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.

Advertisements

I heard a story recently.  Here it is, more or less:

My friend (let’s call her Bianca) has been seeing a therapist for a while now, maybe a year or so, and as far as I know has been having a rewarding experience.  The therapist is a little out there, from what my friend says, and sometimes will go into side stories about herself and her somewhat dysfunctional family.  Questionable boundaries, it seems…

A couple of weeks ago I was having dinner with Bianca and another friend and Bianca mentioned that she is having some issues with her therapist.  She told us that Dr. X, without asking, had given her e-mail address to another patient who is also a musician. Right after a session, Dr. X  informed Bianca of this and told her that she was going to receive an e-mail from this other patient, giving Bianca very little time to figure out an appropriate response before having to leave.

It bothered my friend substantially.  She eventually did receive an e-mail from the other patient, who was harmless, and over the next couple of weeks, she worked up the courage to confront her therapist.

This past week, she did.  She told her how it made her feel, and how she felt her privacy was violated.  Dr. X apologized, but then explained that many other her patients network with one another, and if Bianca had a problem with that she should have said something earlier.  Bianca was in disbelief.  She reminded her therapist that she was not asked about the e-mail situation – she was told, presumably after Dr. X had already given the other patient her e-mail address (which includes her full first and last name – hello HIPAA!?!?).

This went on and on during their session, and as far as I know, Dr. X just. did. not. get. it.  Things really weren’t resolved – at least for Bianca.  Dr. X did not give her an opportunity to express her concern about their relationship, and instead tried to move on from the conversation with her non-apology, not taking appropriate responsibility for her lack of judgment and nonexistent patient confidentiality policy.

This woman has been practicing for over 20 years and used that as an excuse in justifying her behavior.

I am so disturbed by this story.  I asked my friend if I could write a post about it, because I think it’s important for us to remember what the rules are, and that there are professionals among us who probably needed to take a refresher course somewhere along the line.  We are not to share our clients names. How hard is that to remember?  And that’s obviously just one piece of the puzzle.  It may have even been inappropriate for Dr. X to ask Bianca if she could pass her e-mail address along to another patient of hers – therapy is not an opportunity for networking – but she didn’t even do that!

What are the requirements to remain a practicing counselor?  Does a therapist have to take professional development courses or periodic ethics exams?  Should they?  It seems like we, as music therapists, have to do an awful lot in order to remain certified.  Because of the courses I’ve taken and feedback I’ve received, I have been constantly reminded of what my standards of practice should be, and while sometimes there are questions, I ask them before anything goes awry.

I told my friend that if her therapist, in response to confrontation about the matter, had said, “Oh my god.  I am SO sorry.  I don’t know what I was thinking – It will never happen again,” then things might be different.  We all make mistakes.  We are all human.  BUT, she didn’t.  She had the prideful arrogance to turn the problem back on my friend, as if it was Bianca’s responsibility to keep her therapist in check.

My conclusion, is that we need to actually read the HIPAA guidelines we sign.  We need to read and live by the standards of practice and the code of ethics. Not very interesting, I must admit, but I know I really wouldn’t want to be responsible for one of my patients feeling violated and unsafe.

Doesn’t that defeat the purpose of therapy?

Been Caught Stealing

January 21, 2012

Yesterday I was doing some documentation after my group on the psych unit and I overheard a couple of co-workers talking.  They were discussing an incident that was recently in the local paper where a nurse at an area Assisted Living was caught stealing Vicodin and prns (emergency sedatives) from six elderly residents there.  This is somewhat close to home because I work at that AL facility, in the same unit, and also because one of my co-workers talking about it was the whistle blower on the whole situation.  Her aunt was one of the people being stolen from, and she was the person who got the ball rolling in the investigation, but only after at least six months of theft.

