Going Your Way

- Do you have any fears or concerns about having this conversation?

- I do not.

- [Narrator] And why not talk about it and plan for it?

Because for all of us, death is normal, natural, and inevitable, and there are no do-overs.

And when it comes to planning for the end, there are those who are choosing to be.

- Pragmatic, bingo.

- Meeting monthly to discuss all topics related to death, dying, and grief.

- [Narrator] And yet there are a lot of people, a lot of families, and, yes, even a lot of doctors, who find this to be a difficult thing to talk about.

- Many of us, when we were in medical school, had very little or no training on how to have that conversation.

- They were probably afraid to bring it up to me and so I was afraid to bring it up to them.

- What would you like done with your body after you die?

- [Narrator] The steps to take to start the talk so that quality of life means ending with a good death by considering the options, making the wishes clear in today's medical system about the kind of care you want and don't want.

- I can tell you as a surgeon, rarely is there nothing more we can do.

- Why is it important for older people to fill these out?

Because they're gonna die.

Why is it important for you to fill these out?

Because you're gonna die.

- [Ira] So with good end of life planning, who wins?

Everyone.

(gentle music) (upbeat music) - Hey, hey, hey.

Hey, look.

You ain't gotta tell me.

- Okay, cool.

All right, I'll see y'all when y'all get here.

Okay, we'll probably already just kind of start, but just come on in.

You know, ain't no big deal.

All right, baby, we in the backyard.

Bye-bye.

- Why would he do that?

Got it.

- Anyway, so everybody know we coming together tonight because we already shared with you all a lot of things that we want to do to take care of our business.

- [Narrator] Vivial Lopez is hosting a death and dying themed barbecue, of all things.

Her interest in end of life planning was peaked by a flyer she saw one day in the library.

She went to a workshop and then was trained to lead the workshops.

But this is personal, a gathering of her own family, from grandparents to grandchildren.

- As a family, we have experienced several family members dying and having to be taken off of life support.

And it was a very challenging time for the family because not everybody agreed on when was the right time.

- [Narrator] She didn't want her family to go through that again.

So this first of two sessions focused on what kinds of treatments each of them would want or not want.

(group laughs) - But that's weird though.

You know what I'm saying?

And it's some stuff.

- [Narrator] The second session would focus on putting those wishes on paper.

But it all began with an often very lively discussion about death.

- What would you like done with your body after you die?

Do you wanna be embalmed?

- Cremation!

- Cremation!

- Same thing (indistinct).

- They were actually pretty cool with it.

They were like, "Okay, let's do it."

- Guess what, even if they bring me back, I might be a vegetable.

I might not be the same.

That's about quality of life.

That cost me more money that I ain't got.

- Good point.

Yeah, this that's true.

- And that works both ways too.

Like the survivors don't want to let go.

Sometimes the person that's passing away don't want that person to be hurt.

- I think we all wanna be able to honor one another and we all have such a close bond that that was something that everybody was like, "Yes, let's do this and let's be very intentional about honoring that person's wishes."

Do you want the doctor to focus on maximizing the length of your life, the quality of your life, or other?

- Quality.

- Other!

- I want both.

What you mean?

Extend it and quality.

Heal me and extend my life.

That's your job.

If I had to choose, it would be- - Quality.

- Yeah, quality for sure.

- Quality.

- It don't matter if I got three months, but if the three months I live the best of my life, we gang, gang.

- We outside.

- And I was gonna say, for me it's quality too, because I don't wanna be on life support for six months just because I'm alive and I'm being, but I have no way to interact and I'm not really fully living life and enjoying.

I take quality over quantity any day.

(bright gentle music) - I put this title on my slide today, Getting Prepared, and I realized I should probably ask you, do you know what we're preparing you for?

(audience laughs) And I hope that you know it's death 'cause if .

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.

- [Narrator] This program is put on by Oasis, the organization founded in St. Louis to provide programs to enrich the lives of older adults.

It's entitled The Magnificent Theater of Life.

- Yes, ma'am?

- I have a question.

- Yes.

- Before we go any further, what prompted this?

- Oh, good question.

What prompted this series?

It's a little bit of the need, seeing the need in the community.

I mean, people have been dying forever, but there are gonna be a lot more people dying and they haven't been dying in the ways that we felt good about.

- [Narrator] The presenters are all familiar with death and dying.

Dr. Brian Carpenter is a Washington University professor of psychological and brain sciences.

- As a clinical psychologist, I'm, you know, trying to help people in whatever way I can.

And it felt like there were unmet mental health needs for people at the end of their life in addition to these fascinating, intellectual questions.

