Progressing with Partnerships: Shared Decision Making Among Vulnerable Groups


TRINETRA HALDAR GUMMARAJU:
I welcome Dr. Monica Peek to introduce her session. And, of course, we
already know, she is an associate
professor of medicine, a Bucksbaum senior faculty
scholar, and associate director at the MacLean
Center for Clinical and Medical Ethics at the
University of Chicago. Please welcome her. MONICA PEEK: All right. So I’m delighted to be
back today with you all. And the title of the talk
now is Shared Decision Making amongst racial and
ethnic minorities, which sounds a whole lot like what
I talked about yesterday. So really it’s a continuing
of a conversation that we had yesterday. So the first few
slides we’re just going to sort of recap
where we left off, and then continue
our conversation. So again, just acknowledging
the various centers where I sit at the
University of Chicago. And then reminding us the three
core domains of shared decision making, including information
sharing, deliberation, actual decision making
and implementation. And then how is social identity
important to shared decision making? And today we’re going to lean
a little more heavily into race and ethnicity, but as just one
of the many social identities that people carry that we
talked a bit about more broadly yesterday. And so this being sort
of an incomplete list of many of the social
identities associated with social power
that we all have, including gender
and gender identity. We had a very robust
conversation about that and sexual orientation,
about ability and disability, chronic pain, age,
immigration status, many other social
identities which impact our ability to
navigate our world, and impact our lived
experience in society. So again, this
rather busy slide, which just tries to show how
shared decision making is overlaid with these
various social identities, how we see ourselves,
how we see other people, and how those relationships
really influence our ability to share power in the
clinical encounter, and share in decision
making processes about the diagnostic
evaluation and treatment evaluation, treatment
plans between patients. And patients being
sort of a placeholder for patients and their families,
and their chosen families. So friends, family,
support networks. And providers. And providers being a place
holder for the entire health care team, those who
are providing care, including a range of physicians,
nurses, behavioral health workers, anyone who’s involved
in making those decisions. All right. So Marshall is on
this paper, a paper that we wrote about
barriers and facilitators to shared decision
making, specifically amongst African-Americans
with diabetes, which is the patient
population that I study most. And what we found– we actually wrote this
paper before the one that had all the
conceptual models, but what we found is that many
of the barriers that patients reported in our
qualitative interviews were ones that mapped
out years later on to these conceptual models. Ones around power imbalance
related to social identities. Other things like
limited health literacy, which can be a type
of social identity, related to social identities. Self-efficacy. That’s down here in the model. Trust shows up several
different places in the model. Normative beliefs. And so those are
some of the things that are reflected in the
lenses through which people see and view the
encounters that they’re having with other
people, and view the identities that people– who they are and the
identities that they have. The sense of fear and denial
about the diseases that they carry, fear and denial about
the kinds of health care experiences that
they are anticipating having with providers. And I think there’s usually
one other thing that’s on that list. But essentially that there
are a number of things that marginalized populations,
in this case African-Americans with chronic disease, report
as being barriers to sharing in the decision making process. And we also asked
them about things that could facilitate the process. And one of the
things is the first S in the share model from
Arc, which we had also talked about yesterday. So patient engagement
and invitation. So when physicians actually
ask people, invite them in to the share process,
that is something that helps people feel
more welcome and more able to engage. The value and quality of the
patient provider relationship. When people feel like their
health concerns are validated, it may be that their health
concerns, turns out, are not important, or are not a
serious threat to their health. But at least having
a health care provider listen to that concern
and validate that, I hear you. Like huh. I’ve sat in here and
listened to your concern about this symptom. As it turns out,
it’s just heartburn. It’s really not heart disease. It’s acid reflux. And we can easily treat that. But it’s completely
understandable that you’d be worried that
you’re having a heart attack. And so having a sense that
people’s concerns are validated and not dismissed is
particularly important I think for patients whose
voices are routinely dismissed, whose voices are not
heard in society. And so having their voices
heard in a clinical encounter, even if ultimately their
health beliefs aren’t accurate, is important to having a safe
space in that patient provider relationship, and facilitating
the idea of a shared strategy for engaging
with their providers. And then having providers
be accessible and available. And by this I don’t
mean office hours, but being emotionally
and intellectually present during the
clinical encounter. So those are good things. All these things are free
and don’t require changes in health care processes
and extra money. It really just requires how we
are interacting with patients to help the process
along to improve, ultimately, health outcomes. We also were interested. I’m going to run
through two papers quickly, and then talk a
little about some of the work that we do to intervene. We asked the same
population how they define shared decision making. So we have a good understanding
of how, in theory, lots of people have approached
the idea of shared decision making. Again, these three
sort of core domains around information
sharing, deliberation, implementation of the plan. And when we talk to
African-Americans with diabetes, what we found is
that it looked more like this. And so there’s a whole
lot of stuff going on. I’m afraid to use the pointer. But the two things that
I want to point out when we asked people to describe
what a shared decision might look like to them based on
their clinical experiences with their providers
is that many people reported having only a single
medical option presented to them. They had no idea that
for many conditions, or for any conditions, there
could be more than one way to treat a problem. Never in their life
had they been presented with more than one option. Like you mean to tell me
there’s more than one way to treat diabetes? Or there’s more than one
way to treat strep throat? And so their lived
experience had been, you have this problem. Here’s a prescription. And this is what you do. You go to pharmacy
and fill this. They didn’t know that the
doctor, in their own head, was thinking about
multiple options, but just giving them one. The other thing that
I want to point out is that when people
were in their own minds actively sharing in the process,
one of the things they would do would be to potentially
non adhere to care. That was their behavioral way
of enacting their decision. So if people could
not verbally say no, they would behaviorally say no. And so in their
minds, this was not a way of manifesting a lack
of interest in their care. This was not a way
for them to say that I am uninterested
in managing my diabetes, or getting treated
for tuberculosis. This was their
way of saying, I’m not comfortable with
the plan of care. I don’t understand
the plan of care. And so I am sharing
in the treatment plan by not abiding by
the treatment plan. And I may or may not
be telling the doctor that I’m not going to be
abiding by this treatment plan. And so when marginalized
populations don’t necessarily have a voice in the
encounter, or perceive that they don’t
have a voice, people will find a way to have their
expressed wishes manifest. And so we need to be aware
of the complex ways in which those behaviors may
present and be more flexible in our understanding
of those behaviors when we see them
back in the office, and not just assume
