Hi, I'm Dr. Ryan Huey, assistant professor in
the department of GI Medical Oncology at MD Anderson
Cancer Center. And today I'm joined by my colleague,
Melanie Cavazos, senior social work counselor here at
MD Anderson. And this is the Cancerwise Podcast.
Melanie, thanks for joining me.
We're here to talk about a topic that can be really
daunting for patients and caregivers: advance care planning
for the end of life.
We've been working together for several years now and
trying to help people navigate this process.
And there's some common misconceptions about
advance care planning that we'd like to try to debunk today
and also share some tips about maybe how to
start these difficult conversations.
So, first let's talk about what advance care
plan is. How do you define it?
Yeah, so advance care planning is a big buzzword
now. The way I like to define it is that it's
an ongoing process of communication about
goals, values, wishes, in
terms of your health care decisions.
So, we want patients to talk about this so
that we can help care for them in a way that supports their
goals.
And that we want their families to talk about it as well
so that we can all be on the same page when we're providing
the best health care possible.
And that's what I would define advance care planning as.
Now, because it's an ongoing process, it's ongoing
communication tool, when,
as a medical oncologist, do you have these conversations
with patients?
Yeah, I think that there are several different times when
these conversations are needed.
Sometimes it's at these big, harrowing moments,
admittedly, like when somebody has a new diagnosis
of cancer or potentially when the cancer
has unfortunately gotten worse.
Sometimes it is when there's a hospitalization or a
complication of care and someone is just a lot
sicker than they were previously and it sort of serves as
one of these moments where it's like, "Oh, this
circumstance is really different." I think
related to that, it could be appropriate
whenever there is bad news of any kind.
But to be honest, you don't have to have a big moment in
order for these conversations to be appropriate.
In fact, a lot of this is just acknowledgement of
serious illness in general.
Just the reality of that situation is these conversations
are always appropriate, even if we're not in the middle of
a crisis or in the middle of bad news.
And perhaps that might even be the best time to have some
of these conversations.
Now that we've introduced the topic, let's dive a little
bit deeper. Do you mind giving a bit more about
what advance care planning is and maybe why it matters?
Yeah.
So, a lot of times, first thing people are going to think
about when you say "advance care planning" is advance
directive documents, right?
So, we're talking medical power of attorney,
living will, out-of-hospital do-not-resuscitate documents.
Those are kind of, if you're not in the health care
setting, that's what you're going to think of.
And those documents are incredibly important.
The conversation about what's in those documents,
in my opinion, is just as important,
maybe more important than the documents themselves.
The reason why it matters is it's
a way to give the patient a voice and
give them some control.
Having a serious illness like cancer, you lose control
in a lot of aspects, and this is a way to give
them back that control.
They get to decide what you want in
health care.
There may come a time when they can't communicate with
us anymore for a multitude of reasons.
They can't tell us what their wishes are anymore.
They can't tell their family what their wishes are.
And if they haven't had these conversations,
then we have to guess and their families have to get what
they would want in certain scenarios.
And so, it's really important so that everyone
knows and we can honor those values.
We can honor these goals when
someone can't talk with us about them anymore.
And you kind of bring up like, this has
more to do with the conversation than what's on
the paper. The paper is kind of a cold summary
of all of the nuances of the conversation, what somebody
really wants, right?
And so, you probably give the piece of paper
to somebody and they're like, "What do I do with this?"
All the time.
Yeah.
All the time. But it is a good way to start the
conversation of, you call me
in to come see somebody and talk to them about that.
One of the ways I can start that conversation is, "Have you
done your advance directive documents?" And that's kind of
a gateway for me to be able to have longer conversations
where we can talk about goals and
identifying what those goals are, what they
want in their health care, what
decisions they want to make in
certain scenarios.
And a lot of times patients will ask me, they'll, you know,
"What decisions are we talking about?" They can't even
grasp that concept in certain times.
I'm sure you get asked that question too, and so
when someone asks you that, you know, what decisions,
what are we talking about here?
Yeah, I think a lot of it goes back to
the notion that you just mentioned.
How do you want to speak for yourself if you're not able to
do so? And some of that gets into, who do you want to be
responsible for that voice, who is that voice,
especially in big families, where there could be complex
decision-makers. There are many times where that's a very
easy decision.
There are many times where that is a much more difficult
decision and getting family members in particular
can be, on the same page can be really challenging.
And so who's sort of in charge?
