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Good Luck with That—Have a Meaningful Health Care Directive, Please

June 2, 2009

Poppiesgonewild

Above: Poppies run wild. Just a little update for all of you wondering how the poppies are doing. And a little visual for an otherwise difficult topic.

"Good luck with that," it's my new mantra. And it's my new catch phrase. It's my new comment for just about everything—every silly, inane, nonsensical thing that has floated by me in the past two months. 

Lately, as friends know, and as close readers of the blog may have surmised, much of my time has been taken up with elder care issues for Dick’s parents.

What you might not know is that I am a sarcastic and lippy individual (I thought you would get that from reading the blog, but feedback from friends tells me that isn’t coming through as much as I would have hoped; I’ll work on that). 

What you also might not know is that I used to be a first responder. (I actually trained with a bunch of firemen—two of whom passed out when we were learning about birthing babies!) Since I don’t have a search dog at present I let my credentials lapse. This doesn’t mean that if you collapsed in front of me I wouldn’t be able to save your ass, or maybe it does…Imagine, if you were a first responder and you were given a health care directive that read:

1. I want medical treatment that is cost effective. I do not want medical treatment that is not cost effective.

2. I want medical treatment that has a reasonable expectation of keeping or restoring my mental capacities to that of a B. S. graduate in engineering. If E is the a priori expectation that a medical procedure will be successful, C is the medical procedure cost in dollars, T is the to be achieved alert life span in years, and CPY is the cost per year, then treatment is desired if CPY= C/(E*T) is less than $100,000. For example if E=.1, T=1., and C=$100,001., then CPY = $100,001/(.1*1.) = $100,010 so treatment is not worthwhile.

3. If brain dead, no medical care…

I’ll stop there. You get the point. There are additional parts dealing with excessive costs of chemo and other such treatments and an end clause donating organs and/or body parts “that might improve the living.”

Now imagine that you are a first responder. Let’s even say you were first in your algebra class (now many years past). You arrive on the scene where Mr. X has just collapsed and are given that directive. What the hell do you do with it? 

Folks, it’s meaningless. A health care directive is sort of a true/false, pass fail test. Help, no help. There are no guarantees in life.

In Minnesota a health care directive combines the general purposes of the living will and durable power of attorney for health care. (See the link I provide later.)

Even if you were able to dictate the specifics of the aid offered with such, well, specificity that we see in item 2 above, let’s look a little deeper. “I want to receive medical treatment that has a reasonable expectation of keeping or restoring my mental capacities to that of a B.S. graduate in engineering.”

What does that even mean? The author of this sentence thought it meant something, but it doesn’t. Did he mean a B.S. graduate in engineering from MIT (Massachusetts Institute of Technology)? The University of Minnesota? The University of Missouri—Rolla? Or Podunk U.? Is there a difference? Do we rate by tuition? Instructor's credentials? What’s a first responder to do?

What's a reasonable expectation? There's no time for algebraic equations. This isn't debate club. You've just collapsed and someone has come in to help you. Do you want help?

Life doesn’t come with guarantees. I’ve known this since I was two years old and the driver used to bring me home past the cardboard shacks of the slums of Manila. I certainly realized the randomness of life and death by the time I was 7 and saw Goshen, Indiana flattened by a tornado while Elkhart was spared. I felt the personal implications of no guarantees when school chum Jennifer’s head exploded at age 30 on her tram ride home from work. I felt the psychic loss when my mentor Thom died in one of the early waves of AIDs deaths.

No guarantees. No deal making. Don't make me (or someone in your family) the Cassandra here.

What I have seen a lot of in the past few weeks is deal making; the desire to do deals; the need for deals when you live your life with your brain as your biggest and greatest asset. Maybe the prom king and queen try to make other deals (and with some help from the plastic surgeon they might even buy some time), but for the rest of us who simply chugged along on brain power it’s pretty hard to accept that the train might be coming to the terminal station: everybody disembark.

It’s gut wrenching to watch it happening to someone you love, and it’s painful to be reminded that it’s happening to you, even as you sleep, even as you wake. It’s just happening.

Do something for me, for all the first responders out there, all the EMTs and doctors, for every younger person in your family to whom the responsibility of your final care will fall—sit down right now and make a health directive (no matter how old you are). Find out what is legal in your state (or country). If you live in Minnesota the Minnesota Board on Aging has helpful information and worksheets you can download.

