- (female announcer)   Production funding   for this program is made   possible in part by   the WKNO Production Fund,   the WKNO Endowment Fund   and by viewers   like you, thank you.

- We make plans   throughout our lives,   school, career, marriage,   family and retirement.

But most of us don't plan   for the end of our lives.

On this show, you'll find out   about the choices we all have   in the final chapter of life.

[gentle music]   Honoring Choices:   Advanced Directives and You   is made possible by grants from   Honoring Choices Tennessee,   Vanderbilt Center   for Quality Aging   and the Health Resources   and Services Administration.

- Hello, I'm Cris Hardaway.

No one likes to talk about death, certainly not their own.

And that's born out by the statistics.

Nintey percent of people think it's important to talk about their loved one's wishes for end of life care, but less than 30% have actually had the conversation.

On this program, we're going to talk about preparing for the end of life and the document that can speak for you if you can't.

But first we need to start the conversation, and there's no one better to talk to about that, then Ellen Goodman, Pulitzer Prize-winning columnist and author, and Co-Founder of the Conversation Project.

Ellen, what is the conversation and why is it important?

- Well, it probably is first a conversation inside your own head, but very often it's easiest to come to some thoughtfulness by talking to someone else.

And it is a conversation.

It's not a checklist [chuckles].

It's not, what do you want?

It's not even a conversation necessarily between you and your doctor, but very often it should be a conversation between you and the people who may have to make decisions for you if you can't make decisions for yourself.

So, we talked about it as a conversation because we all need to talk about what matters to us, what's important to us, as we may approach the end of our lives.

The most important thing that you need as you think about what matters to you at the end of your life, is to make sure that you have someone who can make decisions for you if you can't make them for yourself.

That is critical.

It's more critical than even talking to your doctor.

You need to have a healthcare provider, and you need to have it all through your lifespan.

It's not just something that you need when you're very sick.

- On your website, The Conversation Project, you have some statistics.

And one that stuck out to me was the fact that 92% of Americans say that it's important as you've said to discuss their wishes for end of life care but only 32% have actually had the conversation.

Why are we so reluctant to have that conversation?

- Well, first of all, that's an improvement [laughs].

Believe it or not [chuckles].

When we first started doing our work it was 90% of people thought it was important to have these conversations and only 27% had them.

So, that's a small percentage increase but it represents about 12 million people who have had this and previously didn't.

And we haven't even yet measured the effect of the virus.

We measured the effect of what has happened to this whole country and to everyone over the course of the year.

So, I suspect that there have been a lot more conversations and it's hard for a very simple reason.

It's hard talking about death.

You know, it's hard talking about loss.

It's not a surprise.

And for a long time, it was extremely hard.

A good starting point for middle-aged children say who wanna have this conversation is to say, mom, dad, I need your help.

This immediately puts the parent in the parent role.

They say, yeah, I need your help.

I may come to a time when I have to make decisions for you.

And I need to know what it is that you would want, 'cause we know when people do not have these conversations, there are much higher levels of guilt and depression and unhappiness.

And the last thing you wanna do is leave your kids, leave your children in that state of uncertainty about whether they did the right thing.

[gentle music] - Americans are aging.

Less than 10 years from now one of every five Americans will be of retirement age.

We make plans for our retirement, but too many of us don't plan for our final chapter of life.

Serious accidents or devastating illnesses can change our life plans at any age, which makes advanced directive forms so important.

And yet, so few people have filled one out.

- Well, an advanced directive is you communicating for your family, your wishes should be you be unable to explain them or express them because of some incapacity, either dementia or an injury or medical illness that keeps you from saying that.

An advanced directive is several things.

First of all, it is a communication with your family.

It should be written, that's what the law asks for.

There's an advanced care plan, there is a physician's order for scope of treatment.

Some of these things used to be called living wills but the important part is talking with your family about this.

That's what really matters is that they know what you want and they have a chance to discuss it.

- The other key part of an advanced directive is naming an agent or a proxy or a surrogate or a POA.

All these are different terms for the same concept, which is if I can't speak for myself, I wanna designate another person to be my voice, to carry out my wishes, to speak for me where I can't do it.