that people are not concerned about their health. I’ve never encountered anyone
who’s like, you know what? I’d really like to have my
diabetic foot amputated. Or sign me up for
a heart attack. I’ve never heard that. But we do see people all the
time with poor health outcomes. And I think that
people are always negotiating, to the
best of their abilities, what makes the most logical
sense for them at the time, given the information they
have about their choices. So we also do qualitative work. And so there’s a few
quotes that I always love cause I think
they’re fascinating. And so I’ll share
two with you today. And these are two about
the non adherents. One person said
the doctor told me I need to go to
the dermatologist to get this abnormal
skin growth evaluated. Now, the lady up there
at the checkout desk, I told her that I
didn’t want to go, that if this skin
growth goes down, then I don’t see a
reason to operate. So I’ll have to
think about that. And the interviewer
says, well, did you tell the doctor you
aren’t going to go? Oh, well, I didn’t tell my
doctor about my preference for not messing with– I just told her I would
go through with it. So the doctor says,
this looks horrible. Go see. Get it taken out. She’s like, sure. No problem. She gets to the checkout desk. Don’t make that appointment. I’ve decided,
doesn’t look so bad. If it gets worse, I’ll call you. And then I’ll follow up. And then she goes home. So this is her way of managing
the doctor’s preference and her preference. Another person said,
some African-Americans still don’t believe in
everything the doctors say. I have a neighbor, and
she goes to the doctor. And when she gets
the medication, she throws it in the garbage
can, which is interesting, because this is someone
who feel sick, who calls for an appointment,
waits two weeks to get into the doctor, sits in the
waiting room for several hours, gets roomed, talks to the
doctor, gets a prescription, goes to the pharmacy,
pays for the medication, takes it home, and then
says, this doctor’s trying to kill me. Throw that medicine away. So the complex
thoughts and feelings that people have about
the health care system and how to best
treat their health. Should I go? Should I believe? Should I trust? What to do? It’s very confusing for
people to try and figure out how to navigate the
health care system. And when you have multiple
competing feelings inside, it’s really challenging. And so these are just
things to keep in mind as we are working
with populations that have a lot of competing
beliefs about the health care system. This is another paper that
Marshall was on with me. We did a series of papers
about the impact of race and shared decision making. And just to sort of
cut to the chase, we found that patients
reported a number of factors at the patient level where
race could negatively impact shared decision making
in both the information sharing realm, the deliberation realm,
and in the decision making domain. So patients who are
African-American might be less likely
to share information about symptoms and concerns. They might be less likely
to speak up and question the authority of physicians. People who are
marginalized and oppressed frequently feel that
way in all walks of life when it comes to institutions
of power and authority, to the police, to
educational systems. And it’s hard to switch when
you’re in the health care system and suddenly
feel empowered. Patients may be less likely
to adhere to treatment plans for a number of reasons, some
of which I just discussed. So one person said there were
very few African-Americans that would question the
treatment they get. And here’s the one
about the garbage can. For physician factors, patients
said that there are, again, a lot of potential
negative impacts of race on the same three shared
decision making domains. Such that
African-Americans maybe had their physicians less
likely to give information about explanations
and test results, may be less likely to
listen, really truly hear what their African-American
patients are saying, may be more domineering over
African-American patients and talk down to
them, and may be less likely to consider patient
preferences for treatment. And there are actually a
series of parallel studies that have done
audiotapes and videotapes of clinical encounters between
physicians and black patients, and have shown all
this to be true. But what we know is
that patients actually understand that and realize
what’s going on too. So the patients
that we talked to, which were different patients
from previous studies, are saying the very
same things that have been borne out
with other surveys, and with videotape
studies as well. And one person in our
qualitative interviews said that, my mother always
said that the doctors did not tell me the things that
would happen to me. And I only wondered
in my own mind whether that would
have been a race thing. Maybe they assumed that
she would not understand, and we should just do this,
do this, do this, do that, take this, take that,
without a reason why. But my mother was an
intelligent woman. So then last, someone
yesterday asked, can you stop being so abstract
and give me something to do? So here’s an
example of some work that Marshall and I are doing
in the city of Chicago, which is primarily right around
the University of Chicago, a working class,
African-American community. So we’re trying to do a
multi-level intervention to address the diabetes
disparities in our community using a range of different
things, some of which have to do with interventions
that are culturally tailored to increase patient empowerment
and shared decision making. So we call it the South Side
Diabetes Project for short. But the full name is Improving
Diabetes Care and Outcomes on the South Side of Chicago. And we have worked our program
around the chronic care model, which I showed yesterday. And the patient activation
core is just briefly what I’ll talk about
today, where we’re trying to get
patients to feel more empowered about their health. It’s a 10 week program. Actually is today Monday? No. Tuesday. Time has been suspended
since I’ve been in India. So yesterday we just started
another class, last night. Well, it’s Tuesday. So it’s Tuesday morning. It’s Monday night there. Right now. [LAUGHING] There is a class going
on at a church in Chicago that is kicking off
another 10 week class. So there is culturally
tailored diabetes education, along with a
curriculum specifically for shared decision making. And instead of talking
about these three domains, we talk about discuss,
debate, and decide. So the three Ds of
shared decision making. And we were just talking
about them with our patients. So have a friendly
discussion with your doctor about everything that’s
important to you. Have a friendly debate about the
pros and cons of the treatment plan. And then make a decision
that’s right for you. And so we do a
lot of things that fit the social cultural
experience of African-Americans with a lot of familial
involvement, storytelling, things that fit a strong
faith based orientation. Currently these classes are
actually physically located in the church, and draw a lot
from the religious history. Modifying traditional
diets, really leaning into the community
resources, using a lot of adult learning
theory around very interactive classes. We have a lot of
fun games and video that we’ve actually made for
the class, which I usually show a clip of. But I’m not doing that today. Because I usually have
challenges with technology. Anyway. So when we initially
evaluated the program– and we’re about to sort
of do our big wrap up of all the data. But our pilot work showed
that we had improvements in some measures of diabetes
self-confidence, measures of diabetes self-management,
like checking their feet, exercising, following
healthy eating, improvements in measures of shared
decision making at both the patient and
the physician level, and then more standard outcome
measures around diabetes controls, some improvements in
cholesterol, and, most notably, at the very bottom, on
that side over there we saw significant
improvements that lasted at six months of
self-reported mental health. And I will say that we
did not specifically have a mental health module. But we found, in general,
through all of our programs, that the idea of having a
safe space with social support meant a lot to the overall
health and well-being of our patients, and that
people enjoyed and appreciated the love that they received. And so people just
