#13: Refining serious illness conversations: a patient-centered approach with Dr. Paige Barker, MD, Dr. Karen Bullock, PhD, LICSW, FGSA, APHSW-C, and Dr. Carine Davila, MD, MPH

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Patty: You have a framework for
serious illness conversations, and
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you're ready to use it for one of
your patients you're worried about.
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As a quick refresher to the framework,
you go to a link on Serious Illness
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Conversation Guide on the VeriGeri show
notes page, but in real life, sometimes
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the conversation doesn't go as planned.
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Pages don't stop, other providers
interrupt, the words don't
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land how they're supposed to.
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In this episode, we go through
the basics of the framework for a
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serious illness conversation, but
also talk about troubleshooting.
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What can you do when you get the
silence to what matters most to you?
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When can you use serious illness tools?
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How can they help you and
the patient make decisions?
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How do we troubleshoot when
families and patients haven't
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had these conversations before?
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Should you have a different
approach if patients have a specific
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ethnicity, religion, or culture?
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We're going to talk with
three powerhouses today.
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Dr. Paige Barker, MD, is a clinician
educator in general internal medicine
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with expertise in palliative care
at the University of Florida.
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She's passionate about teaching
palliative skills and improving
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serious illness communication.
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She is the Palliative and End of Life
Curriculum Director at University of
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Florida College of Medicine and leads
the Goals of Care workgroup at UF Health.
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Dr. Karen Bullock, PhD, LICSW, FGSA,
APHSW-C, is a Louise McMahon Ahearn
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Endowed Professor at Boston College School
of Social Work and Global Public Health.
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She is a clinical social worker with
expertise in health disparities, aging,
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serious illness care, and palliative care.
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She's led numerous federal grant
funded research on equity, workforce
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development, and health sustainability.
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She is the John A. Hartford Faculty
Scholar and has served on numerous
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national boards including SWHPN
and the ACS Oncology Social Work
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Research Peer Review Committee.
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She is also the steering committee
member for the Duke University REACH
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Equity Center and an affiliate faculty
at the Center to Advance Palliative Care.
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She received the AAHPM Richard Payne
Outstanding Achievement in Diversity,
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Equity, and Inclusion Award in 2024.
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Lastly, Dr. Carine Davila, MD,
MPH, is a palliative care physician
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at Massachusetts General Hospital
dedicated to improving access to quality
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care for marginalized populations.
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She is the equity director
for the Division of Palliative
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Care and Geriatric Care.
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Medicine and co created the Palliative
Care Health Equity Curriculum.
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Dr. Davila co leads United Against
Racism efforts and conducts research
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on improving serious illness
communication for Spanish speaking
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patients, clinicians, and interpreters.
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Have we got a show for you!
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Stay tuned!
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Veri,
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Veri, Geri.
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Remember, don't take any medical
advice from this podcast.
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Always consult with your own
physician on your medical decisions.
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And this podcast is not
affiliated with any universities.
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Thoughts and views are our own.
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Welcome to the VeriGeri podcast.
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I'm Patty.
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I'm Sam.
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We are going to start with some
polite Wednesday afternoon questions.
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What kind of self care do you do
after having a seriously serious
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serious illness conversation?
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Dr. Karen Bullock: Hi, I'm Karen Bullock.
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One of my first lines of defense of self
care is to huddle with people who get it,
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who can provide insight and affirmation.
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It's actually quite common in
the work that we do to have
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those kinds of experiences and
to lean into others for support.
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Dr. Carine Davila: Hi, I'm Carine Davila.
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My recent approach outside
the hospital has been running.
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I've actually been training and running
marathons to help clear the mind, but
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also importantly feel like I'm doing
something for my own health, and I
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feel grateful for the ability to move.
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That's really inspiring because I just
finished a palliative consult block and
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was horizontal for three days straight.
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Dr. Paige Barker: Hi, I'm Paige Barker.
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One of the biggest things I do for
self care is maintaining my community,
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the relationships with those people
in my life that are important to me.
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Patty: And now for some bread and butter.
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Sam: Based on your experience, how would
you define a serious illness conversation?
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And when should we have them?
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So a serious illness conversation, I
like to start with what the goal is.
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It's to discover what's most important to
the patient so that you can align what we
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should be doing for their medical care.
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You want to get at things like
discussing their values and goals and
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touching on prognosis in the ability
to sort out their preferences for
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care when they have a serious illness.
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I think the second question is when
should we be having these conversations?
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And I think there's a lot of different
time points that can be triggers
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for serious illness conversations.
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One can be that surprise question, would
you be surprised if this patient were
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to die in the next six months or a year.
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Other ones can be based on disease status.
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I also like to think
about functional decline.
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Maybe if they're in the geriatric
world becoming more frail, maybe after
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repeat hospitalizations, or even just
after a hospitalization, somebody
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comes back to see you in clinic.
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And that's a great opportunity
to bring these things up.
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Dr. Carine Davila: I think sometimes
the terminology serious illness
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communication can feel alienating to
some clinicians or patients because
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they don't necessarily have a self
identity of serious illness per se.
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I think there's different conversations
happening in the palliative care
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world about what's the right
terminology, what does it mean?
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But I think at the core, it's
really conversations to understand
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what matters most to patients,
families, and caregivers.
