(upbeat music) - Hello and welcome to The Journal.

I'm Steve Kendall.

All of us at some point in our lives will be faced with making difficult medical decisions and other decisions that will come at the most vulnerable time.

What can we do to properly prepared to make those kind of decisions?

One way is through advanced care planning and we'll be joined in this Journal, by a number of experts to help us better be prepared for that situation.

Joining me in the first segment from the Hospice of Northwest Ohio, is Sara Chambers, and also I have Barbara Gunning from the Hospital Council of Northwest Ohio.

And I wanna thank you both for being here today to talk about this really important topic.

I guess the first thing we probably need to describe for people is, what is advanced care planning?

It's a nice name, but what does that really mean to the average person?

- Well, I'd like to tell you all about advanced care planning, but first I'd like to tell you about some of our partners.

- Oh, okay.

Sure.

- In our organizations, because this is a regional initiative and a number of partners have made this possible, and so one of our stronger supporters is the Hospice of Northwest Ohio, and, but other partners, very strong partners are ProMedica, Mercy, the Bellevue Hospital, we have Wood County Hospital, Fulton County Health Center, UTMC the University of Toledo Medical Center, Henry County Hospital, and I am sure that I am forgetting somebody, but it's a nice, wonderful group of individuals.

So now, let me tell you about advanced care planning.

So advanced care planning is really thinking about and talking about the choices that you would like to make, have made for you in the future if a time comes when you cannot communicate your own decisions.

- Oh, okay.

And as I said, that comes at a time and obviously, if you're not prepared for that now being able to communicate what you want to have happen or not happen, becomes very difficult.

Obviously, Sara, you know, from Hospice of Northwest Ohio, not everyone is as prepared as they should be.

And when you talk about advanced care planning, what are some of the sort of the first steps and why is it so important that people do this before they may find themselves working with your organization or in the hospital or in an emergency room or hospitalized in some kind of situation.

So why is this so important?

- I think one of the reasons is, when you're in an emotional crisis, you really can't think straight.

And there's some scientific evidence of that.

They've done some studies with people in MRIs showing that, you know, your emotional side in your brain kind of takes over.

And it's hard to think reasonable and logical when you're in a healthcare crisis, which never comes with a warning.

- [Steve] Sure.

- And I think a lot of people find it difficult to talk about, but after they've sat down and had a conversation, they feel empowered.

So I, as a nurse, I have a background in ICU and in hospice care and I've seen what can happen when people don't plan, and that can create rifts in families, it can create a huge amount of emotional distress that can go on to affect people's emotional well-being for years.

- Yeah.

And off for you too, you want to be able to make the right medical decisions and the right other decisions at that time, and as you said, things can get in the way, if you haven't thought at least a little bit about it.

There really isn't anybody who shouldn't do advanced care planning, correct?

I mean, we all should do it.

- Oh, we think that everybody, all adults and we consider anybody 18 and older as an adult because an accident, a sudden illness, can happen at any time to anybody.

And we do know that for younger people under the age of 45, the most common cause of mortality is injury.

So nobody plans on being injured.

- [Steve] Sure.

- It just happens.

And certainly COVID which, you know, we're just starting to get out of this pandemic, took a lot of lives.

Certainly no individuals who were getting COVID were not planning on being in the hospital, perhaps being on a respirator, ventilator, and then some of them passing.

- [Steve] Sure.

- So that was very meaningful over the past couple of years.

- And Sara, I think, you know, you mentioned the fact that this can create, you know, unfortunately unnecessary other issues with family members.

Maybe someone believes they're the ones who should be in charge, maybe another family member disagrees or there's, and if there is no plan of like, well, this is what the person we're talking about wanted, everybody will have their own opinion on what should or shouldn't be done and when it should be done or not done.

So that's a big issue.

If you don't have anything in place at all, yeah, you're sort of at sea on this with people and it creates issues.

- It does.

And when we sit down with an individual and their healthcare power of attorney, we are really trying to prepare that power of attorney to advocate on their behalf and not necessarily make decisions for them.

And then there's a couple of common misconceptions.

One being once I sign those documents, my healthcare power of attorney can make decisions for me, but that only comes into play, if you cannot make decisions for yourself.

Whether you can't communicate or you're deemed maybe too confused to make your own decisions.

- [Steve] Yeah.

