mind, or is it often just a false sense of security?  In my experience I would say . . .  it depends.  Many people put lots of faith in the document itself.  I think this is where the false sense of security comes in.  If a declarant (the legal term for a person executing an advance directive) hasn’t had a productive discussion with family members or loved ones who will be the ones to effectively ensure that a declarant’s wishes are followed, this can often lead to a false sense of security.  Yes, many people would rather simply sign an advance directive and state their wishes without having the often troublesome and very emotionally charged discussion around those end-of-life wishes and how they are to be effectively negotiated and honored.

The ABA recently updated their Consumer’s Toolkit for Health Care Advance Planning and it covers helpful topics and is an excellent resource.  Executing an Advance Directive is no mean feat.  I offer it to my estate planning clients, but I do so with the caveat that they must discuss it first with the person or persons who will be emotionally involved in the declarant’s end of life care. As a result, not nearly as many people actually complete a living will – but I don’t think this is necessarily a failure on my part.  People need to think before they choose, and the best way to do this thinking is . . not in a vacuum!  Fortunately, there are several good resources available to help folks initiate these conversations.  You can look at the Conversation Starter Kit available at The Conversation Project  and there is even a card game to sort out these values-laden questions with family and loves ones – the “Go Wish” Game from the Coda Alliance .  One of my favorite documents is still the thorough (some would say exhaustive) health care values document available from the University of New Mexico.  When is a good time to have this conversation? Anytime of course, but I think it’s a good idea to start percolating these conversations as we enter the number of holiday times in the fall and winter.  If you want to explore state specific instructions and forms, the Colorado information made available by Caring Connections is very helpful.

I started thinking about this topic again as I read my latest issue of Bifocal, the e-zine published by the ABA Commission on Law & Aging.   I found especially interesting Charlie Sabatino’s article entitled “Eight Advance Care Planning Lessons That Took Me Thirty Years to Learn.”   His first lesson?  Most advance directives aren’t worth the paper they’re printed on!  Yes, there’s that false sense of security theme again . . . Why would he say this? Well, it goes back to the difference between having a document signed and having an understanding entered into .  Yes, we are free to make our choices, but the fact is, many of us making those choices are not adequately informed about the consequences of our expressed choices.

In Colorado, we have some of the most advanced law in the country pertaining to medical decision-making and autonomy.  See Colo. Rev. Stat. 15-18-103.  The Colorado Medical Treatment Decision  (Living Will) Act was repealed and reenacted in 2010 and several new tools were added.  They include: revisions to the regulations governing the CPR (cardiopulmonary resuscitation) directive; a new and improved Living Will Act; and a new provision regarding that Vulcan green form you might have seen in a hospital or skilled nursing facility –establishing  the Medical Orders for Scope of Treatment (MOST) process.

As I often reiterate to people I speak with, a living will can be a useful tool, but it has very limited application to end-of-life treatment and is relevant in two settings primarily –where there is a persistent vegetative state or a terminal condition.  I wholeheartedly agree with Sabatino’s second point in his article – that the real task of advance care planning is appointing and informing a health care agent under a medical durable power of attorney.  I instruct my clients that they need to consider this one carefully, especially since adult children of elders are notorious for their level of denial regarding disease and death in old age.  Many of my age cohorts (baby boomers) cling to the belief that hospice care is akin to “giving up” and may have serious emotional difficulties with following a parent or loved ones state wishes – especially if they haven’t had that heart-to-heart conversation with the person beforehand.  Nevertheless, naming a person in charge of decisions is a far more effective technique to manage choices around care than a statement of wishes.  But don’t get me wrong, I recommend the full package for my clients, but I recognize that many people are not really ready for such an excursion, so I insist on the conversation in advance on the appointment of a health care agent.  I often ask clients in this context – could this person (if they are selected as agent), adequately express  and follow your wishes and make difficult choices that other family members may not agree with?  Then perhaps you have selected the appropriate agent.  It needs to be a person carefully selected, knowing that they would be able to make a difficult decision for you and still be able to sleep at night.

These discussions are not usually easy to start, but they are invaluable and they help us sort out what is important in our life that needs to be honored in our demise.  The easiest way is to simply begin.  This topic is great fodder for a Thanksgiving table conversation!

©Barbara Cashman 2013     www.DenverElderLaw.org