(upbeat ambient music)
- Welcome to Health Source.
A community education program
brought to you by the University of Vermont Health Network,
which includes the UVM Medical Center,
Central Vermont Medical Center,
Champlain Valley Physicians Hospital,
Elizabeth Town Community Hospital,
and Alice Hyde Medical Center.
Your host today is Alexandra Tursi
from the UVM Medical Center.
- Death is a reality of life,
but it's hard for us to talk about.
The medical community wants to change that.
As our elderly and chronically ill population expands,
medical professionals are looking at new ways
to approach the experience of death
by changing how we talk about it and how we plan for it.
This work is centered in the field of palliative care
which aims to ease a suffering of patients and families
facing serious or terminal illness
with a focus on quality of life.
Here today to talk to us about palliative care
is Dr. Robert Gramling, the Holly and Bob Miller Chair
in Palliative Medicine
at the University of Vermont Medical Center
and the UVM College of Medicine.
Dr. Gramling is a nationally respected leader
in palliative and hospice care and will be responsible
for building the palliative medicine program
at the UVM Medical Center and College of Medicine.
Welcome to the program, Bob.
- Thanks Alexandra, thanks for having me.
- So I'm just gonna jump in with a big question.
- Please do. - Why are we afraid
to talk about death?
- Yeah, you do jump in, that's fantastic, yeah, great.
So the short answer is probably
that it's one of the things we share
that no one's experienced yet.
And humans tend to fear the unknown,
or at least wonder about it
but probably the reasons we don't talk about death
maybe as complex as any other human behavior,
some is because it's maybe not normative in whatever society
or community we happen to be living in.
But I do think a substantial piece
of this is it's just, it's really unknown.
- And in your experience working with patients,
what do you find matters to them
when they're facing death or a serious illness?
- Probably the most humbling piece of my job.
Well, there's probably many humbling pieces of my job,
but one of them is whenever I have a suspicion
of what I think matters to somebody,
I'm inevitably wrong until I ask them.
So it's somewhat superficial to say it depends
and it matters and it differs by who the person is,
but in reality, that's kind of what I find is some people,
what matters to them is what is gonna happen
after their body has died,
either with regards to how they're remembered
or what happens existentially.
Some worry a lot about the dying process,
is this gonna hurt?
Is it gonna hurt me?
Is it gonna hurt my loved ones?
And some aren't necessarily sure what's bothering them
but just the idea of all of things are happening
can be confusing and scary,
so those are probably the spectrum of things.
But to get to your point, I think a little bit what matters
and I think almost no matter
what specific thing about dying may be important
to any individual person,
I have found almost without exception
that every person who encountered who is ill
and who is potentially suffering
and who is facing death
wish to be understood and heard by those around them.
And that may sound like a small thing,
but it's a pretty big thing.
- So how do you then make that happen?
How do you work with patients
and how do you create that environment of open communication
about wants and needs and fears?
- I think patients and families create it for me.
I just have to give it some space.
Oftentimes when you're meeting a new person
and especially when patients are vulnerable
if you're in a hospital, it can be a sometimes
undignifying experience and we'll worry,
you know, what's my agenda?
Who is this guy?
You know, he came in, he's from palliative care,
I don't know what that means.
So part of the first time is a meeting people,
unless they've asked to see me and have a preconception.
They might be wanting to just determine, am I a safe person?
And trying to understand what my role is and why am I here.
And once that barriers somewhat breached
and get a sense that I am really here to understand
who you are, what's going on and how I might be of help
with what I understand to be happening
that they tend to create the space that we go to
about what's important to them.
- And in your experience over the many years in your career,
what kind of lessons have you derived
from those conversations and work with patients?
- I think a few things.
One is I think as I mentioned before,
and I'll come back to it again,
every time I think I come in with some expectation
of what I think is gonna matter to you or to me
or to somebody else, I'm frequently odd and surprised,
and interested to hear that what matters
to people may not be what I was thinking.