- So none of these documents come into play until that.

And I think the other common misconception is that this is only for older people.

But the history of it, the reason we have these documents, the reason we're allowed to make future medical decisions is based on three cases of very young people in their 20s having an acute illness or injury.

- Yeah.

Because I think as you said, Barbara, an accident, something that no one has expected, you don't, you know, yeah.

Now suddenly you're thrust of this situation where maybe you're 25 years old, maybe you're married, maybe you're not, but now someone, if you're unable to make those decisions, you're trying to figure out who's going to make those decisions on the fly.

And that's obviously not the best way to do anything, let alone something as important as this.

- Absolutely.

So number one is we think that talking with your loved ones about your wishes is most important, but with advanced care planning, we also help individuals complete their healthcare power of attorney documents, their State of Ohio Advanced Directives.

So these are legal documents, they name the person who, or person or persons who you want to advocate for you.

However, we all... Just having the documents is not sufficient.

We have to have the conversations.

So many people will say, oh, I don't need my document because my spouse knows what I want.

- [Steve] Exactly what I want.

- My daughter knows what I want.

But in fact, that's not the case.

And even in my own family, after knowing my father for years and years and years, and being close, when the time came for me to make some decisions, I thought, I don't really know what his values and preferences are.

So I had to sit down in conversation.

- Yeah.

And we've got just a moment here in this segment, but things that are verbalized are up for discussion when this time comes, because everybody thinks, okay, I know exactly what this person wants, but then having to implement that in that situation, probably isn't comfortable.

Maybe somebody goes, "Wait, I know he doesn't wanna do anymore pursue this medical course any further, but I can't bring myself to say stop."

And I know we're gonna have to capitalize this in a few seconds, but Sara, how do you, when you deal with that, how do you convince people if this is what he wanted, how do you work with someone who says, "Wow, I know this is what he said, but I can't bring myself to do that."

- I think it's a very gentle conversation that involves some empathetic listening and a little bit of time.

I also think it's important to point out though, that Barbara mentioned these are legal documents, but you do not need a lawyer to fill these out.

- Yeah.

Okay.

When we come back we're gonna talk a little bit more about advanced care planning.

Thanks for staying with The Journal.

We'll be back in just a moment.

Thank you for staying with us on The Journal.

We're talking about advanced care planning and joining me in this segment, are Margaret Parker, a certified advanced care facilitator, and also Edoseawe Okoduwa, who's a graduate student in Health Service Administration at BGSU and the person who kind of pulled all of this together for us.

So thank you for doing that.

- Thank you for having us.

- When we talked in the first segment, obviously advanced care planning's important for everyone.

- Absolutely.

- But it's especially important for adults from racial and ethnic minorities.

So talk about why it's so important for them.

- Absolutely.

Thank you very much for having us.

One of the things that's important for advanced care planning as far as minority population is concerned is, there's a wealth of research that shows that minority populations and people of color, usually have worse health outcomes compared to white Americans.

And so as part of national health equity goals, right?

It's important for us to begin to extend advanced care planning, just so that they can have equal access to proper care for end-of-life decisions.

So it's really important because they are on the wrong end of the healthcare spectrum.

They have worse access, they have worse outcomes, they have worse possibilities as far as healthcare is concerned.

- Yeah.

Now why would they be, why is that?

Are they just least likely to engage for some reason?

Or what are the reasons why we find it, them in that position?

- Yes.

One of the reasons is they are least likely to engage.

Like you said, for various reasons.

One of them is a perceived distrust in the healthcare system, another is because of the low, technically low educational level.

So one of the things that limits people, especially ethnic minorities and people of color from engaging in advanced care planning, is low socio economic status, low educational status, and you know, every peculiarity that's associated with ethnic minorities.

And so these aspects of their lives kind of limit their inclination towards advanced care planning.

- Now, Margaret, when you, you're obviously certified in this field, you deal people who are entering this process.

- Yeah.

- What are some of the difficulties you see, or how do you address those situations where people are uneasy about even coming in and talking to someone like you?

- It's difficult.

Again, you have to, the communication is, sometime it's broken because of the distrust or them believing it's not something that necessarily, is not necessary due to family history, makeup, They just don't think it is necessary that they have to plan in case something were to happen to them.

And being a facilitator, that's my job, not to convince them, but to let them know how important it truly is, - [Steve] Yeah.

