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With the recent conflict arrising
from the Terri Shiavo tragedy, where the Republican run government in Florida and Washington, beckoning to the wishes of the
Christian fundamentalists tried every dubious means to circumvent the 14-year ordeal that has played out in the courts, here
are some of my experiences and opinions on the Right to Die.
The GOP which claimed to represent less
intrusive government, tried to circumvent not only states rights but the Judicial branch of the government by forcing the
issue into the federal courts. The federal judges supported the findings of the state courts, probably seeing a bigger
precedent than the death of one woman in a persistent vegetative state. After her feeding tube was ordered removed,
and there was no legal recourse given to reinsert it, Terri Shiavo died on March 31, 2005.
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I have worked for years in human services
positions, as a certified nursing assistant and home health aid. The event described below took place in a time before Living
Wills were established and when the "authorities" controlled your health-care decisions for you. This story about "Mark" is
a first-hand accounting of the difficult family decisions that have to be made.
Mark's Coming
of Age
Rob Boyte
July 1990
New Orleans, 1980
It was just last month that I first met Mark.
We only spent the day together but it feels like we knew each other longer. Maybe it was the intensity of one-to-one that
day I stayed with him.
I was working for a respite care agency, staying in peoples' homes and caring for their handicapped
dependents while they got away for a while. And so it was that I met Mark, 19 years old and wasting away with muscular dystrophy.
His only mobility was the electric wheelchair to which he was confined and which he could still operate with the remaining
motion of one hand. Otherwise, he had to be lifted in and out of the chair, the bed, and onto the toilet. He had to be bathed
and fed by others. His mother usually provided this personal care and on the day that I stayed with him, feeding was the only
task required. On the only occasion that I had to place his penis in a urinal, I gathered that he was quite self-conscious
of having others, or at least strangers, attend to these personal needs. Although Mark lived with his condition of personal
dependence on a daily basis, he was still a self-conscious teenager.
We talked a lot that day. He told me of the progression
of his disease, how it started at age 7 and how crutches gave way to a wheelchair by age 13. On the wall was a photo of Mark
at about that age, looking quite the average, smiling, exuberant 13-year-old, except for the almost unnoticed handles of a
wheelchair at the edge of the picture. The tragedy of it struck me for a moment, knowing the life of an active boy had been
missed, but Mark was alive, here in his chair so I didn't dwell on what could have been.
As we talked of current events,
and critiqued the popular movies, our different perspectives came into view. As a middle-aged man, I enjoy these few opportunities
to talk with adolescents, to hear their fresh insights and discoveries, as well as their misconceptions and errors of logic.
From a more steady position of maturity and experience you can observe the turmoil of thoughts being influenced by new input
and fluctuations in hormones.
With Mark, there was not only our difference in age that gave us differing perspectives,
but also our difference of mobility. He was a recipient of electronic age miracles and had the usual adolescent toys of video
cassette recorder, personal computer and video games. We shared an appreciation of modern technology, but it was of particular
interest to him as his very mobility and quality of life depended on it.
Mark was a young man with vulnerabilities
of the heart. The young woman who had captured his fancy lived in another city and they only saw each other once a year at
a summer camp for the physically disabled.
Mark was very preoccupied with thoughts of this girl, as it was nearing
the time for summer camp. I can't recall her affliction but she was more mobile than him. Their relationship was an innocent
adolescent one. He told me they had kissed. I suspected they had felt more. He was concerned that she would find another boyfriend,
one with more movement, or that she wouldn't be there this summer. His were the normal over-inflated anticipations of an adolescent
mind, oblivious to reality in the pursuit of love.
That was last month. Mark never made it to camp. I was called on
this overnight job because he was seriously ill and his mother needed some rest. It was an unusual emergency assignment. Normally,
when I stayed at peoples' homes it was for the primary care giver to get away. This time the mother would be at home in her
bedroom while I stayed the night with Mark.
Mark had been bedridden for several days and was much thinner than when
I saw him last month. His mother asked if he remembered me, and he feebly said yes, showing little attachment to his surroundings.
He hadn't been eating or drinking and I was shown the water and the soda, which I was to try to get him to drink. His mother
attempted cheerfulness, but the gravity of the situation was evident, as well as its toll on her. She went to her room and
I sat by Mark's bed.
