Advance Directives

I’m an organ donor.

Now, don’t go nominating me for the “Humanitarian of the Year” award just yet since I imagine many of you are also organ donors.

And my guess is that for most of you, you put more thought into the practicality of shelling out some extra bucks for personalized license plates(mine is HOTtie13) than you did in deciding whether you’d be comfortable with someone else literally seeing life through your eyes someday.

So I’m guessing the majority of you checked “No” to the personalized license plate section and checked “Yes” to the organ donor section when filling out your driver’s license renewal.

And why not?

It’s quick. It’s easy.  And it’s definitely painless(since, well…....obviously…..).

It’s not like you’ll be needing that pancreas to secrete any more pancrene juice (or whatever it does) anyway.

Why not upcycle your uvula? Hand over that hamstring. Toss me your toenails.  It’s all good.

Organ donation falls under the canopy of a grander set of end of life issues called Advance Directives which is basically a legal-ish term that refers to what the heck you want done with you, for you and to you while you’re dying and afterwards.

If you’re an organ donor, you’ve already made a decision that is essentially an Advance Directive. You’re telling your loved ones ahead of time(advance) what you will want to have done with your organs upon your death(directives).

If I were to ask the majority of you if you had a DNR or what you feelings were on comfort care versus tube-feeding, I’d probably leave most of you scratching your heads.

Those questions also fall under the Advance Directive category.

And those questions don’t have nice little check boxes you can tick off while you’re getting ticked off at your local Division of Motor Vehicles.

 

Now I’m going to go out on a limb here and assume that the majority of people reading this post are probably relatively healthy. Physically, at least.

And the majority of people reading this post are probably fairly practical, reasonable individuals who have a matter-of-fact attitude about their own deaths.

We want something quick, easy and definitely painless.

I’ll take ‘Dying in My Sleep for a Thousand’, Alex

We don’t want to linger for months or, God forbid years, with tubes sticking out of us, hooked up to machines that do all of our breathing.

We don’t want to endure endless poking and prodding and x-ray after ultrasound after MRI only to hear the same, “These tests don’t really show any improvement, but we could try…”

We don’t want daily checks for bed sores. We don’t want sponge baths. We don’t want infected catheters.

We want dignity. We want respect. We wanna do it our way(…cue Frank Sinatra…).

At least, that’s what we say we want–in theory, hypothetically, ideally………some day.

 

But how many of you, under the age of say 60, have actually talked about this in all seriousness with your family?

How many of you have discussed this with your children or parents?

Better yet, how many have gone beyond the talking stage and committed something to paper?

My guess is, not many of you.

And that makes sense.

I made the assumption before that the majority of people reading this post are probably relatively healthy. Physically, at least.

Healthy people don’t need to think about these things. End of life issues are for people who are, ……well.…..facing the ends of their lives, duh!

So we put it off. And we wait.

And wait.

And wait.

And, too often, we wait until it’s too late.

 

As I mentioned before,  most of us likely wish to have the quick, easy and definitely painless death.

Many of us won’t be so lucky.

We’ll get cancer. We’ll develop Alzheimer’s We’ll have strokes.

We’ll spend time in the hospital. We’ll become “warriors” to our families. We’ll have routine tests. We’ll agree to more invasive tests because we’re “fighters” and what would it say about us if we didn’t??

We’ll have prayer chains established in our honor as we have our feeding tubes inserted. We’ll have third-graders crayoning Get Well Soon cards as our ports are placed into our chests since we’ve blown out most of our good veins. We’ll have bags of liquid hung over our heads going into us and bags of liquid draped over the sides of our bed coming out of us.

We’ll “hang in there.”

We’ll “be tough.”

We’ll do whatever it takes to survive, even if it means tubes and suctioning and oxygen masks.

 

If we’re lucky, we will still have the mental clarity to decide whether we still want to continue with these measures. We will be of sound mind when we declare we wish to continue with our treatments because, although it is not an ideal life, we are still alive and wish to be, no matter the situation.

If we’re not lucky, we will be past that point of mental clarity, and the decisions of continuing with medical intervention will weigh upon the shoulders of our loved ones.

Let me be clear.

Actually, let me be very, very clear.