- to get this, put an advanced care directive in place.

- And what are some of the things that you say to them to put them more at ease about just entering the process and then understanding why it is so important?

- I usually, most times I give 'em an example.

I have an example, my mom passed away 23 years ago.

But when she passed, she had already given me her directives, even though they were not in writing.

And she wanted to be cremated when when she passed and she did not wanna be put on any life support.

And so I had to explain that to her sisters who insisted that I follow the family plan, yeah.

- [Steve] Instead of her plan.

- Yeah, Instead of her plan.

And so I use that as an example and let them know that, you want, the advanced care directive is to do what the person wants done and not what someone else may want done for them.

- Now, and I don't wanna pry into your person, but how did you convince the rest of your family that, "No, we're gonna do what our mother wants us to do?"

How were you able, were you able to work that out with them?

- I just said, that's what mama wanted.

- That's what we're doing.

- No, I just said, that's what mama wanted.

- Okay, good.

- Or that's what your sisters wanted and your sister wanted.

And they just said, okay, - [Steve] okay.

That's good.

- And they did not argue with me.

- [Steve] Yeah.

- But I have seen situations where, you know, family members have said, "You don't know what she wanted."

- [Steve] Yeah.

- But once we had that conversation, which is also very, you know, important to have, when you're putting together an advanced care directive, is to have the people around so you can have those conversations so that people are knowledgeable about what you're doing.

- Yeah.

And it's called advanced care planning for a reason.

- Yes.

Yes.

- But it's interesting because I'm sure that at times, as you said, you've got a list of things that the person wanted done, - Yes.

- But there's still that difficulty where some in the family says, "No, no, I'm not signing off on that.

I don't agree.

- Absolutely.

- And that's a difficult situation.

- Yeah.

- Absolutely.

And I think one of the things that adds to that is religion.

You know, when people think about advanced care planning and they think about, "I don't wanna die yet, I don't wanna leave this world yet."

You know, which limits their inclination to, you know, engaging in advance care planning.

So it feels they would more be, they would be more inclined to pray concerning your illnesses or to engage in other practices.

And this is not saying you're gonna die tomorrow.

This is just saying, You know what?

Have the measure of influence on how you wanna be treated if this happens in the future.

It's gonna happen someday.

- [Steve] Right.

- But you wanna be able to influence what happens with you when it happens.

- Yeah.

And one of the things we're not good at as a culture in America is dealing with death and what precedes it and what follows it and that sort of thing.

And this is a, for, as you said, it's a perfect example.

I don't wanna talk about it.

- Yeah.

- But the most important- - I don't wanna deal with it because if I deal with it then tomorrow I'll disappear.

- It may just happen.

- I'll die tomorrow.

- Yeah.

- Yeah but advanced care planning isn't about necessarily dying.

- No, it's not.

- You know, you need to put things in place in case we have an accident, - [Steve] Sure.

- We just went through the pandemic, you know, do I wanna end up on a respirator?

You know, is that what I want?

So it's not necessarily about dying.

- [Steve] About dying.

- It's about what medical care do I want administered to me if something were to happen to me?

So a lot of times you have to take death out of the equation and let them understand that it's the not necess.

We're not talking about you dying.

- [Edoseawe] Yeah.

- We're talking about there being an accident or some, you know, something that happens to you where you're, you know, what do you want done?

What do you want done for you?

- [Steve] Right.

- And so- - [Edoseawe] Especially if it happens and you're involved in a situation where you're unable to communicate yourself.

- [Margaret] Communicate, right, right.

- And so having those directives helps inform them, you know, teaches them what exactly they need to do.

- [Margaret] Yeah.

- And so the families and the loved ones have peace doing that.

They followed his, or her wishes.

- [Margaret] Yes.

- As opposed to feeling guilt for the rest of their lives.

- Yeah.

And that's a really good point because it does take that sort of feeling of like, wow, do I really wanna do this?

- Absolutely.

- And yet, if the person said, "Look, this is what I want," you're right, it relieves, as you said, relieves that pressure of like, am I doing the right thing?

- Am I doing the right thing?

- And yeah, that's a really good point.

- Absolutely.

- When you encounter people, I mean, what's the success rate of people that come into a lot of them eventually subscribe to this or does it take multiple approaches to get people to sign off on something or become involved in this process?

