My dad was an amazing man. He was joyful, kind, and
caring to everyone he met. On October 14th
he left us to be with his savior in Heaven.
Dad did not have an easy life, in his last five years he suffered with Amyotrophic
Lateral Sclerosis (ALS or Lou Gehrig’s Disease). He lost the use of his legs entirely, riding
around in a motorized wheelchair. He
also had weakening of the muscles in his torso and diaphragm.
Dad never lost his love of life, on October 6th he
was organizing a Tootsie Roll drive at church, my mom and I close behind to
take orders from him and tie aprons on his fellow Knight’s of Columbus
volunteers. He never let the disease get
to him or bring him down. He is and will
remain an inspiration to me.
Dad and I had a special relationship. I am adventurous in certain aspects of my
life, but having severe vision issues since birth, some of the more mundane of
life’s adventures have proven challenging for me. These were things like learning to: ride a
bike, drive a car, water ski, etc. I
would flatly refuse to learn, saying such skills were not necessary to life and
dad, sagely disagreeing with me, would come up with a creative way to help me
over the hurdle.
I learned to ride a bike in the grassy field behind our
house, so I didn’t need to worry about falling, Day after day, out we would go, Dad so
patient and calm until his timid little girl could brave the sidewalk like all
of her friends. The point here is that
my father pushed me; he never let me rest on, “I just can’t do it Dad.” He wanted me to be what he knew I could, not
stop at my presumed limits.
On October 9th, Dad’s lungs failed him. He couldn’t catch his breath, even with his
Bi-pap machine and as EMS took him to the ambulance his heart stopped
beating. They performed CPR and used
their paddles, but the notes say that Dad was without oxygen for 19 minutes
that afternoon.
Our family had known for a while that we needed to have the
“vent talk.” By this I mean, we knew
that the road we were on would likely lead to Dad being placed on a ventilator
to assist with his breathing full time.
People with ALS often have to decide if they want to live life on a vent
or if when the disease has progressed to their lungs they will refuse the vent,
likely leading to an earlier death. Dad
never wanted to talk about this, so we never did.
When an acute incident happens however, there is no talking. By the time we saw Dad in the emergency room,
he was vented and that was that. No decision
available, no discussion necessary. Mom
and I were left to wonder, “What now?
Will he be able to come off the vent or will this be his new life?” At the time we didn’t know that he had been
without oxygen for 19 minutes.
Here is the funny thing I have learned about hospitals…they
don’t tell you everything. We knew Dad’s
condition was critical, we knew to sleep next to the phone for a call that
night, but it was several days later when we found out how long he had been
gone before they got his heart beating again.
It very likely wouldn’t have changed anything, but I always think more
information is better than less.
Up to ICU we went a few hours later, tubes everywhere,
monitors beeping and flashing, and a straight shooting nurse practitioner who asked
us what the hospital should do if Dad’s heart stopped again. Still no one told us how long he had been
without oxygen or that Dad’s heart had actually stopped twice already, not just
once as we all believed. And so began
family conference number one, ending with the decision to make Dad a Do Not
Resuscitate (DNR).
They had Dad on what they called a “Hypothermia
Protocol.” A few mistaken descriptions
from clinicians and almost two days later we discovered that this meant they
cooled his core body temperature to 92 degrees and left him there for 24 hours,
and then they slowly warmed him back to a normal body temperature.
Every clinician had their own idea of when we should see
progress. Many told us to not give up
hope and keep watching Dad, but none volunteered a time frame. Neurology was kind and thorough, but
volunteered very little information.
By Saturday, this daughter wanted answers. I cornered a neurologist and asked what I
thought was a simple and common question.
“How long until you would no longer expect to see improvement? When do we need to start talking about the
difficult decision of removing Dad from the vent?” Like pulling teeth I got an answer of 72
hours after rewarming.
As we kept vigil for 12 to 15 hours a day, Dad’s condition
declined. He opened his eyes only a few
times and they were unfocused, He ran a fever, which kept creeping higher. His blood pressure became unstable.
“His pressure is low, I am going to do such and such to raise
it.” We would hear. Then, “his pressure
is too high, I need to up his sedation.”
All the while we were instructed to watch for signs that he is waking
up, and a hope that we could assess his ability to function.
By Sunday, we reached our limit. We had found out more about the EMS report
and were continuing to hear a variety of stories from doctors, never giving a
real prognosis, and offering very little information.
The interaction that proved to be the final straw was a pulmonologist
who cavalierly said that we would have to meet with neurology and then decide
about whether or not we wanted to continue on the vent. Our stunned reaction to his callous
presentation of that information caused his fellow physician to very condescendingly
say: “A neurologist, that’s a brain doctor.”
A brain doctor? No it isn’t. Neurology is complex specialty dealing not
only with the brain, but with the nervous system, muscles and movement. My father had ALS, a neurological condition,
we are very familiar with the specialty of neurology and “brain doctor” isn’t
the half of it.
