In the United States., psychiatric healthcare seems to be caught between two extreme ideologies...
Dr. Morgan Shields, Assistant Professor at the WashU Brown School in St. Louis, is back for part 2 after sharing her VERY personal experiences with the inpatient psychiatric setting. If you haven’t listened or watched part 1, make sure to go back one week and hit play.
On one side, there’s a push to expand inpatient psych beds—just add more space, and things will improve. On the other, some advocate for the complete abolition of psychiatric hospitals, believing that getting rid of them is the real solution.
Two drastically different views—but why is the debate so polarized? And is either approach truly the answer?
Check out the shownotes for further resources and ways to connect.
Takeaways:
- In this episode, we dive into the complex world of inpatient psychiatric care and its challenges, highlighting the need for better patient-centered practices.
- Dr. Shields emphasizes the alarming lack of accountability in psychiatric hospitals, suggesting that simply admitting someone doesn't guarantee quality care.
- We explore the contrasting ideologies in psychiatric care reform, from expanding bed capacity to advocating for community-based alternatives like peer respites.
- The differences in care quality between for-profit and nonprofit psychiatric facilities raise important questions about patient welfare and institutional priorities.
- Our discussion reveals how institutional betrayal can occur when patients feel let down by the systems meant to protect them, emphasizing the importance of trust in healthcare.
- Ultimately, we want to encourage listeners who’ve faced negative experiences in psychiatric settings to know they’re not alone, and change is possible.
*The views expressed in this episode are those of the guest and do not represent the views of Global Health Pursuit Podcast or the host. This discussion is for educational and entertainment purposes only and should not be considered medical advice or a generalization of inpatient psychiatric care. If you or someone you know is struggling with mental health concerns, we encourage seeking support from a qualified professional.*
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Is it the case that folks whohad been hospitalized at a for profit
had lower patient centeredcare and higher betrayal than folks
hospitalized at a nonprofit?
And basically what we find is.
Welcome to another episode ofthe Global Health Pursuit podcast.
(00:22):
The podcast where we explorethe world's most pressing health
challenges daily through abeginner's lens.
My name is Hetal Bamman.
I'm a biomedical engineerturned social impact podcaster and
I'm your host.
Dr.
Morgan Shields, Assistantprofessor at the Wash U.
Brown School in St.
Louis, is back for a part twoafter sharing her very personal experiences
(00:44):
with the inpatient psychiatric setting.
If you haven't listened orwatched part one, make sure to go
back one week and hit play.
We ended the episode speakingabout how we are actually capable
of creating humane anddignified settings for patients within
inpatient psychiatrichospitals, that things can be improved.
(01:06):
But it seems like in theUnited States, psychiatric healthcare
has been divided into two ideologies.
On one side, people arepushing for expanded inpatient psych
beds.
So basically add more beds andspace for patients and we'll be okay.
And the other is the completeabolition of psych hospitals.
(01:29):
So get rid of the hospitalsand we'll be okay, right?
Two very extreme differencesof opinion.
So which is it and what couldbe the reason for how polarizing
these two solutions are?
I view the polarized advocacyaround inpatient psychiatric care
(01:51):
in the United States as onereason why we lack accountability
in data.
We lack robust efforts tothink about quality improvement.
Why would we organizeourselves around doing that if there's
not any sort of pressurecoming from advocacy groups and the
advocacy groups who may be theones who would otherwise be putting
(02:12):
that pressure on our systemsor our payers, our regulators are
worried that if they putenergy and effort towards what they
call conditions improvement ofhospitals, that it would take resources
away from community inclusion.
And actually, you know, if youthink about these advocacy organizations
(02:33):
as being resource constrainedthemselves, it is true that they
only have so much time and energy.
And so if they are focused ontrying to understand what's going
on inside of these hospitalsand advocating for reform, that that
is time and energy that thatis taken away from really focusing
on advocating for expansion ofcommunity based services.
And I think that there mightalso be a concern that sustained
(02:57):
reform efforts would requiretaking money from community based
services towards hospital care.
Community based services.
What are they?
I was a bit confused and maybeyou are as well.
What does Dr.
Shields mean when she says this?
Is community based servicessimply outpatient psychiatric care,
(03:17):
or is it something more?
And if There is something more.
What else is there?
Was she saying that in orderto reform inpatient services, we'd
have to take money from thoseoutpatient services?
Yes, I.
Outpatient mental health care,but also social support, social welfare
services.
(03:38):
What a lot of people mightneed extends beyond just clinical
care and includes, you know,housing and other types of social
supports, transportation, et cetera.
And some people do need, youknow, maybe even temp temporarily,
not necessarily long term, butsometimes long term they need more
intensive services to live ameaningful life in the community,
(04:00):
which might look like a teamof people coming out to a person's
home and having more regularcontact with them rather than just,
you know, once a month therapy session.
And so that takes investmentand takes resources.
So that's some of the history.
The, you know, maybe thedisability rights advocates, maybe
back in the 1980s, were theones putting pressure on our systems
(04:22):
to improve accountability andconditions of institutional care.
They are sort of dedicatedtowards other efforts at the moment.
They are justified in that.
It just means, though, thatthere is a consequence of that sort
of vacuum of advocacy.
And on the other side of thespectrum, there is a push for expanded
inpatient services.
And that is kind of a morecomplicated, I would say, contingency
(04:45):
of folks.
It's pretty diverse.
I would describe it asincluding family who are feeling
like they don't know what to do.
They have a family member whois in crisis or constantly in crisis.
And the only way to get themany sort of crisis care is if they
are really in an extreme stateand they're at imminent risk of hurting
(05:08):
themselves or others.
Among family members, therecan be almost like a resentment that
develops towards the rightsthat currently exist to protect patients
or, or individuals fromunnecessary institutionalization.
Because sometimes it's seen asreally getting in the way of being
able to intervene, which mightrequire using involuntary methods.
(05:31):
You have to sort of allow yourfamily member to decompensate to
a certain point before there'sany sort of intervention to, to seemingly
help them.
Then you also have otherstakeholders which I would include,
you know, CEOs of the.
These for profits inpatientpsychiatric facilities as being part
of that contingency.
(05:51):
And medical professionals andproviders who are working on the
front lines and who might havea view that is a bit constrained
towards crisis.
And so maybe what they see isin the emergency department, there's
a lot of ed boarding.
We have a lot of people whoare coming and we cannot place them,
and that must mean that wedon't have enough beds.
(06:11):
It's logical to think that thesolution is to expand this service
and create more beds.
The situation is a bit morecomplicated than that for a lot of
people who end up boarding inthe emergency department.
The people who are more likelyto board tend to be the folks who
might be, quote unquote sicker.
They maybe were brought to thehospital by the police.
(06:34):
Maybe they're viewed as beinga risk of being dangerous or violent.
There's characteristics abouttheir disposition that might make
a receiving hospital not wantto accept them.
It's not the case that thereare just no beds.
It's a bit more complicated.
Are there organizations whowant to accept that patient, given
their risks and who theirpayer is and how much they're going
(06:54):
to pay?
Because it is a market basedservice in the United States.
And so, you know, maybe unlikeother areas where it's a single payer
system and sort of mostlyeveryone goes to like the same type
of hospital and it really isjust a matter of beds or capacity.
It is a bit more complicatedin the United States in that regard.
Thinking that just expandinginpatient services is going to solve
(07:17):
all of our problems is prettyshort sighted, not very creative,
and obviously neglects theutility of these services.
We don't know what ishappening to people inside these
institutions.
Right?
There's a lack ofaccountability and a lack of curiosity
or an expectation for actualtherapeutic benefit.
So almost like it's justassumed that containing them and
(07:39):
putting them into a hospitalis going to provide necessary benefit.
But we actually don't haveevidence for that.
And we do have evidence thatthere's a lot of harms being caused.