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When you frame it that way, it's really
something that anyone can benefit from.
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Patty: Often primary teams will consult
palliative teams for goals of care.
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How might you explain how a serious
illness conversation is different
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from a goals of care conversation?
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Or is it different?
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Dr. Carine Davila: Not all serious
illness conversations result in needing
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to make an acute medical decision.
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Oftentimes as clinicians, we associate
the goals of care conversation
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with an acute medical event.
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If somebody is facing critical illness
or in an acute hospitalization and some
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important decisions have to get made.
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But really.
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Goals of care conversations aren't
limited to critical illness, they
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can happen at many stages in the
inpatient and outpatient setting.
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I just want us to be careful about
what terminology we're using and
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not to box ourselves in on what is
exactly a goals of care conversation
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versus a serious illness conversation.
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Dr. Karen Bullock: Serious illness
conversations do happen outside of a
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critical care or primary care setting.
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Oftentimes in the community when
we're trying to help people think
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about what they would want to
happen in case of a serious illness.
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Serious illness conversations
shouldn't and don't need to just
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happen in healthcare settings.
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It's really helpful to begin them long
before the person is interfacing with
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the healthcare system and providers.
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Dr. Paige Barker: That brings up such
a good point because it takes off so
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much stress of the conversation when
a decision doesn't have to be made.
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Right?
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Then the focus really can
be on what matters most.
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Not having to make that critical
decision in the same conversation
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can take a lot of the pressure off.
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We also have to be careful about thinking
that these are conversations that a
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doctor has with a patient and we should be
expanding it to other interprofessionals,
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such as social workers or nurses or
community members that may also be able
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to have these conversations with patients.
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Sam: What questions do you ask to get to
the heart of someone's values if there's
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not a specific decision being brought up?
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Because sometimes I'll ask
people, what matters most to you?
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Sometimes that's too
open ended for people.
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Dr. Karen Bullock: I usually will frame
it in terms of having provided some
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information and then asking, well,
what would you like to have happen?
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Or what would be the best
possible outcome for you.
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In those contexts, people talk
about values without labeling them.
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When we use the word value,
people interpret words to
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mean lots of different things.
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We in the healthcare setting know
what we're thinking about when
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we use the word value, but in lay
terms, it means something else
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to the patient or the family.
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And similarly, even with suffering,
we use language like, do you
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think your loved one is suffering?
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Oftentimes, the patients I've worked
with say, no, they're not suffering.
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They look comfortable.
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And, you know, by our definition,
suffering is something else.
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I think we use language in health
care settings that don't necessarily
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translate to the same thing
for our patients and families.
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I tend to talk about the context
and then leave space for the
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patient or family to respond.
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Dr. Paige Barker: I often ask people
about hopes and worries because
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you can learn a lot about people
if you ask them what they're hoping
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for or what they fear the most.
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That can often come out with things
that are most important to them.
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Sometimes I'll ask them, what
brings your life meaning or what's
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most meaningful to you in life?
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Dr. Carine Davila: Part of becoming a
palliative care clinician is developing
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your own terminology, but I think there's
also a lot of value in tools, especially
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for people who are learning these
serious illness communication skills.
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One of the tools we teach at my
hospital is based on the Serious
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Illness Conversation Guide.
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It opens with asking questions.
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patients their understanding of
their health, potentially sharing
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some information, but it's really
important to ask permission.
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Would it be okay if I ask you
some questions to learn more
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about what matters to you?
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Many times people facing
illness, especially in healthcare
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settings, don't necessarily feel
like they have a lot of agency.
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Asking permission gives them a little
bit of agency, and you have to respect.
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Hopefully the answer is yes, but
also if they say no, you have to
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respect that too, that they're not
comfortable going there and maybe
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pushing isn't going to be productive.
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You hopefully get a yes.
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Then using questions like given what I
just shared about your health, what is
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most important to you moving forward?
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What are some of the things
you're worried about?
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What are some of the things that bring
you joy and meaning to your life?
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What gives you strength and support?
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Like Dr. Bullock said, not asking what
are your values, but rather asking
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questions that help it feel like more
of a natural conversation where they
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feel more comfortable opening up and
you hear it and how they respond,
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what actually matters most to them.
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Sam: It
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feels
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very much like assuming that the
other person is ready to have
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that conversation feels like
entering a room without knocking.
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I want to think more about how
the different terms we use, like
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you brought up, Dr. Bullock,
can change based on population.
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So I'm wondering how you all would
define a person with a historically
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marginalized background and how their
background affects advanced care planning.
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Dr. Karen Bullock: I'll
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Sam: start as a social
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Dr. Karen Bullock: worker, um,
marginalized populations are those
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members of groups that historically have
been oppressed or disempowered in the
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larger society and who may have also
been excluded from access to health care.
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I think it's important to note that
for some black people, especially
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older adults whom I work with.
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They remember when U. S. healthcare
systems were legally racially segregated,
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and it wasn't until 1965 that those
Jim Crow laws were dismantled.
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Those individuals remember when they were
not permitted to have access to care.
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That's important to note because
that's a different type of relationship
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with healthcare systems when you
are legally discriminated against.