And so if I've learned anything, it's that I gotta ask.
- Could you give an example
of something that has been surprising or some stories?
- So a relatively, this may not be common
but something that we might experience
with some frequency is when people are suffering
with the idea of dying or with the symptoms of being ill
and in a time period where they're not sure
how long they're gonna live,
when we ask, when someone may say I'm afraid of dying
or that when we may get there in our conversation
and when you ask or explore what is most scary to you,
is it the idea of not being alive and what happens
or are you worried
that we're not gonna be able to care for you well
when you're dying.
And I find the majority of people
that I've had these conversations with,
it's the latter, it's the fact
that they haven't had a chance to talk with someone about
what's gonna happen when things stop working.
I mean, most people have experienced some degree of pain
or suffering in some way when their bodies stopped working
and it can be, oh my goodness, are the doctors
and nurses gonna be able to help me with this
or are my last moments here are gonna be painful?
And oftentimes that's one of the easier things to address
is that, yes, we can do this well for you.
It's gonna take some preparation,
we're gonna have to talk about it
or you're gonna have to tell me who your person is,
so we can talk about it and have your back together
but yes, we can do this well.
- You're listening to Health Source
from the University of Vermont Health Network.
I'm Alexandra Tursi
and we're talking about palliative care
with Dr. Bob Gramling,
the newly installed Holly and Bob Miller Chair
in Palliative Medicine
at the university of Vermont Medical Center
and the College of Medicine.
How would you define palliative medicine?
- This is a definition that people worked hard on for
Medicare to help define what palliative care is.
And as I often remark,
I don't necessarily turn to Medicare rules for poetry
but I think this is a really wonderful definition
that captures the pieces of this.
So palliative care means patient
and family centered care that optimizes
quality of life by anticipating,
preventing and treating suffering.
Palliative care throughout the continuum of illness
involves addressing physical, intellectual,
emotional, social, and spiritual needs
and to facilitate patient autonomy,
access to information and choice.
One of the reasons why I think that's a useful definition
is that it helps address the fact
that what we're talking about here is suffering.
And that concept of suffering is different than disease.
Disease is something that happens to ourselves
and to our tissues and to our bodies
and sufferings, it happens to persons.
It's how that experience of disease
or illness influences our identity,
who we are, our intactness as a person,
and it's a definition that Eric Sal
uses in some of his writings.
And so for us to do our job well,
we need to understand who that person is
because when we diagnose and treat suffering
and anticipate it, I need to bring with me my understanding
of the medical treatments of the pathophysiology
and the things that the person body's experiencing,
but I really have to have a really good understanding
of who they are
and how those experiences might influence
their definition of self and personhood
and how they are in the world.
And so that's one reason I think this definition
is quite eloquent.
- And in thinking about that definition
and some of what you just said
and conversations happening in the media
and else were about the experience of dying
and the patient experience, what do you see as elements
that need to potentially be redesigned or rethought of,
as we think about this part of the patient experience?
- Well, I just had the good fortune
of coming from the announcement
of the groundbreaking for the new hospital.
And I think they had presented in a wonderful example
that in designing that physical building,
involving patients and families, and thinking about that,
what do you need?
What would be a good fit?
So the first answer is involving the people
who are experiencing it, both us and patients and families
but with respect specifically to the concepts of suffering,
the more we can do that will help us know
either when we walk into someone's room,
when we open their medical record
as the people caring for them,
we know a little bit about who they are,
not just their diseases and the treatments,
that would be a wonderful piece.
And Harvey Chochinov has done some work.
He's a psychiatrist in the palliative physician
on concepts of dignity therapy,
which is essentially that,
this is saying, I really want to know your story.
I'm gonna help organize your story and put it in a,
either piece of paper and the old style charts
or in the medical record
in a way that those caring for you
will know how you define yourself,
a little bit about yourself
so it'll help them care for you.