That's the tension here is,well, wait a minute, what actually
do we want patient services tobe doing for individuals and are
they achieving that goal?
What really stands out to meHere is how Dr.
(08:01):
Shields mentions that there isa lack of accountability when it
comes to putting patients intoa hospital.
They think that simply byadmitting someone that patients will
automatically benefit.
And in part one, she alsomentions that the psychiatric hospital
setting is almost like a black box.
She says that we don't reallyeven know what's happening within
(08:24):
the walls of the hospitaluntil patients speak up about their
experiences after the fact.
Dr.
Shields has even conductedsurveys in her research asking patients
about their experiences.
You can find those studies inthe show notes.
And we just spoke about howone reform ideology is to increase
(09:57):
the number of beds in psych hospitals.
But on the other end of thespectrum, there are people who want
to get rid of psych hospitals altogether.
And my question is really,where does this ideology come from?
Why do they use the term abolition?
And do these people think thatwe just completely get rid of crisis
(10:19):
support for these patients altogether?
Well, what I can also say justto, to be a bit more sympathetic
towards that side, because Iactually align in spirit more with
that side.
Some of this might be adifference in language and what we
mean when we say things like abolition.
In practice, there's been apush to deinstitutionalize.
(10:40):
When I think there isdiversity among those of us who want
to see more humane, patientcentered care, who do believe in
patients rights and lean inspirit more towards those principles.
There's diversity among us inthe extent to which we actually think
it's possible to sustain asociety without inpatient psychiatric
(11:01):
care.
Folks who do advocate forthat, they are not necessarily imagining
a world where we have nocrisis services at all.
It's just a bit different.
So as opposed to the standardhospital setting where it's sterile
and directed by psychiatry inthe United States, to be the director
of an inpatient psychiatrichospital, you have to be a medical
(11:24):
doctor, you have to have anmd, so you have to be a psychiatrist.
In most states, it's in stateregulations what those requirements
are.
And in most states that is the requirement.
And so it forecloses othersorts of mental health providers
being able to lead theseinstitutions like clinical psychologists
or social worker or whatnot.
And so it's a certain type ofprofessional who has a certain orientation
(11:47):
towards certain treatmentslike medication.
And they have a certain ethosand a culture around power and authority
over patients.
The folks who want to seeabolition want to see alternatives
to that.
They want to see crisisservices that perhaps are run by
peers, people who have livedexperience of mental health conditions,
(12:10):
mental health services andcrises, leading these services in
a more homelike setting asopposed to a hospital.
The thinking being that that'smore therapeutic.
These are called peer respites.
There is some evidence thatpeer respites can be beneficial to
patients.
There's been some randomizedcontrol trials, even sort of comparing
peer respite to inpatientpsychiatric care.
(12:32):
I mean limited randomizedcontrol trials that have demonstrated
superior benefits of peer respites.
There's challenges in doingthis type of research, right?
And there's challengesethically and randomizing people
to, to different types ofcrisis care, especially if they're
at risk of hurting themselvesor someone else.
There are limits in what welearn through standard research designs.
(12:56):
But all evidence points topeer respites or other alternatives
as being worthwhileinterventions to consider investing
in and potentially Expanding.
But you know, if it'sexpanding those services and scaling
them up, there's obviouslygoing to be a lot of implementation
questions and how do you bestsort of scale that up and you know,
(13:19):
who are those best for and whomight do better in a traditional
hospital setting?
There are always exceptions.
It's not that folks want tosee just a closure of hospitals and
then absolutely no servicesfor folks.
They want to see a reimaginedalternative to the hospital.
I did a little research onpeer respites because this is a new
(13:40):
term for me and it might be anew term for you.
According to the NationalEmpowerment Center, a peer respite
is a voluntary short termovernight program that provides community
based, non clinical crisissupport to help people find new understanding
and ways to move forward.
We apparently have them allover the United States and many even
(14:04):
offer free stays for those incrisis for up to seven days.
They are staffed and operatedby people with psychiatric histories
or people who have experiencedtrauma and or extreme states.
I'll link this website in theshow notes if you're curious about
learning more as well.
When it comes to inpatientpsychiatric care, there are also
(14:27):
two buckets of hospital settings.
I know this is all reallycomplex and confusing.
There's the for profit and thenonprofit hospital setting.
What I wanted to know was whatdoes it mean for care when it comes
to these two different typesof facilities?
Do they run any differently?
(14:47):
Do patients get treated betterin one facility or the other?
You would assume not, right?
So some people will tell youthere's probably not much difference
between a for profit or nonprofit.
In practice.
A lot of big nonprofit medicalcenters operate just like a for profit
in terms of being very profit oriented.
(15:07):
It's just that they reinvestthose profits within their organization.
It goes to salaries or a new building.
It just doesn't go toshareholders or it's not held as
profit by leadership per se,but certainly it can go to their
salary.
That is generally the casewhen it comes to general hospital
care.
When it comes to psychiatriccare, however, and other types of
(15:29):
medical settings such asnursing homes.
But say that the theory andthe evidence maybe is a bit different.
So let me back up and say theoretically.
Theoretically, if we'relooking at this through an economics
theory lens, healthcare haswhat we call lots of market failures
in the United States.
It's a market based service.
(15:50):
You have these privateenterprises and it's not just the
government that's providing services.
It's a market based service.
But there are market failures,meaning that patients, first of all
are not the ones who areusually paying for care.
There's the insurance companyas an intermediary.
So that makes things complicated.
Patients don't always havefull information about care quality
and they're not able to makedecisions on where to go for care.
(16:13):
It just means that the marketdoesn't provide natural consequences
to providers for providingcare that's poor quality.
So there's not always anatural incentive for providers to
make sure they're providingcare that is high quality and meets
patients preferences that isexaggerated when it comes to inpatient
psychiatric care.
Right, because there's evenmore constraints on shopping.
(16:36):
There's the use of involuntaryadmissions, patients perceptions
are totally discounted, et cetera.
So it's even more severe whenit comes to inpatient psychiatric
care in conditions where youhave these market failures.
Theoretically, we expect thatfor profits will intentionally exploit
those market failures tomaximize profits.
(16:56):
Okay, I want to say thesentence again.
For profit hospital settingsintentionally exploiting those market
failures to maximize profits.
That's a powerful statement.
And to understand it a bitmore, let's actually rewind.
Let's think about whatactually constitutes a market failure
(17:17):
in this context.
What's called information asymmetry.
So providers knowing moreabout the care quality that they're
providing than patients,especially before they experience
care.
So that's a market failurebecause it means that the consumer
is not able to take all of theinformation about the product and
make an informed decision onwhether or not they want to buy that
(17:40):
product.
And it means that providershave more power in that sense, that
they have insight into theproduct they're providing, but that
the consumers don'tnecessarily have that insight, especially
before they end up as patients.
And, and, and they mayexperience care, then they do have
more insights, but theirability to use that information to
(18:01):
change the behavior of theirfuture selves or others is constrained
because they don't have asmuch agency as you do.
If you're, you're shopping forshoes where you can read reviews,
see how people like youappreciated the shoe, or if the shoe
gave them back pain, you cando all of your due diligence and
then you make the decision ifyou want to buy that shoe or a different
(18:23):
shoe.
It's not the case withinpatient psych.
You end up at an emergency department.
You then are sent to ahospital that has a bed that is willing
to receive you.
You don't even know the nameof the hospital.
Sometimes it's not necessarilylike they even ask you, is this the
hospital you want to go to?
It's we found you a bed, sonow we're going to transport you
(18:44):
to this place.
We theoretically expect forprofits to exploit those market failures,
which is just to say to not bethat motivated to care about care
quality in the same way thatthey would if they had to really
compete for business.
They're not really competingon quality, you know, because there's
(19:07):
not consequences.
And so this might look likefor profits not investing in staffing
in the same way that theywould if there were more clear financial
consequences, because it's rational.