uniformly felt better. And so our measures of social
support and mental health have sort of uniformly improved
with all of the programs that we have that are part
of the South Side Diabetes Project. So a conclusion for that
program, our early findings show that combining culturally
tailor education with training and shared decision
making can improve the self-management,
shared decision making, sense of confidence,
and diabetes related health outcomes. And such strategies may serve
to reduce diabetes disparities amongst African-Americans and
potentially other socially marginalized populations. This was an older picture of
our team that was working on it. This is some of the
funders for that work. And I’ll just end with
another acknowledgment of people who helped support
me at the university. So I’m done. [APPLAUSE] TRINETRA HALDAR GUMMARAJU:
Thank you so much, Dr. Peek, especially for the
perspective that noncompliance is not a disinterest
in health care. It’s a reclamation of power. And moving on, the next
two speakers that we have, Dr. Nalin Mehta and
Dr. Mohit Joshi. So Dr. Nalin Mehta is
an additional professor of physiology at the
All India Institute of Medical Sciences, New Delhi. And he’s also the chairperson
of the Institutional Ethics Committee at UCMS, with an
extreme interest in bioethics and a passion for it. He’s also a very
passionate educator. And Dr. Mohit Joshi
is assistant professor of surgery at the All India
Institute of Medical Sciences. So please welcome these
two incredible people. NALIN MEHTA: What we plan
to do is have a chat. You let us know when to
shut up and when it’s time. And feel free to jump
in whenever you need to. And we want to hear
your perspective, for the simple reason
that the topic that has been given to me, religious
inequalities when it comes to shared decision making. Not too much has been written
about it or published. There are a couple
of good articles. But even they tend to harp on
racial and ethnic inequalities, rather than religious
inequalities, which are there, but we will now slowly try
and elicit or tease them out. So shared decision making. I presume yesterday
it was already discussed ad nauseum,
where it was realized that, in our country, shared
decision making is virtually not there. What? MOHIT JOSHI: [INAUDIBLE]. We have these kind of
examples every day, when, at the end of
the day, you speak to a patient, that these things
that look very nice when you talk about cancer, until
you tell them that you are suffering from this disease. These are the treatment plans. So they have these
two treatment plans. And then option A is like this. Option B is like this. There’s pros and cons of both. And ultimately, when you kind
of invest this much time, your empathy to the patient,
ultimately you receive a reply. See, doctor, do whatever
you feel is good for me. NALIN MEHTA: Yeah. It’s like the
doctor-patient relationship is a very paternalistic model. We do not delve in
the deliberative model or the confrontational model. Including our own
colleagues, doctors. They’ll come up and say, do
whatever you feel is right. That’s being polite. But we’ll flag the term empathy,
that it’s lacking almost. Now, when we come to
religious inequalities, these are a couple
of things which will get overlapped with one. Insensitivity. Religious insensitivity. And also ignorance. There’s one good
article by, I think, Aasim Padela and
Farr Curlin which talks about racial and
ethnic, and also mentions religious inequality. Now, you’ve probably
read that article. Now, how these affect the
health care and decision context with Islam, how these affect
the health care of the patient? One is they talk about
defining the health and healing within
the medical sphere and the religious sphere,
which we tend to overlook. I’ll give you an example how. Seconded by setting
ethical and legal standard for acceptable and non
acceptable therapies. We have got examples
for these as well. Right? A very, very basic
example would be using bovine or porcine products. Because some are acceptable. Some are not acceptable. And then last,
and not the least, by exposing adherence
to deleterious affects of social practices. For example, mutilating
the circumcision, for female circumcision. Now, these are
religious practices. But these do not
become inequalities. So now we will bring out issues
where there are inequalities. Now, as I understand
it, inequality would be where I refuse
to accept your fate, or I refuse to do
justice to you when it comes to health care
delivery because you belong to a specific race. Now, there are examples of these
where there have been instances where some doctors
have been rather callous in their approach to
people from a specific case. So if you have any examples
or any experiences, I would love to hear from you. Anybody? Where you felt–
yes, [INAUDIBLE].. AUDIENCE: [INAUDIBLE]. I don’t know [INAUDIBLE]. But I had some
[INAUDIBLE] in 2002. And the Medical
Friends [INAUDIBLE],, of which I am a member,
was among the few groups which went to the riots. And it was striking
that hospitals were divided on religious lines. So they were Indo
hospitals, inverted commas, and Muslim hospitals. And patients feeling
comfortable in going to a particular hospital
and not feeling comfortable, and not being made
comfortable also. Now, that was probably
periodic in the sense this was the immediate
aftermath of the riots. But it was quite striking
that health care, which we think is more
egalitarian, also suffers from the same social
divides which plague when there is a strife of some kind. So it has happened. So refusing to acknowledge
that is probably failing the purpose. NALIN MEHTA: No. We will be very honest
in our confessions and in our acceptances here. That is a thing that stood out. Yes, sir. AUDIENCE: [INAUDIBLE]
an American college. My assistant
professor, a Muslim, wrote the entrance
test to Bombay, got into a prestigious
medical college in Bombay for DM gastroenterology. And this happened just after
those Bombay terror attacks. And he actually, in many
ways, was the top student. But he was posted to the
fourth unit in the department. And that was the department
with the lowest load. And he was never given
endoscopies to do. He was given the task
of collecting x-rays, collecting lab forms. NALIN MEHTA: [INAUDIBLE] AUDIENCE: Absolutely. And when he went to search for
a place to stay in that area, nobody gave him a house. Eventually he got a house. He moved in with his
wife and his son. And they spray painted on his
car saying, get out of Bombay. We don’t need you here. He left the DMC. I mean, he left the [INAUDIBLE]. NALIN MEHTA: So
very unfortunate. So here, beyond
inequality there is a whole bunch of other stuff. Yeah. AUDIENCE: I do interact a lot
with the Tibetan community in Dharamshala. And I write to friends there,
friends who work there, run schools there. Most of them are still
getting their treatment in the traditional
Tibetan medicine way. In fact, even for some of the,
sorry to say, fatal ailments. Because they often
complain that there is discrimination in the
government hospitals there. And they are still
treated as refugees. [NON-ENGLISH SPEECH] Giving
medicine to you is useless. So the Tibetan community there,
because they are Buddhists, and they also believe in a
lot of alternative healing practices, that is one thing. But when they approach
the government hospitals or medical colleges
there for health care, they are discriminated against. So I know some
personal experiences. NALIN MEHTA: Thank you. I’ll just come to you. I’ll just take off there. The Tibetan city, in fact,
they have their own hospital. In fact, I was there
for a week once as a guest of his
Holiness, the Dalai Lama, and went around those. They’ve got wonderful systems. Now, one point that comes
out of what you’ve just said, we do not respect the locals
or the traditional healing. Western medicine has been
around for maybe 200 odd years. So we call ours alternative,
whereas modern medicine is actually alternative. Now, the problem is
we have alienated it so much that when you decide
that this is something which is going to help because
of your religious beliefs, the doctors tend to
absolutely disregard it. That, again, is being religious
insensitive, and inequality. For example, in a whole
bunch of religions, in Islam as well as in
Hinduism, and in Buddhism, there are times when you’re
not well you feel it’s a curse. You’ve done something wrong. Karma. Et cetera. Et cetera. You’ve heard all these terms? So in addition to
