by Theresa Spranger, Bioethics Program Alumna (MSBioethics 2012)
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.
- How much information should be given to the families about the condition of their loved one? And when should this information be presented?
- 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?
- 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?”
- 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?
- 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?
- 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?
Americans have a very immature view of death. We don’t like to think about it, talk about it, or deal with it. We often try to deny that it happens at all. This is ridiculous; each and every one of us will one day make our journey out of this world, denying the fact will not make it easier when the day comes.
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.
[This blog entry was originally posted in a slightly edited form on Ms. Spranger’s blog on September 17, 2013. Its contents are solely the responsibility of the author alone and do not represent the views of the Bioethics Program or Union Graduate College.]