The Insidiousness of the Culture of Death

hospice, suffering, death, palliative care

My mother died on February 26, 2006. She spent most of February in the hospital. When it became clear she was never going home, medical staff suggested we utilize their new inpatient palliative care unit. Mom would be their first patient.

We thought she would die more comfortably there, so we agreed. Staff was compassionate. They inquired about her wishes and complied with everything we asked. We were grateful for the palliative care option.

My dad died seven years later, on Good Friday, March 29, 2013. He died in the same palliative care unit as his wife. Nevertheless, it was a much different death. We saw the insidiousness of the culture of death in our interactions with the local medical center.

Dad was admitted to the hospital in January 2013. It was not his first admission. Diverticulitis had been a constant problem for him since October 2012. Doctors usually sent him home from the clinic with antibiotics. His health would continue to decline until he ended up hospitalized for intravenous antibiotics. It was becoming a bit of a revolving door.

Soon after this latest admission, we were asked to consider whether or not my dad should have a Do Not Resuscitate on his chart. It seemed odd to ask that of us, his children. He was completely capable of answering the question for himself.

We decided to speak with the surgeon who was monitoring his care, bringing his Power of Attorney for Healthcare with us so the physician would be clear about Dad’s wishes. We asked if he was so sick that reviving him would not make sense. Surprised, the doctor read the paperwork, then told us that Dad was relatively healthy. He recommended no changes in the chart.

My father continued to decline. Antibiotics were not working. His doctor finally decided on a surgical solution, but it was too late. Before the scheduled day, Dad ended up in emergency surgery.

When it became apparent that Dad needed an operation without delay, the medical center called. They wanted our permission. I did not understand. My dad had already agreed to it, and he was still capable of answering for himself.

I have long wondered what would have happened if we had declined that option.

After surgery, Dad’s kidneys shut down. Dialysis was necessary. My dad openly wondered if this was the beginning of the end. I assured him that it was just a small obstacle and that time would find him fully recovered.

I was wrong. Kidney shutdown proved to be the first of several obstacles. The surgeon did not realize until a day or two after the operation that extended antibiotic use had caused an infection called Clostridium difficile, otherwise known as C.Diff. This bacteria is common, but becomes a problem when antibiotics kill off the helpful bacteria, allowing C.Diff to take over.

The surgeon informed us that the symptoms leading to Dad’s emergency surgery were caused by this infection. If he had realized it at the time, surgery would have been much more extensive. The surgeon would have removed his entire colon instead of just the part damaged by diverticulitis. He told us this would have cured Dad.

My father was considered too weak to endure another operation, so other options were tried. These included different antibiotics and a fecal transplant. Nothing worked. Ultimately, there was no other option. The surgeon went back in and removed his colon.

Dad experienced complications from all of this, requiring different kinds of added treatment. Every time doctors wanted to try something new, they first asked him his desire. Each time he responded, “Yes.”

After he consented, I would get a phone call asking my permission. My first question was always, “What did he say?” At one point I said, “When he says yes, the answer is yes!”

My dad was still able to speak for himself. I was glad to support him in his decisions, but it made me wonder, what would happen if I declined these interventions? In retrospect, I also wonder if they would have called me if Dad had decided against procedures. Could I have overridden his wishes?

Palliative care staff became involved. They met with my siblings and me, but not my dad. More procedures could be tried to regain Dad’s health, but the staff in palliative care discouraged them all. They wanted us to face the realization that he was dying. Though in the end they would be proven right, it should not have been our decision whether or not to continue to fight. My dad was able to make those choices.

We learned later that the surgeon was not aware of the meeting. When he learned of it, he expressed confusion that palliative care had already become involved. He still thought the prognosis looked good.

My dad was in the intensive care unit by now. As his stay lengthened, quality of care subtly changed. One night the alarms were going off because his oxygen level was too low. Not for the first time, nobody responded.

I considered leaving his room to get some help but kept telling myself somebody would be here if it were necessary. Then the surgeon walked in. He took one look and stormed out of the room, angrily calling for help, astounded that Dad was left that way. I told him it had gone on for several minutes and was not the first time.

