Jul 6, 2020
Dr. Pennell and Dr. Jennifer Tsui discuss the processes that lead to suboptimal EOL care within Medicaid populations and among racial/ethnic minority groups.
Hello, and welcome to the latest JCO Oncology Practice podcast, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all recordings, including this one, at podcast.asco.org.
My name is Dr. Nate Pennell, medical oncologist at the Cleveland
Clinic and consultant editor for the JCO OP. I have no conflicts of
interest related to this podcast, and a complete list of
disclosures is available at the end of the podcast.
Aggressive care at the end of life for cancer patients is widely
recognized as poor-quality care. And by aggressive care, I don't
mean aggressive supportive care or hospice, but rather
inappropriate interventions, like chemotherapy or hospital and ICU
admissions, near the end of life that rarely improve outcomes and
often actually worsen quality of life.
Efforts are being made to educate physicians and cancer patients to
try to minimize aggressive treatments near the end of life and to
help as many patients as possible benefit from things like hospice
benefits and appropriate end-of-life care. However, not all
patients receive high-quality end-of-life care, and there may be
differences in end-of-life care in various populations. For
example, how do race and things like Medicaid status impact
aggressive care at the end of life?
With me today to discuss this topic is Dr. Jennifer Tsui, Assistant
Professor in the Division of Population Science at Rutgers Cancer
Institute of New Jersey. We'll be discussing her paper "Racial
Disparities in Health Care Utilization at the End of Life Among New
Jersey Medicaid Beneficiaries With Advanced Cancer," currently in
press for the JCO OP. Welcome, Dr. Tsui, and thank you for joining
me on the podcast.
Thanks so much. Thanks for having me. I have no conflicts of
interest with this study whatsoever.
Dr. Tsui, can you please tell me a little bit about what exactly
constitutes high or low-quality end-of-life care?
Sure. I mean, I think that, in this study in particular, we wanted
to focus on guideline-related end-of-life care. So we wanted to see
if it was possible to take a look at patterns at the end of life
for breast and colorectal cancer and stage cancer cases and see
sort of what the patterns were in relation to adherence to
guideline adherence and what they should be receiving at the end of
life.
And so that included a set of measures around aggressive care
related to hospitalization in the last 30 days, emergency
department visits in the last 30 days of life, an ICU admission in
the last 30 days of life, and chemotherapy in the last 14 days of
life. These are guidelines that have been discussed and published
by national organizations. And we also looked at hospice
enrollment. So we looked at whether there was any hospice
enrollment and whether there was hospice enrollment in the last 30
days of life, I'm sorry.
Are there already data existing for various disparities in
end-of-life care among different racial groups or patients of
different socioeconomic status?
There are. So there have been a few prior publications before our
study that have shown that Medicaid patients frequently-- not just
for end-of-life care, but cancer care in general-- that Medicaid
patients receive lower quality of care. And there were studies done
prior to ours that did show, I think, in New York, for example,
that Medicaid patients had lower-quality end-of-life care compared
to Medicaid and privately insured patients.
We have seen other studies also mentioning disparities by race in
terms of quality of end-of-life care. However, I don't think-- some
of these studies have focused on different populations and cancer
sites. So some of the studies I mentioned looked at AYA, adolescent
and young adult cancer survivors. Other studies have focused on
other cancer sites.
And also, these were studies that were conducted in earlier time
period. And what we know is that, given all that's happened since
the Affordable Care Act and Medicaid expansion in several states,
sort of the Medicaid population has changed, but sort of health
care delivery has been redesigned in different ways. And so that
was really why we wanted to look at this issue sort of in more
recent years and during a period that spanned Medicaid expansion
within New Jersey.
You know, that's helpful to understand what sort of prompted you to
do this. So why don't you tell our listeners basically how you
designed your study.
Sure. So this was a large data linkage that we established within
the state of New Jersey to better understand cancer care quality
for breast and colorectal cancer patients in general, so beyond
just the stage IV cancer patients, the patient's diagnosis at stage
IV, but breast and colorectal cancer patients in general.