If there's not any financialincentive for them to invest in their
staffing, then why would they.
(19:27):
It becomes a tougher businessproposition to truly invest in the
patient experience of ahospital if it's not clear how that's
going to financially benefit them.
And if they think that they'reable to make a lot of profits by
keeping all of their bedsfilled at maximum capacity, even
if it means having two to fourpatients in a given room where there
(19:49):
could be conflict betweenpatients, risk of violence, that
might generate a lot ofrevenue, there is risk of lawsuits
and there is risk of staff turnover.
So, but that's a calculation.
But the calculations might endup being in favor of, let's just
sort of keep these bedsfilled, let's see how low we can
get away with having thin staffing.
(20:10):
Let's use a lot ofmedications, right?
Let's keep patients mostlysedated then also we don't have to
worry too much about conflictand staffing.
If everyone is sedated, youcan see how that can lead to over
medication and death and howthat is in conflict with therapeutic
evidence based models forviolence prevention which are based
(20:30):
in relationships and requirethe hard work of building trust with
patients and being mindful ofpower imbalances.
It's potentially a lot easierand cheaper to just make sure everyone's
on a sedative.
Theoretically, we should allbe concerned that there's been a
rise in for profit in privateequity ownership of psychiatric hospitals.
(20:51):
That that actually should justbe our baseline.
Our baseline should not be,I'm sure everything's okay, and,
and until we're provenotherwise, we're just going to be
very happy that now we, youknow, we have more beds in our community.
I think the assumption shouldbe this is a setting with a lot of
market failures.
Another word is extremevulnerability of individuals.
(21:13):
And why is there so much forprofit and private equity investment?
How are they making their profits?
Are they sacrificing care quality?
The argument for it is thatthey're able to be more efficient.
There's economies of scale.
Maybe they're able tonegotiate for higher reimbursement
from providers because theyare a more powerful organization.
(21:33):
If they own most of thehospitals in a network, then perhaps
they are able to negotiate forhigher reimbursement.
So I just want to sort ofvalidate that.
That could be a mechanism empirically.
As a researcher, it is veryhard to study a variation in care
quality across psychiatrichospitals empirically.
I'm a bit constrained in whatI can say is the actual difference
(21:55):
between the nonprofits and thefor profits.
I can say that nationally I'vedone some analyses looking at staffing.
The for profits have lowerstaffing ratios than the nonprofits.
That aligns with what we would expect.
They also have lower staffingthan the government owned hospitals.
The same is true with privateequity owned hospitals.
(22:16):
They have lower staffing.
I did some research looking atcomplaints, regulatory complaints
and use of restraint andseclusion in the state of Massachusetts.
The for profits in that statealso had higher rates of complaints
and higher rates of use ofrestraint and seclusion, which also
makes sense.
But you can imagine, you know,a hypothesis being that maybe the
(22:38):
for profits are actuallytargeting folks who have private
insurance and who are maybeless complex.
And there's evidence that atleast the big corporate chains are
making most of their profitsfrom Medicaid.
These are people who are poor.
They are not making most oftheir profits from private insurance.
If we're talking aboutresidential substance use treatment
(23:00):
facilities, the opposite is true.
Residential substance usetreatments seem to be targeting out
of pocket pay and private pay.
But with inpatient psych, theyseem to be targeting Medicaid and
poorer populations.
If you are working with adisenfranchised population who may
already have low expectationsfor care quality, you might be able
(23:21):
to get away with providingpoor quality care to a greater extent
and with less scrutiny andless pushback than if you were providing
care to folks who are morewell off in their families.
The takeaway that I hear fromthese differences in care quality
between the nonprofit and thefor profit hospital setting is that
we can't simply assume thatcare facilities are doing the best
(23:45):
for patients out there.
But it's important to haveadvocates in our lives, whether it
be our friends or family members.
And it's important to have asupport system that will ask the
questions to get you to thebest care possible instead of just
blindly following the system.
I do want to take a momentthough, because if you're listening
(24:05):
to this, it all might soundquite daunting.
And I want you to know thatI'm also learning right beside you.
After I posted part one,someone bravely commented this on
YouTube.
Thank you so much for speaking out.
Being an inpatient back in2008 was the most traumatizing and
harrowing experience of mylife, changed my perspective of the
(24:29):
healthcare system and only ledme down a rabbit hole.
For a long time, I was anti vax.
And while I no longer holdthose beliefs, I still stand by the
fact that the psych ward brokeme down and led to a fear of doctors
that persists to this day.
This is just one person'sexperience, but it's a powerful one,
(24:49):
and it's one where it cancompletely change the way you view
healthcare and the peopleoperating within it.
We want to trust ourphysicians, we want to trust the
nurses, we want to trust the system.
But when you experiencesomething like this, it's kind of
difficult.
What do we do first?
And how can we serve thisvulnerable patient population?
(25:11):
I wanted to know simply what Dr.
Shields is researching tolearn more about this unique patient
experience and whatopportunities there are to improve
care qualities.
This is what she's currentlyworking on.
I'm finishing up publishingpapers from an online survey that
we did a couple of years ago,where data is lacking and it's almost
(25:35):
impossible to go around andsystematically recruit psychiatric
patients in order to get atprevalence of experiences.
We did an online survey, so wejust recruited a convenience sample.
We had about 800 responses.
These are all people who hadbeen hospitalized in an inpatient
facility within the previousfew years.
(25:57):
And we gave them a measure ofpatient centered care.
So this measure includesquestions like, did you feel that
you were involved in your care?
Were you able to ask questions easily?
Did you feel that you wererespected and treated with dignity?
We also measured what iscalled institutional betrayal, which
(26:20):
is inversely associated withpatient centered care.
But institutional betrayal isa concept developed by Professor
Freed, who is at a universityin Oregon, and she's a clinical psychologist.
And it's basically thisconcept that when a.
When an individual isdependent upon an institution to
protect them, and thatinstitution fails to protect them
(26:43):
or even causes harm to them,that the psychological impact can
be profound, especially ifthere's no sort of attempts by the
institution to apologize or tomake amends with the individual.
And so inpatient psychiatry isa setting where patients are very
vulnerable and they are verydependent on the institution to protect
(27:04):
them.
So this concept, thisinstitutional betrayal concept, seems
to fit really nicely with thesetting of inpatient psychiatry.
We had a measure ofinstitutional Betrayal.
We also looked at COVID 19mitigation strategies.
That's its own paper that'sbeen published.
We were really interested inunderstanding the relationship between
patient centered care,institutional betrayal and whether
(27:28):
the patient reported thattheir hospitalization reduced or
increased their trust inmental health care providers, reduced
their willingness to engage inpost discharge care, whether or not
they had a 30 day follow upvisit, post discharge, et cetera.
We also looked at variationacross ownership.
We linked these data tosecondary data on facility characteristics
(27:52):
to see is it the case thatpatient centered care, if that's
really the nucleus of carequality, is it the case that folks
who had been hospitalized at afor profit had lower patient centered
care and higher betrayal thanfolks hospitalized at a nonprofit?
And basically what we find isvery, it's intuitive, it's an alliance
(28:15):
with theory.
There's a strong relationshipbetween their experience of patient
centered care or institutionalbetrayal and all of those outcomes
I mentioned.
So trust and willingness toengage, 30 day follow up and patient
centered care was lower at forprofits and institutional betrayal
was higher at for profitscompared to nonprofits.
(28:37):
So that provides some evidencebeyond, you know, our existing measures
of care quality are so limited.
And so this was the first timewe were able to demonstrate that
there is a relationshipbetween experiences of patient centered
care and these outcomes andthat these experiences differ between
for profits and nonprofits.
(28:57):
There is now empiricalevidence for that.
And then in the same survey wedid ask people in a free response
box, what are your suggestionsfor care improvement?
A really simple question.
And we had over 500 responses.
So it's a lot of qualitativedata to analyze.