- The biggest problem that I find as a facilitator is getting the person to choose someone that they can trust to make those, to do carry out their directives, their instructions as to what they want done.

So that's the hardest part, is selecting someone.

If you have a family, say you have four or five kids, do you wanna just choose the eldest?

Or do you wanna choose the child that you know, won't be so emotional and will do exactly what you are asking them to do?

And I happen to be that child in my family, because I didn't allow my emotions to come into play.

I did what my mom wanted me to do.

- [Edo] Wanted you to do.

- Now, one of the things we talked about early on was the fact that, for minorities, getting them to engage is difficult.

What are some of the things that you're doing to try and make sure that population becomes more engaged with this program?

- Yes.

One of the things we're trying to do is to reach out to them in the language they can understand.

And so we have a whole slew of certified facilitators that are blacks, that are Hispanics, you know, that speak Spanish, you know, so they can connect with them on a more personal level.

And so, because there's a wealth of research that shows that black women in hospitals tend to prefer black doctors to treat them, especially when they wanna have deliveries.

And so it's taking that same wisdom and applying it here saying will this person who has such a huge level of distrust for the healthcare system, be more inclined to listen to somebody who seems to be like them or somebody who society has termed different?

And so it's breaking those barriers by bringing someone who can connect with them in a more personal level, to drive home our goals.

- Okay.

Well, when we come back, we can talk a little bit more about that as well.

Back in just a moment, we're talking about advanced care planning on The Journal, back in just a second.

Thank you for staying with us on The Journal.

We're talking about advanced care planning.

One of the things we haven't touched on and I'm, I'm joined again by Sara and Edoseawe, Is there a fee for this?

What is it gonna cost me if I approach the, all the people we've had on earlier?

I wanna get involved in the program, what's the fee for this?

- There actually is no fee, which is fantastic.

It only costs the time that the person is willing to put in.

And so they can contact any of our partners in the regional initiative, which I think it's important to point out that technically these people are competitors, but we are working together to use the same language and the same approach, because that's how important this is.

- Well, and I think, you know, when I know when Barbara mentioned all of the partners, it does make it easier for the providers at that point, where they're - Absolutely.

- dealing with folks, if there's a plan because otherwise they're waiting and time, of course is always important in these situations.

- Absolutely.

- It makes it easier for them to deal with the family and what the outcomes can be and what procedures to do or not to do.

So it is important for that.

- Absolutely.

- You know, we've talked about demographics, is it?

And I know that Barbara talked about the fact that everyone should do this, but I suppose, especially if you're a little bit older, it's never too soon to engage in this process because as we get older, things start to happen.

Some of them may be a little more predictable than others, but we're still susceptible to things that just happen out of the blue, a medical situation.

So it's really important for people who are older to get involved in this, correct?

- Absolutely.

Absolutely.

It's like Barbara said earlier, it's important for people of all ages to, you know, engage in advanced care planning.

But I think it's not exclusive to just all the people, you know, young people as well, - [Steve] Sure.

- Also need to get involved in advanced care planning.

- [Steve] Right.

- Why?

Because as a young person, I ask myself, why exactly should I get involved in advanced care planning?

It's because I've come to realize that young people are not invincible.

We think we're invincible.

We think we can do anything and we can go anywhere and we can just live lives anyhow, and that there's some force out there that keeps us from, - [Steve] Protects us, yeah.

- That protects us, you know.

And when we hear about negative health outcomes, we tend to think of it as an old people's thing.

For time and again, we have seen that young people suffer grave illnesses, young people suffer grave diseases and accidents.

And as a matter of fact, one of the, I think is the highest cause of death among people aged between 18 to 45, is unintentional injuries.

- [Steve] Sure.

- And so these things happen.

And so young people also need to get involved in advanced care planning.

We make decisions every day about what genders you wanna be, what places we wanna go, where do we wanna marry?

Who we wanna marry?

What jobs we wanna take?

If we wanna take those jobs, you know?

So if we make decisions every day of our lives, why shouldn't we make decisions about how we wanna have our healthcare happen?

Especially if something happens that we are unable to communicate.

- [Steve] Right.

- It's really important.

- I think, as you were talking earlier too Sara, that this that's a good point, this is, should be just another one of those things you do as part of your daily life.

- Absolutely.