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Nonetheless, there are groups that have
been historically marginalized otherwise,
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so race isn't the only attribute.
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For example, women are often marginalized
in larger society and in various contexts.
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People with disabilities
are often marginalized.
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And a range of other racial, ethnic
groups in the U. S. who have been
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systematically provided in equitable
care or not have access at all LGBTQ
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populations, Indigenous people, people
of lower socioeconomic resources,
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children, youth, immigrants, refugees.
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People who are experiencing homelessness,
veterans, the list is long and that's.
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Not even talking about legal
definitions, I'm contextualizing it
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through a social work lens in terms
of populations that we work with and
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we center their lived experiences.
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It's really important when we're
engaged in assessments to understand
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people's lived experiences and
we can come to understand how
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historical marginalization influences
decision making, adherence to care,
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treatment recommendations, et cetera.
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Dr. Carine Davila: People's
own personal stories,
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identities, backgrounds, all
influence how they engage in medical
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decision making with clinicians
and advanced care planning.
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You can imagine that there's
hierarchies of needs.
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If you're really worried about where
you're going to sleep tonight, how you're
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going to get dinner on the table tomorrow.
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This idea of planning for the future
to give your family members peace
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of mind, like they're not going
to have peace of mind if they're
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worried about acute care needs now.
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I think we need to be thoughtful about
how we're engaging and framing how much
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this matters in the context of people's
lives and the pressures they're facing.
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Sam: It's really important
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to understand the context from a
population level and that history
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and how that affects how they view
health care and interact with it.
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We talked about how there are plenty
of training tools for early learners on
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how they can start these conversations
to understand their patients values,
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but wondering if there's any common
pitfalls you see specifically for
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historically marginalized populations,
keeping in mind that we're all learning.
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Dr. Carine Davila: There's
no one size fits all.
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There's lots of tools that can provide
some framework, but it's really about
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individualizing the conversation
to the person in front of you.
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It involves spending some time asking
the person who you want to engage
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in that conversation, who should be
part of the conversation with you?
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Do you want to be a part
of this conversation?
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Because for some individuals in certain
cultural backgrounds, they may want
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to hear information, they may want
a family member to hear information
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and then communicate it to them.
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But we can't know all of that.
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And that absolutely does not
correlate with groups of people that
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oftentimes have a lot of variability.
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Some of my research involves understanding
the perspectives of Latino patients.
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The first thing that we always
start with is the Latino
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population is not a monolith.
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There's a lot of variability in the
things that matter, how they want
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to engage in these conversations.
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I think the same can be said for
other different groups of individuals
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who have marginalized backgrounds.
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So I don't think there's any kind of
cheat sheets of, well, this person
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in front of you looks this way.
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This is the ticket to how to get there.
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It's really investing some of the time
to understand where are they coming from.
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Dr. Karen Bullock: It may
also require some unlearning.
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You learn something that you
think, oh, this is what I need in
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order for me to effectively engage
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rather than thinking about it as a
starting point on which to build.
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Some of what we've learned
about populations may not apply.
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Learners need to be comfortable with
utilizing these evidence based tools
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to determine the degree to which that's
actually applicable to the population.
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For example, this idea of
diversity within groups.
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I use the term Black for race, or
we could talk about ethnicity, and
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not all Black people identify their
ethnicity as African American.
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They could be Haitian
American or Jamaican American.
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Culturally, people are different.
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There's a long list of variation in
terms of people's cultural values,
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beliefs, and lived experiences.
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Rather than going narrow, go broad
with your knowledge and understanding
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00:15:30,186 --> 00:15:35,636
so you can see each patient and
family as the individuals they are.
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Dr. Paige Barker: I think expecting
too much from one conversation can be
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a pitfall to expect that you're going
to learn all these things that you need
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00:15:42,436 --> 00:15:46,686
to know to really understand the human
in front of you and make all these
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00:15:46,956 --> 00:15:51,846
important decisions in one conversation
might be unrealistic for some patients.
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Now, certainly the setting you're
in and the urgency of the decision
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would, you know, tailor some of that.
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And I think often people skip over
a lot of this exploring values and
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skip a lot more to the, let me give
you this medical knowledge and then
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let's decide what we're going to do.
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And they skip over the exploration phase.
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I think that's a common pitfall.
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Patty: Yeah.
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I think there's
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a lot of variables going
into that pitfall too.
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There's a time pressure, other
teams wanting to know an answer.
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But it's important to remember
that the patient at the bedside
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is who you're trying to help.
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Dr. Paige Barker: Also, it goes back to
having the conversation earlier, right?
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Or maybe in the community or in the
primary care doctor's office and not
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waiting until somebody's at a critical
moment to have these conversations.
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Patty: Yeah.
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00:16:35,361 --> 00:16:38,071
Dr. Carine Davila: You can think of it
as almost like you're trying to build
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00:16:38,071 --> 00:16:42,581
a muscle of help patients and families
engage and understand what matters
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00:16:42,581 --> 00:16:47,581
most to you earlier on in illness,
so that if there's a moment in time
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00:16:47,581 --> 00:16:51,441
where you are reaching a critical
illness or need for an acute decision,
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it's not the very first time they're
having this type of conversation.
