Heart of Glass

January 20, 2013

Disclaimer: This is a controversial topic, but something I have touched on before.  It also has nothing at all to do with Music Therapy.

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“Mom’s doing great. She did have her defibrillator replaced and she came through with flying colors.  She’s having issues with swallowing, which is a part of the latter stages of Alzheimer’s, but overall she’s doing extremely well.”

This is quote I heard in June of last year on an NPR program called Family Matters.  The program followed three caregivers of elderly relatives over two months and covered important issues spanning the topic of elder care in the home.

When I heard the quote, my gut reaction was to call in to the show, but I refrained and instead ruminated on it for a year.  It’s not about the woman who said those words, or her mom, or my opinions.  It’s about the system, and about our collective inability to let go of ailing and aging loved ones, even at the natural end of life.

In preparing to write this entry, I looked up “stories about elderly people being kept alive with pacemakers” “difference between a pacemaker and an implantable defibrillator,” and several other phrases that I thought would help.  Here’s what I found:

A pacemaker (taken from this website) “[keeps] the heart beating at the proper rate and from beating too slow. You can adjust the pacemaker so that it can be suitable for either the top or bottom heart chambers or both, depending on what type of pacemaker it is and the needs of the patient. It also will only work if it is needed, it doesn’t work all the time.

An implanted defibrillator is a bigger device. It is there to prevent death from a cardiac arrest. The device shocks the heart if it needs to be shocked, because of a life-threatening rhythm disturbance from the lower chambers of the heart. It can correct this rhythm. Because it has a pacemaker built into it, a defibrillator also has the capability of stimulating the heart like a pacemaker, to help stop fast rhythms, at times, and to prevent the heart from getting too slow.”

So, what I’m taking from this is: Ida, the 89 year-old woman with end-stage Alzheimer’s who is having trouble swallowing, just had her defibrillator (a piece of technology which restarts the heart if it stops and regulates heart rhythm) replaced.  Because this conclusion is ginormously disturbing to me, I looked up what kind of  procedure one must endure in order to have one of these lifesaving devices.

Here’s what I found:

It is a minimally invasive surgery which only requires local anesthesia and has few risks.  The risks are, the defibrillator not working or not working correctly, a person having sensitivities to the device itself, and infection.

I also found this:

ICDs are “moderately cost effective in preventing sudden cardiac death,” according to a report in Circulation: Journal of the American Heart Association.  Every ten years, it’s “only” $24,900.

While I would love to believe that Ida’s daughter was the one who decided that this was a good idea out of love for her mother, I believe there was something else at play.

This forum shares several individuals’ stories about this very topic, and most of these guilty souls had been told by doctors and medical professionals that prolonging a declining relative’s life was something to seriously consider, regardless of the quality of life.

What happened to letting someone die with dignity?  What happened to letting someone die, period?  The heart can do amazing things, and medicine can do amazing things to keep the heart working, but when a person is going through the natural aging process, which sometimes (and unfortunately) includes disease, when do we decide to let the body do what it’s supposed to?  I’m sure it’s different in every case.

A year-or-so ago I read an Op-Ed on this topic.  I searched far and wide for this story, and finally found it here.  It’s a brilliant story of a family’s tortured ambivalence about their patriarch who is kept alive far longer than necessary all because a cardiologist would not perform hernia surgery without previously inserting a pacemaker to correct an age-related slowed heartbeat.  Toward the end of this article, the author mentions the same forum I referenced two paragraphs ago, and talks about issues we should all be aware of.  I beg you to read it.

It also prompts a different question…When do we ignore doctors’ recommendations?  If they are good enough at coaxing, they make a lot more money, regardless of what they believe in their heart of hearts is the right thing to do.  We trust doctors to help us survive, remain healthy and give us sound medical advice, but we also trust them to make the right suggestions for our overall wellness.  In our culture of greed, some doctors might as well be Wall Street bankers. Advising a family to consider life-prolonging surgeries and devices when what the device is doing is delaying the inevitable at an emotional and financial cost, is a tricky thing – it often causes guilt in the family and can cause more pain and suffering for everyone involved.

