The Most Uncomfortable Truth Of All

I need to discuss something with you. It’s an excruciatingly uncomfortable thing to discuss. I get that. But it’s something every single person on this earth is going to face, and so many of us are woefully unprepared for this.

As I write this, a friend of mine lies dying in a hospital bed. He suffered grievous burns to his trachea and lungs in what firefighters call a “room and contents” fire in his house. Firefighters responded quickly and contained the fire quickly.

They didn’t find Paul quickly.

Paramedics resuscitated him for 20 minutes before getting a pulse. Who knows how long he hadn’t been breathing when they started?

That was five days ago.

His ex-wife has been posting updates since the day of the fire, and they’ve been progressively less hopeful, not that they were hopeful in the beginning.

Last night, she invoked his DNR, and today she instructed doctors to begin palliative care.

Yes, my friend’s ex-wife has his durable power of attorney for healthcare. Their adult daughter may be involved, too. I’m not clear, and it’s not the time nor my business to ask.

I think it’s amazing that they had that kind of relationship after the divorce, that he trusted her to be there for him like she is. And I see the rolling eyes and hear the sarcastic comments about how well some of you would “take care” of your former spouse. Paul and Stephanie had the kind of relationship that he could trust her to do this at the right time. That’s fantastic.

My point in all of this is to tell everyone to have the damned conversation.

We’re all going to die. I’ve got congestive heart failure and diabetes, so I may not last as long as I’d like. Because I know what risks I’m facing, I’ve already had this conversation with my wife and older children. The paperwork is already drawn up and they know what I do and don’t want. For example, I’ve said several times that dementia and Alzheimer’s scare the absolute crap out of me. I could deal with mobility issues. Although I’m sure it wouldn’t be simple, I could deal with them. But once my mental train has chugged around the bend and off into the sunset, and the part that makes me me isn’t there anymore? Quit keeping me around. Let me go. That’s how you’ll show me you love me.

Here’s the thing though. Paul was 56 years old. He was getting ready to go to work the day the fire started. He had no clue he’d be dead in a week or so.

You don’t know when you’re going to die. Neither do I. I hope it’s down the road, and I’m doing what I can to push it even farther down the road.

But there’s only so much you can do to that end. You can’t control the drunk driver. You can’t control the electrical short in your house’s wiring. You can’t control the freak wave that throws you off balance in a foot of water at the beach, breaking your neck in front of your wife and kids.

There’s a lot of crap you can’t prevent. Here’s where I note that knowing Paul’s sense of humor, he’d drop a link to one of the Final Destination crash scenes.  

The fact is you don’t know if you’re going to make it home from work today. Lots of us look at advance care planning as something we should get around to as we get older. But there’s no guarantee that we’ll get older. If you’re 18 years old, you can set up your advance care planning. You can even set up your will, and probably should. That’s probably a post for later though.

So there are three really important things that you need to do after reading this. First, you need to inform yourself about lifesaving measures. Don’t just say, “never intubate me,” or “never let a machine breathe for me.” There are plenty of times that short-term intubation or mechanical ventilation can save your life. So you need to get educated about medical treatments that are covered by advance healthcare directives.

Next, you need to have a really uncomfortable conversation with your loved ones. Explain what you want, and explain what you don’t want. Here’s the part that’s going to be uncomfortable for them: you need to ask them if they can carry out your wishes when the time comes. Because Paul and Stephanie had this conversation years ago (and multiple times since then, I’m sure), Stephanie knew that it was time to let Paul go. She knew that he wouldn’t want to live with the kind of brain injury he’d suffered, because so much of him would be gone, even if the body lived on. Those uncomfortable conversations gave her the strength and courage to do what he wanted.  

These conversations should include discussion of organ and tissue donation. I’m not going to get into a lot of detail here, because it’s not the point of my writing this. Suffice to say it needs to be talked about.

The third step is to put your desires in writing. Find out what your state requires regarding advance care directives. Not all states are equal. The National Institutes of Health has a good primer page to get you  started.

It may be that there’s no one in your immediate family that you want to give this kind of authority to. I get that. It’s sad to contemplate some of the reasons behind those situations, but I get it. Find someone else in your circle of friends. Maybe it’ll be your religious leader. Maybe it’s that one friend who’s the one you go to the most for advice, even if they’re not your best friend. But for these things to work, you need to give the authority to someone.

I hope your chosen person never needs to invoke their authority. But I’ll be very glad for you that they were able to.

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