It was also not uncommon for medical staff to approach me to tell me how much Dad was suffering and that we should just “let him go.” I realize that this was coming from a place of compassion, but it also seemed to include some selfishness.

If my father was not ready to give up, why should they try to convince me to persuade him? I would remind them that Dad still desired every procedure offered, even though he was suffering. It was his wish to continue to fight for his life. He would not give up just because others did not want to see him suffer.

Several years earlier, Dad had left the Catholic Church. During his time in the hospital, I offered to call a priest to anoint him. He hesitated, so I brought up the name of a favorite priest he had not seen for decades. He accepted the invitation.

The priest remembered Dad well and was delighted to take care of him. I visited later that day. My father could barely talk, but the minute I reached his side he grabbed my hands and whispered, “Thank you!”

It was not long before my dad was reconciled with the Church. The day that happened, when I visited, he just looked at me and said, “I’m back with the Church.”

This deathbed conversion was not a result of fear. Dad was truly happy. We talked late some nights. He would speak of God and, despite his weakness and pain, he beamed. The last time I ever saw him glow was during those conversations. If dad had given up earlier, all of this might never have happened. Goodness can result from the willingness to endure suffering.

Dad’s days in the hospital were coming to an end. These two months had been a series of improvements followed by setbacks. Finally, he began bleeding internally. The surgeon who had given us hope throughout this long ordeal had no more to offer. On the evening of March 28, the day after Dad’s 84th birthday, we gathered in his room to say goodbye.

Dad knew it was the end. He had dictated a note to a nurse to read to us when he was no longer able to communicate. In it, he spoke of his love for his children and his grandchildren, and his delight in the adults we had become.

He was still not quite ready to die. Despite the blood loss, his vitals remained strong. We surrounded him, prepared to be by his side for the duration. We knew it was likely he could hear our voices and feel our love.

Later that night medical personnel asked if we wanted our dad transferred to the Palliative Care Unit. We declined. Staff assured us he could stay right where he was until the end.

When morning arrived, nurses expressed their surprise that Dad remained alive. In the next few hours, his vitals stayed about the same. He apparently wished to be with us a bit longer. I like to think he was talking to God and continuing to grow in holiness through his suffering.

Near noon, medical staff informed us somebody else needed the room. Though it was clear that nobody expected my dad to survive the move, he was heading to the Palliative Care Unit. We had no say in it.

As expected, the move killed him. At first glance, this doesn’t seem so tragic. Dad died a few hours or, at most, a few days earlier than if he had remained in his room. In exchange, somebody with a better chance of survival took his place.

For his children, who had experienced the relentless push to “just let him die” from his early days in the hospital, it did not seem like a fair exchange. It appeared no different than an overdose of medicine designed to end his life. They knew he would not survive the transfer and they moved him anyway. We had lost our trust in most of his medical staff, enough that we doubted there truly were no other rooms available.

This may appear silly to some, or just the thoughts of a grieving family. Almost five years later, we all still get angry about it. I am at a loss to explain why medical personnel asked our permission before every procedure. It is difficult to understand why Palliative Care became involved well before the surgeon thought it appropriate. I do believe everyone acted in good faith, with the belief that suffering is something to be avoided at all costs.

We often hear people suggest that euthanasia is a good idea because nobody wants to live in pain or other kinds of suffering. Until we are in those shoes, we cannot know. My dad accepted every chance offered to him.

Dad had the opportunity to come back home to his Catholic faith because he fought to stay alive a little longer. He was privileged to receive viaticum before leaving this world. How many are denied that because of euthanasia? The Church teaches that suffering can be purifying. If we only see suffering as evil, we miss the chance to grow.

In the seven years between the deaths of my parents, much had changed. Physicians fought valiantly for Mom, even when the rest of us were losing hope. There were no phone calls asking us for permission to perform procedures she had already agreed to, no late-night talks suggesting it was time to give up. Palliative care was brought in only after it was clear to everyone that she was never going home.

Dying in the same hospital, my dad had to fight for his wishes. His surgeon fought with him, but without his family as advocates, I am not sure his wishes would have been granted. It makes me wonder what kind of changes the next seven years will bring.

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3 thoughts on “The Insidiousness of the Culture of Death”

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