- I'm Marge Marie and I'm director of palliative care and
geriatrics at UW Health.
We are extremely lucky to have Franny Van Nevel pinch-hitting
for us on our Advanced Care Planning talk.
Franny works with the patient relations department at UW
hospitals.
So she is the person now you now to call if you have hopefully
very positive experiences, but any other kind of experiences
with the hospital she will help you work it out.
She also is a trained facilitator.
She trains people in the Honoring Choices, conversations
that she's going to talk about today.
And she has a graduate certificate in bioethics from
Loyola University, which probably uniquely prepares her
for a lot of the conversations you will be having.
So it is my great pleasure to welcome Franny Van Nevel to
the program.
- Hi, thank you.
It's very, very nice to be here.
We are going to talk about Advanced Care Planning this
afternoon and, if you don't have one, how important it is to have
meaningful conversations with family members, friends or
whomever you choose to be your healthcare agent.
What is Advanced Care Planning?
Advanced care planning is essentially having someone to
speak for you to represent your goals and values and your wishes
about end of life care if you become incapacitated in any way
and unable to speak for yourself.
The reason why it's important to have an Advanced Care Planning
document, we will get to this in great detail.
And we will also talk about where how to begin this
conversation, which would culminate in you completing the
health care document.
It's very important to understand the process of the
Advanced Care Planning and the Honoring Choices does a
beautiful job with this.
Honoring Choices is a program that Wisconsin has adopted from
Gunderson Lutheran in La Crosse where they have a very vital and
active community involved in having Advanced Care Planning
documents.
People spend less time in the intensive care units.
They have a better quality of life and sometimes live longer
in hospice.
Families feel better after a loved one dies.
And it's just a way to really control how your life ends when
we've all spent a lot of time trying to control how we live
our lives.
So it's a very important thing to think about.
The process also involves reflecting on your goals and
values, which may change over time.
I know when I was 30 and I felt still pretty immortal, that I
would have done anything to keep living.
But as you age and have things happen to you, or are in the
hospital or have an illness, sometimes what you think if
quality of life changes.
How you feel about going gently into that great night, there are
many things that change as you progress through life.
So we're going to talk about those reflections and we're
going to discuss future medical decisions, how you make them,
what information you need.
And that will include end of life preferences.
So as I said before in my own words, it is a document by which
a person makes provision for healthcare decisions in the
event that in the future he or she becomes unable to make those
decisions.
One thing that you need to learn about advanced directives if you
don't already know this is a lot of people are very confused
about the power that it gives their agent.
People will call patient relations and they say, "I'm
so-and-so's power of attorney.
Tell me what's in their medical records."
I say, "Well, is the power of attorney activated?"
"No. My husband or wife is fine.
I just want to know what's going on."
That's not how it works.
It's only if you are unable to make your own decisions.
If you lose capacity, maybe temporarily or maybe
permanently, that healthcare power of attorney can be
activated and then inactivated depending on circumstances.
But if you do want someone to speak for you or to speak to the
care team, we have something called verbal authorization for
communication.
So if you have a loved one that doesn't mind you talking to the
doctors about their care, ask at the clinic to get a form.
And it's also on our website UWHealth.org.
And you can get that authorization and get it signed
and get it in the patient's medical record.
And then you can talk to the caretakers.
There are a couple different types of Wisconsin Advanced
Directives.
One is a living will.
It's a declaration to physicians.
So you might write a list of things that you would like at
the end of your life and give it to your doctor to put in your
medical record.
Or use it as a basis for a conversation with your primary
care doctor.
Which is all well and good, but it doesn't appoint someone to
speak for you.
It doesn't include having a legal agent to represent your
wishes.
Which the healthcare power of attorney does give you.
Who can create a living will document or declaration to
physicians?
Any competent adult 18 and over can express their healthcare
wishes regarding life-sustaining procedures, feeding tubes, et
cetera.
Again, as I said, the living will does not designate an
agent.
Which as we progress in this conversation you're going to see
is pretty important.
So the power of attorney for healthcare document is a form
where people in Wisconsin authorize individuals to make
healthcare decisions for them if they become incapacitated.