- But a lot of times I'm sure in your position, you see people who are now in this situation and maybe didn't plan as well as you would've liked.

How do you, when you have those situations, when families come in in a hospice situation, especially, and they haven't really figured out how this is going to conclude, I guess, in that situation, that's a difficult situation to be put in and you have to deal with people who are, again, not in the best of state of mind at that point in time.

- Well, we try really hard in hospice and palliative care.

We have time built into our visits.

We can do more than five, 10 minutes with a patient and family.

And we are trying to incorporate that into primary care now, so that young adults, 18 and over, start to hear about the language, start to hear about why this is important.

And if you look back on the history of why we have these documents, it was because of Karen Ann Quinlan, Nancy Crisanne and Terri Schiavo, who were three young ladies who had something happen to them who were left in vegetative states for a long period of time before they were allowed to die naturally, which was against their own wishes.

And so, unfortunately it's the lady's legacies, but they are the reason that we had the Patient Self-Determination Act in 1991.

So this is a fairly new concept to plan for future healthcare decisions, but in hospice and palliative care, certainly we have the time built in, but we are trying to, with our regional partners, build this into primary care and be more upstream of the process.

- Sure.

And because the more you know about it, as you said, the more familiar or you get with it, the more at ease you'll be with engaging in the process and not see it as like, "Oh, I don't wanna talk about that.

I don't wanna think about that."

- Edoseawe made a great point in people being afraid to talk about it, but I always tell people, talking about this, doesn't make death come sooner.

Just like ignoring it isn't going to prolong your life.

- Absolutely.

And on the other end of that, when I think about advanced care planning, instead of thinking about dying soon, I think about living carefully.

So it goes hand in hand.

Right?

So living carefully, but also having this plan in case this happens.

- Yeah.

And I think the other thing you would like to think that if you go through this process, it does relieve the pressure, - Absolutely.

- The concern on everybody's part, whether it's the person who is putting the plan forward or the people who then have to apply it in whatever the situation is, - Absolutely.

- That it does clarify a lot of things.

At least that's the goal, obviously.

I know that there's a discussion here too about a younger person being set up as their parents' healthcare agent.

Talk a little bit about that, how that would work for people, because that's probably a little tricky to a younger person who now becomes the caregiver for their parent.

And that's sort of a reversal of role, which we deal with to some degree in a good way, but not necessarily always.

- Sara, do you, I mean, you have clinical experience.

Do you wanna speak into that?

- Sure.

So in the state of Ohio, you actually don't need to sign off to be somebody's healthcare agent.

And I found that out fairly early on when I asked my parents if they had documents and they said, "Yeah, you're our agent."

I said, "We need to talk if I'm your agent."

Which I didn't know at the time.

And most people, they don't necessarily know what they want, but they might absolutely know what they don't.

- [Steve] Ah, okay.

- What they don't want and being the agent as a young person, just that conversation can actually be very empowering.

And I don't want as the agent to be making decisions, I want to just be advocating for what my parents want.

And that's how we prepare them.

The conversation takes 45 minutes to maybe an hour for one individual.

Usually I'm sitting down with a couple and I have done quite a few younger couples.

And at the end they say, "I feel empowered.

I'm so glad that we talked about this.

I feel better."

- Relieved, maybe- - Relieved.

Yes.

- We have a plan now.

- Yes.

- Absolutely.

- As you said, we have a plan for everything else in our lives, there should be one for this.

What's the best way for somebody to get in contact, to maybe become involved in the process?

Is there a phone number, a website, or is there somewhere they, what's the simplest way to do it?

- Absolutely.

It's a very straightforward and free process like Sara mentioned earlier, just reach out to us at acp@hcno.org to get started.

We have certified facilitators of all ages and for all specifications to work with you, to help you through this process of starting your advanced care planning, to choosing your healthcare agent, to signing off your advanced directives and everything you need to know about it.

- [Steve] Great.

Okay.

Good.

- acp@hcno.org.

- Okay, great.

Because the more people we can get involved, the better it is for everybody and for the healthcare system and all that too.

- Absolutely.

- Well, thank you so much for being here and again, - Thank you.

- Thanks to Barbara, Margaret, thank you very much for being here too.

- Thank you.

- You can check us out at wbgu.org of course and watch us every Thursday night at 8:00 PM on WBGU PBS.

We will see you again next time.

Goodnight and good luck.

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