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Sara Deskar: Compassion, Autonomy, and the Right to Choose

Sara Deskar is a graduate student in Swansboro, North Carolina.

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Earlier this year, I watched my dad die of idiopathic pulmonary fibrosis. He had been ill for seven years. He remained independent and dignified in spirit throughout his illness, but his final deterioration robbed him of who he had been his whole life—and left my family with lasting trauma and grief.

Mr. Mom Gets Sick

My brother and I liked to call my dad “Mr. Mom.” He was a stay-at-home dad who shuttled us to activities and was very involved in our childhoods. He was also very active: he ran, landscaped our yard, and always had a project going. It was almost impossible to imagine anything that would slow him down.

His health problems began in 2011. After climbing a flight of stairs while chaperoning one of my brother’s field trips, he felt out of breath. He went to the doctor right away and his medical team began to investigate the possible causes of his shortness of breath. Initially, they thought it might be pneumonia, but it kept coming back. Even the experts were mystified.

In 2013, he received the diagnosis that would define the rest of his life. Most people die within three to five years of being diagnosed. My dad wasn’t even on an oxygen tank until 2016. He was still landscaping our yard even when he was struggling to breathe. It was impossible to fight him; he had such a strong will to live.

He was always very positive about his condition. He never let us talk about the fact that it was considered a terminal illness, even as he was getting sicker and got on the list for a lung transplant.

I said to him, “Dad, there are people who die waiting for a transplant. I want you to know that if you find yourself suffering at the end, I wouldn’t want you to stay around just for me. I want you here forever, but I’ll be brave for you and I’ll let you go. I want you to know it’s OK by me.”

Sara Deskar with her Father

Too Ill for a Transplant

One day, while we were at the hospital awaiting an organ transplant for my dad, we received the terrible news from his doctors that there was no hope of him receiving a transplant because he had become too ill.

My dad accepted the fact that his disease was, and always had been, terminal. He had defied the odds, lived longer than anyone with his disease is supposed to. With the option of a transplant gone, he knew the final stage was death.

We were devastated, but I was determined to give him as peaceful a death as he could possibly have. My family made sure he was set up with quality hospice care.

My family and I were huge advocates for him. We didn’t want him to suffer unnecessarily, so we decided to be present for him despite the pain and grief.

“All My People Around Me”

My family and I were there with him until the end. We laid together with him, held hands, and made the most of our remaining time together. It felt so surreal, but it was really raw and emotional. We were there as a family, like he always wanted.

“I have all my people around me,” he said. “If I have to go, this is OK. I’m not scared.”

Unfortunately, it took an agonizing amount of time for him to pass. Watching the life leave my dad’s body, slowly, was more traumatic than the moment he took his final breath. He struggled to die peacefully. He was confined to a bed and was told that there was no guarantee on how long he would have to linger in that tumultuous limbo space: neither truly alive or truly dead.

We watched him turn his oxygen down slowly hour by hour; it was the best option he had to relieve his suffering. The final indignity was that he was not in a hospice room, but rather confined to a room on the lung transplant floor where everyone but him had received new organs.

I saw my dad exist as a shell of the man he once was. He had suffered for seven long years, fighting with every breath to survive another day.

Why did he have to struggle those last few days, too?

I did my undergraduate research on mortality and how people perceive their own death. I thought if I could intellectualize the experience, it would make the process easier. It didn’t.

Watching my dad die and the bravery it took him to leave this world slowly, fully knowing what was going on, has both broken my heart and inspired a drive in me to make sure that others don’t have to die that way.

The Reality of Death

I started looking into death with dignity as an option to help terminally ill patients end their lives with autonomy and control. Neither Ohio, where my dad died, nor North Carolina, where I live now, has an assisted-dying statute. I believe this is a right everyone should have.

Part of the reason I am so open about my story is that until we make people realize that a prolonged death like my dad experienced could happen to their dad, their sister, their child, or another loved one, we won’t be able to make progress.

We as a nation are blind to the reality of death until someone we love is faced with their own finality.

I am in a Master’s in Social Work program. Soon we will discuss death and dying in one of my classes. I look forward to bringing death with dignity into the conversation.

North Carolina is not very progressive on a number of social issues. Conversations about death and dying can make many people uncomfortable. Despite this resistance, most people with whom I’ve spoken about my father’s story have agreed with me that terminally ill people should have the right to decide how they want to die.

Death with dignity is about compassion, autonomy, and the right to choose. By allowing an individual the right to die with dignity…we are ensuring that someone’s transition to death can be as peaceful and painless as possible.

In any social movement, it is personal stories that change hearts and minds and lead to policy reform. I am proud to share mine as one way of ensuring those at the end of their lives do not have to suffer unnecessarily.

(July 2018)

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