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There might be new medical information to
integrate at that juncture, but if they've
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had practice talking about these things,
then hopefully that becomes a smoother
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conversation at that point in time.
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Patty: Hey, VeriGeri listeners.
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Summary time.
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00:17:09,076 --> 00:17:11,636
Serious illness conversations are
aimed at understanding what truly
316
00:17:11,636 --> 00:17:15,286
matters to patients with their values,
goals, and healthcare preferences.
317
00:17:15,796 --> 00:17:18,826
The key is to start these conversations
early in various settings and
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00:17:18,826 --> 00:17:22,726
not just hospitals, way before a
critical medical decision is needed.
319
00:17:23,786 --> 00:17:27,146
Serious illness conversations aren't
just about making medical decisions, but
320
00:17:27,146 --> 00:17:29,316
about exploring goals, hopes, and fears.
321
00:17:29,421 --> 00:17:32,901
with asking open ended questions
like, What matters most to you?
322
00:17:33,151 --> 00:17:34,321
or What brings you joy?
323
00:17:35,011 --> 00:17:37,791
Asking for permission to dive
into these topics is important.
324
00:17:38,731 --> 00:17:41,351
Historically marginalized groups
may approach advanced care planning
325
00:17:41,351 --> 00:17:44,661
differently due to factors like cultural
background, history with healthcare
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00:17:44,661 --> 00:17:46,461
systems, and current life challenges.
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00:17:47,211 --> 00:17:50,371
We should take the time to understand
individual patient needs and avoid
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00:17:50,521 --> 00:17:52,251
assumptions based on group identity.
329
00:17:53,171 --> 00:17:56,041
Questions like, how do you
like to make decisions, can
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00:17:56,041 --> 00:17:57,251
help start the conversation.
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00:17:57,681 --> 00:18:01,241
Need a refresher on what questions to ask
to have serious illness conversations?
332
00:18:01,731 --> 00:18:04,021
Check out our show notes on
our webpage, which will include
333
00:18:04,021 --> 00:18:06,821
links to often referenced serious
illness conversation guides.
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00:18:07,301 --> 00:18:08,311
Now back to the show.
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We're now going to test our serious
illness convo skills with a case.
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00:18:17,251 --> 00:18:18,771
We're going to see Willie Jenkins.
337
00:18:19,161 --> 00:18:22,691
He's 87, with poorly controlled
diabetes, tobacco use disorder,
338
00:18:22,701 --> 00:18:26,911
stage 3 CKD, advanced COPD, and a
history of multiple hospitalizations.
339
00:18:27,561 --> 00:18:29,841
He was admitted yesterday for
shortness of breath due to COPD
340
00:18:29,841 --> 00:18:31,941
exacerbation and volume overload.
341
00:18:32,151 --> 00:18:35,571
He needs assistance with many
activities of daily living, and his
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00:18:35,571 --> 00:18:39,131
wife Mary actually passed away last
year after battling pancreatic cancer.
343
00:18:40,011 --> 00:18:43,821
He identifies as Black, African
American, cisgender male, and is Baptist.
344
00:18:44,641 --> 00:18:49,231
Willy served in the U. S. Air Force for
22 years and is a Vietnam War veteran.
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00:18:49,441 --> 00:18:53,461
He is currently capable of making complex
medical decisions, including care plans.
346
00:18:53,701 --> 00:18:57,791
His closest family includes a 75
year old brother, Charles, who flew
347
00:18:57,791 --> 00:19:01,381
in from Alabama and his sister, who
has moved in to assist with his care.
348
00:19:01,441 --> 00:19:06,401
Three months ago, during a PCP visit,
Willy resisted discussing his overall care
349
00:19:06,401 --> 00:19:08,961
goals, declining to complete a POLST form.
350
00:19:09,751 --> 00:19:11,931
You see him struggling to
breathe on morning rounds and
351
00:19:11,931 --> 00:19:13,361
are concerned he may worsen soon.
352
00:19:13,841 --> 00:19:17,441
You plan to have a serious illness
conversation with him, his sister
353
00:19:17,441 --> 00:19:19,351
Jane, and his brother Charles.
354
00:19:20,271 --> 00:19:21,911
What initial questions would you ask?
355
00:19:22,951 --> 00:19:26,211
Dr. Paige Barker: I like to explore
with open- ended questions to find
356
00:19:26,211 --> 00:19:30,541
out what a patient understands,
but also what they want to know.
357
00:19:32,071 --> 00:19:33,611
Dr. Carine Davila: I think it's
really important to understand
358
00:19:33,611 --> 00:19:35,061
their communication preferences.
359
00:19:35,081 --> 00:19:38,431
Asking things like, when you have
conversations about your health,
360
00:19:38,471 --> 00:19:42,421
do you prefer to be alone, or have
somebody else receive information and
361
00:19:42,421 --> 00:19:43,981
help make decisions on your behalf?
362
00:19:44,021 --> 00:19:48,401
Patty: Willie says, I like my
family to be here, and is like,
363
00:19:48,431 --> 00:19:49,921
why are you coming to see me?
364
00:19:49,981 --> 00:19:52,711
Dr. Carine Davila: I'd probably open
with, I'm so glad your brother and your
365
00:19:52,711 --> 00:19:57,161
sister are here with you, and I'd like
to talk together about what's happening
366
00:19:57,161 --> 00:19:59,401
with your health and what matters to you.