My mom, sister, and I decided it was time to regain some
control. We were stressed, overwhelmed,
tired, and confused. We were feeling
pushed around, taken advantage of, and out of control. We are not ignorant people; we knew what it
meant to make my father a DNR. It meant
that if his heart stopped again, the hospital staff would allow him to die and
not try to intervene. We knew that we
were hurdling ever closer to making the decision to remove him from life
support and allow him to die. We knew
that the constant sedation medication would make it incredibly hard to know if
Dad would even be able to wake up.
We felt helpless and out of control. Dad’s nurse came to find us in the waiting room;
she handled it well as we less-than-eloquently explained how we were frustrated
with the lack of information and were downright insulted by the pulmonologist
calling a neurologist a “brain doctor.”
The nurse was kind and calm, she said that we did have options, and
explained them to us. We didn’t want to
prolong Dad’s suffering unnecessarily and decided that if we saw no improvement
by the next afternoon we would remove the life support.
On the morning of October 14th, Dad’s fever had
risen, his blood pressure was more unstable, the vent settings had been raised,
and he was completely non-responsive.
Mercifully, his declining condition helped to validate our decision to
remove him from life support.
My family is devoutly Catholic, and we were blessed to have a
priest-friend say Mass in Dad’s room during his final hours. It was beautiful and grace-filled, a precious
balm for the road ahead. When everyone
had made their peace and said goodbye we signed the paperwork and stood behind
the curtain as they unhooked the ventilator and gave Dad medications to keep
him comfortable. When allowed, we
returned and softly prayed him to his Maker.
As a unit, my family is calm, intelligent, rational, and
faithful. We like to have all of the
necessary information to make a decision and do not shy away from difficult
ones. Once made, we do not second guess
ourselves, or require handholding or constant validation. We know the consequences of our actions and
decisions and bear them in their entirety.
When Dad passed away there was not a dry eye in the room,
including clinicians. The very kind
woman from hospice even told my sister that Dad’s death was the most peaceful,
prayerful, loving death she had ever witnessed.
Dad lived his whole life with integrity and honor and as a
family, we were determined that his death would be the same.
We are not the norm, the clinicians at this hospital were
woefully unprepared for an educated and secure family. Most were visibly shocked that we understood
Dad’s condition so well. I am at peace
with how my father died and I don’t think I would have made different decisions
if given more information upfront.
However, I am still disappointed that all of the necessary information
was not volunteered by the clinical staff throughout Dad’s hospital stay.
So, how does this tie into my tales of bike riding? Prior to this week, I was a bioethicist who
would only scratch the surface of an end of life debate. I don’t like to think too deeply into the
issues, because they are difficult to face.
Dad however, knew better for me, his final act in this world was one
that pushed me deeper in my career and helped me transition from grass to
sidewalk in my discussion of end of life issues. It is important to talk about these things
and not just play it safe.
Dad’s last week led me to some important questions. It hasn’t led me to all of the answers, but
that is why bioethics is a career of open debate and discussion.
1. How
much information should be given to the families about the condition of their
loved one? And when should this
information be presented?
2. Should
families be presented with all options at the beginning of the hospital visit,
to maintain a feeling of control in such a stressful situation?
3. When
is a clinician focusing on the positive aspects of the care too much? Should we train our physicians to stay away
from avenues of “false hope?”
4. Dad
had a 5% chance of regaining consciousness after the Hypothermia Protocol. Among this 5% there are varying levels of
ability, so it was not a guarantee that if he woke up he would be able to do or
understand all of the things he could before his cardiac arrest. Is it worth it to put the families through
the 6 days of pure hell we experienced, for a 5% chance of survival?
5. With
every little fluctuation of blood pressure, heart rate, etc. Dad was given
treatment. This is meant to keep the
person stable and prevent an acute incident and death. Thereby, pushing families (often unprepared
to make such decisions) into a position of choosing to take their loved one off
of life support. Is this fair to the
families? Should we work so desperately
to keep such very ill people alive, when their bodies are failing and they seem
to be trying to die?
6. It is
my opinion in these situations that the most important thing a hospital staff
can do is adequately read the family.
Some people will need more explanation of events, some less. Some will want all available information;
some can only handle the necessary pieces of the puzzle. Some will be prepared to make difficult
decisions without internal strife, and some will need mediation. How can we adequately assess a family’s needs
and treat them with the utmost dignity and respect?
After going through this journey with Dad, I think that the
medical community can and should take steps to aid in American’s understanding
and acceptance of death as a part of life.
Modern medicine is full of amazing advances, but it seems to me that we
should also be more honest about its limitations.
I miss my dad, his cheerful spirit, his warm embrace, and his
unfailing ability to guide me to the “high road” in life. As I turn 30 today, without him on my
birthday for the first time in my life, I pray that his death won’t be in
vain. I pray that our story will spark
others to deepen their understanding of end of life issues and that the medical
community can come up with creative solutions to make this difficult time even
slightly easier for patients.