- The one thing I do know about most of my colleagues in medicine is that they know that they're always right.

- [Narrator] Dr. Ira Kodner is a retired colorectal surgeon and leader in the field of medical ethics.

- The most enjoyable part of my own career has been doing something new or something that no one else wanted to do.

- [Narrator] And Dr. Patrick White, Washington University Med School's head of palliative medicine, which in an age of specialization, focuses on the big picture of comfort and wellbeing.

- How many of you have seen the black doctor's bag in your lifetime?

Oh, I see some head nodding already.

Wow.

This is my grandfather.

- [Narrator] Dr. White is a third generation physician.

His grandfather came from the era of house calls.

His father specialized in respiratory care with patients who often could not come to him.

- And so some of my earliest memories are like six or seven years old, going on those home visits, and just seeing the impact he had, even when he couldn't cure the patient, helping to take away their cough or helping them to breathe a little easier.

And now the average patient sees 10 different providers in the last six months of life.

They might be so focused on the heart or the kidneys or the lungs that we're missing the big picture and having that discussion.

The way those providers with the black bag would take the time to look at everything.

And we need to have that ownership.

- [Ira] Do you want resuscitation?

Do you want aggressive treatment?

- [Narrator] In three two-hour sessions, they cover a wide range of end of life issues, medical options, advance directives or living wills, religious and spiritual matters, and especially, how to prepare to discuss these issues, not just with doctors, but with family members.

- So that's another place where we need to educate people.

We need to teach them about how they should be having these conversations.

They don't even know how to start it.

There is a movement around the world called the Death Cafe.

They happen in almost every city around the world.

And they invite you to show up once a month for an hour to talk about death.

That's it.

(soft upbeat music) - Oh my goodness.

Look who it is!

For the past seven years here in St. Louis, we've been meeting monthly to discuss all topics related to death, dying, and grief.

People can come from, you know, any number of professions, experiences.

We've got older folks, younger folks, middle aged folks.

- I'm fascinated by the way our culture and other cultures think about death.

- And how they're more open than people in our country.

We're very closed about that.

We mustn't talk about it, it's, you know, prepare for it.

And I think that's irrational.

- I found the whole idea of Death Cafe and talking about death and all that after I lost my husband and I was trying to find a way of coping with that.

- And the real concept here is that taking the taboo out of discussing death, out of planning for death, and really trying to embrace that it can be really life affirming to take into consideration that we will all die.

Everyone who we love will die and that our lives can be a lot more meaningful in the here and now if we take that into consideration with every choice we make in our day-to-day lives.

- And I've had a couple of personal losses.

I mean, well, cancer survivor, so I have got in touch with my own mortality there.

And then I also, I teach English, so I also have kind of a pop culture interest.

I've done a paper before on something called comic book deaths, where characters are killed off and then brought back alive.

- And at this point, I will say, and I hope I don't hurt anyone's feelings, cremated ashes are overrated.

I said, you know, when I die, just bury me under a lilac bush.

Then (indistinct) said, "Well, yeah, if the laws wills let it."

- We definitely, we run the gamut.

It's definitely a lot of characters.

People who are comfortable talking about death are typically people who are unique in that they're comfortable in discussing discomfort.

- You know, many of us, when we were in medical school, had very little or no training on how to have that conversation and we're scared of how the family might react to us sharing bad news.

You know, I just had a real tragedy this week where a patient that I was involved with, healthy guy in his 30s, out jogging, had a cardiac arrest and ended up in the intensive care unit.

And by the time they'd started CPR, he'd suffered major brain damage.

And the family was just telling me how confusing it can be 'cause the cardiologist is saying their heart is great, and the liver doctor's saying their liver functions are getting better.

And the neurologist is saying, "Well, they may get some recovery."

And it took pulling everybody together to say, "What does recovery actually mean?"

So I think sometimes the palliative care doctor can bring together all of those different specialties and say, "What's the big picture and what matters to this patient?"

(soft upbeat music) - Well, there's five of us total.

Matt, me, and we have two boys, George and Peter.

George is five and Peter is, will be three next week.

And June would be eight years old.

- [Narrator] June was Genny and Matt Jessee's first child and they immediately knew something was wrong.

She was having seizures brought on by a complex neurological disorder.

- And then little by little, we learned different things that were wrong with her, she had kidney disease and failure to thrive.

She wasn't eating properly.

And then, am I missing anything?

- We didn't know how devastating all this was.

- [Narrator] It's one thing to deal with your own health problems or perhaps with an aging parent, but not this.

