Terri Schiavo Case Shows Some Problems With Living Wills

Bioethics   |   Steven Ertelt   |   Jan 1, 2009   |   9:00AM   |   WASHINGTON, DC

Terri Schiavo Case Shows Some Problems With Living Wills Email this article
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by Pamela Hennessy
October 17, 2005

LifeNews.com Note: Pamela Hennessy has been a volunteer with the Terri Schindler-Schiavo Foundation since November 2002 and was often a spokeswoman for Terri Schiavo’s family during their battle to save Terri from a euthanasia death. This article originally appeared in the Empire Journal.

Since the court-sanctioned death of Florida’s Terri Schiavo, the conversational media and written press have predictably and (almost) obediently echoed sentiments of self-proclaimed bioethicists in touting living wills as a measure to ensure that one’s own autonomy and personal directives are observed and held fast to in times of medical crisis.

Using the unfortunate Terri Schiavo as their unconsenting poster child, a good many media outlets and bioethics ‘experts’ have screamed from the rooftops that no one should ever allow a fate such as hers to befall them. In other words, sign your life away now so that no one can fight for it later, should you become unable to speak for yourself.

Traditionally speaking, a living will is an excellent mechanism for denying yourself unwanted medical treatment, so-called heroic medical measures or resuscitation in the event of a healthcare catastrophe. They, however, do not address the needs, sovereignty, personal choices or desires of those of us who aren’t in a gratuitous dash to let someone else decide our fate.

It’s a pity that the mainstream press and media overlooked the fact that Terri Schiavo, while still in full capacity, could never have consented to the removal of enteral nourishment upon the event of a profound neurological insult. Indeed, it wasn’t until 9 years after Schiavo suffered her injuries, and at least a year after her husband and guardian petitioned the court for the authority to withdraw her tube-provided food and water, that such an act could take place and – even then – only under certain circumstances. It is, therefore, unreasonable and disingenuous for columnists, bioethicists and ‘scratch’ attorneys to promote the idea that a simple piece of paper would have circumvented the predicament that the Schiavo case triggered. It is also completely false to say that a living will, in the traditional sense, is a document crafted to protect the patient’s best interests. It’s anything but.

In sum, a great disservice upon the general public has been committed by those promoting the idea that a living will is a means to ensure personal autonomy. Understanding that each of us holds dissimilar values, beliefs and desires, ushering people into signing their lives away under duress is something I view as a criminal act and not in keeping with the intent of the laws that allow us our own privacy and decision-making.

A living will has nothing to do with living. It, instead, has everything to do with dying. It has to do with granting permission to others to withdraw medically necessary care from you so that you can either die naturally or die quickly – whichever comes first. For many people, the provision of artificial life support when death is eminent can seem unreasonable and unwanted. That’s certainly understandable. But, consenting to such a thing can be a hazard inasmuch as it opens the door for the removal of medically necessary treatment when death isn’t eminent.

Consider the case of another Florida citizen, Hanford Pinette.

Mr. Pinette committed to a living will in 1998 which declared that he would refuse himself artificial life support in the event his death was eminent and his condition irreversible. He also took care to declare that his wife, Alice, should act as his attorney-in-fact and healthcare surrogate should he become unable to fend for himself.

Late in 2004, Pinette was admitted through emergency to a hospital in Orlando, Florida after suffering congestive heart failure. He was placed on a ventilator and a dialysis machine. Doctors informed his wife that his condition was “not likely to improve”. Then, they informed her that they intended to “follow his living will“ and remove the provisions of ventilation and dialysis. Mrs. Pinette objected and for damn good reason.

According to Alice Pinette, ‘Hank’ was alert and oriented, there was no prognosis tendered that could determine his death was eminent, he spoke (sporadically, but he managed), he responded physically to her directions and touch. He was fighting for his life. By her accounts, he simply wasn’t ready to die.

The hospital actually petitioned the circuit courts for the authority to remove Hanford Pinette’s provisions of ventilation and dialysis, over the objections of his named surrogate and as a means of “enforcing his living will”. They won, over Pinette’s named proxy, and those medically necessary treatments were taken away from him. After two hours of struggling for air, Hanford Pinette – a nondying, cognizant and alert man – succumbed and was pronounced dead in an Orlando, Florida hospital on December 10, 2004.

So, are you sure you want a living will?

What the media, press and bioethics intelligentsia have been remiss in explaining to the public at large is that a ‘living’ will can actually make you ‘dead’ before your time. Living isn’t the operative term in the phrase, to be perfectly candid, and should be replaced with the word ‘killing’ to bring unreserved clarification to the definition. There are alternatives and they are well worth exploring and talking about. Before you commit to your own demise, think of those who love you and do them the favor of taking your life a bit more seriously.

The International Taskforce on Euthanasia and Assisted Suicide has painstakingly crafted what they call the Protective Medical Decisions Directive. In it, an individual can specify what means of medical intervention they deem appropriate and for how long and under what circumstances. It also allows the individual to name or declare another as their surrogate.

This is an intelligent approach to the subject. While it’s easy to say ‘just let me go’ when we are young, healthy and beautiful, it’s not realistic or even sane to fancy the thought of being dead instead of being cared for, should we become unable to manage on our own. We, like any other critter, have an instinct that drives us towards survival. We do, indeed, have a will to live. None of us wish to be dependent, disabled or vulnerable when we presently enjoy an entitled life of health, youth and vigor. But, if you consider the alternative, it’s rather cavalier to ham-handedly reject care in favor of utter demise.

Pay no mind to what Michael Schiavo’s lead counsel, George Felos espouses as beautiful and dignified. Death isn’t pretty. It’s not designed to be. Don’t be too quick to embrace it over your natural instinct to thrive and survive, even if life is tough or outcomes are unknown. Your life is, after all, the only thing you truly have to call your own.

I think the media should make mention of hospital and nursing home Ethics Committees. I think they should talk about Futile Care Policies that every hospital and nursing home has in writing. I think they should educate people on how to look after themselves and stop selling the empty promise of autonomy, wrapped up in a legally diabolical document known as the living will. I think we, us, all of us, deserve one hell of a lot better than this.