367
00:19:59,511 --> 00:20:00,441
Would this be okay?
368
00:20:00,651 --> 00:20:03,191
Patty: Given the things we know
about Willie from the chart review,
369
00:20:03,191 --> 00:20:08,081
like his veteran status, ethnicity,
religion, being recently widowed,
370
00:20:08,081 --> 00:20:13,301
his education, does this play into
how you approach the conversation?
371
00:20:13,676 --> 00:20:16,986
Dr. Carine Davila: I think we've learned a
lot about him, but for some people, these
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00:20:16,986 --> 00:20:18,846
things may be more or less important.
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00:20:19,136 --> 00:20:22,756
So I don't know that I'd automatically
jump to saying, I see you're a
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00:20:22,756 --> 00:20:24,356
veteran, tell me more about that.
375
00:20:24,406 --> 00:20:26,606
I might see if that comes
up or that that's kind of an
376
00:20:26,606 --> 00:20:28,256
important part of his identity.
377
00:20:28,616 --> 00:20:30,936
It's not to say I won't explore
it, but that might not be
378
00:20:30,936 --> 00:20:32,426
where I start necessarily.
379
00:20:32,466 --> 00:20:35,926
The next thing I would say is really to
make sure I'm sharing what's helpful.
380
00:20:35,946 --> 00:20:38,276
Can you tell me your understanding
of what's happening with
381
00:20:38,276 --> 00:20:39,136
your health right now?
382
00:20:39,576 --> 00:20:43,326
There's this sense that we are
quite worried and feeling a pressing
383
00:20:43,326 --> 00:20:45,216
urgency to have a conversation.
384
00:20:45,576 --> 00:20:48,486
But I think it's important to level
of, is the patient necessarily
385
00:20:48,486 --> 00:20:50,196
feeling that same urgency or not?
386
00:20:50,256 --> 00:20:52,746
What's their sense of their own illness?
387
00:20:52,956 --> 00:20:56,706
Dr. Karen Bullock: And I would add
once that step is taken, I would
388
00:20:56,706 --> 00:21:04,386
return to his resistance to engage in
a discussion and say, I can see here
389
00:21:04,416 --> 00:21:06,471
that when you were previously asked.
390
00:21:06,936 --> 00:21:09,476
He didn't want to have these
conversations, but try to see if
391
00:21:09,476 --> 00:21:12,426
he's willing to talk about what
he was experiencing at that time.
392
00:21:13,366 --> 00:21:17,256
Only after having done things that
would help him feel that he has some
393
00:21:17,266 --> 00:21:20,976
agency, to see if that's an area
we can try to scratch the surface.
394
00:21:21,326 --> 00:21:25,486
When you're trying to sort through
what that experience was in the PCP
395
00:21:25,486 --> 00:21:29,326
office is also, you know, again, an
opportunity to ask about hopes or
396
00:21:29,326 --> 00:21:32,216
fears, like, what was he worried about?
397
00:21:32,266 --> 00:21:34,646
Why are we trying to
avoid these conversations?
398
00:21:34,706 --> 00:21:38,196
Might help give insight into an
approach that you can take that
399
00:21:38,196 --> 00:21:39,466
will make him more comfortable.
400
00:21:40,161 --> 00:21:43,941
Patty: Okay, say you've gotten
his understanding from the family.
401
00:21:43,951 --> 00:21:47,601
He understands that he's sick,
short of breath, but he's like,
402
00:21:47,601 --> 00:21:49,181
I've gone through this before.
403
00:21:49,901 --> 00:21:53,501
You know, we don't need to talk about
what we talked about in the PCP office.
404
00:21:53,541 --> 00:21:57,041
Meanwhile, the primary team is
like, oh my gosh, he might be
405
00:21:57,041 --> 00:21:58,721
intubated in the next few days.
406
00:21:59,161 --> 00:22:01,361
How would you approach him in that sense?
407
00:22:01,961 --> 00:22:05,331
Dr. Paige Barker: I like to use I
wish and I worry statements or I hope
408
00:22:05,361 --> 00:22:09,621
and I worry statements to help align
you with the patient because we often
409
00:22:09,631 --> 00:22:11,531
hope and wish the same things, right?
410
00:22:11,851 --> 00:22:16,491
And then you can express what you're
worried about in a more gentle fashion.
411
00:22:16,901 --> 00:22:20,591
So you could say something along the
lines of I hope that you're going
412
00:22:20,591 --> 00:22:24,611
to recover from this illness and
not need a higher level of care.
413
00:22:24,681 --> 00:22:29,021
But I worry about your respiratory
status right now and that
414
00:22:29,021 --> 00:22:30,501
it could decline further.
415
00:22:30,601 --> 00:22:33,791
Would it be okay if we talk
about what you might want to
416
00:22:33,791 --> 00:22:36,221
prioritize if that were to happen?
417
00:22:36,261 --> 00:22:37,451
Dr. Karen Bullock: I would add that given
418
00:22:37,461 --> 00:22:40,841
It looks like the last discussion
was three months ago, there could be
419
00:22:40,841 --> 00:22:44,861
something about his brother and his
sister that might make it pop out
420
00:22:44,861 --> 00:22:50,486
that there is consent to engage the
family member, ask them for their
421
00:22:50,486 --> 00:22:54,646
thoughts about his feeling fine and
doesn't want to have the conversations.