your treatment, you’ll require
that little meeting with the priest, or
maybe some small ritual, burning of a lamb for incense,
or flowers in front of a deity, or some prayers which
you believe will help. And you very strongly
believe it will help. And that is not permitted. The doctor comes. [NON-ENGLISH SPEECH] Get out. Take the priest out. Take the [INAUDIBLE] out. Those kind of things happen. Right? They are dirtying up the place. Yes. You had your hand raised. AUDIENCE: I want to
extend that point, because I also right on
the medical profession and avoidance. And lately whatever cases of
avoidance have been covered, there has been a narrative
that a specific community– and I’ve talked to a lot of
doctors who say that if you live in [NON-ENGLISH] of Mumbai,
or if you live in [NON-ENGLISH] of Delhi or Gujarat, a
specific community comes up. And because that is
also a larger reflection of the social distress which
is right now in the society. So how do doctors, in
general, have to address that? Because when a patient comes. And I know it’s also an issue of
there are lots of people there and there’s violence. But how do they tackle distress
when the patient comes? How do they talk to
them and try to make them understand so that
such situations don’t arise? Because there is a
deep mistrust which comes from the social distress. NALIN MEHTA: Mistrust. I’ll take that as
a keyword there. And the distress. I mean, the doctors,
when you have a deluge of patients coming
in, you’re not even thinking. So giving time to the patient
becomes very difficult. Mohit, when you are
in the trauma center? MOHIT JOSHI: Yes, sir. NALIN MEHTA: How much
time do you have? How are you? You don’t have time for that. But that is no excuse. There’s a wonderful book. Yes, sir. AUDIENCE: Sorry
to interrupt you. But there is a bit
of unease about the whole religious thing. And I’ll tell you
what my unease is. While I fully appreciate that
people’s religious beliefs need to be respected and
people have a right to those religious
beliefs, I think there’s a danger of conflating,
whether you like it or not, call it modern science,
or Western biomedicine, or Western science, and
conflating that with religion. And I think there is
an important reason why those things need
to be kept separate. Because religious methods,
practices, and beliefs are at times very
antithetical to the notion of how Western biomedicine
has a belief system, which is based on certain evidence,
and what evidence means, and all of that. So my concern is
not about respecting people’s religious
beliefs, because that’s a different notion,
versus saying we should adopt those
religious beliefs as part of a scientific process. And I think these two things
do need to be kept separate. MOHIT JOSHI: Is there a midway? Because you have to
have a midway then? AUDIENCE: Then find me a midway,
because religion and science are antithetical. MOHIT JOSHI: We cannot
separate it completely. NALIN MEHTA: This
is interesting. I’ll take up that debate. We’ll arm wrestle,
whatever, outside this. But he’s brought out a
very interesting point. One was the mistrust
that I flagged there. And I’ll carry it up. There’s a fantastic book
called The Spirit Catches You, and You Fall Down. [INAUDIBLE] This is a Hmong family from
Laos who settle down in the US. And they have this little girl
with the gestalt syndrome, intractable epilepsy. And they have their own
religious and cultural prayers. And the family gets involved. And they are being
treated in California. And they have their own thing. And the patient deteriorates
because of the personal beliefs of the Hmong family. The support system is immense. They are a small refugee family. Versus the beliefs
of the doctors. Now, antithesis
would be too harsh. Now, if you are
treating a patient, you’ve done a major surgery. And they say, we just
want to light an incense and have the priest come
and do some mantras. Or the [INAUDIBLE]
comes to bless them. Where is the conflict? But people are opposed to that. Now, it is insensitive,
or religious inequality. Call it whatever you may. Now, when it comes to ethics,
the onus is on the physician. I need to be sensitive
to your requirements. I need to be ethical
in my conduct. I have to be aware. The onus is on the physician. Now, when you talk
about Islam, in fact, I want to make one
thing very clear. And I appreciate what
Anan said when he spoke about Hindu Muslim rights. We tend to hide behind
political correctness and not say Hindu Muslim. The more we talk
about it, the more we will be accepting
that we have screwed up. And then we can come
closer and sort it out. So there is a solution. So the more you
hide it, it still is somewhere burning
and comes out. Smoking, alcohol, narcotics. These are all haram
when it comes to Islam. Now, it is acceptable in an
anesthetic or a painkiller. So we make issues out of it. Inequalities occur
when you do not give the patients– so the
shared decision making, where you can inform the patient, OK. This is the product. Is this OK with you? All the patient
might say is, no. I do not accept it. So we look for an alternative. The alternative may be
a little low on quality. Is that acceptable? You will probably
have a little issue. If the patient says
it is acceptable, the patient preferences you. Monica. Where is Monica? You mentioned
patient preferences. So when you do
discuss and decide the patient preferences in the
social and religious construct, we tend to say, all right. This is a cultural issue. When it is something
which is religious, and the patients are attached to
it, we cannot traumatize them. I mean, if you say
it is antithetical. There is always a way where
religion can be accommodated. You can’t have 100 people
coming in all the time in the hospital. That is fine. But you can give
them a little space. Meditation. Tibetan. When they talk of
meditation, why deny that? And there a couple
of books where there is evidence to say that– I forget the name of the author. AUDIENCE: There is a medical
review by [INAUDIBLE],, which is [INAUDIBLE]. NALIN MEHTA: And evidence says
that meditation, especially in cancer patients,
has gone a long way in improving longevity. AUDIENCE: Yeah. NALIN MEHTA: But we as doctors
and scientists, empirical, we believe anything that cannot
be counted, or quantified. AUDIENCE: But I wouldn’t
have a problem with that. NALIN MEHTA: There
is evidence for that. AUDIENCE: I wouldn’t
have a problem with that. NALIN MEHTA: No. No. No. No. No. No. I’m not saying you
have a problem. AUDIENCE: What I
would say, in fact– I think the issue which is
not– and I think [INAUDIBLE].. So I’m being tolerant of that. I mean, completely tolerant. I mean, I don’t [INAUDIBLE]. But I kind of [INAUDIBLE]. And I said something about how– AUDIENCE: How
rational [INAUDIBLE]?? AUDIENCE: How rational
is it to be [INAUDIBLE]?? But clearly I
respect your belief. And then someone who is not– NALIN MEHTA: No. No. No. No. AUDIENCE: But I
don’t have agreement. NALIN MEHTA: Absolutely. AUDIENCE: This is
part of science. And I’m willing to
[INAUDIBLE] into science. NALIN MEHTA: No. Also I’m not baiting you. I’m not baiting you. All I said was, there
is a middle path. Now, issue is– I said three– inequality,
insensitivity, ignorance, lack of awareness, et cetera. These are those that
are overlapping. Now, whenever there
is a bias, I’m going to treat
this guy like this. Oh, he looks like this. That bias is where
inequality occurs. There are some nations
that have a bias against specific religions. And if it’s a
policy, then there’s very little you can do about it. So even today some
[INAUDIBLE] patients– yes. Yes, sir. AUDIENCE: I’m just going
to build upon the point. I mean, there’s going to be a
large middle zone where it’s all consistent in terms
of equally good ways to get the same end, or people
agree upon the treatment, but it’s the style
of communication in the overall
framing of the issue. But I think there’ll
be some cases where there is that clash between
science and religious belief. So in the US, two examples
would be vaccination, where some religious
groups oppose vaccination. Another example would be– NALIN MEHTA: [INAUDIBLE]
for the Jehovah’s Witnesses. AUDIENCE: Right. MOHIT JOSHI: But that
brings the question, is it because of
religious inequality? Will it qualify for that? Or is it someone’s
personal belief? What about religious beliefs? Where’s the question
of inequality there? NALIN MEHTA: As to where
you are going [INAUDIBLE].. AUDIENCE: So one example