Most people did not actuallywrite suggestions.
If they did, it was anything,that's the opposite of what I experienced.
(29:22):
And then they, they took it asan opportunity to share their story.
Something that I have found inmy research is that folks who have
lived experience really wantto be heard, they really want to
share their experience.
And they feel like there isn'tan outlet to share their experience
and to be believed and to betaken seriously.
So I find them to be veryengaged in our research projects.
(29:44):
And with this particularquestion, we did have essays from
participants where they werejust describing that, you know, their
experience in these narratives.
And so we wrote a paper andpublished that this year.
It's in the Journal of PatientExperience where we describe that
text.
And it was a tricky thing totry to frame since we were asking
(30:05):
for suggestions for improvement.
We kind of framed it asopportunities for quality improvement
through the perspective offormer patients.
But it is, you know, what wemight expect really investing and
improving relationships withinthese facilities, respecting patients
rights and autonomy, improvingcontinuity of care and efficiency
(30:27):
of systems, information sharing.
So actually answering patientsquestions and telling them what medications
they are being given and astep beyond that is actually engaging
in shared decision making withpatients regarding medications.
But a lot of folks I speak toand who we sort of interview in our
research say, I have no ideawhat meds I was given and nobody
(30:49):
told me what meds I was given.
And so that's, that's at.
That's a very low level.
Like, so to actually get toshared decision making is.
Is many steps above that is wehave people who said, I just wish
I knew.
No one would answer my questions.
This feeling of being treatedlike you're less than human, that
you're a piece of trash.
(31:09):
Can you imagine being treatedlike this or feeling like you're
less than as a patient withinthe inpatient psychiatric setting?
No one wants to feel this way.
I wanted to know, is there away that after gathering all of this
research to providerecommendations to improve care quality?
And if there is, who do youprovide these recommendations to?
(31:31):
Is there a dance you have todo to make sure you don't quote,
unquote, upset someone whoworks in these types of facilities?
How do you make someone listenor even simply have a conversation
around it?
I have not thought aboutsending out recommendations to individual
inpatient providers.
I have found that even havinga conversation with inpatient clinical
(31:56):
leadership, who are oftenpsychiatrists, can be really tricky
because they're on the front lines.
I'm sort of an outsider.
I don't really want to comeacross as though I'm telling them
how to do their job.
That triggers pretty extreme defensiveness.
And they basically see peopleat their most extreme state.
(32:18):
They don't always see thecontinuum of services or a person's
life and what is possible.
Unfortunately for folksworking within these types of facilities
for a long time, they havealmost become institutionalized in
their thinking.
I find when I try to gentlyreport back to people in leadership
(32:39):
positions, there's extreme defensiveness.
And I'm not someone who goesinto these conversations and says,
I think we should burn downall of the hospitals.
I try really hard to bediplomatic and to validate that they
have their own expertise thatI don't have and that this can be
a really hard job when peopleare in crisis.
Now, working with people incrisis can be really hard and not
(33:02):
always fun.
And burnout is real.
But for me, a group that Iwant to prioritize providing Feedback
reports to are folks withlived experience.
So my actual participants inmy studies, following up with them
and saying, here's what wefound, let me know if you disagree
with our conclusions.
(33:23):
And reporting back to thatcommunity in different outlets.
So the news sources that maybefolks in that community might be
reading, sharing on socialmedia and trying to have conversations
with policymakers, they'resort of another audience and payers.
It's not surprising to me thatinpatient clinical leadership in
these facilities would bedefensive if they were to hear recommendations
(33:46):
coming from an outsider ORresearcher like Dr.
Shields.
She isn't working day andnight within these settings, even
though she was a patient atone point in her life.
The remarkable thing thatshe's doing though is sharing her
findings with participants andpatients that she's interviewed.
To me, this supports andvalidates these individuals to know
(34:07):
that they simply weren't alone.
And maybe these facts couldeven trigger greater grassroots organizations
that can fight for change inthe future.
We do have in this countrywhat is called P and A organizations.
PNA stands for PAIMI andbasically they protect patients rights.
(34:28):
And PAIMI was created, Ibelieve in around 1986 or so, maybe
it was 1988, to protect peoplewho were in institutional settings,
people with serious mentalillness, quote, unquote.
And they are mandated to existin every state and they have special
authority to enter inpatientpsychiatric hospitals and to obtain
(34:48):
patient records and to observewhat's going on.
They oftentimes are legal firm firms.
So like they are advocatethrough law.
And I think that they are avery powerful mechanism that could
be leveraged.
They are on the ground, theybecause they have access to psychiatric
hospitals and they hear frompatients who've had their rights
(35:09):
violated.
And so I think that they are apotential powerful mechanism that
we could leverage, we couldthink about funding them better.
But that they have been thetarget by folks on the other side
of the advocacy spectrum havetargeted them and have tried to advocate
for defunding them because theargument is they care about patients
(35:30):
rights.
We need to defund them becausethey're getting in the way of being
able to intervene and useinvoluntary methods.
So the polarized advocacylandscape actually has very real
world implications that can bevery messy, very unfortunate.
But I did want to just give ashout out to the PNAS because I think
that they're doing really hardwork and they, they technically are
(35:53):
doing conditions work.
Right.
And so they, they are an exception.
We're coming to the end ofthese conversations with Dr.
Shields and she has given us alot to think about for example, how
people have very differentviews in terms of reforming inpatient
care, from adding new beds tothe view of deinstitutionalizing
(36:14):
the system and seeking outother types of services.
Instead we learned about peerrespites and even how care quality
could be quite different ifyou were admitted to a for profit
versus non profit psychiatric setting.
But most of all, I think theseconversations further solidify the
(36:34):
notion that these issues areso complexly nuanced in a way that
necessitates that somethingshould and must be done.
The work that Dr.
Shields is doing is without adoubt crucial, but we do need the
backing of more grassrootsorganizations and people who want
to speak out to continue to dothe work.
(36:55):
The last thing I wanted to ask Dr.
Shields was really, what doesshe hope that people who have gone
through an inpatient psychexperience or even had family members
who have personal experiencestake away from these conversations?
I would love for them to takeaway that if they have had negative
experiences that they're notalone and that there are many people
(37:20):
who believe them and who havealso had very negative experiences
and that that is not right andthey did not deserve that at all.
And that I hope they're ableto meet other people who also have
lived experience who can helpvalidate that for and potentially
even mental health professionals.
(37:40):
I know of many mental healthprofessionals, they tend to be social
workers or clinical psychologists.
But I also know psychiatristswho get this and who know and I know
that sometimes you need thatvalidation from a professional.
And so my wish is for folkslistening that they have that opportunity
if they want it.
(38:01):
But they're also valid in notwanting to engage in our healthcare
system at all.
I do, I just want to pointthat out.
That is a valid reaction to avery unjust experience that one might
have.
And if you've had reallyfabulous experiences while inpatient,
that is also valid.
And for folks who have hadextreme states psych like psychosis
(38:25):
or mania, what's tricky hereis this recognition that sometimes
medication is needed andsometimes you do need some sort of
intervention that potentiallya little bit more forceful depending
on where you're at with, withyour, your thinking and your reality.
And, and so I don't wantanyone who's feeling like, well,
(38:46):
but I really needed someone tointervene and I wasn't in my right
mind to, to think that I'minvalidating that, that that is a
reality.
But just to say I think we cango about this in ways that are more
humane and more humane formore people rather than there just
being, you know, theexceptions like, oh, I once had a
good experience or I knowsomeone who had a good experience,
(39:08):
it should be more of the normand the exceptions really should
be the negative experiences.
But it seems that it is theinverse right now and that that's,
you know, really not okay.
I want to thank Dr.
Shields for spending thisvaluable time to speak with us about
her work, her passions, andher experiences.
If you resonate with anythingthat was said in this episode or
(39:30):
last week's episode, pleaseplease comment below.