And again, if you were to get sick unexpectedly or
suddenly, what would the patient want done?
I tell people, I want you to be the boss.
That's the most important thing here.
And all of us are otherwise here to support you,
including your family.
And so, what types of medical interventions would
you want done or not done?
It becomes important for some people to talk about
if they want life support measures.
And want is maybe not the right word.
Nobody wants to be on life support, but
we have to talk about some of these hypothetical
conversations because sometimes there is
not an opportunity to just hit the pause button and say,
"I don't know if this is the best thing for me." We
like to think that we can be really thoughtful and
methodical about decision-making.
Listen, I like to make all decisions that way, but
sometimes things happen unexpectedly and sometimes things
happened really quickly.
And so, it becomes important to have some of those
hypothetical conversations.
And I think to that end, sometimes it's,
where do you, what do you want the end of your life to look
like? Where do you want to spend that time?
Do you want to be at home?
Is that a big priority to you?
Is it OK if you're in the hospital?
Is it OK if you're in an
ICU or on a breathing machine or unable to communicate?
And some patients say, "Listen, that's, if that's the
circumstance that I'm facing, that's not what I'm
interested in. And then we respect those wishes.
We're not here to pressure anyone into making any decision.
But then again, we just want to make sure that
we try not to say, "Oops."
Because we always want the patient to be in charge.
And as long as we're adhering to their wishes and
respecting that, that's what we're trying to do.
I think it comes down to the notion of, If time is
short, where do you want to spend it?
And perhaps more importantly, how do you want to spend it?
And who do you want to spend it with?
That's exactly right.
You know, I think that it goes without saying
that the environments at home or in the hospital
are very different, both in what the
day-to-day looks like and who's allowed in and all kinds of
things. And the hospital is very foreign to people and it
doesn't mean it's the wrong choice for everyone, certainly,
but there are reasons that patients
say, "Look, I don't want to be in the hospital at the end
of my life." These conversations can overwhelm
people.
You do a great job at helping guide patients through and
families through them. So, how do you suggest that they get
started?
Yeah. Well, and I think you know, you mentioned it's
so much easier to have these conversations sometimes
earlier on, you know, when we're not in a
crisis decision-making moment.
Maybe it's less emotionally distressful
for a patient or family if we can start this
earlier.
And I think, you know, it's one of the wonderful things
about working with your team is that I
get to come in earlier and start these conversations
instead of in that crisis moment
where everybody's highly distressed.
You know, I said before, one of the easiest ways to start
it is just asking about the advance directive documents.
That typically will lead to the conversation of, "No,
you haven't done them? OK, well, let's talk about it.
Who do you want to make medical decisions for you?"
Sometimes, like you said, easy answer.
They know exactly who it is.
Other times, families are difficult.
And so, that conversation tends to be a little more
involved. But we want to make sure that
whoever they choose and whoever they want to makes those
decisions is also involved in the conversation.
Because it's great if someone says, "Oh, I want my sister
to be my medical power of attorney." Fantastic.
Have you talked to your sister?
Does your sister know that you want her to make these
decisions? And does she know what decisions to make?
And a lot of times you get a look of, "Well, no,
why would I tell her these things?" So, it's important to
bring kind of everybody together.
We want the patient, we want their loved one, we want the
doctor, the social worker, the nurse, the APP.
We want everybody involved because we're all part of
the team. It's not, the patient's in charge, and we are all
there to support them.
And so, once you can kind of bring those together, then you
want to start off with, you know, "What makes your
life worth living? And
what kind of trade-offs are you willing to make when
it comes to your treatment?" Because reality
is: we may have to make some trade-offs.
And so, getting people to start thinking about,
you know, is it most important for you to be
able to get up and do all of your activities of
daily living every day without any assistance?
Is it most for you to be be able make all of
your decisions? Maybe you have one
event or a couple of events that you really, really
want to attend.
And so, our goal is to get you to those events.
And starting that conversation of,
what are we here for?
Why are you here? What are we doing this for?
What's your reason? And that opens up into a lot
of conversation about what kind of goals they have
for their health care.
And you mentioned it earlier, there is no right or wrong
answer, right? This is a very individualized
conversation and care plan.
And so, it has to come from
the patient.
And I'm sure you've been in, a part of conversations where
maybe there's some conflict between what a
patient is saying that they want versus what their loved
one is wanting for them.
And those, you know, those conversations can be tricky.
