Last Rights

Last Rights

    The right to die, or as others call it, Death with Dignity, is something both ingrained in us and yet something that is terrifying.  Some in the medical profession say that it is a "gift" of sorts, my uncle once telling me that in his observation at least, (his specialty was thoracic surgery) patients without much of a chance but with a strong will to live usually defied the odds and came through...but the opposite held true as well; those who had a high percentage of favorable odds but were convinced that they would not survive the surgery usually died on the operating table.  Some have said that the elderly also have this "gift," this ability to turn off their internal life support, choosing instead to override the machinery and simply move on.  But such decisions are sometimes hidden inside us, and yet we are sometimes able to make them well ahead of time when we are healthy...advanced health directives and POLSTs (Physician's Order of Life Saving Treatment) are done with our blessings.  Such forms often ask: Should you be found unconscious at the scene, do you want to be revived?  Just CPR or any means possible?  Brain dead but heart beating?  Feeding tubes?  Total paralysis?  Many of us fill out such forms with a complete peace of mind when doing so, even telling family and friends that should we ever reach "that state," just pull the plug.  But when that time actually comes, would our minds be changed?  And what if you actually taught a college course on making such decisions...and then were actually faced with making that decision?  Life or death, or in this case, the death of a loved one.

    These thoughts all came back to me as I read an earlier piece in The New York Times titled, "A Life or Death Situation."  Here is how author Robin Marantz Henig began her article: If Margaret Pabst Battin hadn’t had a cold that day, she would have joined her husband, Brooke Hopkins, on his bike ride.  Instead Peggy (as just about everyone calls her) went to two lectures at the University of Utah, where she teaches philosophy and writes about end-of-life bioethics.  Which is why she wasn’t with Brooke the moment everything changed.  Brooke was cycling down a hill in City Creek Canyon in Salt Lake City when he collided with an oncoming bicycle around a blind curve, catapulting him onto the mountain path.  His helmet cracked just above the left temple, meaning Brooke fell directly on his head, and his body followed in a grotesque somersault that broke his neck at the top of the spine.  He stopped breathing, turned purple and might have died if a flight-rescue nurse didn’t happen to jog by.  The jogger resuscitated and stabilized him, and someone raced to the bottom of the canyon to call 911.  If Peggy had been there and known the extent of Brooke’s injury, she might have urged the rescuers not to revive him.  Brooke updated a living will the previous year, specifying that should he suffer a grievous illness or injury leading to a terminal condition or vegetative state, he wanted no procedures done that “would serve only to unnaturally prolong the moment of my death and to unnaturally postpone or prolong the dying process.”  But Peggy wasn’t there, and Brooke, who had recently retired as an English professor at the University of Utah, was kept breathing with a hand-pumped air bag during the ambulance ride to University Hospital, three miles away.  As soon as he got there, he was attached to a ventilator.  By the time Peggy arrived and saw her husband ensnared in the life-sustaining machinery he hoped to avoid, decisions about intervention already had been made.  It was Nov. 14, 2008, late afternoon.  She didn’t know yet that Brooke would end up a quadriplegic, paralyzed from the shoulders down.  Suffering, suicide, euthanasia, a dignified death — these were subjects she had thought and written about for years, and now, suddenly, they turned unbearably personal.  Alongside her physically ravaged husband, she would watch lofty ideas be trumped by reality — and would discover just how messy, raw and muddled the end of life can be.

    What complicated this particular issue was that Peggy was brought in to testify for a patient with ALS (amyotrophic lateral sclerosis) a neurodegenerative disease which can slowly atrophy muscles that control movement, eating and breathing...a slow and unstoppable death.  The lawyer against allowing the patient in question to end her own life asked Peggy in court if what had happened to her husband would affect her testimony, that "...this accident presented some pretty profoundly serious challenges to your thinking on the subject?"  She responded by citing autonomy and mercy, saying, "...Only where both are operating --that is, where the patient wants to die and dying is the only acceptable way for the patient to avoid pain and suffering-- is there a basis for physician-assisted dying.  Neither principle is sufficient in and of itself and, in tandem, the two principles operate as safeguards against abuse."   But wasn't this what her husband had wanted, his final wishes, which were to not be kept in such a state?  As it turns out, the answer was no...and their blog proves an interesting journey into what it means to be so close to death and yet despite its hardships and physical limitations, to choose life...even if having made a different decision in the years earlier.*

    As I've mentioned before in earlier reflections, none of us will ever really know how we will feel until that moment actually arrives.  A gun placed to your head, a debilitating cramp in deep water, a serious accident that leaves you immobile, a paralyzed body face down on the carpet not responding to pleading voices above you.  At those moments, the decisions rescuers and hospital personnel will act on will have probably all been made by you from an earlier date...but at those moments when you are unconscious and perhaps barely clinging to life, will those still be your decisions?  Some states such as Oregon, Washington, California and Vermont already have such laws on their books...that should you be revived and end up in such pain, mental or physical, that you can make a decision to end your life.  Also many countries have varying degrees of right to die laws, some only able to be carried out with court orders and some allowing paying a company to help you in your choice (what some would term assisted suicide). 

    With our animals, we often define such life decisions as a quality of life vs. a quantity of life.  At those points, we sometimes find it easier to differentiate within ourselves when we are keeping our animal alive because it it better for it or it is better for us.  And indeed, Peggy found that out as her husband went on ventilators and other life-sustaining equipment.  In addition to hospitals and others making decisions, she was now faced with well-meaning friends and family also making decisions...keep him living.  It almost seemed --as it sometimes does with our animals-- that everyone was being considered except the one person or being that was affected.  If your breathing was slowly diminishing and each day your heart pounded harder and harder to gasp for that extra bit of oxygen from your blood, if each day seizures shook you so violently or pain raked through you like lightning, or voices tormented you as if a crowd were yelling --or perhaps it was simply a contemplative decision that you had thought long and hard about and decided that you had lived a full-enough life and that it was time-- who would you want making your decisions?  Keep you alive at any and all costs, perhaps all while witnessing the lives of those around you diminish, the bills increasing while your weight and physical body diminishes? 

    Such questions sound easy to contemplate now, but whether in a hospital bed or standing beside one with a loved one in the bed, the questions and decisions suddenly all become muddled.  At any age, life is so precious that one would probably think that there is one more day to revel in, one more book to read, one more place to visit, one more loved one to hug, one more person to give your forgiveness to.  At those moments, all bets might be out the window...and in the end, it might be the right decision, that last right.


*Four years later, and six days before author Marantz's article was published, Brooke passed away...his decision, his timing, his bravery, his call.