How many of you have either a living will or an advanced?
Well, I'm speaking to the choir.
Have you had conversations recently about them?
Okay. Is your healthcare agent fully aware of your wishes?
Well I guess we'll have to go out and spread the word after
this talk.
So the power of attorney for healthcare must meet certain
requirements to be valid in Wisconsin.
It must be made voluntarily by the adult 18 years of age or
older who is of sound mind.
It must be signed and dated by the principle in the presence of
two witnesses.
At the hospital, if you have this done at the hospital or a
clinic, only social workers, chaplains and volunteers can
serve as witnesses.
Members of your care team and staff have a conflict of
interest for us to be involved in that.
- What counts as a volunteer?
- She asked the question of what are volunteers.
At UW Hospital we have volunteer services where people in the
community want to volunteer at the hospital.
And they go through a rigorous training including PIPA, privacy
requirements.
And they help escort patients to appointments, help work at
certain desks.
They're just volunteers at the hospital.
- I meant who could properly witness by two people?
Only social workers, chaplains and volunteers.
Can you pick anybody as a volunteer?
- No. I'm sorry, I said if you get this witness at a hospital
or clinic, only those people can serve as a witness.
If you get it witnessed here or with your friends, anyone who is
not a family member or named as the agent can be the witness.
- Thank you.
- You bet.
And the interesting thing about the healthcare power
of attorney is also in the hospital someone may not have
enough capacity to make a very critical decision about the
risks and benefits of an operation.
But they may indeed have enough capacity to decide who they want
to speak for them.
So even if you're waxing and waning in your capacity, you can
be evaluated by staff if you don't have an advanced
directive.
If they feel you have enough capacity to say, "I want Joe to
be my healthcare power of attorney," you can still have
that.
So why is the healthcare power of attorney so important?
Because you need someone to speak for you.
When you are in a hospital and lose your capacity to speak, no
one is there who knows who you are.
Oftentimes when you're in a hospital, and I know if you've
been there you've probably felt like this, you feel like a
presence in the bed that is one diagnosis after the other.
They don't see the you who has been around your whole life, who
has raised a family or had tremendous intellectual
capabilities or had a great career.
They see a sick person.
And they may not know how you feel about what is quality of
life for you, how you feel about quantity versus quality, how you
feel about feeding tubes.
I think when you're in a hospital, the push is often
toward care, not away from care, depending on where you are in
your illness.
So it is very important to have someone who can speak for you.
I've got some pretty important news to break to you this
afternoon.
The world death rate is holding steady at 100 percent.
So this is from the Onion and it's just a funny little thing.
It says that, "World Health Organization officials expressed
disappointment on Monday at the group's finding that despite the
enormous efforts of doctors, rescue workers and other medical
professionals worldwide, the global death rate remains at 100
percent."
So as they always used to say, we're not getting out of here
alive.
And I know being a baby boomer myself and seeing the magazines
and articles where people are pursuing youth with running with
bone-on-bone hips and bone-on-bone knees and Botox and
plastic surgery.
A lot of people don't want to face the fact that they're going
to die.
And they don't want to think about it, or their kids don't
want to hear about it.
"Oh, Mom, let's not talk about you dying.
I can't stand the thought of being here without you.
But I wouldn't mind your money."
So you really have to think about having someone ready to
speak for you.
So why is it important?
The care you receive may not reflect your wishes.
You may have someone in your family, if you don't have an
agent, they will defer to your family to make decisions, unless
they're about going to a nursing home for non-rehabilitative
care.
And then we would have to get a guardian.
But do your friends or do your family members who you would
want to know about you, do they really know how you feel about
what would make you feel good at the end of life?
And what are your experiences seeing people die from maybe an
aneurysm or a heart attack or a car accident?
When you have seen family members fight at the bedside or
seen the grief that it causes after someone dies, people
wondering if they made the right decision.
And so these conversations not only allow you to get the death
that you want, it allows you family members to survive.
Healthy survival.
And if your healthcare providers don't know your treatment
preferences, it's very hard for them to make decisions on what
to do next.