is the vaccination. Then it’s the
public health issue if there’s a significant number. There are I think
enclaves where this is going to be a significant
number of unvaccinated children who then pose a public health
risk to the wider population. Another example that’s been
in the news would be, like, a child that has a
type of cancer that would be responsive
to chemotherapy, but the parent, because
of religious beliefs, don’t want to have
a kid treated. So those are two cases where
it seems starker and harder to argue in terms of, what’s
the middle ground between those. NALIN MEHTA: Right. So now, let me
make this simpler. Let’s take the religion
out of that context. It’s just there is a
medication, and the parents refuse treatment. The patient is going
to die, a child. And we become a lot more
emotional when it’s a child. So when we talk of a child,
the parents refusing treatment for whatever reason. And then if we take the religion
out of it, it still is there. So my question
is, if I can agree with him and his preferences,
and he is happier with the overall treatment,
even if the treatment is maybe not 100%, maybe 80%, but he’s
happier, where’s the problem? He requires the treatment. It always doesn’t have to
be my way or the highway. So you cannot always entertain. But then you can always mediate. You can always discuss, and
ask for a little discount on that super
religious restriction where the patient might suffer. So explain. I think discussion
and deliberation– when you explain
the entire thing, for example, a narcotic
being given to a Muslim. He may be absolutely against. So these are exceptions
in this situation. This is the only option we have. If it is acceptable,
he or she says no. We talk with the family. At the end of the day, they
might compromise, because, again, when you are not well
or when you are traveling, some of these
things don’t apply. Right? You can always just– So there are ways
of going about it. The overall, or the overarching
need of the hour is to ensure. You used the word tolerance. Wonderful. We need to be tolerant. What Anan mentioned, the
issue there was far– I mean, there’s a
lot of history to it. It’s not just–
unfortunately we don’t talk of religious inequality. We talk of a little
bit of a bias. other issue of
this one doctor who had performed
female sterilization on all the patients
from a specific religion without telling them. And this was some
1,400 odd cases. MOHIT JOSHI: It was big news. NALIN MEHTA: Now,
that is criminal. And there have been instances of
similar actions abroad as well. Some of them say cultural. Or they say it is
ethnic or racial. AUDIENCE: [INAUDIBLE] NALIN MEHTA: Pardon? AUDIENCE: With disability
also it is common. Many women with disabilities
are placed on sterilization. And even the homes, even
the families agree to it. NALIN MEHTA: So that
is a societal pressure. No. Very well brought up. A wonderful point. In fact, there was this
huge issue in Australia, with the aboriginals, especially
the aboriginal women in jails, that they have to be
sterilized forcefully. And everybody OKed to it. One very interesting
thing closer to home– it happens all the time. Surgeons, please
raise your hands. I don’t know how many times. I will not be
operated on a Tuesday. I need to be operated
after 11:14 AM. AUDIENCE: Even deliveries
that [INAUDIBLE]?? NALIN MEHTA: I mean,
deliveries have not yet come– I was just going to
ask the gynecologist. You realize that I want to be
operated at an auspicious time. I do not want to be operated
on such and such a day. OK. So how hard is it? Deliveries. An incredibly pregnant woman. Sorry. [LAUGHTER] What I meant was,
about to deliver. Full term. I want to deliver
by section at 9:23, AUDIENCE: 34 seconds. NALIN MEHTA: 34 seconds. So [NON-ENGLISH]
is an auspicious. [NON-ENGLISH] is a
word for auspicious. So these are things that happen. Some of them found funny. At times the hospital maybe
stretched with resources to try and entertain
such things. But now these are things. Yes. AUDIENCE: Is that
a religious thing or is that consumerism
in health care? NALIN MEHTA: Now,
you could club it. But religious. I want this child to
be born at this time. This would be the [NON-ENGLISH]. AUDIENCE: But you see, there
is the question of consumerism. Because if you believe in
the notion of consumerism, then as providers, this
should actually enter into it. If you are opposed to
the idea of consumerism, then you will
[INAUDIBLE] oppose it, not because you oppose
that religious logic, but you are opposing
the consumerism of it. NALIN MEHTA: Wonderful. I like that thought. MOHIT JOSHI: But
that’s too complicated. NALIN MEHTA: No. No. No. No. You know the time when you want
to play the devil’s advocate? You negate it,
saying consumerism. It will always be touted
as religious intolerance. AUDIENCE: [INAUDIBLE] NALIN MEHTA: No. I want you to come up with this. Because see, unless we have
somebody stirring the pot, this discussion
is going nowhere. But there is that perspective. And I respect that perspective. In the government hospital
people will just hurry. I don’t have time for this. I’m not going to
wait just because you want to deliver at 11:00. But if you want this, please
go to a private hospital. They’ll do as per your wishes. AUDIENCE: That is the
consumerism [INAUDIBLE].. NALIN MEHTA: Exactly. So that point is taken. Because the government
hospital which is providing free service to everybody is
not going to cater to whims and fancies. And they’ll tell you,
we respect your wish, but here it would be impossible. This train doesn’t leave now. So you get one
from which station where it meets your time. So is there something
we’ve missed on religious inequalities. Yes. I’ll just come back to you. AUDIENCE: One of the very
basic things in shared decision making is to give information
and to offer choices. And this has been my
personal experience when it comes to contraception,
that if someone comes with the name of,
let’s say, Selma, so we’ll assume that
since her name is Muslim. So she’s a practicing Muslim. NALIN MEHTA: [INAUDIBLE]. AUDIENCE: Not all people who
are born to Muslim parents are practicing Muslims
and believe in everything. What is the general belief? And also, Islam is not
one set of beliefs. I mean, there are
many sex and mating. And sometimes people believe,
but then their actions may still be different,
because we all are negotiating all the time. Right? So because of this
and this happens, let’s not only blame doctors. This happens with a lot of ANMs
in subsectors and [INAUDIBLE] that do not offer certain types
of contraceptives to all people with Muslim names. And it’s like they never
were told about it, and never a choice
was offered about it. And to assume that all Muslims
do not practice birth control methods or contraceptives of
any choice would be very wrong. So many times these
assumptions are made. Absolutely. NALIN MEHTA: It’s lack
of awareness rather than [INAUDIBLE]. AUDIENCE: It’s like
assuming that all Jens avoid onions and garlic,
which is not true. NALIN MEHTA: No. But I think that’s
very well said. Selma example was awesome. I have a friend. I’m not going to
take names here, but there’s a friend of mine. We were doing our
masters in Toronto. We went out to a
pub in the evening. And here he is with– so what do you have? Coke or– he said, why
can’t I have a drink? Are you supposed
to have a drink? So we tend to take
it for granted. And that kind of
patronizing is also something which is
not appreciated. So why I’m bashing
the doctors here is because we are talking
about religious inequalities from the health care
provider point of view. Patients have their own demands. They can be insensitive. But right now the onus
is on us to provide, and to provide with the
equanimity and equality. Equanimity is also
something that gets disrupted at the drop of a hat. And we need to be tolerant. Mohit, do you have
anything to add? I have saved you some time? TRINETRA HALDAR
GUMMARAJU: [INAUDIBLE].. NALIN MEHTA: You were
supposed to tap my wrist. But I don’t know. But, please, will you
give her a big hand, because I haven’t heard a
voice as golden as that. MOHIT JOSHI: No. Really. Really. [APPLAUSE] So I hope that we kind of
attached on to the topic. It was a difficult one
to kind of figure out and to come up with. And before we had the session,
I had a long discussion with Dr. Nalin because we had
so many instances of religious [INAUDIBLE] in the practice. But I was kind of confused
at whether it is really inequality? Or is it somebody’s believing