422
00:22:54,676 --> 00:22:59,026
I think about having been at the bedside
with my mother, who was diagnosed with
423
00:22:59,076 --> 00:23:06,066
metastatic lung cancer stage four, and
she was similar to Mr Willie Jenkins.
424
00:23:06,066 --> 00:23:07,166
Like, I'm good.
425
00:23:07,206 --> 00:23:07,886
I'm fine.
426
00:23:08,036 --> 00:23:11,806
I want to hear from my checkup and
I want to just go on back home.
427
00:23:11,916 --> 00:23:16,806
I think it's important to involve
the family members if you want
428
00:23:16,816 --> 00:23:18,316
to gather additional information.
429
00:23:18,566 --> 00:23:23,266
Having been the family member who is
sitting with a patient who is very
430
00:23:23,346 --> 00:23:27,791
similar, the family member and the
patient may be at peace with each other,
431
00:23:28,131 --> 00:23:35,601
their health care condition and the way
in which they are choosing to move along
432
00:23:35,721 --> 00:23:39,151
the continuum, even though for us as
the clinician, it might not feel that
433
00:23:39,151 --> 00:23:40,911
they're moving along a continuum at all.
434
00:23:41,141 --> 00:23:44,321
Dr. Carine Davila: To the earlier
point, sometimes it's enough to express
435
00:23:44,321 --> 00:23:48,531
uncertainty and say, yes, I hope that
you will feel as well as possible.
436
00:23:48,531 --> 00:23:50,591
And we're going to work
together towards that.
437
00:23:50,641 --> 00:23:53,021
And it's also possible that you could get.
438
00:23:53,261 --> 00:23:56,231
Sick quickly and that your
breathing status could worsen
439
00:23:56,231 --> 00:24:00,261
quickly as that's what's landed
you in the hospital this time.
440
00:24:00,271 --> 00:24:02,331
Just taking a moment to acknowledge that.
441
00:24:02,886 --> 00:24:08,536
may make it feel like a little bit of a
safer opening or saying, this is why we're
442
00:24:08,536 --> 00:24:12,946
bringing it up right now because there
has been a change compared to walking
443
00:24:12,946 --> 00:24:14,966
into your PCP's office three months ago.
444
00:24:15,486 --> 00:24:19,136
Dr. Karen Bullock: I'll circle back and
add to that list of attributes because
445
00:24:19,136 --> 00:24:25,336
those factors might be influencing how the
patient is presenting and The decisions
446
00:24:25,366 --> 00:24:30,866
that he is making to use this example of,
you know, having been at the bedside with
447
00:24:30,976 --> 00:24:33,766
a family member who's making decisions,
there may be things that they're doing
448
00:24:33,786 --> 00:24:35,206
outside of the healthcare setting.
449
00:24:35,206 --> 00:24:37,356
That's helping them to
quote unquote, be at peace.
450
00:24:37,356 --> 00:24:42,946
If you think about someone who's a
veteran who may also be heavily invested
451
00:24:42,996 --> 00:24:48,096
in their spirituality and religion, they
may have other coping mechanisms for
452
00:24:48,146 --> 00:24:51,116
managing their illness in ways that.
453
00:24:51,416 --> 00:24:57,046
Don't necessarily align with what
we in the medical setting might hope
454
00:24:57,046 --> 00:25:02,436
for thinking about how are we at
peace with a patient that that isn't
455
00:25:02,446 --> 00:25:07,176
necessarily making decisions in the
way that we might hope or would want.
456
00:25:07,676 --> 00:25:10,346
Patty: There's been a lot of times I
get to the hope and worry statements.
457
00:25:10,606 --> 00:25:13,196
I worry about the uncertainty
of your respiratory status.
458
00:25:14,091 --> 00:25:16,601
Families often ask, what's the next step?
459
00:25:16,751 --> 00:25:18,221
Are they just going to intubate me?
460
00:25:18,241 --> 00:25:21,191
Just very medical decision
and action oriented.
461
00:25:21,671 --> 00:25:26,531
How would you bridge their values and
who they are to making a recommendation?
462
00:25:27,281 --> 00:25:30,051
Dr. Carine Davila: Hopefully, after
you've explored their understanding and
463
00:25:30,221 --> 00:25:33,471
the things that are important to them,
it's doing a little bit of reflection.
464
00:25:33,471 --> 00:25:36,461
Like, you know, I'm hearing
that blank, blank, and blank
465
00:25:36,771 --> 00:25:38,191
are really important to you.
466
00:25:38,471 --> 00:25:40,871
Is it okay if I make a
recommendation based on that?
467
00:25:41,141 --> 00:25:45,691
Because maybe they've said something like,
It's really important for me to be back
468
00:25:46,601 --> 00:25:51,441
at home taking care of my dog and making
sure that he gets his three walks a day.
