I Want it That Way: Advance Medical Directives

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?