Speaking of healthy survivorship, I want to just
tell you two quick little stories.
When my mom died in 1996, she had been doctoring in Minnesota
and she had oral cancer.
And the doctor was a vigorous proponent of surgery no matter
what quality of life you ended up with.
No jaw, feeding tube, whatever, he didn't care.
He wanted you to have surgery.
My mom said, "No, I don't think so."
And he said, "Well, you're going to die a horrible death.
You're going to bleed out and you're going to be sorry and
it's going to be too late to do this surgery."
So we were in the room with her.
I'm from a family of nine and we were like, "Oh my god, this
doctor is so awful."
So we left and we went home and we called hospice and hospice
came and told us all the wonderful things that they could
do.
My mother ended up having what I consider to be a really nice
death.
My sisters, even though they knew what mom wanted, she hadn't
had any in-depth conversations with anyone.
And she was pretty sick when she had the conversation.
So they felt really guilty after she died about whether the
hospice nurses gave her too much morphine and we caused her to
die.
And so I called one of the coordinators and they said,
"Your mother's disease ended her life."
I was able to share that with my sisters and they were able to
accept that we didn't kill our mother.
We helped her by getting hospice involved, by getting her pain
treated.
She was allowed to have a death that matched what she wanted
when she refused surgery.
And I also have dealt with the Honoring Choices conversations
where you meet with the patient first and then you bring their
healthcare agent in to have a conversation about it.
And I have witnessed some profoundly beautiful
conversations between husbands and wives, friends, sisters and
brothers.
Really discussing things that they've gone through in their
lives and what they've experienced being ill themselves
and what they want to do.
And they talk about--
One of the first conversations I had, someone died within three
days.
They had an event that left them incapacitated and the family
said afterwards that conversation made all the
difference in the world for how they felt after their parent
died.
They were able to provide things at the bedside that were
expressed as preferences.
And it lifts this extremely heavy burden off of your family
members if they know what you want and can represent you at
the bedside.
So your family won't be left wondering if they made the right
decision.
So some facts.
60 percent of people say that making sure their family is not
burdened by tough decisions is extremely important to them.
However, 56 percent have not communicated their end of life
wishes.
Again, people don't want to talk about dying and the kids don't
want to hear about their parents dying.
So these conversations, sometimes it's a brave first
step.
But the conversations can be slow and careful and a little
bit at a time, or you can dive right in and do it the way you
want it.
And I've coached my kids very, very well on how I want to die.
I always say to my son Ted, "What about it?"
And he goes, "I know, Mom: pull the plug."
But it's just whatever you want.
If you want to try everything, your kids need to know it.
If you don't want to try much, your kids need to know it.
They become a partner.
Your agent becomes a partner in your healthcare team.
And you will allow them the right to make decisions based on
where you are in your care, what is best for your and what
represents your wishes.
Okay, the next fact is very sad.
70 percent of people say they prefer to die at home.
70 percent die in the hospital, a nursing home or a long-term
care facility.
The bulk of Medicare money goes to the last several months of
life.
This is money that people generally, as you can see, they
would rather die at home.
But they get sick, they go in through the emergency room and
the care takes off.
And if there's not an advanced directive, the kids might be
fighting.
There's often a kid from the east coast or west coast that
flies in.
We call them the rescue rangers.
They want to say that the people who have been caring for mom or
dad every day don't really understand mom or dad.
And they need to make their own peace with it or try to exert
themselves into the situation.
So a healthcare power of attorney and the agent can help
that.
And I have in my conversations with many people, I hear parents
talking together about their kids.
And they usually go, "Well it's not going to be Susie, I can
tell you that.
Because she can't handle any decision.
And it's not going to be Mike because he's so emotional.
He cries at everything.
I think Lori can do it.
She's tough and she can do it."
And I say, "You know what, that sounds like a really good
choice, but you need to tell Mike and Susie that Lori is
going to be the boss of this."
And that's a conversation you need to have.
Lori is not the only one that needs to know.
The other kids need to know that.
You might want Lori to talk to them, share medical information
with them, get their input.
