Wow!  This is harder than I expected.  Let me explain.  It’s time to write a living will.  I am 70 years old and live with Parkinson’s, a disease that will progressively attack my nervous system.  As Parkinson’s attacks, my abilities to walk, talk and even think will diminish.  Along with the loss of function comes a progressive loss of the quality of life.

There are treatments for Parkinson’s but all current day treatments, while restoring some abilities and quality of life, are only temporary.  In March, I am going to have a deep brain stimulator placed deep within my brain.  The surgeon will bore a whole in my skull and thread an electrode into the area that Parkinson’s affects.  The hope is that the procedure will improve the quality of my life by restoring functions previously lost.  Hopefully, I’ll be able to reduce or come off of some of my meds as well.

As with all surgical procedures, there are risks. While the risks are fairly rare, they can be devastating and include stroke, infections, bleeding and even death.  Being a physician, I fully understand the risks and consequences should something go wrong.  I also understand that, in the real world, the risk of anything going wrong is 50%.  The surgeon may tell you that statistically the procedure has a 2% chance of causing injury in the general population. However, in the individual’s case, it either will happen or will not happen (50-50).

My “why” for writing this article should now be readily apparent.  I thought that the hard part of creating a living will was already done.  I was wrong.  While I have had multiple conversations with my wife and children regarding letting me go if something adverse happens during surgery or from any other event, putting my wishes in writing is extremely difficult.  This morning I searched the internet for living wills written by physicians.  I found one helpful article. “ We should strive for a good death that occurs at the proper time and place,” by ALLEN FRANCES, MD and published on KevinMD on April 27, 2015, is worth reading.

While a document that tries to anticipate future problems and leaving instructions for each scenario is impossible, setting a goal of a “good death that occurs at the proper time and place.”   A good death occurs at home with family and friends, not in a hospital or nursing home. A good death recognizes the importance of quality of life and that death is a natural occurrence.  Fighting death is often associated with pain and suffering (tubes in every hole, respirators, nursing homes).

Families want everything possible done to salvage their loved one.  Often, the one thing loving families could but don’t do is let their loved one die a good death.  Likewise, physicians see death as an enemy to be defeated, without recognizing the damage caused by defeating their foe.

I will leave the decision making up to my wife, my children and my physicians with the understanding that, if I cannot reasonably expect to regain my independence, enjoy my family, joke about sex and cruise the back roads of North Carolina with the top down, then I want a good death.

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5 Replies to “LIVING WILL”

  1. I totally agree……my mother died from the effects of Alzheimer’s…..she regressed so far she forgot how to swallow.
    My father was devastated watching her fade into an empty shell.
    He said when his beloved dog could no longer function she was given a peaceful, respectful passing…… something denied my mother.

  2. Somewhere, I read or heard this quote “I want to die young, as late in life as possible “…Different words, same idea. Hoping all goes well with your surgery. I had several clients that were pleased with the results of DBS. Thinking of you!

  3. I’ve heard more and more about palliative care which sounds like a good death. Stewart, you are a-maz-ing!!!
    Your blogs need to be published in a book. Thank you, thank you for being so open and straight forward. So glad we found you when we moved to Illinois over 30 yrs ago. You were our doctor who became our good friend.

  4. Hi Stewart,

    I like this post and can relate to it after losing my husband. I read the article by Allen Frances, MD. It hit home for me and I agree with it 100%! After taking care of my husband for 3 1/2 years and watching him decline daily right before my eyes , it was so heartbreaking and I couldn’t fix it! We didn’t try anything to try and prolong his life as we both had decided early on, neither one of us wanted that! If we can’t live a decent life, then just keep us comfortable and be there with each other.

    It’s a hard road to travel, but we’ll all have to travel it. It’s part of life and all we can do is decide how we want to handle it when it’s our turn. Also, it’s important to let your spouse and family know what your wishes are, I know some have a hard time with that, but one has to remember it’s that persons decision and we have to honor it. We only have say over our own demise.

    Praying for you, Renee and the surgical staff. 🙏😇

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