He was not the young man of a month past. Youth is measured physically by health and vitality,
and not to be found in this emaciated nonfunctioning body. It is also measured by naiveté and innocence. Mark had experienced
too much pain in his 19 years and somehow I felt he was now aware of his mortality, which is not the usual adolescent awareness.
We
didn't converse that night. Mark was uncomfortable, continuously asking to be moved. When I changed his position it would
be just a few minutes before he would complain again. I offered him liquids several times and he refused to drink, with a
conscious determination.
I sometimes feel guilty for being so irritated throughout the night with Mark's constant
demands to be moved. I had not slept that day and was not prepared to stay up all night. Was this what his mother had been
living with for more than a week? Finally the demands came less frequently and Mark went to sleep. I must have had a couple
of hours of sleep on the pallet on the floor next to his bed before being awakened at 4:30 a.m.
Mark was mumbling incoherently
and I asked through the darkness, "Mark, are you alright?"
He simply said, "Are you kidding?"
I was immediately
aware of both the inanity of my question and the biting sarcasm in his. Nineteen years old and dying from muscular dystrophy,
and I ask if he's alright.
I turned on the light and saw that Mark was sweating profusely. The bed was already soaked.
He was dehydrated and in shock, and most probably dying. I woke up his mother. She went to his side, held his hand and stroked
his head, reassuring him and perhaps herself that this was the right course.
I asked if she wanted me to call Fire/Rescue.
Almost imperceptively, as if it were a thought not spoken, she said, "I don't want them to resuscitate him." I understood.
I
understood why Mark was still at home with his deteriorating condition. I understood his refusal to eat and drink, and although
I was not a part of the private affairs of this family, I understood that Mark and his mother had anticipated this moment.
I
sat on the bed by Mark and held his hand while his mother went to call his father. Mark was still vocalizing weakly, incoherently,
and then he stopped. With one spasm of the chest it was over. Mark lay still on the bed, eyes open, pupils dilated.
Death
has been relegated to professionals for so long in our society that it is rare to encounter it quietly in the comforting surroundings
of home. We've even come to require an authority to pronounce someone dead, but it was my understanding that dilated pupils
meant that brain function had ceased. Mark's dead stare was disquieting, so I stroked his eyelids gently with my fingers,
as seen in countless dramas on the screen. It's not that easy. They refused to stay closed, betraying the illusion that a
lifeless body is peacefully asleep.
I went to Mark's mother and told her that he had died. We went back to his bed.
Were we sure? It's a guessing game with modern technology. At what point is it impossible for someone playing God with a machine
to resurrect a person who's already gone through the ordeal of passing on. We waited five minutes, then I called the police
to report a death after lingering illness. I described the signs of death and they agreed that only the Coroner would be sent.
Mark's father arrived, so I left this family for a few minutes alone before the authorities came.
Guilt is a pervasive
emotion that slips around the edges of rational thought. I know that the events of this story progressed to the only reasonable
conclusion, but now and then I realize that we sometimes make decisions that involve the life or death of another. I feel
the decisions here were right and ultimately were made by Mark's mother with my support.
She was a mother who made
a tough decision, and I hope she knows she decided correctly whenever a feeling of guilt slips through. I'm just thankful
that she was there, for I could not have made that decision on my own, and would have been required to call 911 as soon as
I saw Mark in shock. (This was before "Do Not Resuscitate" orders were a legal option). They probably would have made it in
time to disrupt the natural order of things and there is no telling how long Mark's feeble, wasted body would have suffered
the indignities of assault before his degenerative disease finally, mercifully silenced his heart.
Link here for more info on Living Wills
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This article was published in The Gainesville Sun (Florida) Saturday,
August 12, 1995,
titled: Living wills make death simple
Living Wills
Brenda Boyte, RN
Rob Boyte, CNA
July 1995
Do not go gentle into that
good night
Old age should burn and rave
at close of day;
Rage, rage against the dying
of the light
Dylan Thomas, the poet who
wrote these death defying sentiments, died at the relatively young age of 39 in 1953.
Not only was his field of reference on "old age" limited, but he lived in a world where medical technology had not
yet created the ethical dilemma of how long to artificially prolong a life that nature had abandoned.
Since Dylan's era, we have
seen the use of feeding tubes and respirators keeping comatose patients alive, often with underlying terminal illness and
with no prognosis for recovery. Most people, when observing irreversibly comatose
patients, will agree that quality of life is more important than having another breath forced on you by a machine.