If you're watching orlistening on YouTube or Spotify.
If you're listening anywhereelse, please feel free to email me@hatallobalhealthpursuit.com
any questions, comments oreven concerns are totally welcome.
I'll link all the resourcesmentioned in the show.
Notes this episode wasresearched, hosted, produced, edited
(39:55):
all of the above by me.
And I do want to give a bigshout out to my coach, Anna Xavier
of the Podcast Space forcontinuing to push me to create a
show that is meaningful,educational and entertaining all
at the same time.
If you'd like to support theproduction of the podcast, there
are a few ways to do it.
As an independent podcaster, Iwould love to give you a shout out
(40:18):
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(40:39):
Write me a review on ApplePodcast and rate me on Spotify and
I'll see you next week.
Is it the case that folks whohad been hospitalized at a for profit
had lower patient centeredcare and higher betrayal than folks
hospitalized at a nonprofit?
And basically what we find is.
Welcome to another episode ofthe Global Health Pursuit podcast.
(00:22):
The podcast where we explorethe world's most pressing health
challenges daily through abeginner's lens.
My name is Hetal Bamman.
I'm a biomedical engineerturned social impact podcaster and
I'm your host.
Dr.
Morgan Shields, Assistantprofessor at the Wash U.
Brown School in St.
Louis, is back for a part twoafter sharing her very personal experiences
(00:44):
with the inpatient psychiatric setting.
If you haven't listened orwatched part one, make sure to go
back one week and hit play.
We ended the episode speakingabout how we are actually capable
of creating humane anddignified settings for patients within
inpatient psychiatrichospitals, that things can be improved.
(01:06):
But it seems like in theUnited States, psychiatric healthcare
has been divided into two ideologies.
On one side, people arepushing for expanded inpatient psych
beds.
So basically add more beds andspace for patients and we'll be okay.
And the other is the completeabolition of psych hospitals.
(01:29):
So get rid of the hospitalsand we'll be okay, right?
Two very extreme differencesof opinion.
So which is it and what couldbe the reason for how polarizing
these two solutions are?
I view the polarized advocacyaround inpatient psychiatric care
(01:51):
in the United States as onereason why we lack accountability
in data.
We lack robust efforts tothink about quality improvement.
Why would we organizeourselves around doing that if there's
not any sort of pressurecoming from advocacy groups and the
advocacy groups who may be theones who would otherwise be putting
(02:12):
that pressure on our systemsor our payers, our regulators are
worried that if they putenergy and effort towards what they
call conditions improvement ofhospitals, that it would take resources
away from community inclusion.
And actually, you know, if youthink about these advocacy organizations
(02:33):
as being resource constrainedthemselves, it is true that they
only have so much time and energy.
And so if they are focused ontrying to understand what's going
on inside of these hospitalsand advocating for reform, that that
is time and energy that thatis taken away from really focusing
on advocating for expansion ofcommunity based services.
And I think that there mightalso be a concern that sustained
(02:57):
reform efforts would requiretaking money from community based
services towards hospital care.
Community based services.
What are they?
I was a bit confused and maybeyou are as well.
What does Dr.
Shields mean when she says this?
Is community based servicessimply outpatient psychiatric care,
(03:17):
or is it something more?
And if There is something more.
What else is there?
Was she saying that in orderto reform inpatient services, we'd
have to take money from thoseoutpatient services?
Yes, I.
Outpatient mental health care,but also social support, social welfare
services.
(03:38):
What a lot of people mightneed extends beyond just clinical
care and includes, you know,housing and other types of social
supports, transportation, et cetera.
And some people do need, youknow, maybe even temp temporarily,
not necessarily long term, butsometimes long term they need more
intensive services to live ameaningful life in the community,
(04:00):
which might look like a teamof people coming out to a person's
home and having more regularcontact with them rather than just,
you know, once a month therapy session.
And so that takes investmentand takes resources.
So that's some of the history.
The, you know, maybe thedisability rights advocates, maybe
back in the 1980s, were theones putting pressure on our systems
(04:22):
to improve accountability andconditions of institutional care.
They are sort of dedicatedtowards other efforts at the moment.
They are justified in that.
It just means, though, thatthere is a consequence of that sort
of vacuum of advocacy.
And on the other side of thespectrum, there is a push for expanded
inpatient services.
And that is kind of a morecomplicated, I would say, contingency
(04:45):
of folks.
It's pretty diverse.
I would describe it asincluding family who are feeling
like they don't know what to do.
They have a family member whois in crisis or constantly in crisis.
And the only way to get themany sort of crisis care is if they
are really in an extreme stateand they're at imminent risk of hurting
(05:08):
themselves or others.
Among family members, therecan be almost like a resentment that
develops towards the rightsthat currently exist to protect patients
or, or individuals fromunnecessary institutionalization.
Because sometimes it's seen asreally getting in the way of being
able to intervene, which mightrequire using involuntary methods.
(05:31):
You have to sort of allow yourfamily member to decompensate to
a certain point before there'sany sort of intervention to, to seemingly
help them.
Then you also have otherstakeholders which I would include,
you know, CEOs of the.
These for profits inpatientpsychiatric facilities as being part
of that contingency.
(05:51):
And medical professionals andproviders who are working on the
front lines and who might havea view that is a bit constrained
towards crisis.
And so maybe what they see isin the emergency department, there's
a lot of ed boarding.
We have a lot of people whoare coming and we cannot place them,
and that must mean that wedon't have enough beds.
(06:11):
It's logical to think that thesolution is to expand this service
and create more beds.
The situation is a bit morecomplicated than that for a lot of
people who end up boarding inthe emergency department.
The people who are more likelyto board tend to be the folks who
might be, quote unquote sicker.
They maybe were brought to thehospital by the police.
(06:34):
Maybe they're viewed as beinga risk of being dangerous or violent.
There's characteristics abouttheir disposition that might make
a receiving hospital not wantto accept them.
It's not the case that thereare just no beds.
It's a bit more complicated.
Are there organizations whowant to accept that patient, given
their risks and who theirpayer is and how much they're going
(06:54):
to pay?
Because it is a market basedservice in the United States.
And so, you know, maybe unlikeother areas where it's a single payer
system and sort of mostlyeveryone goes to like the same type
of hospital and it really isjust a matter of beds or capacity.
It is a bit more complicatedin the United States in that regard.
Thinking that just expandinginpatient services is going to solve
(07:17):
all of our problems is prettyshort sighted, not very creative,
and obviously neglects theutility of these services.
We don't know what ishappening to people inside these
institutions.
Right?
There's a lack ofaccountability and a lack of curiosity
or an expectation for actualtherapeutic benefit.
So almost like it's justassumed that containing them and
(07:39):
putting them into a hospitalis going to provide necessary benefit.
But we actually don't haveevidence for that.
And we do have evidence thatthere's a lot of harms being caused.
That's the tension here is,well, wait a minute, what actually
do we want patient services tobe doing for individuals and are
they achieving that goal?
What really stands out to meHere is how Dr.
(08:01):
Shields mentions that there isa lack of accountability when it
comes to putting patients intoa hospital.
They think that simply byadmitting someone that patients will
automatically benefit.
And in part one, she alsomentions that the psychiatric hospital
setting is almost like a black box.
She says that we don't reallyeven know what's happening within
(08:24):
the walls of the hospitaluntil patients speak up about their
experiences after the fact.
Dr.
Shields has even conductedsurveys in her research asking patients
about their experiences.
You can find those studies inthe show notes.
And we just spoke about howone reform ideology is to increase
(09:57):
the number of beds in psych hospitals.
But on the other end of thespectrum, there are people who want
to get rid of psych hospitals altogether.
And my question is really,where does this ideology come from?
Why do they use the term abolition?
And do these people think thatwe just completely get rid of crisis
(10:19):
support for these patients altogether?
Well, what I can also say justto, to be a bit more sympathetic
towards that side, because Iactually align in spirit more with
that side.