And yet, the Jessees were facing the same kinds of issues.

Chronic illness, treatment options, quality of life.

They were overwhelmed.

- So she saw the ENT, the eye doctor, then she saw the neurologist, the nephrologist, and then the GI doctor.

So there's five specialists?

- At least.

- At least.

- You know, when you have a specialist doctor, their job is to fix whatever is their specialty wrong with you and everything else gets put secondary.

- [Narrator] Things changed for them when June's case was assigned to a palliative care doctor, something the Jessees wished they had asked for earlier, if they had known what it was.

- I remember having to google palliative care and being like, "Oh," after she left.

- You know, when the palliative care doctor was willing to, you know, recommend things that weren't gonna cure June, but make her more comfortable.

It made a lot of sense for us.

- [Narrator] Palliative care can be in addition to ongoing treatments for any serious illness.

But if a cure is not possible, it can transition into end of life care.

And at one point, June stopped wanting to eat and her parents struggled and stressed over keeping her nourished.

- And I do remember feeling like, "Just eat!"

- [Narrator] It was the palliative care doctor who explained to them what was happening.

- Til palliative care, I didn't know that loss of appetite was one of the first signs of your body shutting down.

- [Narrator] Palliative care doctors are trained to focus on the patient and the family to explain things in understandable terms and to have sometimes difficult conversations.

- And I used to be afraid to ask if she was dying.

Like I remember, 'cause I thought that the doctors would think I wanted her to die.

Once I met the palliative care doctor, I could ask her those things and not feel judged or, and the doctors, they were probably afraid to bring it up to me, and so I was afraid to bring it up to them.

And you know, it's just.

- [Narrator] June died just short of her fourth birthday.

Her parents had done the best they could, even sending her to preschool.

The palliative care doctor said it would be good for June and for Matt and Genny, a lesson in quality of life that could be applied to patients of any age.

- Yeah, she had her own little personality.

We adapted to our lives around her and she liked it.

(Genny laughs) - Yeah, she was.

Yeah, she was so sweet and she did laugh and giggle and smile.

- As soon as we knew that the goal was no longer to find some magical drug out there to fix June, we should have been thinking, how do we, which even before that, should have been thinking, how do we keep her as comfortable as possible?

- What I've said over and over again, palliative care is the soul of healthcare.

- [Narrator] The Reverend William Johnson is chaplain at Christian Hospital in St. Louis County.

He deals with patients and families seeking comfort and guidance, but he is also part of the hospital's palliative care team.

- And bringing the physicians together, so now what are we looking at and what can we share with this family that makes sense?

It gives them a big picture so that we can present that and how can we be of help to the family, now knowing what's happening.

That's a great asset.

- However, yesterday, she was probably the most alert that she's ever been.

Able to follow commands and whatnot.

So in this case, her option would be to see if she's a candidate for- - Right.

- Liver transplant.

- This is now moving in a place where palliative care can now provide for people the extra layer of support that they need when the fabric of their life is just falling apart.

One of the main things that palliative care does is it offers this big thing, which healthcare is notoriously bad at, communication.

- And you can tell that there's still a great deal of ambivalence in our culture about this by the words that we use.

You've heard people say when somebody has died that they passed on, they've gone to a better place.

We don't say that.

(audience laughs) Right?

'Cause it feels too harsh, feels too strident.

A lot of people will tell you, "Oh, yeah, talking about the end of life is very important," but how many have actually done it?

- I'm concerned, one of the major themes that's come up in Death Cafes over the past six years has been people wanting their wishes to be honored at end of life and doing everything possible to make sure that our wishes are honored.

And a lot of that does have to do with knowing what steps we have to take in the process and legal steps and, you know, what do we have to do on paper and who do we have to tell?

- Yeah, we had, you know, we've got our plans together, we've prepaid, and all of our arrangements are done.

The hard part is, you know, just making sure that we're telling everybody that needs to be involved in the event that we were to go together.

- I was in the hospital with a heart problem and one of the hospital staff came in and asked me a question that I was completely unprepared for.

And it was, "How much effort do you want us to put into reviving you?"

And it's like, "What?

And I have to make that decision now at the spur of the moment?"

- [Narrator] There was a time when hospitals did not ask patients such questions.

Today they are routine and required.

It was a family tragedy in Missouri that made all of this a federal case.

(gentle music) In January of 1983, a 25-year-old woman left work in Carthage in southwest Missouri and was driving home.

Her car left the road.

She was thrown in the crash and lay face down for 15 minutes before an ambulance arrived to take her to the hospital.