But in the end Lori is going to be the decision maker.
And that is a critical part of this conversation.
Not only does the healthcare agent understand, but other
people in the family understand so there's not a lot of drama at
the bedside.
80 percent of people say if they were seriously ill they would
want to talk to their doctor about end of life.
70 percent report having had that conversation.
Now I'm sure you remember the death panel conversation several
years ago with Sarah Palin and some other people.
The only thing that was about was getting Medicare to
reimburse doctors for having a conversation about the
importance of end of life planning.
And this is coming back on the table now, where hopefully
doctors will get reimbursed for this.
But these conversations when you're seeing X number of
patients a day and you don't get any reimbursement for them, they
are not often a priority.
At UW hospital where we had our pilot, the doctors would say,
"Would you like to learn more about end of life conversations?
Or have you had the talk?"
And if the patient expressed interest, then we would set up
the appointment to have the conversation.
First the patient conversation may be in person or over the
phone, then with the patient and the healthcare agent to ask
probing questions to get them to discuss what their wishes were
all about.
75 percent of physicians whose patients had an advanced
directive were not aware it existed.
I have a little trouble with this statistic.
This isn't my PowerPoint.
But this is clearly in the medical record under the consent
legal tab in Epic.
And it is checked before surgeries, before different
things that progress.
Maybe at the annual physical they say, "Do you have an
advanced directive?"
So I think maybe the years have changed this statistic because
it is part of the conversation, at least asking if you have one.
But when people come into get an advanced directive or to get
more information we still do the old regular Wisconsin form as
well as the Honoring Choices more in-depth form.
But they'll come in and say, "I'm having surgery on Monday,"
or "Mom's going to have surgery tomorrow.
Can we do this?"
And then we'll do it without much conversation and I'll try
to ask some of the questions that we would if we could in a
full Honoring Choices conversation.
But at the end I always say to the family members with them,
"Do you have an advanced directive?"
"Well I never thought about it.
It's only the person who goes under the scalpel who needs it."
But if you have followed the news over the last 30 or 40
years, the worst cases of right to die and right to live have
been with people in their 20's and early 30's.
So everyone needs an advanced directive.
No matter what, anybody over 18 needs an advanced directive.
So the process starts with you reflecting on what your goals
and values are, what's important to you, what experiences you've
had in healthcare.
I remember when my mother-in-law years ago got diagnosed
initially with cancer, she was very committed to chemotherapy.
Very committed to living.
She got through chemotherapy which is no joy and had a
recurrence of cancer.
So we talked to her again, "How do you feel now?"
"You know what, I'm not doing that again."
So how you feel at the start of an illness, in the middle of an
illness and at the end of an illness can be very different.
So this conversation needs to be fluid.
It needs to be constantly revisited and discussed.
This is not a static document or conversation.
I'm sorry, I missed that.
Look back.
Again, what have I experienced?
What have I seen?
How have I seen my family members or my friends?
What were the circumstances of their illness and the decisions
that they made about the end of life?
Did they carry on living at a horrible expense, mental,
spiritual and financial?
Or was it a quick death?
Or did they go to hospice?
Think about the experiences that you know about and kind of touch
on how that resonates or doesn't resonate with you.
So we're in the here and now.
You've reflected, you've looked back.
Now you think, "It's time for me to make some decisions on how I
want the end of my life to look like."
If you're ill, as I said, sometimes when we really have a
terrible flu you think, "I don't care if I die tomorrow."
Imagine if you are truly so ill and at the end of your life and
your family is fighting over your bed to keep you alive and
they want you intubated and in intensive care and have a
feeding tube and it's nothing that you would ever want.
This conversation is important.
So as illnesses progress, you might get totally better and
totally be committed to what you initial values and goals were.
Or you may change.
That's totally personal and it's totally individual.
But it's something that should be looked at and honored.
How to begin.
Choose a decision maker.
Doesn't that kind of look like Bernie Sanders?
I don't know how we got him for this picture.
So you choose this one.
Speak for me.
It's choosing the person who can be trusted, is willing to accept
this responsibility.
