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.

You wanna know what’s unfortunate?  That someone who has lived for almost a century isn’t allowed to have what they want later in life, because a nutritionist or a doctor said so.

In this post, I briefly discussed my grandfather’s love for ice cream and the nursing home’s refusal to let him have some.  The fear was that he would aspirate.  At 93.  I don’t know about other 93 year-olds, but my grandfather wanted his ice cream. He may not have actively wanted to aspirate, but he knew he cared less about that and more about his quality of life.  It was one of the only pleasures he was still able to enjoy that wouldn’t make him pass out (Cut to the one and only time he came to my parents’ house after his admission to the SNF – he wanted a Budweiser, drank it, and promptly slept for the next four hours in the shade of a tree outside while 15 members of his family played, talked, ate and drank around him).  Anyway, he wanted his ice cream, and my mother – a tough cookie – fought for his right to ice cream.  And won (after weeks of arguments with the dietary staff).  Should it have been this hard?  Shouldn’t a 93 year old be able to have some ice cream?  Shouldn’t an 86 year old woman be able to have some candy when she wants it, without having to focus on her “Diabetus?”

Looks great, huh? Imagine this every day.

In most elder care facilities, the food is less than ideal.  In “dietary’s” defense, there are some people who don’t have teeth.  There are some people who keep Kosher.  There are some people who have been discouraged from having sodium.  There are some people who don’t eat pork, and there are some people with food allergies.  This all makes a SNF chef’s job a bit more difficult, and because of the volume of food that all has to come out at the same time, it’s probably not easy to make a variety of meals, or food that tastes the way most of us would prefer.  BUT, it should be better.  When I get complaints (yes, I, the music therapist who has literally no control over this) from residents who complain that they have had scrambled eggs with no salt and dry toast every day for a month, it makes me want to bring them a waffle or an omelet or something.  When I find out that the kitchen has produced a chicken and rice dinner every night for a week, I want to go down and talk to the food department. Would you want the exact same meals every day?  I sure wouldn’t.  Would you want to be told you can’t have cheese because you’re lactose intolerant?  Lactaid, people!!  What’s the problem here?????

One of the problems is that there is usually one person organizing meals, ordering products and designing nutritionally balanced menus for sometimes 300 people with different nutritional needs.  That, my friends, is at least a three man job, and maybe that’s the real problem.  How can these issues be remedied?  I sure don’t know, but I have to imagine it’s a financial problem.  I also imagine its because we are deciding what food people can and can’t have at a time in their lives when it really doesn’t matter to most of them.

Alcohol is a little harder to support.  Sometimes, people have long running problems with alcoholism.  Sometimes, alcohol makes people with dementia and those on certain medications more confused, unbalanced, and sick.  But sometimes, someone who doesn’t have these problems and side effects just wants a Budweiser.  Or a glass of wine.  Or a little Jack Daniels.  What’s the harm here, really?  Some places say that a resident can’t have wine because then other people will want some.  Shouldn’t people be able to have a little locked refrigerator in their “apartments” where they can keep their own stuff?  Should other people be able to dictate what their quality of life is?

The thing is, most elderly people (at least the ones I work with) don’t care about the health risks – they care about their quality of life. In nursing facilites, there are doctors and nurses and care staff who decide what’s best for a resident, from what they’re allowed to eat, what medicines they should take, when they should have to go to the bathroom (don’t even get me started there…) when they should go to sleep, when they should wake up – the list goes on.  What are the things that our grandparents and elderly friends get to decide?  In my experience, not a whole lot.  Usually, they’re bound to wheelchairs, aren’t able to go outside more than twice a year and really aren’t living what’s left of their lives.  It’s very sad, and I wish I knew how to advocate.  ACTUALLY…I guess that’s what I’m trying to do.

I can’t save everyone and I can’t change someone’s current nutritional and dietary orders, but I can encourage anyone reading this to put this information in a living will, so when you’re 97 and have Diabetes, you can say you want to have some chocolate or a cookie with actual sugar in it.  When you’re 88 and have high blood-pressure, you can say that regardless of what a nursing home’s dietary department wants, you want to have salt in your food.  You can say that if you are dying for a beer, there’s no reason why you shouldn’t be able to feel like a person again and throw back a cold one (see roof scene in Shawshank Redemption).  Unfortunately, having a quality of life as an elderly person doesn’t come automatically.

Fight for your right to Wine, Cheese and Chocolate!

No matter how many times you experience it, and no matter how old you are, loss is still a giant bummer, and with loss, sometimes emotions get the better of your decision-making skills.  When one has a family member who is declining, there is usually a perpetual feeling of loss (usually accompanied by some kind of guilt) and sometimes that emotion becomes very counterproductive for everyone involved.