- So my aunt was Nancy Cruzan, and Nan was fun and she was the sunshine.

So Nan had her accident in January of 1983.

I turned seven in March of 1983 and my seventh birthday was at Brady Rehab.

And they were still thinking that, you know, she would come around and having the stimulation of family and all of that around her would be good for her and maybe help her come out of whatever this state that she was in.

- [Narrator] The family agreed to have a feeding inserted to see how she would do, but she never regained consciousness and doctors declared her brain dead.

A persistent vegetative state.

Her parents finally decided it was time to let her go.

- When mom and grandma and grandpa sat us down and said, "We want to try to have Nan's feeding tube removed.

And you understand that means that she'll die, but we know she wouldn't wanna live this way."

- [Narrator] But they needed a court order to remove the feeding tube.

A Jasper County judge approved the removal, but the State of Missouri appealed, and the State Supreme Court ruled against the Cruzans, erring, it said, on the side of life.

The Cruzans took the case to the US Supreme Court and it was now closely followed by the national media and many weighed in on the legal, medical, ethical, and religious issues.

But the heart of the matter was who could decide the fate of a woman who could not speak for herself?

Missouri Attorney General William Webster argued for the State of Missouri, - There's a difference between what you can do when you're competent and what sorts of statements are going to be required when you are incompetent.

- [Narrator] Kansas City Attorney William Colby represented the family.

- The point I was making about the practical effect is if you allow parents to make the decision to start medical treatment, but then take away from them the power to stop it once they start it.

- And I think that's a very, very unfair position for families to have to be put in.

Let's do everything we can do while there's hope and then when hope runs out, then stop it.

- There was one unwavering truth within our family, and that is the center of everything was what Nan would have wanted.

- [Reporter] Nancy Cruzan's parents were in seclusion today after the Supreme Court ruled they could not remove the feeding tube that has kept their daughter alive for more than seven years.

- [Narrator] In a five to four ruling, the court recognized a patient's right to refuse treatment, but said the Cruzan's did not present clear and convincing evidence of what Nancy would have wanted, something a living will, now called an advance directive, might have provided.

The Cruzan's didn't give up.

They found others to testify that they had also had end of life conversations with Nancy that backed up the family's claims.

It was the additional evidence needed for a judge to allow the removal of the feeding tube.

Protestors came to the rehab center to oppose or even prevent the removal, but they did not reach the room where the family had Nancy's feeding tube removed and waited until she was declared legally dead after nearly eight years in a vegetative state.

Three dates are on her gravestone.

The date of her birth, the day of the accident, listed as the date she departed, and when her heart and breathing stopped, eight years later, the date she was at peace.

And engraved at the top.

- It was, "Thank you."

And then a flat line.

It really captured what we knew, as a family, Nan was saying.

- [Narrator] The case had raised issues that many felt needed to be addressed.

In Washington, a new law passed sponsored by Missouri Republican John Danforth and Massachusetts Democrat Daniel Patrick Moynihan, the Patient Self-Determination Act.

- If you go to a hospital now, the automatic question, and it's required by law, is, do you have an advance directive?

It doesn't say you must have an advance directive.

It simply raises the issue.

- Knowing that every single time somebody walks in the door, they're asked if they have an advance directive?

It's huge and I have no doubt that my aunt made a contribution and my grandpa and grandma and my mom and their commitment to their family member.

I do think, by now, our culture has shifted and our perspective on end of life has changed and evolved over time.

We've gotten more comfortable with this end of life conversation, and thank God.

- These advance directives are forms and there are lots of different varieties.

They vary from state to state.

There are some that are accepted across states where people can document their wishes for the kinds of medical care they would want or not want if they were ever unable to speak for themselves.

So that's the first piece of these forms.

The second piece is that on the form, you're given the opportunity to identify a surrogate or a proxy who can speak for you if you're ever in a situation where you can't speak for yourself.

That person can help guide the medical care that you receive at the end of your life.

So filling out those forms is designed to establish what your preferences and values are.

(gentle acoustic music) - Oh good.

I am excited to be here.

I know Laura's excited to be here.

And the goal today is to complete your advance directive and Mike's advance directive and we'll have some conversation and then we'll get .

.

.

- My health situation is that I have lung cancer.

The doctor says that, you know, it's terminal cancer.

- [Narrator] Longtime partners, Mike Elliff and Whaley Winborne, are each filling out the five wishes document, just one version of an advance directive.

- Wish number one.

- They're filling out the forms with the help of Joan Bretthauer and Laura Matson of the Gateway End of Life Coalition, which works with the public and the medical community to promote quality end of life care.