469
00:25:51,551 --> 00:25:56,001
Suddenly you're facing a decision that's
like Well, if we pursue this procedure,
470
00:25:56,051 --> 00:26:01,191
the chances of him getting back to what
he deems important or what we, in a
471
00:26:01,191 --> 00:26:05,691
medical frame, might say, okay, quality
of life to him looks like being at home
472
00:26:05,691 --> 00:26:10,111
and being able to walk the dog three
times a day, then we can help reconcile.
473
00:26:10,121 --> 00:26:15,271
Like, I'm hearing that being able to be
at home, be with your dog, Spend time
474
00:26:15,271 --> 00:26:17,101
with family is really important to you.
475
00:26:17,801 --> 00:26:22,091
Now that we're facing this decision, I
might actually recommend that we don't
476
00:26:22,101 --> 00:26:28,411
proceed with A, B, C, and instead focus
on plan X that maybe has a greater
477
00:26:28,411 --> 00:26:31,661
likelihood of letting you do those
things that are important to you.
478
00:26:31,951 --> 00:26:33,191
So it's integrating.
479
00:26:33,361 --> 00:26:35,531
What have they shared with you?
480
00:26:35,931 --> 00:26:40,891
And you be the kind of like,
the broker at marrying that with
481
00:26:40,891 --> 00:26:42,311
the medical decision at hand.
482
00:26:42,821 --> 00:26:44,491
And offering a recommendation.
483
00:26:44,541 --> 00:26:47,321
Sam: Do you always ask if you
can give a recommendation?
484
00:26:47,331 --> 00:26:51,801
Is that for most patients or is it
for certain ones who are seemingly
485
00:26:51,801 --> 00:26:53,441
struggling more with the decision?
486
00:26:53,491 --> 00:26:55,991
Dr. Paige Barker: I always ask
for permission before I give a
487
00:26:55,991 --> 00:26:59,041
recommendation, especially when we're
talking about these really sensitive
488
00:26:59,041 --> 00:27:01,761
topics and end of life types of care.
489
00:27:01,771 --> 00:27:04,941
I don't know that I've ever had somebody
say no when I approach it that way,
490
00:27:04,941 --> 00:27:08,251
but I think it shows respect and gives
them some agency back to stop the
491
00:27:08,251 --> 00:27:09,921
conversation if they're uncomfortable.
492
00:27:11,176 --> 00:27:13,466
Dr. Karen Bullock: One of the major
reasons they're in the care setting, they
493
00:27:13,466 --> 00:27:15,646
want expert opinions and recommendations.
494
00:27:15,656 --> 00:27:18,130
It's important to be mindful of that fact.
495
00:27:18,130 --> 00:27:19,810
That's why they are there to
hear what you would recommend.
496
00:27:19,975 --> 00:27:23,405
Dr. Carine Davila: I think one of the
challenges sometimes is as clinicians,
497
00:27:23,445 --> 00:27:26,255
there's this concept of shared
decision making, wanting to make sure
498
00:27:26,255 --> 00:27:29,615
that clinicians are giving patients
and families enough information and
499
00:27:29,615 --> 00:27:31,035
arriving at a decision together.
500
00:27:31,375 --> 00:27:34,705
But I think sometimes this pendulum
swings too far and we feel like we have
501
00:27:34,705 --> 00:27:36,695
to offer all the options on the table.
502
00:27:37,005 --> 00:27:40,165
In some ways, it feels like you're
actually deferring responsibility because
503
00:27:40,165 --> 00:27:41,355
you're like, well, it's their choice.
504
00:27:41,755 --> 00:27:43,785
And that doesn't feel
like the right approach.
505
00:27:43,895 --> 00:27:48,710
We need to support patients and families
because they don't have the medical
506
00:27:48,710 --> 00:27:51,750
training, years of experience that we do.
507
00:27:51,770 --> 00:27:54,320
And so I think it really
is about supporting them.
508
00:27:54,600 --> 00:27:58,490
One of my personal pet peeves is when
teams are like, well, you can choose A
509
00:27:58,490 --> 00:28:02,070
or B. When you talk to them beforehand,
they're like, B is really the only option.
510
00:28:02,080 --> 00:28:05,310
Nobody would really, or should choose A.
And if they feel that strongly, well, then
511
00:28:05,310 --> 00:28:07,610
you shouldn't offer option A on the table.
512
00:28:07,780 --> 00:28:10,980
There's a greater responsibility on us
as clinicians, especially if there's
513
00:28:10,980 --> 00:28:16,370
multiple teams involved to huddle and try
to understand what are the actual options.
514
00:28:16,520 --> 00:28:20,240
Are we making sure that people
have the information they need.
515
00:28:20,300 --> 00:28:24,520
If there is option A and B, great, we'll
make sure that we actually know what
516
00:28:24,520 --> 00:28:26,710
would follow if they choose A or B.
517
00:28:26,970 --> 00:28:29,890
If it's not a real option, don't
say that it's a real option.
518
00:28:29,890 --> 00:28:34,360
Instead say, you know, this is where
we are and support them with whatever
519
00:28:34,540 --> 00:28:36,340
options are really on the table.
520
00:28:36,370 --> 00:28:36,600
Patty: Yeah,
521
00:28:36,600 --> 00:28:36,900
Dr. Carine Davila: I think
522
00:28:36,900 --> 00:28:40,245
Patty: it's hard when somebody
comes to you without knowing your
523
00:28:40,245 --> 00:28:43,875
values and is like, do you want
trach and PEG or comfort care?
