When is the right time to die?

Uncle Walt died this morning. Finally.

I say “finally” because I believed this day would come four months ago, when he had emergency bypass surgery.

At the time, I didn’t believe Walt would live; he was an ailing, seventy-seven-year-old man with severe pulmonary disease. When his heart started to hurt one Friday, his doctors told him, “With bypass surgery, you might live. Without it, you’ll be dead before the weekend is over.”

Walt’s oldest daughter and my parents, who were with him, told me about the doctors’ recommendations.

As a retired paramedic, I’d seen this scenario before — often enough to have a strong opinion, and my own advance directives.

I didn’t think that Walt should have the surgery. I thought it would cost too much suffering and money and ultimately lead to the same predictable outcome. I expressed concern that the medical community was pushing, even coercing, Walt to agree to surgery.

My parents assured me that Walt understood the severity of his condition. He knew that he was a poor surgical candidate, that he might not survive the surgery, that he would suffer.

And Walt said, “I want to live.”

I disagreed with Walt’s choice for another reason: I believed that it would thrust suffering upon his family members, who were also my loved ones.

His four children, who said he’d abused and molested them, would suffer, dragged into advising and decision-making roles. My father would suffer because he loved his older brother deeply — despite my cousins’ assertions and despite Walt’s drinking away the first decades of his life, failing to find a successful career, and heading a family riven by dysfunction.

Walt had made our whole family suffer, and I didn’t want him to cause more suffering. I felt angry with him. Over the years, his declarations of remorse had seemed insincere, his oblique admissions and apologies insufficient to heal his children’s wounds. I felt he’d given them good reason to leave him. And though he had never mistreated me, I’d maintained a cool reserve.

In the end, Walt had the surgery — and lived through it, although sometimes it hardly seemed living.

Essentially, his bypass saved his heart so that his lungs could kill him. He had a breathing tube in his windpipe and a feeding tube in his stomach; he lived through a week of “ICU psychosis,” tormented by hallucinations. After he’d spent nearly a month in surgical intensive care, they moved him to an extended acute-care hospital, then to a skilled-nursing facility.

He had good days — a few. He taught his tired larynx to form words again. He progressed from sitting in a chair to standing to walking a few steps. Once, he walked all the way from his room to the lobby and back.

He also had many bad days, when he couldn’t even get out of bed. He suffered persistent urinary-tract and C. difficile infections.

Whenever it seemed that Walt’s body might give up the fight for life, the staff would ask Walt whether he wanted to be resuscitated.

He always said, “I want to live.”

It was his decision; I don’t think it would have been mine.

But what came of those days between the time I thought my uncle would die and the time, four months later, when he did die? Those expensive, painful days, dogged by fear and anxiety, when my cousins were spent and my parents exhausted, when Walt could have died but lived instead?

Walt found God. On the night before his surgery, the fear of death opened up a vulnerability in him, and he accepted a priest — and then God. He confessed. That night, with two of his four children by his side, he wept his confession.

My cousin recorded his father’s words in a journal: “Forgive me for the abuse … I abused all of you. I wish I had been a better man.” Walt asked his children for forgiveness, and they gave it.

My cousin emailed this exchange to his brother and sisters, to his mother and aunts and uncles and cousins.

The next morning, huddling with my parents and cousins beside Walt, who lay unconscious after the operation, I did not know how to carry my anger.

But the months that followed gave my father more time to spend with his older brother.

“Such a beautiful gift, this time,” my father says now, even though those days also sucked away my parents’ energy.

I doubt that Walt expected that his family would start healing — that his act of contrition would forge new bonds of obligation, responsibility and caring.

But because the operation gave him those months after his “deathbed” confession, his children were able to tell him that they loved him; and their words resonated with a new truth.

“We thanked him and told him he had given us a gift,” my cousin wrote.

Several days after Walt’s surgery, I stood by his bed and held his hand as he drifted into and out of consciousness.

His oldest daughter stood beside me. Whenever Walt was awake, he’d look at her and mouth the words “I love you.” I felt I was watching them forge a new relationship.

Walt’s fractured, estranged family began reaching out, emailing or calling, traveling, reconnecting with each other — and even with Walt. I heard words of remorse, excruciating admissions, and gradually my anger subsided into awe.

I feel certain that Walt knew of the evolution that began in his family that dark night before his surgery, when he felt sure that he would die.

This morning, when Walt finally did die, he left behind a different life — and a different family. His oldest daughter stood in his hospital room, her boyfriend’s arm through hers. Her two adult children hovered near their grandfather. My aunt stood at the foot of his bed. I knelt by the railing, my parents standing just behind me.

I held Walt’s hand and told him that it was okay to go — and that I loved him.

Four months earlier, I’d thought the most pragmatic, least painful choice he could make would be not to fight for life. I’d thought it would be easier, kinder for everyone.

When is the right time to die?

I used to believe that I knew. Just after Walt’s surgery, I made plans to fine-tune my own advance directives — to forbid intubation or stomach tubes.

But I have yet to call my lawyer. I’m not longer so certain that choosing a quick, efficient death is selfless and honorable.

Now I know that my choice to die won’t be just about me. And that changes everything.

K.D. Hayes is a retired paramedic.  This piece was originally published in Pulse — voices from the heart of medicine, and is reprinted with permission.

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  • http://www.ronsmithmd.com/ Ron Smith

    Hi, K.D.

    Very good article.

    Life is like a long series of slides and we don’t have the ability to project all the way through and see the whole person as a composite at the end. The streams of a persons slides intersect with other life streams and we leave marks on each other…horrible holes in the case of George Bailey when he saw what would happen if he’d never been born!

    My Grandmother died a terrible death with Hamman-Rich fibrosing alveolitis. She was so loved, but though we would never have chosen heroic measures, the decision didn’t leave any comfort.

    Unfortunately, choosing when to die is pretty tough just as your story concludes.

    Warmest regards,

    Ron Smith, MD
    www (adot) ronsmithmd (adot) com

  • buzzkillersmith

    Answer to this post’s question: When the marginal utility of dying is greater than the marginal utility of living and it is highly likely to remain so.

    Next case.

  • John C. Key MD

    Very good post KD. The time to die is best kept out of the hands of the living. Choosing the time is a multivariate analysis that humans just are unable to calculate.

    I’ve practiced long enough to have worked in both the pre-and post- “advance directive” eras. In my experience that set of documents often provides pitifully little help at a time that they should be needed.

  • leslie fay

    I think the extension of Walt’s life-in that particular instance- might have been healing, however, if one lives a decent life i.e. without a lifetime of apologies to unburden in your final moments then the extension changes significantly. As a respiratory therapist of 40 years I determined long ago that you need to live your life well on a day-to-day basis because you might not be able to wring a few days or minutes at the end to make your apologies. My husband and I still have our DNR’s in place.

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