- Do you have any fears or concerns about having this conversation or this type of planning?

Nope?

- No.

- [Joan] Okay.

Whaley, how about you?

- No.

- No?

- I certainly don't live as if I'm not going to continue living for some time, but however, but you know, I know what the circumstances are and that certainly influenced our decision about filling out the five wishes.

- So what do you hope an advance directive document, which is what you're completing today, will do for you in the future?

- Give me some type of assurance that, you know, when the time is drawing near that the wishes that I've made are what's gonna be carried out.

Only under a situation where I'm incapable of making those decisions myself?

- That is correct.

Yes, sir.

Are you his healthcare agent?

- I am.

Yeah.

- [Narrator] These documents cannot cover or predict every possible medical situation.

Doctors can adapt the wishes as needed with the advance directive witnessed and notarized, designating the person who can help make those decisions when you cannot.

- These three questions have to do with either, whether you have severe brain damage or whether you're in a coma or whether you're close to death.

Do you want life support?

If you do not want life support, then you mark one of them.

If you do want life support for a certain length of time, then you mark the other one.

- It's a great path.

It's just a great guideline.

You know, when everything's so, you know, when everything's changing so rapidly, yeah, we have something to refer to.

Yeah, yeah.

We still get to fuss and fight and argue and yeah.

(Whaley laughs) - Okay.

Witness statement.

I, the witness, this is you, Laura, declare that the person who signed or acknowledged this form.

- [Narrator] Advance directives have their limitations and their critics.

Too often, they are not shared with or explained to family members or doctors and can be difficult to find when needed and sometimes don't follow patients from doctor to doctor.

While they have been around a while, they are still, for both individuals and the healthcare system, a work in progress.

- Okay.

- 10 months after filling out his advance directive, Whaley was in hospice and passed away at home at the age of 64, with his final wishes clearly spelled out for his medical team and for Mike.

But Chaplain Johnson has seen what can happen when family members have to make life and death decisions without such guidance, disagreements about what should or should not be done can tear families apart.

- And so it's important to say and have that conversation with ourselves and with our loved ones and to choose a surrogate decision maker so you don't have divisions within a family.

I've seen conflicts, I've seen fights, I've seen violent engagements.

- She has three daughters and all of them feel totally different about how to manage her care.

- Oh boy.

- So one daughter has already pulled me aside and said she feels like she's bullied by her other two siblings.

Right, so I think Chaplain Johnson will do because I think- - I can reach out as a chaplain, just say, "Hey, I'm thinking about you."

- Absolutely - Because something happens.

- But if you have these conversations early, you kind of, you know, say, this is what I want, this is where I want go, this is what's important to me.

Usually the family, the temperature, decreases.

- [Narrator] While the use of advance directives is increasing, studies have noted that white people are significantly more likely to fill them out than Black people.

- And what you discover is that for minority communities, African American communities in particular, have a distrust about the motivation for advance directives.

Feeling like are those who are asking us about this really intentional about loving us enough or caring for us enough to save our lives?

- So that's one.

Come on.

Okay.

Come on, come on.

- So is that pertaining to something like, if I'm like .

.

.

- It's always a fear of what is the motive?

Is there something else behind this?

I think, probably, I would say about 90% of Black folks that I have talked to, they were not even aware of an advance directive.

That's part of what I wanna do is take it to the Black communities, because I think that's an area where they just don't have the information.

What about this and what about that?

Make sure you're having these conversations in depth with your healthcare proxy because they .

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.

This is like a two-way gift, the way that I look at it.

One, it's the gift of the person who's completing their advance directive.

They're giving that gift to their family so that they don't have to make those decisions when it's a very stressful time.

And then on the other end, for the folks who are still gonna be living, it's a way for them to give a gift, like a last gift, to their family member, their dying family member, by honoring their wishes, whatever it is.

- How frequently do you have to update this?

- So that's a good question.

Kyle said, "How frequently do you have to update it?"

- Every new relationship.

- Every new relationship.

(group laughs) - Hey, I heard that, - Hey, that could be true.

- When you decide who's going to speak for you, you must decide, watch the words now, you want someone who will decide as you would decide, not someone who will do what they think is best for you.

You probably don't want to choose your most loving child because they would never say it's okay to let you die.

On the other hand, you don't want to choose the one that really doesn't like you.

(audience laughs) And the way it's voiced most clearly is if time becomes short for you, what's most important?

No one says, "You know, what I really want, my vision of death is to be in an intensive care unit with the lights on and the monitors making noise and my family excluded from seeing me and having all these lines in my arm.

