Wrenching Choices At The End Of Life, Part II

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by Joan Blumenfeld, MS, LPC

I read an obituary last week that gave me pause. It was for a Mr. John Davis who died at age 87, peacefully, at home surrounded by his loving family. A true marvel in this age of high-tech medicine, an incredible array of medications for every ailment, and frequent hospital admissions for the elderly. I was envious!

Too often these days we die alone in a hospital bed, tubes in every orifice, surrounded by machines that beep and blink and hordes of medical personnel, all struggling to prolong life instead of allowing for a natural death. We seem to be so much more concerned with preserving life at any cost than we are at letting go when it’s time.

In the interest of my own end-of-life concerns, I have signed advance directives that give my adult children the responsibility of making decisions for me if I am unable to do so for myself, and I have spoken to them about this innumerable times. I know full well that when such a time comes, they will have to make difficult choices between maintaining my life even if there is no quality left or letting nature take its course.

I have been called upon to make such wrenching choices three times in my life and none of them was easy. The first time concerned my dear widowed Aunt Syd, who was 89 years old, in the hospital and terminally ill. She lived alone in Chicago and had no remaining family. My brother, Dick, and I held her healthcare power of attorney, but Dick was out of the country when her doctor phoned. Syd was not eating and had been refusing food for several days. The doctor asked me if I wanted to have a feeding tube surgically implanted.

Mindful of my aunt’s advance directives, I said no, hung up but then immediately regretted what I had said. I felt the full burden of having chosen to let Syd pass, and I was absolutely panicked. I quickly called my Aunt Mildred, Syd’s younger sister and closest friend, to ask if the decision was alright with her. There was still time to undo my words. But Mildred said she was relieved to have Syd’s suffering finally end and completely supported my decision. Aunt Syd died a natural death in the hospital within the week.

The second time I had to make such an agonizing decision was somewhat easier because Mother was clearly dying from end-stage Alzheimer’s disease. The issue was not about giving or denying treatment but, rather, about whether or not to bring in hospice care to ease her passing. Of course I opted for hospice and only wished I had known about and engaged their services sooner. They were with me at her bedside in the nursing home to administer morphine when Mother’s breathing became labored. So Mother’s passing was smooth and without a struggle.

You might think that, by this point, I’d be more accustomed to determining the end-of-life care for the elders in my family, but it was not so. When I was called upon, several years later, to make choices regarding my stepfather, Mark, I fell apart! The nursing home reported that Mark had a high fever and was going into heart failure, and asked if I wanted him taken to the hospital. He was 98 years old, had dementia, was weakened by a stroke and had little, if any, quality of life, so I did not choose that option. Since hospice had already been involved with Mark for some time, I requested that they keep him comfortable and let him go peacefully.

And then I got totally hysterical! I began sobbing uncontrollably. Maybe it was because I was losing my last parent and would be an adult orphan from that point on. Maybe it reminded me of the still-raw loss of my mother. Or maybe it was just the overwhelming sense of responsibility I felt for the lives of others. In any event, I had the good sense to call the hospice hotline and talk with the young social worker there.

She sounded about 12 years old, but she had the wisdom of her training. After she calmed me down by listening to my story, she posed a powerful question: she asked if Mark had advance directives and if I was familiar with his choices. I answered yes to both questions, and told her that he clearly wanted no heroic interventions, no hospitalizations, but simply to be allowed to pass in peace and comfort.

Her next remark was magical and released me from the responsibility of decision-making. She pointed out that I had not made the decision to refuse treatment, but was just following my father’s wishes and instructions. It was his choice, not mine!

In that astonishing moment, the monkey slid off my back. I stopped crying and was able to think clearly. I had done exactly what my father wanted me to do. He died peacefully that night. I was not able to be with him but was content in the knowledge that I had done the right thing.

Pearl of wisdom: Start the conversation with your parents about their end-of-life wishes. The more you know, the easier it will be to carry them out. Check out the “Five Wishes” section at www.agingwithdignity.org. It’s a great tool for facilitating this important discussion and getting it all in writing.

 

Joan Blumenfeld, MS, LPC is a Geriatric Care Manager in private practice in Fairfield County, CT. For information, visit www.joanblumenfeld.com. © Joan Blumenfeld, 2013.

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5 Responses to “Wrenching Choices At The End Of Life, Part II”

  1. Cynthia Moody says:

    Hi there,
    Just wanted to say that we have a very small video business, it’s more a hobby, but we videotaped my mother’s wishes and that changed everything and made everything so much easier. I recommend somehow taping what your loved one wants done. It cannot be used in legal proceedings, but at least the family knows what the person wanted from the person actually saying it. There is no arguing with that. This is good when everyone starts to question everything. Please pass this on.