And that is one step that the idea of who I am as a patient
is not lost within all of the really important stuff too,
which need to be there
about how to manage the diseases I have
but to get that up there and keep that for run center
would be a, for me, would be
a wonderful way to continue reengineering what we do.
- And one aspect of that
I think would probably also be the cultural element.
How has that kind of played out
as something you've considered
in terms of where a person comes from, family traditions,
who they are culturally?
- One of the beauty is about cultures,
it gives us different forms of collective identity.
And in coming back to what I said before though,
is one of the traps we can get in
is making assumptions about people,
because we think we know the community
or the identities or the cultures that they come from.
So I will want to ask them and explore,
what is it that you bring to this situation you're in
that is important for me to know to care for you?
Are there things about your culture or your background
that I need to know as your doctor
to do a good job caring for you?
Now, some people will look at me like,
what are you talking about?
But most won't, most will say, yeah, no,
it's important to me that you refer to me this way,
or it's important to me
that you really include my family in this conversation
'cause they've always really been there for me
and we make decisions together.
And when people are suffering as well,
there may be traditions of their culture
that we might otherwise ascribe to our background upbringing
that they're no longer feeling
are very functional for them at the moment.
So they may not choose to define themselves
as still requiring those cultural norms in their care
or in who they are at the time.
So, does that answer your question?
- It does. - Just get at it a little bit.
- So it sounds like really open communication is key
and kind of without bias or preconceived notions.
- Yeah, there's a concept called beginner's mind
that some of the teachers, (indistinct) Buddhist teaching
but is the idea that as soon as we think we're an expert,
we really kind of stopped learning on some level.
So if we can get ourselves in a space
that we've think of ourselves as beginners,
then we have the opportunity to be curious about one another
and about who this person is.
So I think that's something that we can aspire to is to
not assume we're experts about who you are.
- Your position is endowed by the Vermont philanthropist,
Holly and Bob Miller.
I'm just wondering how you've maybe connected
with the Millers about palliative medicine
and its role at the medical center in Vermont generally.
- So I met Holly about a year ago almost
and was immediately just aware of her energy and her spirit
and deep dedication to this field of palliative care.
And Bob more recently and felt the same thing from him.
And what I've really been struck by,
although this certainly this endowed chair
provides an immense opportunity to innovate,
to re-engineer the things that we were just talking about,
to figure out how do we do this better.
It really is in some ways
a capstone to a life of dedication to this field.
- So what do you hope to accomplish in your role here
at the UVM Medical Center and the College of Medicine?
- Well, and super broad strokes,
so we'll say, you know gosh, wouldn't it be great
if we could say that every person we see
says that they feel heard
and understood by those caring for them?
That thing alone would be fantastic.
And so when we think about trying to understand
what does it mean to communicate well, the science of that,
we've got fantastic opportunities in palliative care science
to start understanding what does it mean to communicate well
and how do we create our systems of care,
the physical structural stuff, our training of ourselves
and of our learning colleagues
and the incentives that drive how we work
and how we grow towards that goal of communicating well.
And this is an incredibly exciting time
to be engaged in that conversation and here at UVM,
I think we're just, we're really poised to lead the nation,
hearing this out
- All sounds wonderful.
And we're so excited to have you here at the medical center
and to see what you will accomplish here.
Our guest today on Health Source has been Dr. Bob Gramling,
the newly installed Holly and Bob Miller Chair
in Palliative Medicine
at the University of Vermont Medical Center
and the College of Medicine.
Thank you for joining us today, Bob.
(upbeat ambient music) - Thank you, Alexandra,
this was a lot of fun
and thank you to listeners for spending their time with us.
- For more information on palliative care,
please visit uvmhealth.org/medcenter.
- You've been listening to Health Source,
brought to you by the University of Vermont Health Network
which includes the UVM Medical Center,
Central Vermont Medical Center,
Champlain Valley Physicians Hospital,
Elizabeth town Community Hospital,
and Alice Hyde Medical Center.
For more information, visit uvmhealth.org.