And it is a responsibility.
You will be in the hospital speaking to doctors and nurses
and other care team members.
Sometimes it's really hard to say, "Enough," or, "I don't want
this test," or "He did not want antibiotics."
You have to pick someone strong enough to represent your voice.
And if you're sick yourself-- I mean I just had a minor
procedure done and it was like you're so vulnerable when you're
a patient.
It's so hard to speak up for yourself.
When you're really sick it's even harder.
So you have to pick an agent who can be strong for you, who is
capable.
And it doesn't mean they're a loud, brash person.
It means that they are committed to representing your values.
Another important thing is that they're very willing to follow
your wishes even if they don't agree with them.
So let's say you have someone in your family who has a polar
opposite view of yours, either for cultural, social or
religious reasons.
They think totally different from you.
But you still respect them enough to want them to be your
agent.
You have to say, "I know you don't agree with this, but could
you do it?"
And even if it's a child who doesn't have vastly different
values from yours, but they don't want you to die, can you
do it?
We're going to die someday.
And if this is part of my life where I'm going to die and I
will never by myself again, I'll never know who you are, I'll
never get back to baseline, I'll never recognize the friends that
I knew, what do you want?
They need to be able to speak for you?
And the person has to be able to manage conflict and make
decisions in difficult situations.
This is with other family members, with friends and with
the care team.
Can they have those tough conversations and say, "This is
how it needs to be," and why?
So the conversation with your agent, and this is what we fully
explore in Honoring Choices conversations, is what does it
mean for you to live well?
Some people say, "You know what, I really need my mind.
If I am physically hampered, I could live with that.
But if my mind goes, that is the very most important thing to me.
And being able to enjoy intellectual conversations,
books, whatever, is important to me."
Other people say, "You know what, if you can put my body in
front of a Green Bay Packers game and give me a bowl of ice
cream once a week, I'd be happy."
And I've heard that.
But this is your life.
This is what it means for you to live well and this is what you
need to decide.
When would you feel that your life was not worth living?
If you couldn't do the things that gave you pleasure,
physically or mentally, what would your line in the sand be?
When would you want physicians to stop treatments that keep you
alive?
And a lot of people when we have these Honoring Choices
conversations have very strong feelings about being able to let
go, but being very comfortable at the end of their life.
So how would you describe a peaceful death?
So when we have these conversations a lot of people
say, "You know what?
I love classical music and I would like this concerto, this
composer and this symphony played."
Other people want polka music.
Other people have very fierce feelings about being clean.
And I just did a healthcare power of attorney where the
woman wanted to make sure someone came in and plucked her
chin hairs.
That was a big deal in her mind about how she would feel in the
bed if she couldn't represent herself.
Some people want aroma therapy.
Some people want massages.
Some people want people to read prayers over them.
All of these things are very personal, but when you think
about it, I think I would have to always have my feet
uncovered.
If I thought I were dying and a couldn't speak and I couldn't
get my feet out of those covers, that would drive me crazy.
I don't know how much I would know at that time.
But it's those little and big things that are part of the
conversation.
And what you choose to write down is up to you.
There's also a part in this about things that you would want
to let your family and friends know.
Some people go, "Everybody already knows plenty about me."
But other people say, "I want them to know that I lived a life
that I loved.
I had a family that I loved.
I had a job that I loved and I'm at a place in my life where it's
fine for me to go."
And hopefully the family members, everybody who's an
agent, gets a copy of this.
That at the end of someone's life that that could be shared
with people who want to know about it.
So to the healthcare agents, if you're ever asked to serve as
one, you should think about this as an act of love.
These conversations are very profound.
I have to tell you.
And I feel humbled and honored when I sit in a room with people
talking about how they feel about the end of their lives.
I was in the room holding my mother's hand when she died and
it too was a profound experience and a transference of energy up
my arm that lasted for days.
And it is, as I said, it's a profound experience.
The conversation is profound.
The responsibility is profound.
But it is so worth it.
To be able to help people that you love get through an illness
and prepare to die in a way that honors them is a wonderful
thing.