So we worked with our New Jersey State Cancer Registry, identified
all our breast and colorectal cancer cases that were diagnosed
between 2011 and 2015, and then we linked those with our New Jersey
Medicaid enrollment and claims files. So this was a study that was
done in partnership with our Rutgers Center for State Health
Policy. It was conducted sort of with ongoing input and feedback
from both our State Cancer Registry as well as our Medicaid
program. They've seen sort of findings related to this and other
research questions we've had throughout the process.
And what we really ended up with was a very rich data set that not
only gave us all the tumor characteristics that are available in
the cancer registry, but also the health care utilization patterns
and Medicaid enrollment characteristics that are available on the
Medicaid claims and Medicaid program data side.
And how well did this database capture all of these measures of
aggressive end-of-life care, so ED visits and chemotherapy and
such?
Since we did focus on those who were continuously enrolled in our
state Medicaid program, we were able to go through our claims data
and be able to, using billing codes, identify things like ED
visits, et cetera. This data set only includes cancer cases up to
age 64. So we didn't include people who may be dual enrolled in
Medicare or have Medicare claims.
We also tried to create some other restrictions so that we can get
at just the people where we had a definitive diagnosis month and
year and follow them through their death. And so we did use the
prior studies that I mentioned earlier to see what kind of codes
were used there.
We have quite a multidisciplinary team of collaborators. I worked
with quite closely the first author here, Annie Yang. Soon-to-be
Dr. Annie Yang is in medical school here at the New Jersey Medical
School. And so we did try to be as comprehensive as we could with
the codes we used to identify those utilization patterns.
OK, so why don't you tell us some of your findings?
So I would say that the overall finding is that 62% of these stage
IV breast and colorectal cancer patients received at least one
measure of aggressive end-of-life care. So out of those four
individual measures, 2/3 received at least one, which seems quite
high. They ranged from 27% having at least one hospitalization to
34% receiving chemotherapy within the last 14 days of life.
What we found is alarming, and it's sort of a call to action for
addressing racial and ethnic disparities in health care, is that we
found that our non-Hispanic Black patients had a higher odds of
receiving any one of those aggressive end-of-life care measures
after controlling for other factors. So we did find this
racial/ethnic disparity in non-Hispanic Black patients having more
aggressive end-of-life care compared to our non-Hispanic white
patients, even though these are all the same Medicaid program. This
is within one state.
And so it did point to some need to better understand what is going
on within the health care system, within the health care encounter
between patients and physicians towards the end of life and what
needs to be done to address these disproportionate rates in
end-of-life care among racial/ethnic minority patients.
When you talk about these numbers, like 2/3 of patients having
aggressive end-of-life care and 39% enrolling in hospice, how does
that compare to what would be considered a more appropriate level,
say, the private insured patients?
So we didn't compare it to privately insured in our state, but we
did look at what was published in other states. In New York, for
example, I think we had a slightly higher proportion of Medicaid
enrollees with stage IV breast and colorectal cancer having more
aggressive care. So we did see higher rates. So while we can't
compare within our state alone, we do see that the rates are
slightly higher than other published studies.
Well, I guess I'm just trying to figure out, is aggressive
end-of-life care something that commonly happens to all Americans
in general, or is this vastly more in this population than what we
would expect?
In the general population?
Yeah, in the general--
You know, I don't-- yeah, I don't have those rates and what our bar
should be at baseline, to be honest. I do think that what we see in
the end-of-life hospice literature is that there is suboptimal use
of hospice care. And what we found was, again, here also sort of
suboptimal use of hospice care in this diverse, low-income,
Medicaid population.
No, clearly, clearly, definitely so. What are some reasons why
Medicaid patients would be more likely to have aggressive
end-of-life care, do you think?
I think Medicaid patients sort of broadly often have higher rates
of comorbid conditions when they're diagnosed with cancer. There
are complex social factors related to the Medicaid population in
terms of being low-income, in terms of other social determinants of
health and social needs that increase barriers to care or barriers
to high-quality care or continuity of care.