That's it.

That's how I wanna die."

No one says that.

(bright music) - [Kimberly] Every morning is a different day because you don't know how your patients have done the night before.

- [Narrator] Kimberly Roderique makes house calls, but not to cure people.

She is a hospice nurse with BJC Healthcare, part of a team that helps patients through the final days, weeks, or even months of their lives.

- There are those mornings, like, you know there's some heavy stuff ahead of you and you're like, "I don't know if I can do this."

But then I get up and my morning actually starts by going for a walk and make a quick breakfast, pack a lunch, probably like most people do, except trying to set my mind in the right frame.

I also have a, what I call, a happy morning playlist.

And as soon as my scripture's done, my happy morning playlist goes on.

I have six on my schedule for today.

That is a busy day.

As hard as this work is, there's a lot of hard moments, there are some really, really, really sweet, just natural moments and that helps me get out of bed.

(bright music) Hey, good morning.

- Good morning.

- Happy Tuesday.

- Happy Tuesday.

- Not watching "Matlock" this morning?

(patient speaks indistinctly) Yeah.

- [Narrator] Her first visit this day was to Mary Nelson and her husband David.

Mary has esophageal cancer and has been undergoing extensive treatments with multiple stays in the hospital.

- She was resuscitated twice, was on a ventilator in the ICU, had a stomach tube placed.

She didn't like that too much.

She pulled it out four times.

And then unfortunately, it's not a curable cancer and her heart had gone through so much stress having a surgery and being really aggressive would've really probably caused her more harm than good.

Yep, yep.

That'll do it to you.

And so her and David talked and made the decision.

- So it was a decision that, you know, I had to make, it was either this or she's at home or she's in a nursing facility, and I went, there's no way I'm putting her in a nursing facility.

She's my wife, she's gonna be at home in her home, and I'm gonna take care of her.

Some things out there for them.

- Oh, that's nice.

Not everybody is cut out for hospice, just like not everybody's cut out to be an ER nurse or work at a long-term care facility because you do realize when you go in there that everybody, that you're gonna say goodbye to these people.

- [Narrator] She has had to say goodbye to too many in her own family, losing one son at birth.

Another son, Noah, was born with a rare condition and although he survived much longer than expected, his development was severely limited.

- So he was on and off hospice until he died when he was 15.

And it was a year after he died, well, it was probably within that year, my heart really just started to turn toward what we experienced through those years of hospice and how much they helped us then and how much they were helping us through our grieving process and just what an impact they made on our family.

And I was working a different type of nursing at that time.

I was, I used to refer to that as my high heels and lipstick era, instead of scrubs at the bedside, and I was just really missing patient care too.

And so my heart just really turned toward hospice.

There's many different ways I approach what hospice is.

The biggest frame I tell them is that you have a team of people who come into your home to help you through your journey.

- You guys will have Epic up.

- Correct.

- So we will be projecting the Teams meeting.

All right guys, let's go ahead and get started.

Kim, you're up.

- Mr. A, he is a 57-year-old male, diagnosis with arterial sporadic heart disease, diabetes two, CAD with multiple .

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.

They help manage your symptoms.

Maybe you're having pain, maybe you're having nausea.

Or maybe your family has some turmoil and your family needs a little bit more support.

We have social workers who will help with that support.

- There's not, the wife does not have a lot, a real strong support system.

- He has a sister who's been coming up to visit now and she's been there almost all the time, but she's actually had to go home, which she didn't wanna go home.

Like could that be an eye or does she have to be a resident of Missouri?

- [Hospice Worker] That would be something they could do.

- Or maybe you're having some spiritual turmoil that you have the hospice chaplain that'll help with that.

- You have home health aides that come in and help bathe people and help teach the family how to do that.

And then you have the nurse, who's putting this all together for you.

No shortness of breath, no non-verbal signs of pain noticed.

Their goal is for a peaceful death in the home and the spouse .

.

.

Since January 17th, you've been with me.

So you beat that record of days to weeks, didn't you?

She's gotten stronger.

She gets to make her own decisions, what she wants to eat and drink.

No more stomach tube.

Learning how to manage that.

And we're just working toward trying to get her as much strength back as she can.

- I have no complaints at all.

I enjoy .

.

.

- Of course, the end result of hospice is the patient usually dies, you know, so, it kind of gets you ready for that, little signs you look for.

Toward the end, they might start eating less, they might get agitated.

So they provide medications, you know, to keep her agitation down, keep her pain level down.

- Have my bag on it.