Some of this might be adifference in language and what we
mean when we say things like abolition.
In practice, there's been apush to deinstitutionalize.
(10:40):
When I think there isdiversity among those of us who want
to see more humane, patientcentered care, who do believe in
patients rights and lean inspirit more towards those principles.
There's diversity among us inthe extent to which we actually think
it's possible to sustain asociety without inpatient psychiatric
(11:01):
care.
Folks who do advocate forthat, they are not necessarily imagining
a world where we have nocrisis services at all.
It's just a bit different.
So as opposed to the standardhospital setting where it's sterile
and directed by psychiatry inthe United States, to be the director
of an inpatient psychiatrichospital, you have to be a medical
(11:24):
doctor, you have to have anmd, so you have to be a psychiatrist.
In most states, it's in stateregulations what those requirements
are.
And in most states that is the requirement.
And so it forecloses othersorts of mental health providers
being able to lead theseinstitutions like clinical psychologists
or social worker or whatnot.
And so it's a certain type ofprofessional who has a certain orientation
(11:47):
towards certain treatmentslike medication.
And they have a certain ethosand a culture around power and authority
over patients.
The folks who want to seeabolition want to see alternatives
to that.
They want to see crisisservices that perhaps are run by
peers, people who have livedexperience of mental health conditions,
(12:10):
mental health services andcrises, leading these services in
a more homelike setting asopposed to a hospital.
The thinking being that that'smore therapeutic.
These are called peer respites.
There is some evidence thatpeer respites can be beneficial to
patients.
There's been some randomizedcontrol trials, even sort of comparing
peer respite to inpatientpsychiatric care.
(12:32):
I mean limited randomizedcontrol trials that have demonstrated
superior benefits of peer respites.
There's challenges in doingthis type of research, right?
And there's challengesethically and randomizing people
to, to different types ofcrisis care, especially if they're
at risk of hurting themselvesor someone else.
There are limits in what welearn through standard research designs.
(12:56):
But all evidence points topeer respites or other alternatives
as being worthwhileinterventions to consider investing
in and potentially Expanding.
But you know, if it'sexpanding those services and scaling
them up, there's obviouslygoing to be a lot of implementation
questions and how do you bestsort of scale that up and you know,
(13:19):
who are those best for and whomight do better in a traditional
hospital setting?
There are always exceptions.
It's not that folks want tosee just a closure of hospitals and
then absolutely no servicesfor folks.
They want to see a reimaginedalternative to the hospital.
I did a little research onpeer respites because this is a new
(13:40):
term for me and it might be anew term for you.
According to the NationalEmpowerment Center, a peer respite
is a voluntary short termovernight program that provides community
based, non clinical crisissupport to help people find new understanding
and ways to move forward.
We apparently have them allover the United States and many even
(14:04):
offer free stays for those incrisis for up to seven days.
They are staffed and operatedby people with psychiatric histories
or people who have experiencedtrauma and or extreme states.
I'll link this website in theshow notes if you're curious about
learning more as well.
When it comes to inpatientpsychiatric care, there are also
(14:27):
two buckets of hospital settings.
I know this is all reallycomplex and confusing.
There's the for profit and thenonprofit hospital setting.
What I wanted to know was whatdoes it mean for care when it comes
to these two different typesof facilities?
Do they run any differently?
(14:47):
Do patients get treated betterin one facility or the other?
You would assume not, right?
So some people will tell youthere's probably not much difference
between a for profit or nonprofit.
In practice.
A lot of big nonprofit medicalcenters operate just like a for profit
in terms of being very profit oriented.
(15:07):
It's just that they reinvestthose profits within their organization.
It goes to salaries or a new building.
It just doesn't go toshareholders or it's not held as
profit by leadership per se,but certainly it can go to their
salary.
That is generally the casewhen it comes to general hospital
care.
When it comes to psychiatriccare, however, and other types of
(15:29):
medical settings such asnursing homes.
But say that the theory andthe evidence maybe is a bit different.
So let me back up and say theoretically.
Theoretically, if we'relooking at this through an economics
theory lens, healthcare haswhat we call lots of market failures
in the United States.
It's a market based service.
(15:50):
You have these privateenterprises and it's not just the
government that's providing services.
It's a market based service.
But there are market failures,meaning that patients, first of all
are not the ones who areusually paying for care.
There's the insurance companyas an intermediary.
So that makes things complicated.
Patients don't always havefull information about care quality
and they're not able to makedecisions on where to go for care.
(16:13):
It just means that the marketdoesn't provide natural consequences
to providers for providingcare that's poor quality.
So there's not always anatural incentive for providers to
make sure they're providingcare that is high quality and meets
patients preferences that isexaggerated when it comes to inpatient
psychiatric care.
Right, because there's evenmore constraints on shopping.
(16:36):
There's the use of involuntaryadmissions, patients perceptions
are totally discounted, et cetera.
So it's even more severe whenit comes to inpatient psychiatric
care in conditions where youhave these market failures.
Theoretically, we expect thatfor profits will intentionally exploit
those market failures tomaximize profits.
(16:56):
Okay, I want to say thesentence again.
For profit hospital settingsintentionally exploiting those market
failures to maximize profits.
That's a powerful statement.
And to understand it a bitmore, let's actually rewind.
Let's think about whatactually constitutes a market failure
(17:17):
in this context.
What's called information asymmetry.
So providers knowing moreabout the care quality that they're
providing than patients,especially before they experience
care.
So that's a market failurebecause it means that the consumer
is not able to take all of theinformation about the product and
make an informed decision onwhether or not they want to buy that
(17:40):
product.
And it means that providershave more power in that sense, that
they have insight into theproduct they're providing, but that
the consumers don'tnecessarily have that insight, especially
before they end up as patients.
And, and, and they mayexperience care, then they do have
more insights, but theirability to use that information to
(18:01):
change the behavior of theirfuture selves or others is constrained
because they don't have asmuch agency as you do.
If you're, you're shopping forshoes where you can read reviews,
see how people like youappreciated the shoe, or if the shoe
gave them back pain, you cando all of your due diligence and
then you make the decision ifyou want to buy that shoe or a different
(18:23):
shoe.
It's not the case withinpatient psych.
You end up at an emergency department.
You then are sent to ahospital that has a bed that is willing
to receive you.
You don't even know the nameof the hospital.
Sometimes it's not necessarilylike they even ask you, is this the
hospital you want to go to?
It's we found you a bed, sonow we're going to transport you
(18:44):
to this place.
We theoretically expect forprofits to exploit those market failures,
which is just to say to not bethat motivated to care about care
quality in the same way thatthey would if they had to really
compete for business.
They're not really competingon quality, you know, because there's
(19:07):
not consequences.
And so this might look likefor profits not investing in staffing
in the same way that theywould if there were more clear financial
consequences, because it's rational.
If there's not any financialincentive for them to invest in their
staffing, then why would they.
(19:27):
It becomes a tougher businessproposition to truly invest in the
patient experience of ahospital if it's not clear how that's
going to financially benefit them.
And if they think that they'reable to make a lot of profits by
keeping all of their bedsfilled at maximum capacity, even
if it means having two to fourpatients in a given room where there
(19:49):
could be conflict betweenpatients, risk of violence, that
might generate a lot ofrevenue, there is risk of lawsuits
and there is risk of staff turnover.
So, but that's a calculation.
But the calculations might endup being in favor of, let's just
sort of keep these bedsfilled, let's see how low we can
get away with having thin staffing.
(20:10):
Let's use a lot ofmedications, right?
Let's keep patients mostlysedated then also we don't have to
worry too much about conflictand staffing.
If everyone is sedated, youcan see how that can lead to over
medication and death and howthat is in conflict with therapeutic
evidence based models forviolence prevention which are based
(20:30):
in relationships and requirethe hard work of building trust with
patients and being mindful ofpower imbalances.
