Apr 11, 2014 — Did you forget to do the most important thing for your advance directive? Dr. Anna Beck from Huntsman Cancer Institute tells you what an advance directive actually is, and the most important thing to consider when making one. She also talks about how to bring the sensitive topic up to your family.

Interview

Interviewer: It's the most important thing you need to do when considering advanced directives. You'll find out what it is next on The Scope.

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Interviewer: The most important thing you should keep in mind when doing your advanced directives we're going to find out what that is right now. We're with Dr. Anna Beck from Huntsman Cancer Institute. First of all advanced directives, I think most people know what that is, it's kind of like a living will isn't it?

Dr. Beck: It's a little bit different in that an advanced directive is a legal document that you can produce here in the state of Utah, they're available online, and you can fill them out. Essentially what an advanced directive does is it allows you to be able to say what kind of care you would want, but you direct a proxy, or a surrogate person, to help out with deciding what that care would be.

So it's when you can no longer say what kind of care you want, or how your health care should be directed, then you have somebody else who knows what you want who can speak up and say this is what my father, my brother, my sister, my husband would want.

Interviewer: Okay and one of the most important things that you need to do when it comes to advanced directives a lot of people don't do, what is that?

Dr. Beck: It's picking a surrogate and talking to them about your wishes truly are. A lot of times we make these advanced directives when we do our wills with our attorney. So we fill out the paperwork and it gets filed into a box in the attorney's office but you never have the important discussion with the surrogate and that's really where the rubber meets the road.

Interviewer: Yeah the surrogate, or the rest of the family even.

Dr. Beck: Yeah that's exactly the other issue. Suppose you have these discussions with a member of your family but maybe other members of the family weren't aware of it. Let me give a personal example, my mother recently passed away and when we were figuring out what we were going to do I'd mentioned that she had said she always wanted to be cremated.

Well, I have a brother who is very much opposed to that and because it was not stated in her advanced directive that she wanted to be cremated it became quite a contentious point between us.

What ultimately laid the issue to rest was one of my brothers found a document on her computer that said she wanted to be cremated, and her nephew actually called and said, "Do you realize that every member of our family has been cremated for generations," and with that information my other brother was able to say, "Okay she can be cremated."

Now that was contentious argument that my mother never wanted us to have under the circumstances, and yet she did make her wishes known to one of us, but then I became her advocate against others in the family.

Interviewer: Yeah.

Dr. Beck: So ideally when you do set up how you want your wishes to be carried out if you can do that in such a way that everybody in the family knows then they can all become one supportive unit instead of one person saying, "Well I think this is what she would have wanted," or, "This is what I heard her say."

Interviewer: So would you have those conversations before then you go to the attorney or afterwards?

Dr. Beck: I think you could do it either way and I think that everybody should do those very frequently and often so that lots of people understand what your wishes are. Most people don't have a wish to die in the hospital on a ventilator, most people have wishes that they want to be comfortable at their passing, that they want to be surrounded by loved ones, and that they don't want to be a burden.

Those are usually things that are very important to them but some people may say, "You know what? My life isn't worth living unless I can have a conversation with my family members," or, "I can play with my grandkids," or, "I can feed myself or toilet myself and if I can't do these sorts of things than my life isn't worth living and I don't want you to do anything to prolong it." If that conversation is had with multiple members of the family, then everybody's going to be on board with what's the right thing for Grandma, or Grandpa, or Dad, or Mom.

Interviewer: That's kind of a tough conversation, or even strange to bring up, how would you advise to do that?

Dr. Beck: I usually suggest that patients do that at a very non-threatening time, and I usually suggest Sunday dinner.

Interviewer: Okay.

Dr. Beck: I mean that's usually everybody's there, everybody's in a good mood, and I say you know take ten minutes and say you know what I want to talk about something for ten minutes, and maybe that conversation is spurred on by the fact that we've had a couple of episodes recently where people have wound up on life support against other peoples wishes, and that could be a spark for having the discussion.

Interviewer: Like a news story or something like that? Right yeah.

Dr. Beck: Right so you know that's awful that those families are going through that. I just want to talk to you guys about what my wishes are so that nobody has to fuss about this, so that there's no problems. You know if I get to the point where I can't recognize my family members, or toilet myself, or not be at home then don't prolong my life, don't do anything that will prolong that.

Interviewer: And I'd imagine that you're going to be kind of forceful on that situation because other members of your family might not see it that way.

Dr. Beck: But if you do it as a group then everybody can understand okay we know that you personally would rather keep mom around no matter what but we know what she wants and we really need to honor her wishes. A surrogate's job is not to do what the surrogate thinks is best. The surrogate's job is to do what you've asked them to do.

So when you're filling out your advanced care plan you need to make sure that you establish that with a surrogate, it's not do what you think is best it's do what I am telling you is what I would want to do if I were able to make the decision myself.

Interviewer: Is a surrogate bound by law to make...to do the wishes as outlined in the advanced directive or could a surrogate go off script so to speak? Is that a danger?

Dr. Beck: Well, if it's not outlined with the surrogate they have to do what they think is the best thing.

Interviewer: Got you.

Dr. Beck: Based on what your, your preferences have been you know delineated to them.

Interviewer: Sure, any other thoughts on advanced directives? It sounds like it's really important you talk to your family, make sure that everybody knows about it, you pick a surrogate and have that conversation with them, not just your lawyers. Is there a final thought that you have or something we left out?

Dr. Beck: I would say revisit it from time to time, because as we get older our ideas about what makes our life worth living may change, and our surrogates may not be available as readily, and they may decide that they are going to go rogue on you and think about other things as well. So make sure that you have those conversations often.

You know they don't have to be difficult conversations, they can be just simply stating to your surrogate I don't ever want to wind up like this, or you know how so and so is doing don't let me become like that. Those are things that you can do and kind of check in with your surrogate from time to time.

I think most people their goals at the end of their life is to have a peaceful passing, perhaps passing in a lovely environment, or an environment of their choosing not an intensive care unit, but they also very often don't want to have a lot intention around them, and they don't want to be a burden to the people who are left behind. So if that's your goals, then have those discussions now so that everybody is on board, and that everybody can know that they're doing the right thing.

Announcer: We're your daily dose of science, conversation, medicine. This is The Scope, University of Utah Health Sciences Radio.


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