The sad thing is that this stuff happens all the time, everywhere.  The things being stolen are usually more sentimentally valuable, such as wedding rings or other pieces of jewelry, but theft is a huge issue in elder care facilities, regardless of the item.  I have a theory about this.  Most of the care assistants and nurses in the facilities I work at are from different countries, speak very little english and aren’t paid well enough for the difficult jobs they do.  If I put myself in their shoes, I can almost understand why things are getting stolen.  In the words of Gloria from Modern Family, “it’s a doggie dog world” (dog-eat-dog world).  In our world, when you don’t have a well-paying job and also have very little chance of improving your situation because of a gigantic language barrier, it’s every person for him or herself.  You pay the bills however you can.  Some people collect cans and bottles from neighbors’ recycling bins, some walk up and down busy intersections asking for money, and some steal.  When someone steals from an elderly person, though, it’s hard to understand it even under the most dire of circumstances.

(Aside: The following question, like all of my questions is not meant to be rhetorical)

What is keeping administration from putting cameras in patients’ rooms and apartments?  

Every elder care facility I have ever worked at has had issues with theft.  If there’s something I’ve come to realize it’s that there will always be thieves, but do we have to let them to get away with it?  If the cameras are protecting the residents (obviously family members would have to approve the camera actually recording something), isn’t that the only thing that matters?  I asked this question to an executive director of an AL I used to work at once.  Her reply was that if cameras are placed in rooms or apartments, then staff has to be notified.  Why?  If the cameras are kept a secret, won’t that be more effective in catching and then removing the people who are stealing?  If I ran a facility, I would not want to have people who steal from the elderly working for me.  On the other hand, by telling staff that there are cameras all over the place, are we saving people from themselves?  Would people who would otherwise steal refrain from temptation because of their awareness of the cameras?

I think cameras seem like a win-win situation.  If the cameras are there, and everyone knows it, even if they’re not recording anything most of the time, would that solve the problem?  A financial director of a facility is bound to ask where the money to pay for the cameras is coming from, and that’s a good question.  I don’t have the answer to that, but I do know that if my mom was in a facility years from now and her jewelry started to go missing, I’d be pretty ticked off.  I’d probably want to buy a camera myself and catch the idiot who is taking my mom’s stuff.

Anyway, that’s close to what ended up happening in the real-life situation from the first paragraph.  After months of noticing tylenol replacements and missing pills, the nursing director at this AL put a camera in my co-worker’s aunt’s room (with her permission, of course) and caught the 29 year-old nurse red-handed.  This nurse simultaneously violated not only the law (what she had been doing is a felony), but did something morally and ethically despicable AND destroyed her career.  I don’t wish anyone that kind of repercussion, but after months and months of stealing pills, it stopped being an error in judgement and started being a calculated thought process which deserves to be punished.

Wouldn’t it be nice if this problem could be prevented?

Our Lips are Sealed

December 31, 2011

Part of the fun of meeting famous people is that you can tell everyone that you met them, right? Well, not if you work at a health care facility where they are admitted and you are under strict ethical and legal restrictions prohibiting you from mentioning anything at all.

I met someone famous recently at one of my many contracted facilites. I know all of you reading this want me to tell you who it is, and believe me I want to. I just can’t. I can’t even tell you if it’s a male or female, what their age is or why this person is famous. Bummer. But… rules are rules, and if we didn’t keep these secrets, you know that pretty soon everyone would know not only the physical whereabouts of the person, but also private medical information about the person.

I certainly don’t want that to happen.

This doesn’t just happen with the rich and famous, however. I work at a psych unit near where I grew up, so occasionally someone I know will be admitted to the unit. The first time it happened, I was very freaked out, but I kept my cool and only said hello to the person. I didn’t look at the person’s chart (I was curious about the dx but didn’t give in to temptation) and I decided I would only have a conversation with that person if they approached me. Another person was a family friend, and I had to approach the person to let them know that I wasn’t going to look at his/her chart, let alone tell my family about it (I “found out” later from the fam that this person had been there).