in someone’s personal belief? [INAUDIBLE] I think
is kind of clear now. And I most appreciate the kind
of examples you brought in, because that made the whole
thing a little more clearer, at least to me. So thank you so much. [APPLAUSE] NALIN MEHTA: I’m all done. No more questions. TRINETRA HALDAR GUMMARAJU:
Thank you so much, sirs. I’m sure in the question,
answer session to follow, the room will erupt
several more times. But moving on to the next
talk, Dr. Charles Rhee, assistant professor of medicine
in geriatrics and palliative medicine is also the director of
hospice and palliative medicine fellowship and cardiac
palliative care program at the University of Chicago. Welcome, sir. CHARLES RHEE: So
first of all, I want to give a major thanks to the
University of Chicago at Delhi for inviting me
to speak in front of such an illustrious
group of participants. This is the first
time speaking here. I actually had the
opportunity to visit India 18 years ago as a backpacker,
kind of trekking through India. And that was quite an adventure. So this is very
different circumstances. There we go. And this is going to be a
little bit of a challenge, distilling what is
essentially about three or four separate hour long
talks into 20 minutes. But I think of it as a
tasting menu of kind of topics that I was given. So the astute
observer will notice, there’s already a slight
change in my title. So the title in your
program says Shared Decision Making in End of Life. Now, thanks to the esteemed
Dr. Rajgopal’s talk yesterday, we have kind of started
the talk about redefining palliative care. So I have deliberately
changed the title subtly. And we will talk
hopefully a bit about end of life care and
shared decision making. But I think, to start
with, is the first thing is kind of, well, to
better characterize the state of palliative
care, both today as well as in America. And I often start when
I give an introduction to a palliative care talk, I
start with this slide, just some very common misconceptions. Palliative care is the
same thing as hospice. Or palliative care is
only for dying people. Now, this mode of
thinking, to be fair, it’s important to look
at where it came from. And to be honest, it
wasn’t that long ago that those notions were
actually fairly accurate. So I don’t really
begrudge doctors who trained some time ago for
still having these notions. I make my best efforts
to educate them about how it has changed. But it is very
important to realize that the field of palliative
care, as was described by Dr. Rajgopal, this
supportive care model, involving not just the physical,
but psychological, spiritual, cultural aspects of
a patient’s person, did arrive from the modern
day hospice movement, which is often credited
with the invention by Dame Cicely Saunders
in England in the ’50s. And she herself coined
the term total pain, talking about the distress felt
by people at the end of life. So you can really actually
interchange these two labels. They were kind of
essentially synonymous. So what changed? Dr. Rajgopal referenced
this article. But I wanted to talk about
it a little bit more, because it is rare that you
can really put a firm date, like an exact time when a
field came into its own. But at least in palliative
care in the United States, this article was seminal. Jennifer Temel, who
is the lead author, is an oncologist
at Mass General, one of the Harvard hospitals. And in 2010 she authored
this paper, Early Palliative Care for Patients
with Metastatic Non Small Cell Lung Cancer. Now, the fact that this study
was even allowed to happen was revolutionary. Before this point, especially
in the oncology world, palliative care, that
was a dirty word. It meant that
oncologists had failed. It meant, keep those people
away from my patient. They’re going to
kill my patient. They’re going to convince
them not to do chemotherapy. I don’t want them
anywhere near my patient. So the fact that this
study even occurred is nothing short of a miracle. So to really briefly summarize
some of the findings, it represented such a major
paradigm shift in the field. So by modern standards,
with what we know today about palliative care, it
seems like a no brainer. Two separate cohorts, both
newly diagnosed metastatic non small cell lung cancer. So this was before the
age of immunotherapy. So prognosis was pretty
much six months on average, give or take, of course. So these were what we would
call terminally ill patients. However, these were patients
who, even knowing this at the time of diagnosis, they
still wanted maximal treatment with the extent of extending
the life for whatever period of time they could get. And remember, as I said, this
was before immunotherapy. The treatments were these very
toxic systemic chemotherapies that were very
harsh on the body. So the two arms
of the study, one, receiving standard
oncological care, and the other, receiving
standard oncological care, plus a palliative
care physician, kind of helping with symptom
management and overall support. So I mean, as I said, it’s
a no brainer by modern day standards. So the study was
designed to look at quality of life
metrics, which obviously the palliative care arm
did much better at anxiety and depression scores,
symptom burden. I mean, one would hope
that having a physician who is kind of attuned
to these things would improve those metrics. And that finding has been
replicated over and over again in subsequent studies. Now, the bombshell
finding that really made people stand up
and pay attention, as was referenced
by Dr. Rajgopal, was that the palliative care
arm showed a statistically significant– at the time. I’ll clarify that in a bit– increase in median survival
by almost three months. Now, this finding
was very puzzling. And the problem is this study
was not designed with mortality as a primary endpoint. So the problem is subsequent
review of the data, I mean, no one could
really figure out why. I mean, there’s many hypotheses. One is, patients who want to
pursue aggressive chemotherapy in this state meant the
main reason people drop out of treatment is
side effect profile. So perhaps if you had
someone more attuned to managing the side
effect, they could actually be treated longer. Dr. Temel, when she talks about
this paper, she will often say, very frankly, we oncologists
kill people with chemotherapy. So perhaps having a
physician help guide some conversations about
whether this is really appropriate for the patient. But the interesting
thing is, the more we cull through this data,
the more, to be honest, we kind of question how
statistically significant this was, or especially
how clinically significant this was. I mean, to be fair,
in the oncology world, even if you have a new drug
that has a one month survival improvement, all of a sudden
the headlines are like, cancer breakthrough. And they don’t quite
clarify that it means you get one
month, where it’s still a breakthrough in
the cancer world. So regardless, it
was the finding that made oncologists kind
of sit up and pay attention. And just at breakneck
speed from that point on, palliative care
became integrated within oncologic
practices to the extent that it is practically standard
of care in every major oncology center in the United States. So with that finding,
palliative care starts growing and expanding
into kind of non hospice domains. And this is a very common figure
that I use in most of my talks. So the top figure is
kind of the old school model of hospice and palliative
care, where you have diagnosis at the left hand side. Maximal life prolonging,
hopefully curative treatment, until you don’t. And at that point,
the primary physician, sub specialist throws
up their hands and says, I have nothing more for you. You need to go into hospice. And that’s where
palliative care took over. So that was the old model. The bottom figure is kind of
the more modern conception of where palliative care is. So as you can see, one
of our favorite catch phrases that Dr. Rajgopal
references, palliation begins at diagnosis. So ideally– and I
emphasize the word, because this is an
ideal situation– palliative care, which is
represented by the black box is introduced at the beginning
of a diagnosis of a life limiting illness. And the role of palliative care
at that point is very minimal. It might be just
rapport building, getting to know the patient. It very well may not
be more than that. And the maximal effort is still
towards kind of like belonging, potentially curative treatment. But as the disease progresses,
