Why you need to have an end-of-life talk with your family

If something terrible happens and you’re unable to make your own medical decisions, who do you want to make them for you? And what kind of care do you want at the end of your life?

I’m Gina DiPietro, with Novant Health, Healthy Headlines.

Those two questions are at the center of a Novant Health program called Choices and Champions, which helps patients and care teams talk through important decisions. It encourages patients to choose a health care “Champion,” or the person who will stand in their corner when they can’t speak up for themselves, and think about other medical choices they may face in the future.

End-of-life care is always top of mind for Dr. Colin McDonald, a neurohospitalist at Novant Health Forsyth Medical Center in Winston-Salem. It’s true for his young patients as well as his older ones – the seriously ill ones along with the healthy ones. He cares for critically ill stroke patients and others with neurological injuries, including head trauma.

For 28 years, Dr. McDonald has been leading these conversations. In this episode, he talks with Melody Myers about why it’s important to have your care team document your “choices” in your medical record and to choose a Champion to speak for you if you are not able to speak for yourself.

Melody

So tell me about the Choices and Champions program at Novant Health and why it's important and how you've worked with it.

Dr. McDonald

So there are two very important things that any patient needs. And I really say that no matter how young or how old. One of them is to have a discussion with a trusted clinician, who is able to document into the medical record, what their desires and wants, what their loves and dislikes happen to be, what their life would be like if certain things happen. And we call that choices, or advance care planning. Those are really notes that aren’t process-driven. Most of the time, they're blank text that you type into a computer, but they stand-alone so people can see, in October of 2020, Mrs. Smith had this attitude. And then you go forward from that. And suppose Mrs. Smith, in December of 2020, is now diagnosed, surprisingly, and out of the blue with a very aggressive and widespread cancer. At that particular point, Mrs. Smith's goals may have changed.

So when we talk about goals and advanced care planning, it's meant to be a life story that evolves with the life and the health of the patient. So that's one part of it. And that's supposing, and that's where you're right most of the time, pre-hospitalization, that the patient is able to manifest, discuss, express what their choices are.

However, as we all know cardiopulmonary arrests happen out of the blue, stroke-like events happen out of the blue, that's why we call them strokes. And when those things happen, a patient is not typically in a place to have the conversation about what their choices are. And that's where the Champion part comes in. You always look to the patient first, if the patient is able to tell you what their desires and wants would be. But you also tell the patient, there may come a moment, God decides where you're not able to do that. What I know, because I may not be there, I'm just one of the whatever, several thousand doctors at Forsyth Medical Center/Novant Health, I may not be there at that particular moment. What you need, you need a Champion that really knows you, understands this particular conversation, and then understands, knowing what they know about you what they know about your goals and desire, they understand that in almost any circumstance, no matter how difficult, we're going to be able to figure out what you Mrs. Smith would want done in this unforeseen circumstance.

Melody

So what do you tell a patient who might be reluctant to name a champion?

Dr. McDonald

I'll begin by saying, I'm the Champion for my mom and dad, and I have been for many, many years. And my mom, who's a registered nurse, she was the one that was reluctant years ago for me to become her Champion, because she thought it was almost too much weight. And so what I told my mom back then, and what I think a lot of champions really believe there's no greater demonstration of confidence or love, than you turning to someone that you love and trust so much, and say, “You are the keeper of my decisions when I am not able to make those decisions.” And I think when you put it in those terms, it's pretty often and I would say even more than that, most often the case that patients embrace that idea when they look at it that way.

Melody

So what do you tell a family member who doesn't want to honor the Champion named?

Dr. McDonald

Yep. And so let's first talk about what do you do about a Champion that's been asked, and doesn't want to become the Champion, kind of the reverse of where we're going here. What I tell them, and this is something that I had learned at the Massachusetts General years and years and years ago, we called it the curse and the blessing. And the way we described it is, the blessing is that your mom, your dad, your friend has so much confidence in what you know about this person. Let's say it's Mrs. Smith, and she has placed all the confidence in you that can be no greater blessing than that. And then you actually have to go hard Scottish on them after that and say – here's where the curse comes in – I would be asking Mrs. Smith, if she was able to tell me … I never met Mrs. Smith, when she would have been able to tell me. You were here representing Mrs. Smith. Knowing what her wants and desires were, you can tell me all you know about her joys, her hobbies, her loves, etcetera, her fears. You can tell me all about that and I can help guide you to what I think she would want. But I need to know a lot from you. And once you explain that to most Champions, they're OK with it, they understand that it isn't their choice. They're making a choice in place of Mrs. Smith, who was unable to make that choice for herself.

And that then gets to the other point, which I really don't see arise all that often. And that is what happens if you have multiple family members, and one of them has been identified as the Champion, and then there are some other children in the mix are other friends … and they may disagree as far as direction of care? At the end of the day, the Champion, if it is ascertained that that Champion was rightfully made, meaning when the patient was in sound mind and possibly sound body — but certainly sound mind — and made that particular decision, and you ascertain the Champion understands that they're making a decision based on Mrs. Smith's wishes, then it is pretty easy to discuss with family members: Ladies and gentlemen, this is who mom, dad, whoever, chose as her Champion. This is the person we need to be guided by. And I really, over many, many years, have almost never run into conflict once you sort of let families know that this was done with a lot of foresight on the part of the patient.

Melody

How does a champion or advance directive take the burden off of the family?

Dr. McDonald

People have very, very busy lives. And it is often the case that it is at that unforeseen moment that bad things happen to good people. When someone was totally not expec...