Chapter 10: To code, or not to code, that is the question?

As I sit here today, waiting for a call from my Oncologist to schedule a PET scan. I am 15 months out from my diagnosis of Ocular Melanoma. It was a pretty wild ride.

Some may find this a maudlin topic and in our society, it is often taboo to speak of things like death, and dying. No one wants to talk of such morbid things. Well I do, and here I will. If you find it offensive you might want to wait for my next post.

My husband and my sons have been through many sorrows, as have I.

My fear is not that I will die of this disease, but that when I die, they will have a challenging time coming to terms with it. I may not die of cancer, but we will all succumb to something. We cannot predict when or how.

David and I have lost two of our four children. Both of our daughters, our first baby, Amanda, who died the day after she was born due to a birth defect, and our youngest, Megan, who died at age 18 after an automobile accident, left us with what still seems like an insurmountable loss.

Megan Gilbreath

Amanda Rae Gilbreath

We have persevered. It has not been easy. My boys are now 36 and 38 years old. Not boys any longer, but men. It is fine young men they have become. I am so proud of both for all that they have achieved.

I know that they worry about me. They worry about what will happen to our family if I die. The question is not if I will die of this disease, but when will I die of whatever I will eventually die of? The diagnosis of eye cancer just brought it front and center.

No one knows what is coming. Our death is undoubtedly preordained, but we cannot know the when or the how of it. We can only live every day as if it is our last. We can try in some small way to help others, to raise them up whenever we are able.

I had already made some decisions about how I want to face my inevitable death. The decisions were made long before I was diagnosed with cancer. Whether it is from Ocular Melanoma, or some unforeseen accident, I have no fear of my death. It is the process of dying I find most daunting.

I do not want any attempts to revive me when I die. I do not want CPR or intubation. I do want to have comfort measures. I would much prefer not to die in pain. At the moment that my heart stops, when I breathe my last breath, let it be.

I see death as a door to another realm, not just any realm but a higher realm. Some people believe that when we die, we go to heaven. What exactly does that mean? As a Christian I was taught from a very young age that the goal of life is to live like Jesus. We should follow the ten commandments. We should always strive to live as Jesus lived.

Jesus was good and kind man, a brilliant philosopher. He accepted his own crucifixion as the will of God, because he was the son of God, and he knew something better awaited him.

I believe that man has developed the concept of heaven as they would like it to be. Nowhere in the bible does it define what is meant by life everlasting. Could it be then that the great beyond is not so far away?

I believe, as a Christian, that our life goes on. That we that believe in him, shall not perish but will have life everlasting. We have eternal life. The great curtain that separates the living from the dead is just that. It is a thin veil that separates one life from the next. Each time we pass through that veil we live again as a new creation. That is what everlasting life is. Portions of our consciousness, our soul, survive. They return with us as we advance with each life to a higher calling and greater responsibility.

Everyone is entitled to their own interpretation of heaven, and everlasting life. I personally don’t see myself or my soul hanging out on a cloud with a harp. It just doesn’t jive. Heaven is here and throughout history we have struggled to define it when we are standing in it. I believe Hell is here as well.

Christians are not the only ones who return. Some return to better circumstances than before. They think it heavenly. Some return to far worse circumstances. That would be hell.

It is my belief, we are judged when we die. The life we lead now will determine the life to which we return.

Is it important to live your life as a good Christian? Should you follow the teachings of the bible? Are we held to account for our words and deeds? I believe we are. The life we will attain will be a direct result of how we have lived this life.

There is no other explanation for the tremendous advances and scientific discoveries of the past few decades, centuries even. We don’t start from scratch with each generation. Each generation is far more advanced than the last. We do not go backwards, only forward.

Grampy Hank and my Dad

My paternal Grandfather, Hank, lived from 1901-2001. A full century of advances that spanned from horse and buggy to some of the most advanced modes of transportation, including a man on the moon. Communications went from a system of mail that was delivered by men on horseback to an amazing internet that allows us to communicate, in real time, with video across the entire globe.

It is unfathomable that such advances have occurred in so short a time. We have computers and AI. We have phones that double as cameras and video devices. They are not even tethered by a cord. We do not have to go to a movie. We stream them on our phone or iPad.

Medical advances have been the most amazing. We can cure diseases that would have destroyed us only a few decades ago. We can transplant organs, make new limbs that work as well as our own, and do microsurgery with a robot. We can extend the life of our loved ones by using mechanical ventilators, pacemakers, artificial valves, and vessels. The question is, should we?

With such rapid progression of science and technology comes a great responsibility. It is our responsibility to use the technology we now have, to save those who could return to a productive life. I don’t mean we should only save people who can work in the traditional sense. We must use that technology judiciously and ethically. We should not prolong the suffering of those whose time has come to pass through the great veil to whatever awaits them.

This isn’t necessarily age related although many of the patients I am speaking of are elderly. I have seen patients in their teens, including my own daughter, who could not survive without the use of life support and no longer have enough cognitive ability to survive on their own. To try and prolong their suffering would be nothing short of cruel.

I don’t believe we are using the great gifts we have been given judiciously when we do CPR, and place someone on a ventilator, not to prolong a life, but to maintain an existence. I believe there is a difference between living and existing. Life is being able to experience both joy and pain, it is being able to love, and experience being loved. It is more than vital signs on a monitor.