whether it’s cancer, or heart failure, COPD, renal
disease, the efficacy of those treatments
starts diminishing. And very often
symptom burden starts increasing at the same time. And so you start
seeing a kind of shift in the role of both sets of
providers, until finally, there is a point where there are
no more treatments available, and that hospice becomes very
appropriate for the patient. And then palliative care
assists with that transition into hospice. Dr. Rajgopal kind of– I was questioning whether
I would keep this slide. Because you kind
of referenced it. It’s a little outdated. It is 17 years old. But this is the WHO
definition of health care. And I just highlighted
what I think are kind of the well-known,
but very important facets of palliative care. So life threatening
illness, ideally we talk about palliation
beginning at diagnosis for many disorders. One of the issues
in the United States is the workforce shortage in
palliative care physicians. So there are
education efforts kind of teaching palliative care
skills to all physicians so that it doesn’t
have to be limited to this patient population. But it is still a
work in progress. But the important
things are, you, it is relief from pain and
other distressing symptoms. So that’s the physical. But then there’s the
psychological, the spiritual, and the cultural aspect. So this is really
perceiving the patient as a whole person,
not just based on their physical illness. So I want to switch
gears a little bit and talk a little bit about
kind of how this translates into real life examples. So one of my niche fields
at University of Chicago is I am attempting– so
as I said, palliative care and oncology are
pretty much very well integrated with each other. I mean, there is still
lots of work to be done. But it is standard of care. And still to date, the
majority of patients. Our servicees is still
probably oncology, because we have the closest
connections with them. My own area of expertise
is cardiac palliative care. So I’ve started
working quite closely with both the cardiologists
and the cardiac surgeons for over a wide
variety of cases. So I just want to, as
examples, put up two cases. And then I will talk about
kind of shared decision making models. And just kind of keep these
cases in the back of your mind. We might not even have
time to get back to them. But, for instance, these are
very representative of the kind of cases that I see. So case number one, a
68-year-old gentleman’s history of stage four, which is the most
advanced stage heart failure– ejection fraction 25%. So those of you who know,
that is extremely reduced. Normal is about 60%. Numerous other medical issues. Uncontrolled diabetes. Peripheral vascular disease. Current smoker. Admitted for heart
failure exacerbation. And this is usually a common
cause of readmissions. Usually patients like these
come back to the hospitals every other week,
every month or so. During admission he is found to
be in deep cardiogenic shock. Due to his medical
comorbidities he is not a candidate for what
we call advanced options, like a heart transplant,
or an LVAD device, which is a supplemental device. And so he’s placed on very
powerful IV medication called milrinone. Now, milrinone is, as
I said, very powerful. It’s what’s called an inotrope. It forces the heart
to pump harder. It makes the patient
feel subjectively better. But data says that it
does not include survival. If anything, it
reduces survival. I often talk with my patients
about medications like this. Sometimes they do
have simple things. They’re like, I feel better. My heart must be getting better. And I kind of
describe it as a whip. You can always whip a failing
workhorse to get more work out of the horse. But ultimately, that whip
is going to stop working. And if anything, it might
tire the horse out faster. And they sometimes
get that analogy. And so we were consulted for
initial assessment and goals of care, which I will talk about
that very amorphous statement. So to contrast a little bit
more kind of end of life flavored case, case number
two, a 60-year-old lady submitted after a mass
myocardial infarction, massive heart attack. And in complete
cardiopulmonary failure. So her heart doesn’t work. Her lungs don’t work. At an outside hospital
she’s intubated, placed on very powerful
IV medications, and then transported to
the University of Chicago where she’s placed on ECMO. That’s Extra Corporeal
Members Oxygenation. It’s about as
extreme of an example of what lay people
would call life support, as you can imagine. Like your entire work
of your heart and lungs is being done by a machine. Your entire blood
volume is pumped out of your vein in your groin,
circling in a machine, and pumped back into you. And I have to distinguish that
from pediatric ECMO, where it actually is wonderful. Infants are very resilient. They actually come out of it. It’s a great thing for them. But in elderly
patients, it’s sometimes what we call a
bridge to nowhere. So palliative care is consulted
as part of the ECMO protocol for family support into
a [INAUDIBLE] care. And this is a very new and
exciting collaboration. Usually when palliative care is
consulted for an ECMO patient, it’s like they’ve been in
the hospital for 40 days. The doctors are like, we
have nothing more to offer. And the patient’s
family don’t get it. It’s interesting. Dr. Rajgopal’s example
was where the doctors were the ones kind
of forcing patients to remain on life support. The cases I’m called on, it’s
often the other way around, where the patient is on life
support, and the doctors, they don’t want to be like they
make a unilateral decision, saying we’re going to
remove, because it’s not doing anything. But the families are often
paralyzed with that decision. And so we are often
consulted for that case. So I like to divide– when we talk about
goals of care, it really is a catch
all term for determining what the patient and/or
the family wants. So it’s shared
decision making based on the values of the patient. And by patient, I
mean the whole unit. So the patient as an individual
in the center of kind of a circle. The family unit,
the community unit. You might include church
and spiritual community, like religious groups. And a patient is more
than just the individual. And that’s really something
important that is often forgotten by the medical field. So again, as I said,
we’re often called to help facilitate discussions
with the primary team regarding possible therapies in the
setting of serious, sometimes terminal states. So I would like to divide it up
into four critical questions. So if you take anything
out of my talk, these might actually be
kind of valuable points. So the first, when I first meet
a patient, is agenda setting. Getting to know the
patient, or the family if the patient is unresponsive,
it’s in, say, an IC setting. Of all the things
bothering you, what do you want to talk
about at this time? It’s amazing. People look at me. The patients are like amazed. They’re like, you’re the doctor. I’ve never been
asked this before. And I am like, well, let’s talk. What do you want? What’s important to you? Advanced care planning. This has been
referenced in terms of– we were talking yesterday
about health care proxies and difficulty. But ask the patient especially
while they are earlier in their– hopefully we’ve
been involved earlier, where they are actually responsive. Who do you want to make your
medical decisions for you? And then there is
a separate question whether that person wants
to be the decision maker. But that is a separate debate. And these next two are really
the meat of, I think, my field. I like to tell my students
that the physical symptom management, that’s
actually pretty easy. Our armamentarium is
not that extensive. It’s the communication
skills, learning how to talk to patients
that’s the art of our field. Priorities. As you think about your health
and your life in the future, in the context of your
illness, after you’ve talked to all these doctors who
are saying that you are very sick, what is important to you? What is most important to you? And it’s interesting news. And you get a flavor of where
the patient’s mind is at. Some will kind of go to
the more like spiritual, like I want to be
at peace with God. Some will be like, oh,
I have a granddaughter I want to see graduate. Others will be like,
I want to be cured. And you’re like, OK. I know that oncologists
had said there’s no cure. So we are going to