I’ll start with an anecdote:

Several months ago, a man stopped breathing immediately before my music therapy group.  I have told a short version in another post, but I actually found out today that there was more to the story than I was aware of.  The man was a “full code,” which means that whoever was around was required to do as much as humanly possible to keep him alive in the case of cardiac or respiratory arrest.  He was an older man, maybe 80 years old, who had moderate-severe dementia and was in poor physiological health, and his daughter (also his self-assigned Health Care Proxy) had decided, in the absence of a living will for him, that she wanted her dad to live as long as possible. When EMTs and nurses were unable to resuscitate this man after trying for 20 minutes, his daughter berated, blamed and yelled at the nurses and EMTs for not doing everything they could to keep him alive.

I don’t know this woman, so there could be other issues at play, but I do know that screaming at the people who tried to save your father seems like a grief response.  In talking with a colleague in SNF-land this afternoon, I gained some insight into the process.  She suggested that I mention the responsibility that people sometimes feel for their loved ones when they are declining.  It is my guess that the woman who yelled at the nurses and EMTs was actually not angry with them, but maybe was angry at herself for not being able to keep him well or alive.  Maybe she hadn’t had time to say goodbye and she felt guilty for not visiting enough.  Maybe she was terrified of the grief that would descend in the event of his death.  Whatever the reason, though, she made decisions for him that weren’t actually for his welfare.  Not only was he older and in poor health, but the very process of saving an elderly person’s life with CPR and defibrillators can actually do more harm than good – they can come away with further brain damage from a lack of oxygen or cracked or broken ribs, not to mention the emotional stress.  Here are a couple of facts for your information:

90% of elderly patients who have cardiac arrests die despite CPR.

3% of elderly patients with dementia who undergo CPR leave the hospital and some of those suffer anoxic brain damage. (http://www.uaelderlaw.org/advance/4.html)

Would you want to be saved?

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As individuals with our own opinions, ideals, morals and values, there is no right or wrong answer, there is only a right or wrong answer for each of us.  We have the right to make decisions for our futures, and we need to take advantage of that so that someone else isn’t making decisions that aren’t right for us.

In the previous post, I discussed Advance Medical Directives and how helpful they are in assuring us that our wishes will be carried out even if we aren’t conscious or oriented enough to make decisions for ourselves.  Sadly, even living wills aren’t a guarantee not only because of guilt and grief, but also because of oversights and medical intervention, which I won’t go into.

When we write and sign living wills, the people we give copies of them to are equally as important as the actual legal documents.  This is because people become emotional, irrational, guilty and resentful surrounding loss, and sometimes make decisions based on their own feelings instead of what’s best for their loved one, themselves, the rest of their families, and the country as a whole.  People sometimes can’t emotionally carry out the actions designated in a living will and and up going against the person’s wishes because of their own guilty feelings or hesitation to let go, so it’s important to have other people aware of your needs as well as your Health Care Proxy and Power of Attorney.  Not only this, but we can’t possibly think of all of the potential scenarios that could lead to someone needing to make a judgement call, so often, someone has to make a choice anyway, regardless of how careful we are in writing our living wills, but it’s worth it to try as hard as we can so the burden isn’t placed on someone else

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Last year, my grandfather died.  He was 93, had vascular dementia and was unable to walk toward the end.  When my mom and her sisters made the decision to follow his advance directive’s orders, it seemed very obvious to me that this was the right thing to do, but he wasn’t my dad.  I loved him, and he was a wonderful grandfather, but there’s something about a parent/child relationship that is different than anything else.

Despite my many attempts to ease her mind, my mom still feels guilt and regret sometimes for not being able to do more for him toward the end (she visited him almost every day, but always felt guilty when she wasn’t able to).  She knew in her mind that letting him go was what was best for him, first and foremost, but in her heart, she felt like she had killed him.  Since he passed, we have talked about her feelings a whole lot, and she has definitely been able to move forward, but it’s taken a while.

I think it always does.

Let’s forget for a minute that I used a Backstreet Boys song as the title for this/these post(s)…k?