- Now is the right time to fill out an advanced directive form because it's always the right time to fill out an advanced directive form.

You and I could get hit by a meteor sitting here talking about this right now, these things can happen, we are just not aware of, or you know, we can't predict it.

And a lot of us have this magical thinking that well, it's never gonna happen to me.

And you know, the people who live to be 120 in this world, are the people who don't get sick.

And the rest of us there seems to be this hard stop because look, for modern medicine's a wonderful thing.

You've got a clog in your heart, we can put a balloon in it.

You got pneumonia, we can do high-powered antibiotics.

Our ability to add days to people's lives is limited though.

There's no question about that.

If that weren't true, that somehow, if we just knew enough within any one case that we could kinda get over that hump.

If that weren't true, there'd be at least two or three four hundred year old people running around.

And the fact that there aren't, tells us that there is the hard stop.

And if I have a choice of leaving this world suffering or leaving this world, not suffering, or leaving this world without my wishes being honored, I'll take leaving this world not suffering with my wishes honored every time.

- I've known cases, both from my pastoral role as well as being there bedside with people at the hospital where these things have not been decided, but they're trying to verbalize them or trying to talk about them at that critical time.

And quite often that's the time when no one wants to listen because it sounds like the person may be giving up or it sounds like the person may not have the will to continue in life, when actually they may go on living, but they're trying to say something that's important that they have been thinking about, but may not have executed.

And then of course you see those times when something does happen, maybe a person is not able to come back and take care of themselves.

And so now, their wishes are left in the hands of a person who may be disconnected altogether.

They may be a loved one, a close relative, but not know exactly how that person wanted to have their care executed in life.

[gentle music] - Advanced directive forms are simple questionnaires that require thoughtful answers.

Some are just one page long.

But where can you get the form?

Does one form work for all states?

Do you need a lawyer?

And does the form have to be notarized?

Here are some answers.

- I think people would be surprised at how simple and straightforward it is.

It doesn't have a lot of medical language, it's in plain language.

And one of the very first questions it ask you, is who do you want to speak for you?

We call that a healthcare agent.

And so, that's one of the first questions.

But they didn't ask very simple and basic questions like what kind of quality of life do you think is okay?

What kind of interventions or treatments do you want?

What are kind of your specific wishes related to organ donation, related to burial plans?

There are things that most everyone has thought about but they probably haven't taken the time to put on paper.

- How do you get the form in the state of Tennessee?

- The form is on our website.

You can just go to a Tennessee Department of Health which is tn.gov/health and search for advanced directive, it's right there, simple two-page form.

You can download it and fill it out immediately.

- In 2004, Tennessee passed the Healthcare Decisions Act, give me a little details of what the Act did.

- Sure, so here in Tennessee, we like to pride ourselves sort of on practical wisdom and practical approaches.

And that's what this Act did.

It's simplified the form, it's just two pages, and it's in plain language.

You don't have to be a doctor or a lawyer to figure it out.

Likewise, you don't need a lawyer or a notary public to notarize it, to make it official.

All you have to do is go on the website, print it out, fill it out and give it to a family member or a friend or even your healthcare provider, and that's it.

It really simplified the process and made it a lot more accessible to all Tennesseans.

- So, the Tennessee Living Will is a beautiful document.

And if you take that to a state that for whatever reason has some technical glitch, that doesn't allow it to be a legal document, it almost doesn't matter because the patient's wishes are still there, the healthcare providers can still interpret it and can still follow it as long as all the family is the decision-makers are okay with it.

So, I don't worry too much about that because if I get a living will from say Hawaii, I don't know if their's and Tennessee's are compatible but from some other state, I would still walk work through that to make sure that the patient's wishes are met with, and not just go, oh this is an illegal living will and throw it away.

[gentle music] - Real life is a learning experience for all of us.

Fifty-five years ago, Johnny Ray Thompson married his wife, Linda   after dating her   for just six months.

Both of them fell in   love at first sight.

They had two children   and then at age 39,   Johnny experienced extreme   shortness of breath   caused by a blockage in   four of his arteries.

