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.

__________________________________________________________________________

“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.

A few years ago, I was searching for apartments with a couple of friends, and came across a spacious apartment in a two-family house not too far from where I live now.  The landlords lived downstairs, which wasn’t ideal, and they were in their early 80s, which was also not ideal (possible noise issues from us), but we took the apartment and ended up having a really wonderful time living there.  I especially, had a wonderful relationship with the two elderly landlords, and even after I moved out, I had breakfast with them every few months and kept in touch.

A couple of months ago I called them to make plans for breakfast and never got a call back.  I got a little worried, but I didn’t want to overreact, so I waited a few weeks to bug them again.  The husband, Sal, answered the phone, and I responded by saying, “S! I called you a month ago and you never called me back!”  His response was the one I had been worried about.  His wife, Coral, who had been suffering from Parkinson’s for years, was sick.  I was going over to the house anyway that night to see my friend who still lives there, so I said I’d stop by to say hello.  What I didn’t expect, was that my hello would also be goodbye.

She hadn’t eaten in a month and had lost significant weight.  She still had her feisty sense of humor, but was weak, and I knew that this was it.  Sal, who loved Coral and had been caring for her for years, told me that he was probably going to take her to the doctor the following day to get some fluids and a feeding tube in her so she could get stronger.  In my head, I was saying “Eek!  She seems to be making the choice to let go – don’t push it!”  My therapist self just listened and validated feelings, and when I needed to leave, I gave them both a hug and told Coral not to let Sal boss her around too much.  She said with a smile and a tightened fist, “I’ll punch him.”

That was the last time I saw Coral, and she passed away a week later in the peace of her own house and her own bed.

Despite this being difficult, emotionally, I carried on, went to New Orleans, and unfortunately missed both of the services.  I haven’t gone back to see Sal yet, but when I do, I’m sure I’ll find a man with a broken heart who wished he could do more for Coral at the end.

____________

When a family member or loved one is suffering, the first thing we want to do is make them feel better.  We want them to be healthy and happy, and most importantly, we want them to be the same as they used to be.  When Sal said he wanted to take her to the hospital to get a feeding tube, he was probably going through that exact mental pattern.  He wanted her to be better.

This brings about a question I have asked before: When do we let go?  What is the point that we let life take its course and let the declining loved one die peacefully and without intervention?  How do we wrap our heads around the rationale when we are so wrapped up in emotion?

I bring myself back to the Terri Schiavo story…How much is too much?  Doctors had said there was no chance that she would recover after trained professionals had tried multiple types of therapy for her. Nothing was making a difference for so many years that she ended up being on a feeding tube in a vegetative state for close to fifteen years before it was decided that she should be able to pass away.  She was fairly young, which I’m sure contributed to her family being so tortured about her situation, but when the body or the brain decides to go, decides not to eat, decides it is finished, for whatever reason, what is the point where we are able to see things from an objective point of view and make a decision that is truly in the best interest for the person who is suffering?

Luckily, my friend Coral was allowed to go in peace.  I’m not sure of the circumstances that led to that decision, and I’ll ask Sal someday, but I’m glad she’s not suffering anymore.  She was so funny, and had so much life, but I know that underneath the surface, she was frustrated that she couldn’t do certain things anymore, and was in pain a lot.  Because she was elderly on top of her health problems, I think it was only fair for her family to let her die naturally, and they did.

I hope someday that I have people around me who will make the right decisions for me when I’m not able to really live my life anymore.

——–

Names have been changed to ensure individuals’ privacy.