As I Was Saying…

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Deciding to End a Life

August 20, 2009

Mom and I sat side by side in a small conference room in Maine Medical Center. We were listening to a doctor explain, as gently as he could, that the time had come for us to make decisions about my father.

A few weeks earlier, Dad had undergone quadruple bypass surgery. He had recovered from it fairly well, but during his first night home from the hospital he suffered a massive stroke. After a few days back in the hospital, he slipped into a coma. Now we were facing the reality that he wouldn’t be coming back to us.

Dad’s condition, in the doctor’s opinion, was irreversible, yet with the feeding tube and ventilator in place, he could be kept alive indefinitely. The doctor asked if Dad had ever prepared an advance directive. The answer was no. As far as I knew, Dad had never said anything at all about what he would want in the circumstances we now faced.

Mom turned to me and said, “What do you think?”

“I think it’s your call, Mom.”

She was silent.

Finally I said, “If you don’t want to decide or if you can’t decide, Mom, I will.”

“I think you’d better,” she said.

I looked at the doctor. “Are you saying he can’t get well?”

It’s the kind of question doctors usually hate, but this doctor didn’t hesitate. “Yes, that’s what I’m saying.”

“We have to let him go,” I said. Then I was in tears and couldn’t talk anymore.

“We’ll keep him comfortable,” the doctor said.

Dad hung on for three more days.

All of this happened 15 years ago, and I still sometimes find myself wondering if I did the right thing. Should I have pushed Mom harder to make the decision herself? Should I have waited a few more days to decide? Should I have asked to talk to another doctor? Should I have just said we were going to wait for a miracle?

These are the hardest questions anyone can face. I did the best I could without much time to prepare or to think.

The kind of counseling that would have helped Mom and me, that perhaps would have led Dad to tell us what he wanted in advance may or may not have been widely available in 1994. But it’s available now.

Sarah Palin and her ilk, however, want to make sure health insurance won’t cover it. With her gift for twisting the truth beyond recognition, she calls such counseling “hav[ing] to stand in front of Obama’s ‘death panel‘ so his bureaucrats can decide” whether someone lives or dies.

It’s hard for me not to take that personally. I had to pull the plug on my own father. It was the hardest decision I have ever had to make in 63 years of living. I could have used some help.

That’s why I wrote to every member of my state’s Congressional delegation urging them to stand up to Sarah Palin and all the rest who want to derail healthcare reform. The story of my father’s last days is old news now, but families everywhere face the same heartbreaking dilemma every day.

Many opponents of healthcare reform don’t seem to care. If you’re someone who does care, however, it’s time for you to speak up.

5 Responses to “Deciding to End a Life”

  1. Jack Kenderdine Says:

    Even though my parents both had the forethought to legally document their wishes and discussed them openly with family multiple times, it was still a decision that fell mostly to me when their times came. While not easy, it was made without regret or much looking back. My wife and I have made similar preparations, but we are fortunate to have the ability to hire an attorney to help us with this. My only qualm is that it isn’t always clear cut when your time is up. I had multiple doctors inform me that my mom was a palliative care patient in the summer of 2006, yet she refused it and came back to live a decent quality of life until she expired a couple weeks after this past Thanksgiving. At that point, praise God, she still had her mental faculties and told us she felt at nearly 90 years she had finally had enough; and we should allow nature to have its way. But doctors and nurses often too easily accept a DNR request as binding and immediate, hard to describe because it is complicated. They don’t seem always to understand that a lucid patient always has the right to stay, modify or rescind that order. This is why discussions with friends, doctors and families about this uncomfortable subject is necessary, and why it should be a part of rational public discourse.

  2. Darlene Says:

    I hope this provision will be put back in the final bill. It is outrageous that it was stripped just to appease a bunch of no-nothings.

    I had to make a similar decision with my husband. He was dying with multiple terminal brain tumors, couldn’t speak, feed himself, or even turn over in bed. He had a strong heart and had hung on for months trapped in his own body.

    Finally my husband pulled the catheter out and got an infection. The doctor asked me if I wanted to have the infection treated and I had to make the decision alone. My husband had never discussed this with me and didn’t have a living will.

    I knew that my husband would hate living in the condition he was in and so I asked the doctor if he could keep him comfortable. The doctor assured me he could so I told him, “No. Don’t treat the infection.” I still feel guilt by having to decide to let him die sooner than he might have. No one should have to feel that guilt. A living will would have taken the burden from me. Everyone, young and old, should have one made. The forms that comply with your state’s laws can be gotten from the Health Department.

  3. janinsanfran Says:

    I had to do that for my mother. Fortunately, we had talked. She didn’t have the papers, but she had made her wishes clear. It is indeed the hardest thing a child can do for a parent.

    A friend of mine is right now staying with her mother who has just been diagnosed with leukemia. That friend has a 3 year old child, a stable partnership, a successful career. But she writes to me: “I don’t think I’m ready to become an adult and lose my mom.” For those of us for whom this sort of decision becomes necessary (I think there are more of us as medicine becomes more able to prolong life), it too is a sort of life passage.

    Thanks for sharing your story.

  4. Mary Jamison Says:

    My heart goes out to you. I’ve been remembering my father’s death, with all this talk. Unlike you, we had his wishes in writing, and yet following through on them was agonizing. The experience was profound, and our gratitude for that piece of paper was immeasurable.

    You don’t need an attorney. Google “Five Wishes” for help in thinking through the questions. The most important thing, though, is to appoint a health care proxy – someone who can speak for you when you can’t, regardless of whether you’re at the end of life or unconscious.

    I offer a seminar twice a year where I work, based on a seminar offered by this doctor and insurance co. http://www.compassionandsupport.org/

  5. Mike Denis Says:

    Pete, just came across your blog from the posting today on FaceBook. I got a call from Seaside Nursing Home on Oct 9, 2008, that my dad was “failing to thrive.” He had been there for quite a while, as you may remember. The nurse to whom I spoke said basically that it was impossible to feed him any more, and that his muscles had atrophied to the point that he had almost no strength left. He was blind in one eye, and the sight in the other was seriously impaired, he was becoming delusional and disoriented with the dementia, and other than occasional outbursts, he was wasting away. We also had never talked specifically about final wishes, though once he did tell me that rather than become a burden to me or any one else, I was simply to take a baseball bat to him! But I think I knew him well enough to understand that he wouldn’t want to “live” that way. So when that call came, saying that it was either feeding tubes or letting him go, I decided for him. He had said many times that he was ready any time, and I figured it was time. So they kept him comfortable, and I hopped in the truck for a mad dash back to Maine, about a 16 hour drive under the best of circumstances. I overnighted in West Virginia, then was up at 6 AM on Oct 10, my birthday, headed for Portland. Had it not been for the traffic on I-84 in Sturbridge where I was tied up for 2 hours, I’d not have received the call from my daughter telling me to go to Vivian St, not to the nursing home — Dad had already gone. He had decided that he was going to go before I got there I guess, and you know, when Dad decided something, he always did it. Immediately.

    Needless to say, I’ve second-guessed my decision, but given the circumstances today, I’d make the same decision. Was it hard? Of course, you’ve been there, you know that. But I wouldn’t want to be kept alive by artificial means, and I know Dad didn’t.

    What your blog post points out to me is that there are SO many of us in that situation, and idiots like Palin just make things worse. At least, now, all the important people in my life know MY wishes, even if they aren’t in writing (which they should be).

    Thanks for the posting. It’s important and I wish more people could read it.

    Now on to browse the rest of your blog…

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