All right dear.

I'll see you on Thursday, okay?

- See you on Thursday.

- All right.

All right, I'll see you, David.

Call me if you need anything.

You have a good day.

- Thank you.

You too.

- [Narrator] On a morning, 10 days later, Mary Nelson died peacefully with David by her side.

- We pause to honor and remember these patients entrusted to our care.

We gave our best to provide comfort and love in their final days.

We remember their stories and their families and we offer our wishes of healing and hope for all those who feel their loss.

(soft music) - All right, cool.

- All right, thank you.

Well, that's it for today guys.

Everybody be safe out there.

Thank you for what you do and it's great.

- Thanks.

- [Narrator] Much of hospice care is covered by Medicare and private insurance, and it's a booming and increasingly profit-driven business with a lot of providers offering in-home and inpatient care with varying levels of quality, services, and satisfaction.

There is now a government website called Hospice Compare.

- Where family members can search area hospices to see other families' experiences and see how they do on a number of quality metrics.

So you can compare now the hospices in your area to be a more savvy consumer.

- So we are, you know, I think one of the themes over the last few weeks has been, we're kind of approaching this problem from both directions.

We're trying to teach providers and empower providers to be more sensitive, but we also wanna empower you.

We wanna empower the patients and the consumers to go out there and to try to meet those providers halfway.

- I was just thinking that this kind of program would be very beneficial not only to people in our age range, but to much younger people.

Our kids.

(Brian laughs) - You're so right about that.

You're so right.

You're not gonna believe this, but I actually do something like this with college freshmen.

(bright upbeat music) Okay, change number three is that the place at which people die is different.

This is what a typical deathbed scene looked like decades ago.

People were home, surrounded by people that they cared about, in an environment, in a place that was familiar to them and comfortable to them.

Fast forward to where we are now.

Where do most people die these days?

It looks like this.

It looks like this.

Very different place, very different setting, very different experience.

The name of the class is When I'm 64.

18 year olds think that 64 is old.

We should probably rename it as When I'm 100 or When I'm 110.

First time in a long time, in a long time, that we experienced a drop in life expectancy.

Mostly pandemic related, but not exclusively pandemic related.

But like many of the other topics that we've been talking about throughout the semester, we think this is one that's important for you to just, just dip your toes into, to think a little bit about what death means in your life, because there are things that you can do now .

.

.

We've had great experience with this activity in class where we send students' parents or other people that they're close to a questionnaire.

It's most often people's parents, students' parents, ask them about some of their end of life care preferences.

And then we ask the students to guess how their mother or their father or their grandparent or their brother or their sister answered those questions.

All right, I'm gonna start showing you some data from your surveys, and remember .

.

.

And invariably, there are points of agreement and points of disagreement.

But there's probably 75 to 80% of the answers that are wrong.

- [Narrator] Family members were asked what they wanted done with their bodies after they died.

And more said that they favored cremation over burial.

- [Brian] And here's your guess.

- [Narrator] But the students who might someday have to make those arrangements had it the other way around.

- Whoa, we gotta pick up the cremation apparently, 'cause there's more interest in cremation out there than you are apparently aware of.

So that's the eyeopener for the students and the parents is that they don't know each other as well as they think they do and they can have a conversation about it.

One of the final survey questions I'm gonna show you was how willing are you to talk about these issues?

- [Narrator] 86% of the students' family members said they were very willing.

The student predictions weren't even close.

- And I just wanna point out, there's one discrepancy because the people in your life, they wanna talk about this with you.

They might not be sure how, they might be sure how to do it in a way that's not gonna get you upset, but they wanna do it, maybe even more than you think they do.

In this particular lecture, in this section of the class, where we're talking about the end of life, I have similar goals as the ones that we do in the Oasis class.

It's to show people that you can have a conversation about death and it's not gonna be scary, it's not gonna be depressing, it's not gonna be sad.

And there are steps that you can take to be better prepared for yourself and for the people around you who are, may be themselves older and approaching the end of their natural lifespan.

There are other ways that you do already have control over the circumstances of your death.

And that's by filling out some important legal documents that enable you to tell your doctors what you would want if you couldn't speak for yourself.

If, for example, you were in a car accident and you were unconscious and you were on life support.

If you have these documents filled out, it allows you to tell the doctors how you wanna be taken care of.

What medical treatments do you want?

Medical treatments would you not want?

That's when an advance directive is.

Why is it important for older people to fill these out?

Because they're gonna die.

Why is it important for you to fill these out?

Because you're gonna die.

(indistinct chatter) So there's a challenge, there's a challenge here, that we all have to face, right?