Over the years, he underwent   two bypass surgeries   and lived with   chronic heart disease   and an aneurysm   in his stomach.

He died in January of   2021 from a heart attack.

Just a year before, at the height of the COVID pandemic, Johnny and Linda had a conversation about the final chapter of their lives.

[gentle music] - A lot of people have, they find it kinda hard to find a blessing during the COVID, but, you know I can truthfully say, I found a blessing during COVID because he and I talked about things that we'd never talked about.

We discussed, like one night we were talking, he said, "Linda, you know, at our age, one of us are gonna be leaving."

And he says, "It could be me or you."

And I said, "You're right."

And you know, we talked about things like death that we had never really sat down and discussed, you know.

- I sat with him at the table and we just started having a conversation about what thier wishes would be if something were to happen.

Dad had at this point had two bypass heart surgeries.

We knew that he had an aneurysm in his stomach that the doctors were watching closely, and we were concerned about, you know, what we would do if something were to happen.

And my mom had battled cancer twice.

So, we sat down and we talked as a family and my dad, he was a man who believed in letting people know how he felt.

He was very passionate about things that he believed in, and he would tell you about them.

And so, his wishes, making his wishes known, was very important to him because he loved my mom.

He loved his family.

And he didn't want us to be left trying to figure it out.

And we talked about it that day and he was so comfortable in saying, "When it comes my time to go, I wanna go peaceful, "let me go peaceful.

"I don't wanna suffer.

"I don't wanna be hooked up to machines.

I've lived a nice long life."

And he said, "When it comes my time, I just wanna go to be with the Lord."

He was just at total peace with that.

And mom as well, they both agreed on about that.

They agreed that it was so important because mom and dad both said, you know, "What we don't want is for something to happen "and you and your brother be stressed out, "we're trying to figure out what's the next step.

"So, if we can make this decision for you, "if we can write this down, "and we can have it ready for you, "then you'll know this is our wish.

"And you will never have the burden or the worry, "that you've made the wrong decision, because I've already made it for you."

I was so proud to pull that document out when EMS showed up because I knew, as much as I wanted my daddy back, and there's a part of me that wanted to fight to get my daddy back, that's not what he wanted.

And that was one of the ways that I feel like walking away from this, that I honored my dad at the time when he needed me the most.

[gentle music] - You've seen how important an advanced directive can be.

But how can you make sure your choices will be honored?

What do you do with the form after you filled it out?

And can employers play a role in boosting the number of people who have completed an advanced directive?

- Regardless of the number or percent of people who filled it out, very few of them put them in a place where it does 'em any good.

It's like of the third to a half that do that, about a third of those will give it to their doctor.

The problem now is if I give my form to my family doctor, as I have done, he doesn't come to the hospital anymore.

So, they would have to go to the trouble of calling him and saying, "Hey "did Greg Phelps happen to leave a advanced directive in your office?"

So, I recommend to patients that they get, make a copy give it to the hospital they go to, their family doctor, keep one with them.

The Patient Self-Determination Act of about 30 years ago requires the hospital to ask if you have an advanced directive, when you come in and offer you the opportunity to do one.

It's very helpful to come in with one and they'll scan it into your record.

- Giving it to a lawyer or putting it in a shoe box under the bed, doesn't really help in the event of a crisis.

And so, what we recommend anyone do, is go to MyDirectives.com, click the link to upload your document.

If you have one on paper, we'll digitize it.

We'll store it in our globally secure database and we can identify it so that doctors and emergency medical records, nurses, paramedics, anywhere in the world in the event of a crisis, if they have you, as a patient in front of them and you can't speak, they can go out into the cloud, search our database and find it.

And then we hope, respect your wishes.

- Employers, their employees are their most important assets.

So, they wanna provide them with good overall benefits.

You know, whether it's health insurance, dental insurance, life policies.

Having an advanced directive, it completes the circle really for services and knowledge that you're gonna give to your employees about options that they have.

So, for employers, it makes a lot of sense to them to be able to provide information about advanced directives.

- What better time is there than to offer this, as you offer benefits, as you offer so many other enrollment processes, why not offer this as well, where you have people to at least think about it become familiar with it and really see how easy it is.