During the 1980s, the personal
horror stories of people in a persistent vegetative state being forced to remain on life support machines against their previously
expressed will, caused a reassessment of our right to refuse certain medical procedures.
Since December 1991, the federal Patient Self-Determination Act has mandated that health care facilities inform patients,
on or before admission, of their right to make decisions in their medical care, including the right to refuse medical or surgical
treatment and the right to formulate advance directives.
Advance directives, or a living
will, is a witnessed, written document stating the limits on the use of life-prolonging treatment if you are in a terminal
condition. Advance directives are not just for people going into the hospital. Anyone who has ever thought that they would not want to be kept alive by machines
if they were in an irreversible coma, should immediately fill out a living will.
Nancy Cruzon was a healthy
32-year-old woman when she was terminally injured in an auto accident in 1983. Although
she had previously expressed verbally that she would not wish to be kept alive in an irreversible coma, the medical establishment
and the courts forced this on her against her will and the family's protest for seven years.
The national public debate over this and other such cases prompted the enactment of the Patient Self-Determination
Act.
However, a survey conducted
at the University of Florida in November 1994, revealed that nearly half of Florida's elderly - and three quarters of Floridians
of all ages - have not made advance directives stating which life prolonging measures should not be used if they are dying
with no reasonable chance of recovery.
Health care professionals
all too often see the negative results of this denial of the inevitable. We are
all going to die - eventually. Yet, so many do not acknowledge this fact until
it is too late. Then, health care professionals are forced to use heroic measures
where they know it is both futile and absurd.
Many, with long term illnesses
such as cancer or AIDS, see the inevitable, and take advantage of the advance directives.
In the end-stage of their affliction they have "Do Not Resuscitate" orders in the event that they show signs of imminent
death. These patients are given palliative, or comfort care, and often die so
serenely that people holding their hand don't know exactly when life slipped from them.
CODE BLUE! CODE BLUE! Now, contrast this natural serenity with a full code. As an example, let's say grandma, who is 82 years old, and has terminal cancer or an untreatable heart
condition, has been found in her hospital bed, unconscious and not breathing, with no palpable pulse. Because no one anticipated this moment by making advance directives, she is considered a "full code."
The first nurse to the scene
drops the head of the bed, puts a board under it and starts cardiopulmonary resuscitation (CPR), by pushing on the chest and
forcing air into the lungs. Shortly, the code blue response team arrives, and
there are now between 6 to 12 people clamoring in the room with the crash cart, EKG monitor, and other equipment. The adrenalin is so high that it's contagious as this organized pandemonium proceeds to bring this elderly
woman back from the dead. A nurse with a notepad watches, writing down everything
being done and the time.
Grandma's gown is removed,
EKG leads are placed on her chest, while CPR continues. Partners switch as each
one tires of forcing chest compressions. Everyone may be ordered to "clear" away
as current from defibrillation pads is shot through her chest. A tube is inserted
into her airway to facilitate air flow, and anticipating surgery, a catheter is being inserted into her urethra. Luckily, grandma is unconscious, for she would find this exposure quite embarrassing. If she regains consciousness, more than likely she will fight the people around her and will have to be
restrained, having her arms and legs tied to the bed.
This effort will proceed for
perhaps an hour, or until the attending physician determines it is no longer possible to sustain life. If her heart starts beating again, she will be moved to an intensive care unit where the same scene will
be repeated each time her heart stops beating. These heroic measures are rough
on the body, even for young people. Grandma may have a rib broken, another complication. Brain damage? It's a distinct possibility.
Grandma may thus survive in
an irreversible coma, which means a tube for feeding is inserted into her stomach by way of her nose. Eventually a tube will be inserted directly into her stomach through and incision.
What we've bought with the
modern ability to keep people alive is the chance to die a second time. This
could come within the time of the code, or after days, weeks, or months of a vegetative existence. That is why so many elderly accept that they are near a natural death, and ask not to be resuscitated once
they've gone gently into that good night.
All patients going into the
hospital, both young and old should take advantage of the advance directives, and make your wishes known in writing. You may also appoint a surrogate to make decisions for your treatment should you become
incapable of doing so for yourself. Discuss your wishes with your family, so
they aren't left guessing what you would have wanted.
All those healthy, vibrant,
young people who've never considered that they are actually mortal might remember Nancy Cruzon and realize that accidents,
both external and cerebrovascular (stroke) can happen to anyone at any time. A
living will costs nothing, and can save so much grief.
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