524
00:28:44,105 --> 00:28:45,045
You can only choose one.
525
00:28:45,655 --> 00:28:46,935
It's a hard place to start at.
526
00:28:48,235 --> 00:28:49,445
Hey, VeriGeri listeners.
527
00:28:50,265 --> 00:28:53,535
After we had our gurus apply the
serious illness conversation framework
528
00:28:53,585 --> 00:28:57,215
to our case, we did have additional
questions for patients who don't speak
529
00:28:57,215 --> 00:28:58,645
English and may need an interpreter.
530
00:28:59,585 --> 00:29:00,615
We'll end with that next.
531
00:29:03,625 --> 00:29:07,585
Sam: Do you have best practices for
working with an interpreter, especially
532
00:29:07,595 --> 00:29:09,135
around sensitive conversations?
533
00:29:09,265 --> 00:29:11,255
Dr. Paige Barker: So I think
a pre meeting huddle is really
534
00:29:11,255 --> 00:29:15,215
important with the interpreters
for a couple different reasons.
535
00:29:15,215 --> 00:29:19,295
One is to share with them the content
of the conversation, to prepare them.
536
00:29:19,785 --> 00:29:25,655
You can also lean on them for potential
cultural things that may impact
537
00:29:25,655 --> 00:29:26,995
the discussion of death and dying.
538
00:29:27,205 --> 00:29:30,595
You can't ever assume that
the patient is going to align.
539
00:29:31,175 --> 00:29:33,665
With the same cultural.
540
00:29:34,260 --> 00:29:38,070
beliefs that the interpreter shares,
but it may highlight things that
541
00:29:38,070 --> 00:29:39,610
you should be more sensitive to.
542
00:29:39,640 --> 00:29:43,160
Sam: I think I experienced that when I
was having a serious illness conversation.
543
00:29:43,540 --> 00:29:46,100
We were about to go into a family
meeting with a patient with
544
00:29:46,100 --> 00:29:48,380
esophageal cancer and was from Mexico.
545
00:29:48,670 --> 00:29:51,620
An interpreter told us this
patient might have a different
546
00:29:51,630 --> 00:29:53,590
understanding of what hospice means.
547
00:29:53,590 --> 00:29:57,700
It was good to have that prepared
and to ask about that patient's
548
00:29:57,830 --> 00:29:59,940
understanding of hospice before starting.
549
00:30:00,235 --> 00:30:02,335
Dr. Carine Davila: I think taking
a moment to include the interpreter
550
00:30:02,335 --> 00:30:06,775
in the debrief is also potentially a
really important way of like, not only
551
00:30:06,775 --> 00:30:09,895
promoting your own sustainability,
but the interpreter's sustainability.
552
00:30:10,325 --> 00:30:14,105
Especially if we are engaging
individuals from cultures, backgrounds,
553
00:30:14,105 --> 00:30:17,755
or beliefs that these conversations
can really hard and sensitive.
554
00:30:17,945 --> 00:30:22,485
Sometimes our interpreters share those
same cultural backgrounds and discomfort
555
00:30:22,835 --> 00:30:26,195
and they proceed anyways because they're
professionals and they do their job.
556
00:30:26,645 --> 00:30:30,275
But offering them a space to
acknowledge that that must have been
557
00:30:30,275 --> 00:30:33,845
a really hard conversation for them
to interpret can be really important.
558
00:30:33,885 --> 00:30:38,305
Many times people think before, but
I like to say bookend after too.
559
00:30:38,315 --> 00:30:42,405
There may be cultural nuances or side
conversations that the interpreter picks
560
00:30:42,405 --> 00:30:46,395
up, but may not necessarily be kind of
formally interpreting a side conversation.
561
00:30:46,635 --> 00:30:50,595
Take an opportunity to also ask them,
is there anything that you sensed in
562
00:30:50,595 --> 00:30:53,735
the room that I should know about in
continuing to care for this patient
563
00:30:53,735 --> 00:30:57,455
and family, and you sometimes get
gems when you ask that question.
564
00:30:58,965 --> 00:31:01,335
Patty: Alright, VeriGeri,
listeners, you've made it
565
00:31:01,335 --> 00:31:03,105
through another episode today.
566
00:31:03,225 --> 00:31:06,555
We talked about best practice for
having conversations about serious
567
00:31:06,555 --> 00:31:08,115
illness patients and their loved ones.
568
00:31:08,665 --> 00:31:10,515
Especially when cultural
sensitivity is needed.
569
00:31:10,695 --> 00:31:13,915
This episode was co produced
by Sam Ing and Patty Lee.
570
00:31:14,105 --> 00:31:17,595
Our peer reviewers were Dr.
Jason Lyou and Shaina Fuller,
571
00:31:18,015 --> 00:31:19,085
a public health professional.
572
00:31:19,175 --> 00:31:21,545
Our show notes and graphics
editor was Jai Daniels.
573
00:31:21,705 --> 00:31:25,875
Remember to check out our show notes
on verigeripodcast.com, subscribe to
574
00:31:25,875 --> 00:31:30,255
our podcast, follow us on Instagram,
and we will talk to you next time.