009 Who do you trust to speak for you?
Welcome! Or welcome back.
This weekly newsletter is intended to give you stories and tools to help you be more comfortable as you help others in hard times. (Be sure to look at the archives!)
This week, I’m starting by making you uncomfortable.
When you can’t make healthcare decisions for yourself, who do you want to make them? And how will you help them make those decisions?
I know. I’m asking you to imagine a hard moment. But if you spend the next few minutes with me, I’ll help you make it easier for that decision maker, for you, and maybe for me as a hospital chaplain.
(And before you go further, remember that I’m not an attorney, and this isn’t legal advice. On the other hand, it’s good advice.)
(That’s my colleague, Dan, on the left. He’s not an attorney either. He’s had these conversations with people, too.)
This winter, Nancy and I read a book called Upstream: The Quest to Solve Problems Before They Happen by Dan Heath.
The point of the book is to “prevent problems rather than react to them.”
For example, when we know that a particular kind of conversation is always hard, we can write a script for it, we can role play it, we can practice it so that we don’t have to reinvent it every time. When we know that a problem is likely to occur, we can make plans and provide training to help get through the situation without the problems happening. Of course, it’s challenging to get people to cooperate, to change systems, to get early warnings. But Heath talks through ways to build those systems.
Thinking upstream is why I’m writing to you today about healthcare representatives. I’m trying to help us both prevent problems.
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In our hospital, chaplains are often the team to call when no one can find next of kin. We’re the team that’s called when next of kin isn’t clear on what their responsibilities are.
“Next of kin” in the way I’m using it is “the person who can make medical decisions for a person/patient who suddenly can’t.” A more accurate phrase is “healthcare proxy” or “healthcare representative.”
It’s what we need when someone comes in from a sudden heart attack in a grocery store parking lot or from a motor vehicle accident scene. Their wallet is back at the scene. No one at the hospital knows for sure who they are. Or we know who they are, but we have no contacts.
What a physician wants in those moments is a person who can make treatment decisions. What I want in those moments is someone to represent what the person/patient would want. A person who can speak on behalf of the person/patient about next steps.
Because we want someone to speak for this person, we’re pretty driven in our work.
I’ve called multiple sheriff’s departments, searched through obituaries, looked on Facebook, got a free trial membership to an online genealogy site to look at old obituaries, used free and paid search engines. We’re looking for clues to help connect the person in our bed to someone who is related.
Once, for example, the tattoo visible in a Facebook photo matched the tattoo on the leg I could see in an ICU room. It connected with a possible identification. Eventually, I sat with the family inside that room.
It feels awesome to figure this out, to find someone when a person hasn’t left us clues.
It’s not awesome, however, for the long-estranged family member who didn’t know they were the legal next of kin. Or for the friend by the bed who knows more than the brother on the other side of the world but isn’t related. Or for the spouse who doesn’t remember when or where they are.
States can have default healthcare representative hierarchies.
In Indiana, for example, it starts with a designated healthcare representative, then goes to spouse, to adult children, to parents, to siblings, to adult grandchildren, to grandparents, to other relatives, to someone who knows the person well enough to represent their wishes. At any level, if there is more than one person (e.g. three children), the decision is a vote of the three.
But we can do better, those of us who want something more than “default”.
1. It is easier for all of us when each of us decides who we want to make healthcare decisions when we can’t. And puts it in writing.
There are official documents for those designations. Those of us in Indiana can download the Indiana Advance Directive and complete it with two witnesses.
And everyone else can visit Prepareforyourcare.org which has explanation videos and forms for every state. And the Conversation Project has great resources, too.
2. It is easier for all of us when we tell the person we designate about our wishes. About your values and life goals. About your horror stories – “My mom was kept alive on a machine much longer than she wanted.” About what makes a good day for you.
So, pick someone. Talk with them. Put it in writing. Carry it with you. Have it in your medical record. Give a copy to your representative.
All this won’t make those moments at the hospital easy. But knowing who is representing you can bring some clarity.
If you have any questions, ask. Reply to this newsletter or leave a comment. I’ll answer, as best as I can.
Thanks for listening. I’ve had some hard conversations recently that I want to prevent.
Have some good in your weekend. Consider supporting this newsletter.
See you next Friday!
Jon