Oftentimes if something were to happen, you would have to go back to the employer and access the benefits and find out what type of benefits were there to cover the individual.

At that time, you can also learn that this person had an advanced directive, and here are some of the things that they would like to have carried out.

And so, by offering it in the enrollment process, I believe it would be a great first step to getting all people to think about it, and then have it included in their life paper work.

- National Patient Advocate Foundation has created a campaign called "Be a Hero, Make a Plan" that gives people some of the worksheets they need to start thinking about what matters to them.

And then you can look to wonderful tools that are available, such as Prepare for your Care that has the forms for preparing an advanced directive.

If employers help steer their colleagues to those sorts of resources and many others that exist, to help people walk down this path, that's so important, it does help normalize it.

In a very appropriate, timely and annual way, which is important.

Just like any other paperwork you're planning, you know circumstances of your life change.

You wanna revisit that advanced directive and everything that proceeds it based on your life circumstances as you continue along life's path.

Employers play a pivotal role.

And I couldn't underscore it more.

[gentle music] - We live in a digital age.

Most of us couldn't stand to be parted from our smartphones for even a day.

But can this technology raise the awareness of advanced directives?

Is there an app for that?

- We know that electronic record makes it easier to retrieve documents.

There now some apps which will allow you to upload your advanced directives to the cloud.

And so, you tell any provider the information and they can just download it right at the time that it's needed or perhaps even to the medical record.

- In the future, I see, a lot more, what we call interoperability or connectivity between different medical records.

So, if you were to go to a hospital or medical center on the other end of the state, they could have that same record.

That would be a huge benefit.

And then like most things we're starting to store a lot more of our personal information on our smartphones.

And so, it's completely feasible in the near future.

It may already exist in some states and some areas that you have an app that you just show them a QR code, or they can download it from and you have it right there at your fingertips.

- We have a mobile app.

We also have a website.

MyDirectives.com is the website free to consumers.

MyDirectives Mobile is the Apple mobile app free to consumers.

Any Android User is perfectly welcomed on any Android device to go to MyDirectives.com and the site reconfigures for Android.

We worked with Apple many years ago for some special features that allow Apple users to get links to their advanced care plan in front of the lock screen on your telephone.

So, a paramedic in effect to pick up your phone at a car accident, see that you have an advanced care plan at My Directives.

Actually your phone could show that I've named you, Cris, as one of my medical record or medical proxies my health care agents, and the paramedic could push the button to dial you on a locked phone.

And the paramedic you would answer the phone saying, "Hey Jeff," because you see it's a known number in your contacts.

And the paramedic would say, "No, I'm sorry, Cris.

"My name is Bob, I'm the paramedic, "Jeff just had a car accident.

"You're listed on his phone as one of his healthcare agents, "could you meet us at Vanderbilt Medical Center so that we could give him better care?"

[gentle music] - You can start making your advanced care plans by downloading the form and utilizing the resources on these websites.

[gentle music] - I think that the last comment I would make is, this is so important because this is a gift you give your family of what your wishes are, because nothing brings out the fun in dysfunctional like the family at the end of life in conflict, trying to decide what dad would want or what mom would want.

- So, many people get the advanced directive confused with a legal document or something that's huge, that is costly, it's not.

It is just simply an expression of your desires, an expression of your choices in life that you would like to see carried out as best as possible by those people around you.

You get to somewhat say the who and the when the where and the how, and it doesn't cost anything to do that, and to have a quality of life that you can enjoy.

- You know, I think the most important reason to take action today is really to show love and care for those around you.

Our society is getting older, and unfortunately we're not necessarily getting healthier.

This pandemic has shown us that illness and tragedy can strike at any time.

And so, take that extra step today.

Go ahead and be ready.

Have that difficult conversation because a little work now will pay off in the long run.

[gentle music]   - Honoring Choices:   Advanced Directives and You   is made possible by grants from   Honoring Choices Tennessee,   Vanderbilt Center   for Quality Aging,   and the Health Resources   and Services Administration.

[gentle music] [acoustic guitar chords]