We as a nation do to our elderly what we would never do to our pets. We put people through treatments and procedures that create great suffering and prolong their existence, but not their lives.

As a nurse over the past 43 years, I have witnessed many people who have had their lives extended using such technological advances. Many times, they are nothing short of miraculous. I have participated in codes when the patient was revived with CPR and went on to live a normal and productive life. I have also participated in those that have been nothing short of torturous.

I once spoke to a family who was overwhelmed by the doctor’s request to decide about removing their loved one from life support. They said they felt that if they turned off the machines they would be “killing” him. The patient in question was in his 90’s and had terminal cancer. In my opinion he never should have been placed on life support. I told them that sometimes the amazing equipment and medications that we have at our disposal shouldn’t be used. I told them that I thought this was one of those situations.

We can do amazing things. We certainly don’t perform miracles, but we make them more likely by utilizing our experience and technology. There are times when we shouldn’t.

I told the family that we are not keeping him alive. We are only maintaining his vital signs. For all intents and purposes, he has already died. Everything that made him the man he was, the man they loved, was already gone. The body in that bed is merely the familiar and cherished shell that housed the amazing man they knew. Taking the machines off would not be accelerating his death. It would be allowing him to die, and it would allow them to start mourning and grieving for him as they should.

In ICU taking someone off life support is often termed "withdrawing care". I am discouraged by that terminology. Often when we remove the machines and allow the family to gather at the bedside we are just beginning to care.

I once had a patient who had been in the hospital for several days. It was clear to everyone caring for him that he was terminally ill. He was not able to express his own wishes at that point. He had lain in bed with his eyes closed. He was awake but disoriented and often cried out in pain. He had a daughter who lived with him, but she had only been to visit a couple of times. Those visits were brief.

When the poor man’s heart finally stopped and he took his last breath, we rushed in with the code cart. We performed CPR. We tried every algorithm that the ACLS manual put at our disposal to return him to his previous state of "health". That state was one of pain, immobility, an inability to speak, or even turn himself in the bed. He was locked in a body that was no longer functioning. No amount of effort on our part would succeed.

After the code ended, nearly an hour after it had started, it was “called.” The patient was pronounced dead. The time and date were duly recorded, just as it is at the beginning of life.

The patient’s daughter was contacted at the beginning of the code. She said she wanted everything done to save her father. Once the code was called, she asked me if there was any way that we could post date the death certificate.

I didn’t understand her question at first, but after further conversation, I realized that her father’s social security and VA benefits were her only source of income. She was asking if we could change the date on the death certificate to the following month. She just needed to get one more check.

I did not comply.

Did God allow us to advance so quickly so that we could maintain the heart beat and blood pressure of someone who can no longer speak, walk, eat, drink, or even breathe on his own.

I don’t believe that.

I am often called to speak to families who are facing the death of a loved one. To determine whether they want them to be a “full code.” In some instances, a full code is totally warranted. In others it is a travesty that we as a Christian nation have chosen to support because we fear litigation, and because we really fear death.

While I am not a physician, I am often the one who has this discussion with family members. There seems to be an avoidance of the topic of death by physicians in general. I get that. They are supposed to be healers. It is almost as if talking about death means they have failed. I know that death is an experience we will all someday have. Attempting to thwart death, or to avoid the discussion of death, does everyone a great disservice.

I once had a patient in the emergency room who was in her late 80’s. She had fallen and sustained a head injury that for all intents and purposes was not survivable. In a last-ditch effort to try and offer some “hope” to the family the emergency physician planned to send her to a larger hospital, to possibly undergo surgery that might relieve the pressure on her brain and allow her to survive. Notice I didn’t say live.

I was starting to arrange the transfer but as I developed a rapport with the family, I realized it just wasn’t the right thing to do. I went instead to the family and asked them what they wanted to do.

They were so relieved to be included in that decision because as a family they had had that very important conversation. They asked if the surgery would offer her a return to her previous state of health. Would she be the woman they loved.

I told them that I would never discount the possibility of a miracle, but I didn’t think she would have quality of life. They made the decision to remove the machines that were maintaining her vital signs. Then they gathered as a family and sang her favorite hymns to her as she quietly died. It was beautiful. It was in my opinion the right thing to do.

Had she been transferred to another hospital for possible surgical intervention it would have involved a helicopter, or fixed wing transport, to a facility in a larger city. Family members would not have been able to accompany her on the flight. The family would have struggled to get there. They would arrive after her. There was a very strong possibility that she would either die on the way to the facility or shortly thereafter. It would have been anything but a beautiful and peaceful passing.

I am no philosopher, I leave that to Jesus. I do have very strong convictions that I believe to be based on biblical principles. I am not trying to force my beliefs on anyone else. It is important to me that when I die as we all inevitably will I want my family to be comfortable with the decisions I have made and know that just as I love them in this life, I will love them in the next. We will be together again, but it may not be in the same relationship.

I might be their son or daughter. Wouldn't that be a hoot?

IN LOVING MEMORY OF AMANDA RAE AND MEGAN DIANNA

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