In another paper that we published that focuses on this data
linkage in the population and this data linkage, there was a lack
of primary care utilization prior to cancer diagnosis as well as a
lot of the cancer patients in Medicaid enrolling in Medicaid upon
diagnosis, right? So I think that there are sort of just several
multi-level factors that contribute to why there may be higher
rates of aggressive end-of-life care.
I think, from a patient perspective, there is a literature out
there on the need for communication tools and sort of interaction
and inclusion of caregivers that are a part of the decision-making
in end-of-life care. Certainly, we've seen in the literature for a
while the issue of providers and providers not only being sort of
culturally competent or racial and ethnic concordant, but having
the tools that they need, both for the physician or the health care
team, to have these end-of-life discussions. So I think it's very
multi-level and certainly not just either on the patient or the
physician.
Even within the Medicaid population, so independent just of the,
say, the financial pressures that would lead one to enroll in
Medicaid, what you showed was that non-Hispanic Black patients had
a much higher rate of aggressive end-of-life care even than the
overall Medicaid population. And why do you think that would be
true?
Yeah, so after we finished the analysis for this, we definitely did
reach out to other colleagues who have worked in the communities
more closely within New Jersey, within the non-Hispanic Black
population across New Jersey. We've also talked to our state
Medicaid program to, one, think of sort of action items for how to
better understand what we're seeing in the quantitative
administrative data here, and then two, how to engage communities
to understand what to do next about this.
So from the literature and from sort of racial/ethnic disparities
literature, we do know that there is often mistrust of the medical
system. There's underutilization of preventive screenings, and
there are physician biases and structural biases that occur along
the way, so again, the multi-level factors that impact why there
may be disproportionate aggressive end-of-life care in the
non-Hispanic Black population. You know, we can't answer those
questions with Medicaid claims and enrollment files. We can
identify these patterns.
And I think what our research team has been in communication with
our state Medicaid program to do next is then figure out, how do we
talk with some of these communities across the state to figure out
what the appropriate community-level education tools might be
needed to improve an understanding of what end-of-life options are,
but also to focus on the hospitals and health care systems that may
be disproportionately seeing some of the-- that may be seeing
higher proportions of non-Hispanic Black patients, and how can we
engage the health care teams within those settings to figure out
what can be done at the health care delivery level?
Do you think we have enough information to make interventions now?
I mean, are there-- how do you think, aside from further study and
trying to understand it better, we might, in the short term,
improve rates of quality end-of-life care in these high-risk
patients?
We've seen-- and we've talked about this, I think, in this field
somewhat-- is, one, there are guidelines. And just having health
care teams, providers, hospitals understand where they are, sort of
tracking where they are in rates of aggressive end-of-life care and
in hospice enrollment, and having that feedback and audit loop to
kind of look introspectively within the health care delivery
setting, I think is one option that we've seen in terms of trying
to increase quality and increase adherence to guidelines for other
things.
And then I certainly think that there might be a need for
community-level interventions around, what are the barriers to
hospice enrollment? Or where is the lack of awareness and knowledge
around end-of-life care options? And what does it mean to reduce
interventional care, right? And what does it mean for communities?
I think that targeting those aspects and having a dialogue that is
responsive to the community-level needs are probably ways that we
can start.
I think that makes sense. I mean, as an oncologist, a city with a
high minority population, I think improving the cultural competence
and being able to establish a level of trust with patients who may
have an inherent distrust of the medical system, especially when
you're talking about something like that's as counterintuitive as
trying to recommend not doing more aggressive care, it's certainly
a complex conversation and definitely would require a level of
trust and communication in order to do that properly. So I
completely agree with you that I think, on the community level, the
interventions will have to involve that if it's going to be
effective.
So Dr. Tsui, thanks so much for joining me on the podcast
today.
Thank you for having me.
And until next time, thank you to our listeners for listening to
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