In past posts, I have been very careful to keep people’s information a secret. I use clients’ first initials, but sometimes I change the initial depending on the setting. I may mention diagnoses at times, but because I don’t mention the person’s name or the names of the facilities I work, it is almost impossible for anyone, anywhere, to ever know who I’m talking about. The world of HIPAA regulations and patient confidentiality makes it illegal for me to talk about patients in a casual sense, but I’m wondering where the line is.

I was recently at the annual AMTA (music therapy, not massage) conference and attended several sessions where other professionals mentioned names (first names), diagnoses, facilities and generally private information about individuals. These were anecdotes about our work, and while I’m not offended or bothered by the way in which some of my colleagues mentioned their clients by name, I have to assume that the clients may not have appreciated it had they known. Was it okay because it was at a professional conference? Was it okay because most of the people in the audience were music therapists? Had the presenters gotten permission to use the names of their clients at the conference? All good questions, some of which I wil never know the answers to. I am only concerned because of my own boundaries and personal ethics.

Something else came up recently, also at the conference, that is currently haunting my blog and may be one of the reasons that I haven’t been posting as much recently (sorry, faithful readers!). My (very cautious) internship director of old is publishing a book of some past interns’ weekly anecdotes about clients who taught us something. I was notified that one of my “patient highlights” was in the running to be used in the book, and is it okay if they use it (?). Of course it is. Would I have ever known that it was mine if I read the book without being asked? Probably not. Would I have cared? Probably not. Is my name on it? No. Was my patient’s name on it? No, but his diagnosis was and the unit he was admitted to in mid 2006. Even though this patient has long since been discharged from the hospital, and no real identifying information was given in my paper, the people working on this project had to ask permission from the hospital to use the information that was there.

Question: If that project is following ethical and legal guidelines, then how ethical is the information I put in my blog?

I hadn’t thought about this until the conference, but I haven’t been able to get it out of my head. Because of this, there are three or four posts “on deck” that I haven’t posted because I’m worried about being unethical. I did go to a “privacy in social media” session at the conference hoping to get some validation or at least some clear guidelines, but it was just about facebook’s ever-changing privacy settings, and professionalism on the web, not ethical boundaries in social media. New regulations and ethics considerations have arisen because of the world’s use of the internet and social media to talk about formerly unknown or uncommon topics. Is the information I’m giving too telling? Is a client going to find my blog and know I’m talking about them? What is the line between presenters at conferences talking about their clients using first names, ages, where the client resides and diagnoses and me writing about my clients in a profession-based blog? I haven’t decided yet. Any thoughts?

Let’s go back to my famous person from the first paragraph. Something that has made this all more difficult is the fact that other people, other clients at this place, know who this person is and have told their family members of my client’s whereabouts. The family members come in for a visit and seek my famous client out to chat. These family members don’t have as great a responsibility to my clients as I do, so who’s to say that they’re not going home to their spouses, friends and coworkers and letting them know who they met earlier that day? In this case, does it make the boundaries more relaxed? Does this mean that eventually it will be okay for me to talk about it with my friends, boyfriend, family and coworkers? If it ended up in the news, would it be okay then? What about if I was finding out about this from random people I meet? There are such gray areas surrounding the topic of client confidentiality, and it seems like no matter how hard I try, I can’t understand where certain lines are – not only in blogging – though if I have a nagging question about whether something is ethical, I generally put that post on a shelf and wait for an answer from somewhere.

What about clients who have passed away? Their obituaries are in a dozen newspapers all over Massachusetts stating where they lived for the last ten years of their lives, who their family members are, sometimes what they had been suffering from, and their age and background. At what point would I be allowed to talk about the person as a person, instead of an initial, if ever?

I don’t need to talk about my clients – any of them. All I want is to talk about instances that may be of interest and provide education to other people in my field or a similar one, but is my desire to share useful information compromising my ethical standards and boundaries? I am very intentional about how and when I share information, but is that good enough?

When and how do the gray areas turn into something clearly defined? What can we ethically say in conversation and/or public forums?

Discuss (for real).