Monday, October 29, 2018

Term of the Day: HEALTHCARELESS

A very dear friend of mine died today.

I am both saddened and angered.  The grief and anger I feel at this loss run neck and neck for first place in my mind.

It is no secret that health care in the United States is a mess.  (That is being generous.)  Not only are things such as out-of-reach pricing of medications and the amount of red tape one has to sift through contributing to this epidemic -- use of the word "epidemic" here is not simply for irony -- but actual hands-on, person-to-person health care is shameful.  Lest anyone thinks my broad brush is standing at the ready, allow me to say that there are many health care professionals who do, indeed, function professionally.  An unfortunate side effect is those individuals tend to get overlooked.  It is not surprising, given the multitude of horror stories, but there are fine men and women who do understand that health care is not simply the banner under which their job lies.  Those professionals should be lifted up as exemplars.

As you have guessed, my focus today is on those whose jobs fall under the banner of health care, but their performance is clearly health careless ... even health couldn't-care-less.

My focus will be on one person, my friend who died.  His name is Ed, and he and his husband Bud have been dear friends of mine for twelve years.  Ed was a good man.  Those who would dismiss him as anything but, simply because he was gay, are missing the point.  He worked as an elementary school teacher for several years, and he was beloved.  People who he had taught decades earlier when they were children still had high praise for Ed all these years later.  He was heavily involved in local theatre for many years, working in front of the footlights and behind the scenes.  (He and I met that way.  He was working stage crew for a show I was in, and would direct me in a show the following year.)  He did everything most people do ... get dressed and go to work, pay bills, and argued and had wonderful times with his spouse, etc.  He and Bud had been together for nearly forty years.  They had a civil union several years ago and later got married when it was made legal here in New Jersey.  Ed died just three days shy of his and Bud's fifth wedding anniversary.  He was not evil or mean-spirited and was one of the kindest persons I have ever known. 

Ed's health had taken a huge turn for the worse in the past four months, but his problems began nine years ago.  How bad has his condition become?  It started with: you do have cancer, you don't have cancer, you do have cancer, you don't have cancer.  And that was the start of all this!  Add to that whether or not his prostate should be removed during all that back-and-forth.  (It was removed.)  Go from that to his primary care physician telling him, when he said he was experiencing chills quite frequently, to have a cup of tea.  Then, try a kidney infection that kept returning over the past nine years and has never, to my knowledge, been treated properly with medication (i.e. too low of a dosage, wrong kind of antibiotic).  And the different kinds of chemotherapy have been a real rollercoaster for Ed.  (More on that later.)

All of that has been the bulk of the past nine years.  Now, let us move on to the past four months.  I visited with Ed and Bud on a Thursday.  The next day, Ed was in the hospital.  We had gone to lunch at a very nice Chinese restaurant near them, so we joked about not eating Chinese food again.  It turned out it was a kidney infection yet again!  Then, they thought he had sepsis, which can be caused by a kidney infection, and were treating that.  Ed had become weak and needed to go to a rehab facility, since their home has (aside from the stairs to go upstairs) one or two steps between each room on the first floor.  The first facility Ed went to was terrible.  Ed was neglected by a staff mostly comprised of health couldn't-care-less individuals, including one example of an attendant coming in to take his dinner tray away.  Only, he had never been given one in the first place.

Let me stop and inject here that Ed had had lap gastric banding surgery (rubberband around the stomach) a few years ago because he was very overweight.  He would eat far, far less than he did prior.  He would be hungry, sometimes snacking between meals, but he could not eat the amount of food he could before the surgery.  He had lost a lot of weight, to where I would joke Hey, who's this guy?, and looked really good prior to all of this happening.  Sadly, and unexpectedly, that initial weight loss might have factored into the past few months.

Ed's second visit to the hospital turned up nothing of major consequence, but the staff was not giving him oxygen during physical therapy (which his paperwork stated he needed) and simply giving up when Ed said he was out of breath and getting lightheaded, which was not long after he stood up.  Since one of the side effects of chemotherapy is making the patient weak, Ed was taken off of his treatments in order to give his body a rest from it and the chance to have more energy to work on building up his strength.  (In fact, the last chemo treatment Ed was on was an "old version" of treatments that is very harsh ... and likely not used anymore due to its harshness.)  My fear, which I never told Ed or Bud, was, if Ed took too long to get his strength back and thus ended up being off the chemo for too long, it could allow the cancer to rear its ugly head again and cause even more problems.