So how to begin, you have to explore your goals for medical
care.
And this is, would you want a feeding tube?
Would you want CPR?
I don't have the statistics with me, but I don't know if you know
this, but CPR is nothing like it is.
- 6 percent.
- 6 percent survival rate, baseline survival rate.
People generally are way worse off, broken ribs, bruises.
It doesn't work like it does on TV, especially the older you
get.
So those kinds of conversations you will have about the end of
life, whether you want a feeding tube, whether you're willing to
go to a nursing home.
A lot of people are also confused about do not
resuscitate.
And we used to joke.
I wasn't in healthcare at the time.
But every time my mom went in for surgery we thought it would
be a blessing if she died on the table.
So we used to joke about writing DNR on her forehead in magic
marker.
And I learned later when I got into healthcare that your DNR is
suspended when you go into the operating room.
Unless you get a surgeon to agree ahead of time to operate
on you and let you die on the operating table, they will do
everything they can to save you.
And the DNR has to be rewritten after surgery, reactivated.
So make sure you talk to your primary care doctor about that
if you want or have a DNR bracelet, outpatient bracelet,
or when you get to the hospital.
There's also something called the Conversation Project which
is a beautiful program.
It's not about completing the document.
It's about having the conversations.
And if you have a computer, it's theconversastionproject.org.
There's a 10-page conversation starter kit that you can
download or read online that gives you questions to ask that
you can start having this conversation with anyone
formally going through the Honoring Choices program.
But I went and visited this website today.
It's really beautiful.
They also have a number of vignettes, stories of people who
have had the conversations.
I'm going to kind of speed up a little because I want to leave
room for questions.
Did I skip that part?
After you have had all the conversations, filling out the
form is just the icing on the cake.
You've followed the recipe, you've had all the ingredients,
you've baked it, you've thought about it, it's come out.
And you can throw a little icing or powdered sugar on it.
It's super important to do this.
But it is the culmination of all your conversations.
So the document, then you give copies to your agent and to your
secondary agent.
This is another very important thing: you do not have
co-agents.
If you have agent number one and agent number two, they don't
both get to be agents at the same time.
And a lot of people think they get to both do it.
The first agent is the agent unless they cannot or choose not
to serve as your agent.
Then it would go to number two.
Or if they pre-decease you.
If that person can't do it, if there is a number three it would
go to number three.
So if you have one, two or three people on your advanced
directive, they each need to get a copy of it.
And number two and number three need to have a conversation with
you.
They don't have to be present for the primary person's
conversation.
But they need to know that they're on the list
and what your expectations are.
You need to talk to the rest of your family and your close
friends, tell them who your agent is and what your wishes
are.
Keep a copy.
We always give the original back to the patient.
Don't file it at your lawyer's office.
Don't hide it somewhere.
A lot of people have a folder or something that they tell their
kids or friends about, that if something happens, look in the
first drawer of my desk or something.
But be sure that is handy.
If it's not handy and if we have it, we can always make you a
copy from the hospital or clinic.
And then take a copy with you after it's completed.
And if you complete it at the hospital or clinic we
automatically send it to our medical records department so
it's scanned in, your document.
So you need to review this, as we talked about.
This is kind of a fluid document.
It's a process.
It's not a one-time event.
Wishes may change.
And you can review your wishes with your physicians or whoever
you want talk about this.
But if you have just gotten out of the hospital or have been
diagnosed with a disease that makes you rethink about what you
want at the end of your life, once you've had the big
conversations, changing the document you just have to fill
it out again and resign it.
The other one is voided and the new one goes in.
So when should you review this?
Whenever the five D's occur: decade, every 10 years, death of
a loved one, especially if they were your healthcare agent.
Divorce, when you get divorced if your spouse was your
healthcare power of attorney, that goes away when the divorce
is final.
As I said, when you get a new diagnosis.
Or when you go into a decline, when your condition worsens.
Do any of you have any experiences that you'd like to
share or questions?
If any of you had to be a power of attorney for someone,
anything that you'd like to talk about I'd love to hear about.
[applause]
Thank you.