And that is to be better prepared for what we know is coming.

It's awkward to pause and think about death, but I bet if you ask people like Dr. White and Dr. Kodner, who work in this field, they would tell you that the people who have paused, the patients and the families who have stopped and to think about these issues and what is important to them, they go through this as best they can and they're less likely to feel conflict, anxiety, angst, it's not gonna be gone, 'cause death is hard no matter how well prepared you are, but I bet they would tell you that the people who have given it some consideration do it the best.

(bright music) - But you know, they tell you not to go online and there's a reason.

'Cause when you go online with my diagnosis, I had a 50% chance of living five years.

I'm not even to that 50% point yet.

And here I go, I've got only a few weeks at most.

- [Narrator] Karyn Kitley is in Evelyn's House, BJC Healthcare's inpatient hospice facility.

She had ovarian cancer that was spreading and creating serious complications.

She's here by choice and wouldn't live through the following week.

- It's very difficult.

You have so many people, we wouldn't have been able to fit 'em in this room, that were, you know, caring for me, which is awesome.

But at the same time, everyone is looking at one or two facets of it and there weren't enough people looking at the whole, the whole big picture.

So thankfully there were a couple on my doctor's team that we're looking after the whole big picture because even with this last chemotherapy, there was only a 50% chance of improvement to the bowel.

Well, what I came to find out was, 50% of improvement to the bowel did not mean 50% improvement on coming home, 50% improvement on seeing my grandchildren, 50% chance of any kind of movement towards normal life.

So that meant that our end goal was, okay, how are we gonna spend the last few weeks of this life, how do we wanna spend it?

One of the nurses told me, you know, "That doctor, he loves his patients, he doesn't wanna let 'em go."

Which is fine, except sometimes you have to let 'em go.

So I just feel very much at ease, very much at peace.

And so I can't say there was any one moment where I was like, ta-da, this is what I'm gonna do.

But the decisions that have been made and the journey that has brought me here so far has led me in this direction and I'm very happy to be at this point of being at peace and knowing that this is gonna be right for me for these last few weeks of my life.

So you'll be working, okay.

So this is coming whether you want it or not.

- That's right.

Yay.

- I think we try really hard here to give every patient a really good idea of what to expect with hospice and really focuses on patients living every moment of their life to the fullest instead of just fighting for time, which often happens in the hospitals or intensive care units.

(upbeat music) - So with good end of life planning, who wins?

Everyone.

Who wins the most?

Our patients and families.

- Probably why we're all sitting in this circle.

On one plane or another, we all have questions and where do I go for the answers?

And our culture doesn't, you know, there's not a corner store that says "Death R Us," where you can go in and get all your questions answered.

- But I think if you have knowledge and you kind of set your table, per se, I think that would help address the fear.

- And it wasn't a sad thing like we're telling you about it and I'm crying, my mom's gonna die, and oh, what's gonna happen?

No, it was very .

.

.

- Pragmatic?

- Not, what?

- Pragmatic, pragmatic.

Bingo.

- First of all, death is natural.

Dying is a part of life.

Grief is normal in all of its complicated states.

We should be honoring these things.

We should be giving space for people who are experiencing these things in our lives.

- What I've found is either the parents don't want to talk about it when the kids ask or when the parents ask the kids, the kids don't want to talk about their parents' death.

And if you're the person who wants to talk about it, you gotta push the issue.

- My advice always to people is just talk about it, but talk about death when you're feeling good.

- So the biggest worry, as you said, is their family.

How's my family gonna hold up after I'm gone?

That's what I'm worried about.

- There's no clear rule about who's gonna have a good death and who's gonna have a bad death based on how much preparation they've done.

But in general, we know that people who have conversations, who contemplate the end of their life, who talk with their family about what's important to them, who make arrangements and plans, they are more likely to have a good death experience.

And the people that they leave behind are less likely to feel regrets about how things played out.

- Because we know this is something that's really serious.

We know this is something that we're asking each other to uphold and honor.

So we wanna make sure that we really put some thought into this - Planning for the future with reasonable guidance and providing hope for the future, it's hard to say that that's the frontier, but it is.

- So I'm gonna leave it at that.

I wanna tell y'all that I love y'all and I appreciate y'all and I hope this was helpful and we gonna get this done.

We gonna get all our stuff in order.

So I love y'all.

Give y'all selves a round of applause for doing it, yes!

(group applauds) (indistinct chatter) (soft upbeat music) (soft upbeat music continues) (soft upbeat music continues) (soft upbeat music continues)