I cannot imagine that there is any more gut-wrenchingly painful decision any human being ever has to make than to choose how and when a loved one will die, especially without having full knowledge of the dying person’s current wishes.

Been there. Done that. Don’t ever wanna do it again.

I was forced to make many decisions related to Jamey’s dying .

I made a medical power of attorney decision to place Jamey in hospice even though he couldn’t(and maybe wouldn’t) grasp the concept he was dying.

I signed a ‘Do Not Resuscitate” form as he sat across our dining room table from me.

I sat by his bedside watching the urine output bag from his catheter grow darker and darker, knowing his body was shutting down as he had no food or fluids for the final week of his life.

I made those decisions because Jamey refused to talk about his eventual death while he was of sound mind and he was incapable of grasping the concept of his death once he had lost his mental faculties.

So I had to do it.

I chose for him what he never chose for himself.

His death was relatively quick(seven days), somewhat easy(aside from increasing seizure activity and some moments of consciousness, he was resting most of the time) and, thanks to morphine and Ativan, likely painless.

Jamey, like many of you, was also an organ donor. Although he never felt comfortable discussing any of the other Advance Directives such as tube-feeding versus comfort care, the use of ventilators or DNRs, he did decide he to tick off the box on his license to become an organ donor.

Sadly, by the time I thought to mention that fact to the hospice facility he had been gone too long.

The one Advance Directive decision he’d chosen–to give of himself to help someone else in need–went unused.

Listen, I get that end-of-life issues are a delicate, complex and often heated topic. One need look no further than the current, tragic case of infant Charlie Gard

Hopefully, most of us will never know the agony Charlie’s parents, or any parents in their situation have to endure when taking their child’s fate into their own hands.

 

As adults, we can spare our loved ones the same heartbreaking decisions by facing this reality: We all have the individual freedom and responsibility to choose to live our lives as we wish. We should also exercise and express to others how we choose to live out our last days.

 

 

If you’re at a loss for how to start such a challenging conversation, here’s a starter kit to help you out.

For info on advance directives, living wills, healthcare proxies or for a list of your state-specific advance directives(in the US), click here.

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2 Comments

  1. Yay!!!! great post and timely. Good to see it.
    My guy with the tumor in his noggin; his stuff is all done; DNR, DPOA,this stamped, that notarized etc. it was just more paperwork but it haunts me thinking about everything beyond ,you know, just the paperwork. Bleh….

    Mine is done, too. If I get hit by a bus tomorrow, he gets a much cuter, nicer and younger nurse than he has right now.

    But after all is said and done, the university of Kansas teaching hospital can have both our carcasses. They have a wonderful ‘donate it all to science/eye bank’ program. very practical for us poor folks with our financial hands tied because my husbands insurance is Medicare/Medicaid and I have nothing.

    you’re writing hasn’t been in vain, I’ve gone back thru your old posts, they have been extremely helpful, especially how you were able to get your guy into hospice. So my husband is doing about as well as your average astrocytoma BT patient after many years of treatment and the cancer that doesn’t go away. He wants no more treatment and seems to be following Jamie’s path. We are in this grey area where Hospice is out there, on the horizon, but for now, He’s now lined up ( at least in line) for a program called community and home based health services, ( something like that) offered from the state Medicaid program as an alternative to putting him in a LTC facility. It’s just been day by day to see if this will make things better. Time will tell if it’s actually a useful program or if I’m just being handed a bone. I’ve spent the spring and part of summer fighting with the state of Kansas trying to get better care for him,and for Pete’s sake, some support and respite time for me and get it covered by his insurance. I’m sure they know me as ‘that crazy woman who won’t stop calling us’ but that’s what it’s taken.

    The best to you and yours,
    Judy Donley

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  2. This is such a timely post for me. My aunt died last week, she was young, only 52. She had no advance directives, no will, no medical POA. Her son had to make the hardest decisions of his life in a very short span. I never want to put my kids through that.

    My husband and I have wills but no advance directives so that’s what we’ve been talking about since last week. I actually just linked your post about green burials to friends today since it was the topic of conversation. That’s the way I want to be taken care of and didn’t even know it was an option until your post…so thanks!

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