When they began getting older, my grandparents (mom’s side) started thinking about their futures. Around 1993, they signed documents stating what they wanted in later years.  Still cognitively able and comfortably aware of what happens at the end, they wrote and signed advance medical directives, giving the health care system and their families permission to let them peacefully “go” if something unexpected and damaging were to happen.  In 1993, my grandfather was still working as a veterinarian at the age of 76, and had all of his faculties still intact.  What he decided he wanted was to not be treated for certain illnesses if he wasn’t going to be able to bounce back to his usual lifestyle.  This makes sense.  He and my grandmother, until around that time, were avid bikers, and would frequently bike from their house in Montpelier, VT to visit friends and family miles and miles away.  He was still working.  They were still traveling all over the country together and had just taken a trip to Greece.  My grandmother later died of cancer in 2004 after a ten year struggle with Alzheimer’s-type dementia, and my grandfather (Grampa) was left to deal with his aging body alone.

 

He was a very rational man, and he wanted a DNR.  He wanted a DNR and he didn’t want to be put on IV antibiotics in the case of pneumonia (he always referred to pneumonia as “the old man’s friend”).  He signed papers deciding who would be his Power of Attorney (the person who is designated as the financial and legal “decision maker”) and his Health Care Proxy (in charge of medical decisions) in the event that he could no longer make decisions for himself.  He knew the kind of life he would be happy with, and it didn’t involve lying in a nursing home bed being force-fed pureed foods.  It actually didn’t involve being in a nursing home, period, let alone one that would eventually put him on “thinned liquids” so he wasn’t even able to eat ice cream, one of his favorite foods.  But I’m moving too far ahead of myself…

How do YOU want to be treated medically?

When he began to really decline in the summer of 2009, and for the months until his death in October of 2010, he seemed to forget a bit of who he used to be, and the “new him” wanted to be treated for everything under the sun.  He got pneumonia at one point (before anyone thought to look at his living will) and it was decided that he would be treated for it with IV antibiotics.  He came out of the pneumonia, but his elderly body was thrown for a loop, and he never quite got back to his old self again.  He had numerous infections after that ranging from UTIs to surface wounds gone bad, and all of them were treated with antibiotics.  When he had enough syncope episodes (also called Vasovagal episodes) to sink a small ship, he moved from his dementia specific Assisted Living to a nursing home close to where my parents live.  Shortly thereafter, someone found his living will and advance directives, and found out what the lucid, reasonable, rational man from 17 years ago had wanted.  The shell of who he used to be who was now living a zombie-like existence for the 1993 version and making poorly-thought-out decisions for him.  This is where the advance health care directives came in handy, because the next time he got pneumonia, in early October of last year, my family decided to follow the younger model’s directions instead of making decisions based on their own emotions and guilt.  That’s what those advance directives are for.  He died three days later, and you know what?  He looked peaceful.

In my years working in health care, there are some disturbing, alarming and depressing truths that I have come to realize.

One of them is that we are medically treating very elderly people for symptoms and illnesses that sometimes just come with the end of life (read this post for further thoughts on the matter), and which are all part of “natural causes” (when someone actually dies of those).

Another, is that we (the health care systems, and patients’ families) are sometimes trying so hard to keep people alive for as long as possible, regardless of their prognoses or levels of consciousness, that we aren’t always thinking of what’s best for them.  A good example of this is the controversial Terri Schiavo case.  You are probably familiar, but basically, her legal guardian and decision maker (her husband) had made a decision to remove her feeding tube after she had been in a vegetative state for eight years, based on a reasoned fact that there was little to no hope for recovery.  Her parents, on the other hand, wanted her to be kept alive for as long as possible because they believed she was still conscious.  Everyone’s heart was in the right place in this situation.  No one was trying to do anything wrong, but the whole courtroom drama could have been avoided, had Terri had a living will stating how/if she wanted to be cared for in the case of a traumatic and life-altering event.  She was kept on a feeding tube as legal battles were carried out for six additional years.  Six years!!!

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These kinds of stories of which (unfortunately) Terri’s case is not the only one, drag on for years and years, simply because someone wasn’t prepared.

Really think.  REALLY think about how you want to be medically treated if something life shattering were to happen?  Would you want to be kept alive via intubation if there was no hope for recovery?  Would you want to be treated for Metastatic Lung Cancer if you were 83 years-old?  If you were declining in health with a diagnosis of Alzheimer’s Disease and you had stopped being able to feed yourself, would you want someone to feed you?  You may have thought “yes” to these, and that’s your choice, but when you don’t make a living will, which legally designates someone to make these decisions for you, you run the risk of having someone make a decision FOR YOU that you would definitely not want.  Imagine if you were Terri Schiavo, trapped inside her body and deteriorating mind and you wanted to pass away…And you couldn’t tell anyone to take away your feeding tube.  Imagine if you are 96 years old someday and when your heart stops beating, a nurse realizes that you are still a “full code” and EMTs spend 20 minutes resuscitating you.

When the time comes, don’t you want to decide?