Ed's second rehab facility, which he entered before his second hospital stay, appeared better for only a short while.  A tube in Ed for his urine bag had come out -- Ed said he never felt it and didn't know it had come out -- and the overnight nurse called Bud around 6:30 in the morning to ask him if he'd transport Ed from the facility to the hospital.  (Bud said her tone was very unpleasant when she had to resign herself to calling for a transport herself.)  That same nurse never notified a doctor to come in to see Ed at the facility for an evaluation.  Additionally, the social worker kept running things they would be doing by Bud, when Ed was fully alert and aware of everything going on around him.  Not that Bud should not have known, but sometimes she would tell Bud about things and not Ed.

A few more stays at the hospital revealed that Ed had contracted clostridium difficile colitis, or C. Diff, which can cause anything from diarrhea (which Ed had) to inflammation of the colon that can be life-threatening.  Ed was put on an antibiotic to treat it.

At his third rehab facility -- reminder: this is all in the span of just four months -- things improved only slightly, even with the facility being the best of the three as far as the level of care given.  If you remember, I mentioned about Ed's rubberband around the stomach surgery and his eating less.  All during the past three months, Ed's appetite had dropped off considerably.  He wavered among not being hungry to the "metallic" taste of food from the chemo to just not feeling like eating.  Clearly, depression was a huge factor most of this time.  As a result, he had withered down to just a shell of his healthier, thinner former self.

One mark against this third facility, however, was, at one point, saying they thought Ed might have pneumonia.  They put him on antibiotic for that ... while still taking the antibiotic for C. Diff.   Taking two antibiotics at the same time can be done, but it can be a tricky proposition, too.  They determined that he did not have pneumonia after all, without saying if it was a bad cold or the flu or whatever ... simply "not pneumonia".) 

On yet another trip to the hospital -- I'd lost track at this point, but I think it was his seventh visit -- they decided two antibiotics at once on an already weakened body was too much, so they took him off both.  By this time, they said that his C. Diff. had cleared up.  They also noticed a dark spot on his liver, which they thought was his cancer spreading.  I thought my fear of it coming back when the focus was on all of his other problems had come true.  Ed's primary care physician looked at the scans and said that his liver did not show cancer.  His physician was finally getting some major things in order, like he had said he would, and was arranging for Ed to be treated at Johns Hopkins Hospital in Maryland.  Ed went back to the rehab facility to await that next step in his treatment.

Two days later, I spoke with Bud on the phone who said he was told that Ed was too far gone to recover and he was coming home that day with hospice.  Add to this, a home nursing company, Bayada Nurses, had Bud running around to different pharmacies to get some oral morphine for Ed, including suggesting he go to a pharmacy thirty miles away.  During a heated discussion about this running around, Bud was told, "Well, you should have just let him die." 

Less than forty-eight hours after coming home, Ed was gone.

It is not just ridiculously long wait times at doctors' offices and hospital emergency rooms.  It is not just the greed from charging exorbitantly high prices for medications and procedures.  It is not just the unnecessary tug-of-war in Congress over healthcare in America.  All of those things are not footnotes, and they certainly contribute enormously to the sad state of healthcare in this country.  Not to mention for every time I have heard someone complain, I've also heard someone say, "Well, that's just the way it is."  A huge shift for the better is sorely overdue.

This, however, is where the toughest change needs to occur:  When you have a culture that views old(er) people as disposable, unimportant, and even a waste of time and resources, and from among those numbers, people enter into the healthcare profession -- not everyone, as I have stated, holds that view, but that is still the overall culture they're drawing from --  you are going to run into people who will act accordingly.  Where you come from affects where you are.  No one should ever be treated (or should I say "treated") in the manner Ed was.  I mentioned too many times to Ed and Bud and many of my friends that Ed needed at least a majority of people who were working to get him home healthy, at least healthier, but he did not have that majority on his side.  Ed did come home, but not the way he should have.

A very dear friend of mine died today.

He did not have to.

Terry

2 comments:

  1. Oh Terry. :'( I weep for your friend. This story is so close to home, I nearly thought you were talking about MY friend, but had changed the names. Except for one detail, it is almost verbatim his story.

    I'm so sorry. And you're absolutely right.

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    Replies
    1. Thank you, Amie. So sad and so unnecessary. I am absolutely heartbroken over this.

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