Sometimes a lot of people can feel really stuck in
those moments of how do we move forward
from here? What do we do?
How do you handle those conversations?
What do you tell those patients and those families when
they're feeling really discouraged by
having these conversations?
Yeah, you bring up the really good point of sometimes
people aren't on the same page and understandably so.
I think different people can grieve
a serious illness and
a cancer diagnosis very differently.
I think one thing that we see is.
It's great to have a big network of
support.
Right.
There's no doubt about it.
But, I think the larger a network is, the more complicated
the dynamics can be.
Sometimes it's often more complicated
by geography as well.
So, the people who are maybe local to a
patient are doing the caregiving on a day in and day
out basis.
And it's possible that someone else in the family
lives further away or even if they don't live
that much farther away, they're just less in the loop as to
what's going on on the day-to-day.
I think for patients, or the
kind of, caregivers, this can come off as a notion of like,
"You just don't know how sick she is." Or,
"You don't understand all of the things that we've been
through." And I think the caregiver can have this
sort of shared experience of that.
But families oftentimes aren't on the same page.
There's this term that I
did not make up called "daughter from California syndrome,"
where a daughter comes in who's not been part
of the day-to-day medical decision-making and
is really upset at some of the decisions that the patient
and/or other family members have made.
Say they have acknowledged and come to terms with
a patient is maybe closer to death and has
made decisions to stop treatment or a variety of other
things. Someone can come in, in this case, a daughter from
California, or I think in California, they call it from New
York, and say, "Hey, hey what's going
on? Like, why have you guys made all these decisions?
You know, dad's not dying, why are you saying that he is or
why are we stopping treatment right now?
He's doing fine.
Right, and I think to the
people that are the direct caregivers, the primary
caregivers, it can be
very frustrating to talk to somebody
who it feels like they just haven't been there the whole
time or something like that. This can create a tremendous
amount of conflict in families and we see this frequently.
And I think it's all the more reason to not only
have conversations with families, but to try to write
something down because then you have it as a
reference. And I think you brought up earlier that
it's great to include as many of these people in the
conversations as possible so that they can remember why
this piece of paper exists in the first place.
Yeah. But pick one, one decision maker.
Because I think we see that too, where big families,
"Oh, all of my children can decide.
They all get along great." Well, they may all get a
long great on a normal Tuesday, but do they
all get alone great when mom or dad is
severely ill and we're having really difficult
conversations?
Do they understand where we're at?
Or is this daughter from California going to come in and
change everything because we don't have a
designated decision-maker.
And this is not as simple as, well, there's five kids,
well, three of them vote one way and two of them vote the
other, that's just not how this works.
And so, it's really important to try
to get people on the same page as much as possible, because
you're right, one person with a different understanding of
the circumstances can really change the dynamics.
And again, everyone has a different way to grieve
with very challenging situations.
But the more you can create consensus for
family members and caregivers and all of the important
people in somebody's life, the better.
Absolutely.
And I think if we keep the patient at the center of things,
things can fall into place a lot more easily.
But, you know, if you are
a patient's family member, it's your
shared experience as well, to an extent.
And that's, I think, really hard for people to grapple with
and overcome. And it's understandable, it's very difficult.
I think when people don't want to have these conversations
at all, I try to tell them, "Look, it not about
giving up, it's about being prepared."
Yeah.
And I think what's really important is we can
hope for the best, and we can be optimistic
that treatment will work, and we be optimistic that you'll
feel better, and that things will go
really well. And still, we can
have these conversations.
We wanted to talk a little bit about some misconceptions
that exist about advance care planning.
I think one of them is something I hear
all the time is, "I'm not sick
enough for that.
I don't think we need to talk about that yet."
What do you say to that?
I tend to throw it a little personal when
that comes up, and I say, "You know what?
I've done mine.
Nobody knows what's going to happen.
You may not be sick enough in your
terms, but advance care planning is for everybody,
regardless if you have a cancer diagnosis, or maybe
you just got married, or any sort
of life event is a
good time to have these conversations.
It's not about your
death." And I think that's an important distinction to
make. A lot of people hear "advance care planning" and they
think, oh, well, all we're going to talk about is how I'm
going to die.
But in reality, advance care plan is talking about how do
you want to live?
And so, that to me is
the main distinction that I think we all
can continue to talk about is, this is
how we're going to live, not about how you're going to die.
Another misconception that I've heard a lot is,
"Well, I don't need to do that. My family already knows
what I want." What would you say to that?
