End-of-life decisions and making advance directive choices

Originally published in MedPage Today

by Crystal Phend

“I do not want my life to be prolonged if, to a reasonable degree of medical certainty, my situation is hopeless.”

“I want my life to be prolonged as long as possible within the limits of generally accepted medical standards, even if this means that I might be kept alive on machines for years.”

End of life decisions and making advance directive choices Check one. That’s one of the places where I’m stalled on making my advance medical directive.

It’s not that I’m in a hurry to die. All the talk and fear engendered by the so-called “death panels” during debate over healthcare reform last year didn’t scare me.

As someone who travels frequently for work and lives a distance from my relatives, it’s important to me to make sure strangers aren’t making one of the biggest decisions of my life — under what circumstances I would want to live when all hope seems lost. I already carry a simpler copy in my wallet in case of an emergency to make sure my wishes are known.

After being in Orlando for the American Heart Association meeting in November when it was announced that a leading cardiologist had been killed while jogging outside his hotel and remained a John Doe for some time, I always carry a form of identification and my emergency card even when I’m out running.

It’s not morbid thinking to be prepared.

If I become incapacitated, emergency responders will know medication allergies and who I’ve appointed as my agent to make healthcare decisions for me in such a circumstance. No scrambling through my cell phone for emergency contacts or searching for next of kin.

However, making the end-of-life decisions is proving more difficult than anticipated. For me, the challenge is that the line between hopeless and salvageable has been increasingly blurred. Medical certainty just doesn’t seem that sure.

Late last year, news broke of a man who had been judged to be in a vegetative state for 23 years but who was alert and unable to communicate the entire time. After decades of this frustrating existence, a PET scan determined that his brain activity was nearly normal and he was given special computer equipment to reestablish contact with the outside world.

Then earlier this month, researchers reported that an unknown proportion of individuals in a persistent vegetative state may retain some awareness. Functional MRI imaging combined with instructions to visualize one activity as a Yes and another as a No allowed limited communication with five out of 54 patients tested.

What if I was not as hopeless a case as I appeared from the outside, would I want to prolong my life as long as possible in the hopes that someone would realize this? Would I be willing to go decades in that state?

Either way, my family and friends would suffer; pulling life support even if I prespecified that was my wish couldn’t be easy. My healthcare agent is aware of the responsibility she has accepted. We’ve talked about it, but I haven’t yet made the call, checked the box determining whether I would keep hope alive perpetually or throw in the towel.

For now I’ll just have to trust in the (perceived) invincibility of youth to stave off the decision a little longer.

Crystal Phend is a senior staff writer at MedPage Today and blogs at In Other Words, the MedPage Today staff blog.

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  • Bruce Small

    Would you really want to live in a vegetative state for years, even if you were pain free. I wouldn’t.

  • Basiorana

    Rom Houben never communicated with anyone. He was being used as a puppet by a well-meaning, if stupid, “therapist.” He’s likely been left severely brain damaged, though thinking at least.

    If you haven’t already, read Johnny Got His Gun, then decide if you’d want to live as Rom Houben may have been. I recommend it for anyone in the medical field anyway. No matter what you think now, the hell of that experience would probably change your mind.

    My attitude is, is there a less than 10% chance I will survive it with all my mental faculties and the ability to communicate intact? Then it’s not worth it. Is there a greater than 50% chance I will be left severely mentally disabled? Also not worth it. My mind is all I am. If it is threatened, am I still me?