And another question: Who gets to decide what quality of life is?  My idea of a good quality of life is much different than someone else’s I’m sure, but there must be an objective answer somewhere.  I was recently talking with my boyfriend’s mom about this issue.  She told me that my boyfriend’s late grandmother, his father’s mother, had an ICD implanted and replaced two different times.  When she first had it implanted, she was in her 60s and had a good number of possible years left of life.  Though she was never in great health in her later years, before she passed last year she was in rough shape and had had several other health problems that kept her from living her life the way she may have wanted.  BUT, it was her choice.  She had decided that she wanted to be kept alive at all costs, so what can you do?  We have to honor our loved ones wishes, but the problem occurs when families haven’t talked about these issues and caregivers are forced to make difficult decisions for their disabled parents or loved ones.  The amount of love, guilt, and feelings of responsibility for someone else’s life can really get in the way of making appropriate decisions, which may or may not have been why our friend Ida (from the first paragraph) just had her ICD replaced, and may or may not be the reason why people with advanced dementia or a terminal health situation receive triple bipass heart surgery, liver transplants, or even CPR (which I wrote about in THIS post).

I’m glad that I have talked about these issues with my parents and the people around me.  I’m glad that my parents recently rewrote their wills and advance directives and don’t want there to be any unanswered questions.  They recently made me their Health Care Proxy, which will give me (and my brother, who will also have access to their documents) the ability to make decisions based on what they want in the future, if their hearts stop beating, and when life starts to do what it was always meant to: to end.

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2 Responses to “Heart of Glass”

  1. Alysha said

    Thank you for posting this. Beautifully written. This is something that resonates personally with me. Hope you don’t mind if I post a story about my grandfather. I feel like it is relevant and represents the attitude around death and letting go that you mentioned in your post.
    My grandmother had diabetes which began affecting her feet in her 40s. She had what seemed like a bazillion procedures performed on her feet- cutting away at skin and callouses, then toe removal, then removal of more pieces. Next she was placed on kidney dialysis. My grandmother chose to continue her lifestyle: eating whatever she felt like (foods that are definitely NOT recommended for diabetics, constantly) and seldom bothering to take her insulin or other medications prescribed. She declined, and began experiencing increasingly debilitating physical and mental setbacks. She went through a series of hospitalizations for YEARS. I don’t even know how many years. Finally. she was hospitalized for eight months continuously and lost the use of her legs and one hand completely due to atrophy.

    I often felt like she had already given up, but through all of this my grandfather tirelessly stood by her side and cared for her and kept hanging on. Finally, my grandmother would stop talking for months at a time. We couldn’t tell if she recognized us, and strangely enough she would occasionally respond to doctors with one or two-word phrases although she wouldn’t say a single word to my grandfather, who fed her, massaged her, never left her side. She was repeatedly hospitalized, brought back to life, kept alive, so much that I can’t remember the details and its all a blur. But, she did “snap out of it” and talk at Christmas- she talked to all of us like she had never, ever stopped talking. And, at some point, she told my grandfather he would have her for one more anniversary. Their anniversary came and went on April 18th, 2012, and on May 6, 2012, she died at home. My grandfather had never made funeral arrangements (despite everything) and had to put everything together within a matter of days. He seemed, somehow, surprised.

    I always felt like she wanted to go, like she was staying here for him because he needed her and he couldn’t let go. My grandmother’s birthday was on April 18, and it was the first year I forgot to call her. I sometimes wonder if it was because, to me, she was already gone.

    Now, in this story it wasn’t always doctors who insisted on life-sustaining procedures- it was my grandfather. But does this attitude about death, this hanging on, reflect attitudes of the dominant culture?

  2. Michelle said

    A fellow MT and I were talking about similar issues last week. We had a resident/client who was declining and family in denial, and were talking about how it would be a blessing for this person to be able to just pass so she wouldn’t have to undergo any more “treatments.” Working within the health care realm has really made me consider what I would want at the end of my life and I’ve started keeping a list of my thoughts on it. It’s so important to have the conversation about when enough is enough, regardless of what the doctors say. I hope and pray that when my time comes, hopefully in the distant future, my family will be able to honor my wishes and let me go. I’ve seen far too many people who are kept alive with no quality of living left.

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