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Talking About Death: Not Nice, But Necessary

July 25, 2012

Photo by Eliza Peyton, via Flickr

By Amy M. Collins, editor

Our recent blog post on “death panels” triggered a memory of my own first real experience with the death of a loved one. It was a little over 10 years ago. I was living overseas when my mother called to tell me my grandfather had liver cancer and had been given maybe a year to live.

The physician had given my family three choices: the aggressive choice, chemo; a less aggressive treatment with an experimental drug that had moderate success; or to let him live out the rest of his numbered days. We chose the middle ground.

At the time I worked in medical publishing and thought I knew everything. Over the weeks that followed I would call home to get progress reports, usually putting my two cents in about what my family should be asking the physician. Finally, when things seemed to be getting worse, I flew home to help.

Nothing could have prepared me for the emaciated man I found sitting up in bed when I went to my grandparents’ house to visit. I hardly recognized my grandfather. It hadn’t been that long, but the cancer had already ravaged him. Despite this, he was cheerful and had high hopes. He didn’t seem to think dying was a possibility.

“When we go to the doctor, you can talk to him. Tell him I want to live,” he said. I remember him being positive as we discussed the plan of attack. He seemed glad that someone else would know what to say to his health care providers . . . but inside I felt like a fraud. I wasn’t a nurse or a physician. I was just a medical editor who knew there was little to be done.

Despite his energy that day, within my short visit home he worsened dramatically and was hospitalized. While there, he was mostly in and out of sleep, and I assume, in great pain. There were horrifying moments I won’t describe here. It was a few days before we even saw his physician. When we did, he was in a rush and barely stopped walking as I chased him down the hall, asking him what we could do next.

He paused for a moment. “Well, we can try chemo, but he’s very weak. It will probably kill him. Or you can let him die at home,” he said before leaving with no further instructions.

As he walked away, I felt myself start to lose it. What should we do? What would he have wanted? What did going home and ‘letting him die’ entail? How do you make a decision like that in three seconds, with a harried physician who’s clearly fitting you in and already spending too much time with you?

My grandfather had no advance directive. His proxy was my distraught grandmother, who needed help with the decision. We thought he had more time and weren’t prepared. The “year” had only been two months.

I was at a loss. I called my mother from the hospital pay phone and asked her to come. The eldest of their children, she was usually the one decisions fell upon.

Later, as we stood at the foot of my grandfather’s bed discussing our options, he opened his eyes long enough to say he was ready to go. I didn’t know if he meant he was ready to go home or ready to die.

We decided to bring him home and get hospice care. I’m not sure if it was the decision he would have made, but one of my last memories of him alive was sitting around his hospice bed with my family, my uncle playing guitar at my grandfather’s request, my impossibly weak grandfather somehow mustering up the strength to clap along.

When I left a few days later to return abroad, I knew I would never see him again. He died shortly after I flew back.

I’m the last person who wants to talk about death. But I would have done anything to have had a plan, to have talked about end-of-life care before it became a snap decision. The hospice nurses were great, but then, they are in the business of dealing with death. I only wish that we’d been counseled before we had no choice. I know that my story is merely an anecdote, one in possibly thousands of similar tales. But I also know that while talking about death isn’t nice, it is necessary.

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4 comments

  1. Amy, my personal experience was a very similar one. Again, doctors never have the time or the will to speak with people. Maybe they feel like they are above the rest of us because they are up there, dealing with life and death. But nurses have deal with life and death exactly like them and still have the humanity to speak with people in those moments. They are my real heroes.

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  2. Amy, this is an excellent article. So true. Most people do not wish to talk about death, but not talking about it can be more painful. Thanks for sharing your story. Ihope that you will continue to share it!
    Kath
    http://www.lifeanddeathmatters.ca

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  3. Very important well-written article.

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  4. my husband of 37 years passed away at hospice last August, the hospice nurses were great, but trying to get someone to listen to me at the hospital was another story. I cannot talk about his death without being angry at what happened. he had liver cancer but 30 days in the hospital left it undiagnosed.

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