What Would YOU Decide?

A sixty-something man I know has been paralyzed for years, from the neck down, a result of Lou Gehrig’s disease. Whenever I’ve seen him, I couldn’t comprehend how he tolerated living like that. I’d say to myself, ‘I never could.’

When I saw the cover story in The New York Times Magazine this past Sunday, I devoured every word because it was about another man, also paralyzed from the neck down, from a horrific bike accident. An English professor, this 71-year-old gentleman is fed through an eating tube, breathes through a ventilator in his trachea, and uses a battery-operated machine that paces the movement of his diaphragm.

Often depressed and in pain, he still teaches a class, reads voraciously and loves his adoring wife, with whom he’s shared his life for over three decades.

His wife, a professor of philosophy who (coincidentally) writes about end-of-life bioethics, has always believed that a patient with a grievous or terminal illness had the right to determine how he or she would die. Suddenly, however, she wasn’t so sure how she’d feel if it were her husband who wished to die.

“Alongside her physically ravaged husband, she would watch lofty ideas be trumped by reality—and would discover just how messy, raw and muddled the end of life can be,” the article states. “’Can I imagine standing by while his ventilator was switched off?’” she told the author of the Times article.

While focusing on the confusion into which she’s thrown by her husband’s state, the article doesn’t address how the wife would feel if the roles were reversed. Maybe we can really never know, and if we’re lucky enough, we won’t ever find out what we’d decide if faced with the terrifying choice whether to live or whether to die.

Even if the Times piece made me a little less certain how I’d personally react to this nightmarish scenario, it’s also reinforced something I’ve been feeling for the last few years: We must thank God (or whomever you chose to thank) when we wake up each morning and consciously take our first breath. And we must stop self-pitying, complaining, whining, and all that other stuff that prevents us from enjoying every unencumbered breath after that one.

3 Responses to “What Would YOU Decide?”

  1. Paulette says:

    This is such a hard situation whether its for ourselves or our loved ones. I too believe in not prolonging life if suffering is involved and have often thought about what I would do if faced with the possibility. People work to live longer but as a whole I don’t think society is such that promotes longevity and elders and ill people are often abused or misused because people don’t want to take the time to care for them. We are a very disposable society and unfortunately it carries over to elder care and illnesses. Care takers work but resources are stretched and stress is hard. Although my son is willing to care for me, I don’t know if I want to put that type of burden on him to do so. When my father was ill I took care of him but it was hard, and I thought then how I could make it easier on my son. When I had eye surgery due to an autoimmune illness, I felt first had how hard it was to depend on others for your care. I HATED it and knew how my father felt when I had to take care of him. I don’t know the answer but in my heart I know I don’t want my children to go through it. I’ll try to remain as healthy as I can and pray to go quietly in my sleep, in my own home with little need for assistance. Its a scary thought for me.

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    • Geri says:

      Hi Paulette,

      Your comment is so thoughtful and articulate. I agree with every single word.

      Geri

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  2. Bess Heitner says:

    I read the article you cite and it made me think too. I am fully aware every day how lucky I am not to have any debilitating or fatal conditions.

    Before I became a jewelry designer, I was a medical writer for Columbia Presbyterian-New York Hospital. I knew a lot about medical issues and end of life issues and was health proxy for my sister-in-law who died of cancer at the age of 44 and my husband who died of cancer at the age of 60. They both were Buddhists and had firm ideas about what they didn’t want so it wasn’t a problem. My job was stressful but easy because I was carrying out their wishes and made them as comfortable as possible. Believe me, it isn’t easy to do this and one has to be vigilant and present at all times because the medical profession just won’t let go. I would not have a problem turning off a ventilator and I would never permit it to be connected in the first place if that’s what the person specified in their living will. I am a firm believer in not extending life if it causes suffering but in the end, the afflicted person’s wishes have to be honored. It’s shocking though how often this doesn’t happen. There was an article in the Times just this week by a doctor whose colleagues called him a Nazi because he insisted on honoring the patient’s wishes and not giving him IV fluids.

    I currently hold health proxies for 6 people even though I no longer work in the medical field.
    It is my duty to see that their wishes be honored. In the story mentioned above, it is the husband’s choice to continue against all odds so his wife has to go along with it as painful as it might be for her. And if he changed his mind, I think they’d have a big problem turning all the artificial systems off.

    Bottom line, it’s very complicated and emotional. No easy answers and each case is different.

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