It's potentially a lot easierand cheaper to just make sure everyone's
on a sedative.
Theoretically, we should allbe concerned that there's been a
rise in for profit in privateequity ownership of psychiatric hospitals.
(20:51):
That that actually should justbe our baseline.
Our baseline should not be,I'm sure everything's okay, and,
and until we're provenotherwise, we're just going to be
very happy that now we, youknow, we have more beds in our community.
I think the assumption shouldbe this is a setting with a lot of
market failures.
Another word is extremevulnerability of individuals.
(21:13):
And why is there so much forprofit and private equity investment?
How are they making their profits?
Are they sacrificing care quality?
The argument for it is thatthey're able to be more efficient.
There's economies of scale.
Maybe they're able tonegotiate for higher reimbursement
from providers because theyare a more powerful organization.
(21:33):
If they own most of thehospitals in a network, then perhaps
they are able to negotiate forhigher reimbursement.
So I just want to sort ofvalidate that.
That could be a mechanism empirically.
As a researcher, it is veryhard to study a variation in care
quality across psychiatrichospitals empirically.
I'm a bit constrained in whatI can say is the actual difference
(21:55):
between the nonprofits and thefor profits.
I can say that nationally I'vedone some analyses looking at staffing.
The for profits have lowerstaffing ratios than the nonprofits.
That aligns with what we would expect.
They also have lower staffingthan the government owned hospitals.
The same is true with privateequity owned hospitals.
(22:16):
They have lower staffing.
I did some research looking atcomplaints, regulatory complaints
and use of restraint andseclusion in the state of Massachusetts.
The for profits in that statealso had higher rates of complaints
and higher rates of use ofrestraint and seclusion, which also
makes sense.
But you can imagine, you know,a hypothesis being that maybe the
(22:38):
for profits are actuallytargeting folks who have private
insurance and who are maybeless complex.
And there's evidence that atleast the big corporate chains are
making most of their profitsfrom Medicaid.
These are people who are poor.
They are not making most oftheir profits from private insurance.
If we're talking aboutresidential substance use treatment
(23:00):
facilities, the opposite is true.
Residential substance usetreatments seem to be targeting out
of pocket pay and private pay.
But with inpatient psych, theyseem to be targeting Medicaid and
poorer populations.
If you are working with adisenfranchised population who may
already have low expectationsfor care quality, you might be able
(23:21):
to get away with providingpoor quality care to a greater extent
and with less scrutiny andless pushback than if you were providing
care to folks who are morewell off in their families.
The takeaway that I hear fromthese differences in care quality
between the nonprofit and thefor profit hospital setting is that
we can't simply assume thatcare facilities are doing the best
(23:45):
for patients out there.
But it's important to haveadvocates in our lives, whether it
be our friends or family members.
And it's important to have asupport system that will ask the
questions to get you to thebest care possible instead of just
blindly following the system.
I do want to take a momentthough, because if you're listening
(24:05):
to this, it all might soundquite daunting.
And I want you to know thatI'm also learning right beside you.
After I posted part one,someone bravely commented this on
YouTube.
Thank you so much for speaking out.
Being an inpatient back in2008 was the most traumatizing and
harrowing experience of mylife, changed my perspective of the
(24:29):
healthcare system and only ledme down a rabbit hole.
For a long time, I was anti vax.
And while I no longer holdthose beliefs, I still stand by the
fact that the psych ward brokeme down and led to a fear of doctors
that persists to this day.
This is just one person'sexperience, but it's a powerful one,
(24:49):
and it's one where it cancompletely change the way you view
healthcare and the peopleoperating within it.
We want to trust ourphysicians, we want to trust the
nurses, we want to trust the system.
But when you experiencesomething like this, it's kind of
difficult.
What do we do first?
And how can we serve thisvulnerable patient population?
(25:11):
I wanted to know simply what Dr.
Shields is researching tolearn more about this unique patient
experience and whatopportunities there are to improve
care qualities.
This is what she's currentlyworking on.
I'm finishing up publishingpapers from an online survey that
we did a couple of years ago,where data is lacking and it's almost
(25:35):
impossible to go around andsystematically recruit psychiatric
patients in order to get atprevalence of experiences.
We did an online survey, so wejust recruited a convenience sample.
We had about 800 responses.
These are all people who hadbeen hospitalized in an inpatient
facility within the previousfew years.
(25:57):
And we gave them a measure ofpatient centered care.
So this measure includesquestions like, did you feel that
you were involved in your care?
Were you able to ask questions easily?
Did you feel that you wererespected and treated with dignity?
We also measured what iscalled institutional betrayal, which
(26:20):
is inversely associated withpatient centered care.
But institutional betrayal isa concept developed by Professor
Freed, who is at a universityin Oregon, and she's a clinical psychologist.
And it's basically thisconcept that when a.
When an individual isdependent upon an institution to
protect them, and thatinstitution fails to protect them
(26:43):
or even causes harm to them,that the psychological impact can
be profound, especially ifthere's no sort of attempts by the
institution to apologize or tomake amends with the individual.
And so inpatient psychiatry isa setting where patients are very
vulnerable and they are verydependent on the institution to protect
(27:04):
them.
So this concept, thisinstitutional betrayal concept, seems
to fit really nicely with thesetting of inpatient psychiatry.
We had a measure ofinstitutional Betrayal.
We also looked at COVID 19mitigation strategies.
That's its own paper that'sbeen published.
We were really interested inunderstanding the relationship between
patient centered care,institutional betrayal and whether
(27:28):
the patient reported thattheir hospitalization reduced or
increased their trust inmental health care providers, reduced
their willingness to engage inpost discharge care, whether or not
they had a 30 day follow upvisit, post discharge, et cetera.
We also looked at variationacross ownership.
We linked these data tosecondary data on facility characteristics
(27:52):
to see is it the case thatpatient centered care, if that's
really the nucleus of carequality, is it the case that folks
who had been hospitalized at afor profit had lower patient centered
care and higher betrayal thanfolks hospitalized at a nonprofit?
And basically what we find isvery, it's intuitive, it's an alliance
(28:15):
with theory.
There's a strong relationshipbetween their experience of patient
centered care or institutionalbetrayal and all of those outcomes
I mentioned.
So trust and willingness toengage, 30 day follow up and patient
centered care was lower at forprofits and institutional betrayal
was higher at for profitscompared to nonprofits.
(28:37):
So that provides some evidencebeyond, you know, our existing measures
of care quality are so limited.
And so this was the first timewe were able to demonstrate that
there is a relationshipbetween experiences of patient centered
care and these outcomes andthat these experiences differ between
for profits and nonprofits.
(28:57):
There is now empiricalevidence for that.
And then in the same survey wedid ask people in a free response
box, what are your suggestionsfor care improvement?
A really simple question.
And we had over 500 responses.
So it's a lot of qualitativedata to analyze.
Most people did not actuallywrite suggestions.
If they did, it was anything,that's the opposite of what I experienced.
(29:22):
And then they, they took it asan opportunity to share their story.
Something that I have found inmy research is that folks who have
lived experience really wantto be heard, they really want to
share their experience.
And they feel like there isn'tan outlet to share their experience
and to be believed and to betaken seriously.
So I find them to be veryengaged in our research projects.
(29:44):
And with this particularquestion, we did have essays from
participants where they werejust describing that, you know, their
experience in these narratives.
And so we wrote a paper andpublished that this year.
It's in the Journal of PatientExperience where we describe that
text.
And it was a tricky thing totry to frame since we were asking
(30:05):
for suggestions for improvement.
We kind of framed it asopportunities for quality improvement
through the perspective offormer patients.
But it is, you know, what wemight expect really investing and
improving relationships withinthese facilities, respecting patients
rights and autonomy, improvingcontinuity of care and efficiency
(30:27):
of systems, information sharing.