Yeah, we hear that a lot.
And I think especially among families that,
that may be close, they may say that.
To be honest, it's more of a deflection technique
and understandably so because these are difficult
conversations. What I tell people is, "Look, your
family might know what you want and that may very true, but
it's better to be clear.
It's better to write things down
and it's better to use that piece of paper as
a communication technique to your medical team as
well because then we can go to that,
we can look at in the middle of the night if something
unexpected happens, what you have said before.
And because it may be that whoever that
person is, they may not be around at that exact moment
in time. Plenty of times that's not the case, but sometimes
it is. And so, it's better to be clear.
And so, this is really a communication technique.
Whenever people fill out advance care planning documents,
we put them in their medical record in a very specific
place so that they're easily visible to anybody that
needs to access them.
And so, it's a way to communicate sort
of, not just with the small group of people that you may or
may not have had conversations with, but with everyone kind
of, at large. Another thing that people talk
about or that people think is if I
have this conversation, if I talk about this, I'm
giving up.
Yeah. We hear, and I hear that all the time.
"I don't want to talk about this because I want to stay
positive. I want to stay optimistic.
If I have these conversations, it means I'm
losing hope, I'm giving up, and I don't want to do that."
And that's a completely understandable
sentiment that they're feeling, right?
And I think we all understand that.
And so, trying to reframe it to
the patient and their loved ones is that it's
not about giving up.
It's about being prepared.
It's about taking control in a situation
that you don't have control over.
It's about planning for peace
of mind, planning for those
moments that we hope we don't get to,
but that if we do get there,
knowing that you've prepared, knowing you've put things in
place, also knowing that by doing this,
sometimes you can take the burden off of your family,
is another piece that I like to say when people
are hesitant to do it.
They may not want to do it for themselves, but when you can
frame, you know, by talking about this, by having
these conversations, you're taking some burden off your
family members to make those hard choices in
the event they have to do that.
I think it's just, it's a lot about how we have the
conversation, how we frame it to people
and starting where they are, right?
They may not be ready and that's OK.
But then we're going to come back and we're going to
readdress it because it's one of those things that has to
be talked about.
And these conversations can change over time.
Absolutely.
Right? I think that if I talk to somebody
who has a very high likelihood that
their cancer has been cured, I'm having a very different
conversation about their future than someone
who has an advanced cancer that is
incurable or someone who is actively dying.
Yeah.
And I think it's OK to acknowledge that
those are dramatically different conversations.
We're not asking this to be a one-size-fits-all approach.
I think that it's important that
what matters most to the patient stays central.
For some patients, they say,
"Look, I want a cure.
I understand there are going to be a lot of side effects
and I understand that I'm
going to put my body through a lot, but I
have the opportunity, my team has made it very clear that
there is a good chance at cure and so those are things that
I am willing to, those are my trade-offs that I'm willing
to make. Whereas others, we'll
have a conversation that looks a lot more like, "Look, my
body is breaking down." And
I'm worried, I may be worried that they are dying
or to be perfectly honest, they may be worry that they're
dying.
And so, all of a sudden we're having a very different talk
not about the side effects that you're kind of
willing to go through but how to alleviate suffering, and
how to have those milestones be the
benchmarks that we kind of stare at, the goals.
How do I make it to this wedding?
How do make it this graduation or other
life event?
Or how do I just have a little less pain on
a day in and day out basis?
And there's a lot there obviously, but I
guess the point is, this is not a
one-size-fits-all approach.
Yeah.
We've discussed a lot.
Could you maybe give some key takeaways from
our conversation on advance care planning?
Yeah, um, you know, I think one of the most important
things I would say is it's never too early to start
having these conversations, um,
that it's something, it's ongoing.
Things can change.
Your values can change, and that's completely
fine. Whatever you say today may not be what
you want six months from now or a year from now,
which is why we have the conversation over and
over and again, because we want to make sure that we know
your goals, we know you values, we
know who's there to support you because we want to
engage them in those conversations as well.
And just really the acknowledgement that these
are really scary, difficult, emotional
conversations, but they're so necessary
and they're incredibly important to have, and that we
as their health care team are here to help
them with that. We're here to support them in those
conversations, and we're here to
help figure that out, and it's
an ongoing thing.
Thanks, Melanie, for joining me today.
It was a great discussion.
And thank you for listening to the Cancerwise Podcast
from MD Anderson.
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