Guess what Dick and I are doing Friday for “Date Night.”

Do this while you still have your mental faculties and can really work out what you want to do, what you want to have done. Because otherwise you might be caught, post 80 (if you’re lucky) sitting in the doctor’s office as he tells you your health care directive “is a joke, not even remotely useful, it’s ludicrous,” and you just have to suck it up. Do it before you put some first responder in the unpleasant situation of having to read pages of nonsense before helping you. (They can’t do it and there isn’t time.) Do it before you leave a younger family member wondering just what your wishes might really have been. Arrogant belief in your brain power isn’t going to cut it. If you love the people around you, be sensible, while you can still be sensible.

And in the meantime, celebrate every day that you have by doing something meaningful with it. Maybe it’s as simple as drawing your dog or family member so you really look at them. Maybe it’s as simple as getting together with friends you haven’t seen for awhile. For some folks it might be as simple as showing up to work on time. For me it was listening, just listening (which as you can imagine is very hard for me to do), as an 88-year-old relative dealt with the reality of his doctor telling him he falls into a category unlikely to survive all emergency procedures (with any kind of minimal functioning).

Most definitely it includes responsibly dealing with the inevitable—and doing your health care directive!

While you’re at it, think about what you want done with your body. Organ donation is great. There are other options as well. Consider donating yourself to a body farm.

There are a lot of ways you might “improve the living,” even after you’re gone. Perhaps the best way you can "improve the living" is by writing a realistic and blunt health care directive that leaves your loved ones remembering all your brillance—not second guessing the choices they made under extreme circumstances.

    • Sweetie
    • June 2, 2009
    Reply

    Thanks for the reminder and some new resources.

    A couple of years ago, my dad told me his wishes: “When in doubt, lights out.”
    It may be a little lippy, shocking to some, but after my initial surprise, I was grateful for its simplicity. And if I ever need to make such a decision, it will be helpful to hear his voice echoing in my brain. Don’t get me wrong, it will still send me to my knees, but it will be just that little bit easier.

    • Roz
    • June 2, 2009
    Reply

    Yep, Sweetie, because you’ll know. And I think that is the most important gift we can give to people who will have care of us. Thanks for sharing his succinct approach!

    • karen
    • June 2, 2009
    Reply

    Well, I think Dick’s dad’s directive is delightful. All the EMTs will need to know is whether or not he’s DNR; they won’t read a directive in an emergency situation. The directive is a guide for family,hospitalists, and care givers. As an engineer what better way could he describe what he wants? If you have trouble interpreting it, at his next hospital stay ask for a form directive and fill it out with him.

    My brother donated his body to the University of Minnesota Medical School Anatomy Bequest Program. Lengthy title, but flashes a bit more dignity than Tennessee’s “Body Farm.”

    • Briana
    • June 2, 2009
    Reply

    Great post, Roz! Thank goodness we were given a sense of humor to use while dealing with the terrible shit, right?

    Sorry to hear about your struggles with elder care.

    -Briana

    • dinahmow
    • June 2, 2009
    Reply

    I may be able to help you here…this is the new, cost-effective method of determining brain function (without the ruinously expensive need for cardiac monitors and MRIs et cetera.) The paramedic, first responder or Granny simply hands the patient the card and asks him/her to a) read it and b)explain it.
    If he/she is not able to do this, he/she must be considered brain dead.
    Oh! If this happens anywhere near a movie set, ambulances will remove said brain dead patient at warp speed with lights and sirens on.

    Good luck with this!

    • Roz
    • June 3, 2009
    Reply

    Sadly, Karen, there is no way to deal with a first responder EMT or hospital with things as they stand; so say all the health care workers (19 in the past 3 weeks) we’ve dealth with so far; it’s not just my foible.

    We aren’t in the position to have the luxury of waiting til the next hospital stay.

    Body Farm is has tons of dignity! They do fantastic work. Work that I’m more interested in than medical research. But everyone can make a choice.

    • Velma
    • June 3, 2009
    Reply

    wow. much to ponder. thanks, too, for the reminder. it’s work i must finish, for my kids’ sakes.

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