So actually answering patientsquestions and telling them what medications
they are being given and astep beyond that is actually engaging
in shared decision making withpatients regarding medications.
But a lot of folks I speak toand who we sort of interview in our
research say, I have no ideawhat meds I was given and nobody
(30:49):
told me what meds I was given.
And so that's, that's at.
That's a very low level.
Like, so to actually get toshared decision making is.
Is many steps above that is wehave people who said, I just wish
I knew.
No one would answer my questions.
This feeling of being treatedlike you're less than human, that
you're a piece of trash.
(31:09):
Can you imagine being treatedlike this or feeling like you're
less than as a patient withinthe inpatient psychiatric setting?
No one wants to feel this way.
I wanted to know, is there away that after gathering all of this
research to providerecommendations to improve care quality?
And if there is, who do youprovide these recommendations to?
(31:31):
Is there a dance you have todo to make sure you don't quote,
unquote, upset someone whoworks in these types of facilities?
How do you make someone listenor even simply have a conversation
around it?
I have not thought aboutsending out recommendations to individual
inpatient providers.
I have found that even havinga conversation with inpatient clinical
(31:56):
leadership, who are oftenpsychiatrists, can be really tricky
because they're on the front lines.
I'm sort of an outsider.
I don't really want to comeacross as though I'm telling them
how to do their job.
That triggers pretty extreme defensiveness.
And they basically see peopleat their most extreme state.
(32:18):
They don't always see thecontinuum of services or a person's
life and what is possible.
Unfortunately for folksworking within these types of facilities
for a long time, they havealmost become institutionalized in
their thinking.
I find when I try to gentlyreport back to people in leadership
(32:39):
positions, there's extreme defensiveness.
And I'm not someone who goesinto these conversations and says,
I think we should burn downall of the hospitals.
I try really hard to bediplomatic and to validate that they
have their own expertise thatI don't have and that this can be
a really hard job when peopleare in crisis.
Now, working with people incrisis can be really hard and not
(33:02):
always fun.
And burnout is real.
But for me, a group that Iwant to prioritize providing Feedback
reports to are folks withlived experience.
So my actual participants inmy studies, following up with them
and saying, here's what wefound, let me know if you disagree
with our conclusions.
(33:23):
And reporting back to thatcommunity in different outlets.
So the news sources that maybefolks in that community might be
reading, sharing on socialmedia and trying to have conversations
with policymakers, they'resort of another audience and payers.
It's not surprising to me thatinpatient clinical leadership in
these facilities would bedefensive if they were to hear recommendations
(33:46):
coming from an outsider ORresearcher like Dr.
Shields.
She isn't working day andnight within these settings, even
though she was a patient atone point in her life.
The remarkable thing thatshe's doing though is sharing her
findings with participants andpatients that she's interviewed.
To me, this supports andvalidates these individuals to know
(34:07):
that they simply weren't alone.
And maybe these facts couldeven trigger greater grassroots organizations
that can fight for change inthe future.
We do have in this countrywhat is called P and A organizations.
PNA stands for PAIMI andbasically they protect patients rights.
(34:28):
And PAIMI was created, Ibelieve in around 1986 or so, maybe
it was 1988, to protect peoplewho were in institutional settings,
people with serious mentalillness, quote, unquote.
And they are mandated to existin every state and they have special
authority to enter inpatientpsychiatric hospitals and to obtain
(34:48):
patient records and to observewhat's going on.
They oftentimes are legal firm firms.
So like they are advocatethrough law.
And I think that they are avery powerful mechanism that could
be leveraged.
They are on the ground, theybecause they have access to psychiatric
hospitals and they hear frompatients who've had their rights
(35:09):
violated.
And so I think that they are apotential powerful mechanism that
we could leverage, we couldthink about funding them better.
But that they have been thetarget by folks on the other side
of the advocacy spectrum havetargeted them and have tried to advocate
for defunding them because theargument is they care about patients
(35:30):
rights.
We need to defund them becausethey're getting in the way of being
able to intervene and useinvoluntary methods.
So the polarized advocacylandscape actually has very real
world implications that can bevery messy, very unfortunate.
But I did want to just give ashout out to the PNAS because I think
that they're doing really hardwork and they, they technically are
(35:53):
doing conditions work.
Right.
And so they, they are an exception.
We're coming to the end ofthese conversations with Dr.
Shields and she has given us alot to think about for example, how
people have very differentviews in terms of reforming inpatient
care, from adding new beds tothe view of deinstitutionalizing
(36:14):
the system and seeking outother types of services.
Instead we learned about peerrespites and even how care quality
could be quite different ifyou were admitted to a for profit
versus non profit psychiatric setting.
But most of all, I think theseconversations further solidify the
(36:34):
notion that these issues areso complexly nuanced in a way that
necessitates that somethingshould and must be done.
The work that Dr.
Shields is doing is without adoubt crucial, but we do need the
backing of more grassrootsorganizations and people who want
to speak out to continue to dothe work.
(36:55):
The last thing I wanted to ask Dr.
Shields was really, what doesshe hope that people who have gone
through an inpatient psychexperience or even had family members
who have personal experiencestake away from these conversations?
I would love for them to takeaway that if they have had negative
experiences that they're notalone and that there are many people
(37:20):
who believe them and who havealso had very negative experiences
and that that is not right andthey did not deserve that at all.
And that I hope they're ableto meet other people who also have
lived experience who can helpvalidate that for and potentially
even mental health professionals.
(37:40):
I know of many mental healthprofessionals, they tend to be social
workers or clinical psychologists.
But I also know psychiatristswho get this and who know and I know
that sometimes you need thatvalidation from a professional.
And so my wish is for folkslistening that they have that opportunity
if they want it.
(38:01):
But they're also valid in notwanting to engage in our healthcare
system at all.
I do, I just want to pointthat out.
That is a valid reaction to avery unjust experience that one might
have.
And if you've had reallyfabulous experiences while inpatient,
that is also valid.
And for folks who have hadextreme states psych like psychosis
(38:25):
or mania, what's tricky hereis this recognition that sometimes
medication is needed andsometimes you do need some sort of
intervention that potentiallya little bit more forceful depending
on where you're at with, withyour, your thinking and your reality.
And, and so I don't wantanyone who's feeling like, well,
(38:46):
but I really needed someone tointervene and I wasn't in my right
mind to, to think that I'minvalidating that, that that is a
reality.
But just to say I think we cango about this in ways that are more
humane and more humane formore people rather than there just
being, you know, theexceptions like, oh, I once had a
good experience or I knowsomeone who had a good experience,
(39:08):
it should be more of the normand the exceptions really should
be the negative experiences.
But it seems that it is theinverse right now and that that's,
you know, really not okay.
I want to thank Dr.
Shields for spending thisvaluable time to speak with us about
her work, her passions, andher experiences.
If you resonate with anythingthat was said in this episode or
(39:30):
last week's episode, pleaseplease comment below.
If you're watching orlistening on YouTube or Spotify.
If you're listening anywhereelse, please feel free to email me@hatallobalhealthpursuit.com
any questions, comments oreven concerns are totally welcome.
I'll link all the resourcesmentioned in the show.
Notes this episode wasresearched, hosted, produced, edited
(39:55):
all of the above by me.
And I do want to give a bigshout out to my coach, Anna Xavier
of the Podcast Space forcontinuing to push me to create a
show that is meaningful,educational and entertaining all
at the same time.
If you'd like to support theproduction of the podcast, there
are a few ways to do it.
As an independent podcaster, Iwould love to give you a shout out
(40:18):
on the show.
All you have to do is become apatron by donating as little as $3
a month.
A big thank you to Ali, MitraG and Ajay for donating to the podcast.
If you'd like to be part ofthis list, you can donate by clicking
the support link in thedescription below.
Please follow this podcastwherever you're listening.
(40:39):
Write me a review on ApplePodcast and rate me on Spotify and
I'll see you next week.
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