have to work on this. But it gives you an insight
into that patient’s mind. And then finally, fears. This is so important, especially
for people who are ill. What kinds of
situations do you want to avoid regarding your
health and health care? And I’ll go a little bit out
of order and start with that. In the blue I kind of updated
with some of the phrases I use. I love asking this question
for the patients who are able to answer. Is there a quality of life which
you would find unacceptable? And the range of answers
you get is astounding. I mean, so there are
those who are like, for me, life is
an absolute good. I don’t care how long it takes,
how many machines you put me on. Give me life for every second. Every second counts,
regardless of quality. Others are like, I never want
to be dependent on someone. I don’t want to be
in a nursing home with someone else wiping my
bottom when I soil myself. These are very valid concerns. And no one ever elicits them. And also, importantly, going
back to advanced care planning, have you discussed your
wishes with the person you are designating? It’s great to designate
someone to make your decisions. But if you never talk to
them about what you want, then that kind of nullifies
the entire benefit of appointing someone
as your proxy. So especially when we
get involved earlier in the sorts of
disease, I don’t have to have all of these in-depth
very probing personal questions all at once. And that’s the point of starting
palliative care involvement early in a disease course,
like the first case, where the first meeting is
kind of getting to know. Ask some of the
simpler questions. And then you can start
planting the seeds of, well, this is important to talk
about with your loved ones. Have you thought
of talking to them? They’re like, oh, no. I’m too afraid. And say, well, tell me more. That’s also a very
useful phrase. Tell me more. It’s kind of the mantra of many
palliative care instructors. And it gets you so
much from the patient. So keeping these four
critical questions in mind. So let’s go back
to case number one. And so, for
instance, how would I proceed with a case like this? So this is a patient
ill, but not what we would call imminently dying. So while they might be
appropriate for hospice– I talked to them. And they’re not ready
for hospice mentally. That’s one of the issues
with heart failure. It’s like, when you feel
horrible, you feel horrible. But unlike cancer
where if you have progressive cancer
that you are dying of, there is a point where
hospitalizations kind of cease having any benefit. Heart failure, it’s really hard. You look like you’re about
to give up the ghost. You come back to the hospital. You get aggressively
[INAUDIBLE],, and you feel great. But maybe a little
less than a baseline. But you feel relatively better. So it’s more difficult with
this patient population. But kind of talking to
them about, so, OK, hospice isn’t what you want. Let’s talk about your
understanding of where you are. What have the other
doctors told you? And I ask them to
tell me, to get a sense of where they’re at. And then a lot of times
you kind of detect flaws in the communication with
other health care providers based on that. Although, as a
caveat, part of that could also be a
poor understanding on the part of the patient. But one of the things we do is
we really help bridge that gap in understanding a patient’s
understanding of their illness. How much time? AUDIENCE: [INAUDIBLE] CHARLES RHEE: OK. Perfect. Similarly, with
the ECMO protocol, these patients can be
alive for months, sometimes in what my mentor calls a
chronically unacceptable state. And it’s a horrible
burden for many families to think about
discontinuing life sustaining treatments, even when
they’re aware that there’s no– as I said, call it
a bridge to nowhere. There is no end point. You will just continue
on until something goes wrong with the
machine, or you make the decision to stop the ECMO. And so you don’t want to
come in on day 42 and be, hi. I’m the palliative care doctor. You’ve never met me. I’m here to tell you that
things aren’t going very well. I don’t know if the other
doctors have told you that. It’s much better to
meet them on day one. And you don’t even
ask those questions. You ask, how are you? The family. What can we do to support you? Tell me about this person. What were they like
before they got sick? And that makes it
easier on day 10, 14, 20, however long
it takes to start having some of the more
in-depth discussions about is this a quality of life
your family member would find acceptable? I mean, based on who
they were as a person. So I just want to leave you with
kind of an interesting adage. I don’t know who
the attribution is. But it really encapsulates
the complementary nature of palliative care. It’s adding life to one’s years,
not simply years to one’s life. And with that, that’s
pretty much it. Thank you so much for having me. [APPLAUSE] AUDIENCE: There
are five patients dying every minute because
of unsafe care globally. So for World Patient Safety
Day and for Dr. Rajgopal here and for Dr. Charles, this poem. Before you examine
the body of a patient, be patient to learn his story. For once you learn his
story, you will also come to know his body. Before you diagnose
any sickness, make sure there is no sickness
in the mind or the heart. For the emotions in
the man’s moon or sun can point to the sickness in
any one of his other parts. Before you treat a
man with a condition, know that not all cures
can heal all people. For the chemistry
that works on one patient may not
work for the next. Because even medicine
has its own conditions. Before asserting a
prognosis on any patient, always be objective
and never subjective. For telling a man that he
will win the treasure of life, but then later discovering
that he is going to lose will harm him more than by
telling him that he may lose, and finally, he may win. This is The Maxims of
Medicine by Suzy Kassem. NALIN MEHTA: Fantastic. Basically it just
says be human first and a health care provider next. AUDIENCE: [INAUDIBLE] AUDIENCE: All of your
presentations were wonderful. My question is directed
to you, Charles. The four critical
questions that you shared, with the exception of
the second one about appointing a proxy, really
sound like questions that a therapist would ask. Every one of them is
perfect for addressing issues of emotional
import in your life. So I have two questions. How much time in your
practice is spent on talking? And how much time is
spent on medicine? And the second is, what do you
do with the public perception that you may be the guy who
wants to come in and turn off the machines? CHARLES RHEE: Well,
really excellent question. So the first question, I
mean, the time, it’s variable. So I do mainly in
patient consultations. So I have a bit more luxury. I’m not bound to
a clinic schedule. I am bound by the number
of patient consults I get. But initial consultation
is usually an hour or more sometimes. The actual medicine, as
I said, our armamentarium of symptom alleviation
is not that large. And it’s rooted in
kind of basic medicine. We are a little bit more
comfortable with narcotics, and opioids, especially in
the setting of terminal pain. But that’s not that hard. If someone’s
seriously constipated, I can make them poop, basically. So it really is talking
with the patients. The second, the
public perception of palliative medicine. So that has also been slowly
changing over the last decade, thanks in no small
part to many kind of champions outside our field. I know someone has already
mentioned Atul Gawande’s book, Being Moral. That was probably one of the
most prominent works out there that really introduced the
concept of palliative care to the public, the
general public. And so it really is
kind of educating them. So it’s gotten to
the point where my colleague who does
a lot of outpatient palliative medicine in
oncology, they’ll be like– a person shows up for their
initial oncology visit, and they’re like,
oh, so when can I see the palliative
care doctor? It’s like, oh, wow. That’s kind of
opposite of what it used to be where the
oncologist is like, oh, you should see my colleague
who’s a palliative care– it’s like, why are you sending
me to palliative care? So it’s changing. So it’s about education. It’s about exposure, and
just reaching the public with all this messaging.

1 thought on “Progressing with Partnerships: Shared Decision Making Among Vulnerable Groups”

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