BRITTANY LAMB, MD: ER Doctor Helping Dementia Caregivers Make Confident Medical Decisions

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Don Priess (00:00):
When the world has gotcha down, and Alzheimer's

(00:04):
sucks. It's an equal opportunitydisease that chips away at
everything we hold dear. And todate, there's no cure. So until
there is we continue to fightwith the most powerful tool in
our arsenal. Love. This is LoveConquers Alz - a real and really
positive podcast that takes adeep dive into everything.

(00:25):
Alzheimer's, The Good, the Bad,and everything in between. And
now here are your hosts SusieSinger, Carter, and me, Don
Priess.

Susie Singer Carter (00:37):
Hi, everybody. I'm Susie Singer
Carter.

Don Priess (00:39):
And I'm Don Priess and this is Love Conquers Alz.
Hello, Susan.

Hello, Donald. How are you?

Don Priess (00:46):
I'm swell and yourself?

Good. All right. Yeah, terrific. Yeah,

Don Priess (00:52):
Feelin peppy?

Well, I had I yeah, I know. I'm not peppy.

Don Priess (00:59):
I ju st thought I'd throw that out there and see if
you'd be peppy today.

Well, I normally am peppy. But I had my
flu shot yesterday, so I don'tfeel particularly peppy. But I'm
trying that thus my my gallon ofcaffeine, Loaded. Yes.

Don Priess (01:19):
I'm gonna wait to get the flu shot till I know I
shouldn't wait. Maybe tillMonday. I have to play golf in
the morning. I have to get upsuper early. So I'm not going to
get my flu shot. Till then. I'mgoing to ask our guest today if
that's a really good idea, areally stupid idea. I know the
answer to that.

You're very sensitive soul.

Don Priess (01:40):
I am. You know, and I feel like I need to be peppy
at all times. But while you'reyou're non peppy is the average
person's pappy so we're good togo.

Look at that. No one's ever said the
word peppy that many times - onair or anywhere.

Don Priess (01:57):
I'm bringing peppy back.

Yeah. I'm like a real Pippa. Look at
that...she's got gams can't seemy gams but they're there.

Don Priess (02:11):
So anything exciting to report or should we just jump
in?

We should jump in because we've I've so
many questions for our guests.

Don Priess (02:18):
And yeah, you have a lot of words to say, don't you

I have words to say and words to ask.
And I like it. Yeah. So go onand introduce our lovely guests
Donald.

Don Priess (02:32):
I will do that. Dr.
Brittany lamb is an ERphysician, dementia family
caregiver, educator andadvocate. She helps Medical
Decision Making caregivers makecompetent and informed decisions
on their person's behalf throughanticipation and planning. Her
enlightening services includesuch matters as advanced
directives, planning for medicalemergencies, how to talk to your
family and determining goals ofcare just to name a few. So if

(02:54):
you are someone's power ofattorney, health care, proxy
surrogate or default decisionmaker, Dr. Lamb can help create
a plan on how you will make yourfuture medical decisions so you
can focus on spending qualitytime with your loved one. And
after all, that is what it's allabout. Is it not? So? Let's not
wait another moment and sayhello to Dr. Brittany Lamb. Dr.

(03:17):
Or should we be Dr. Brittany?

Dr. Brittany Lamb (03:23):
Just call me Brittany. It's totally fine.

Don Priess (03:26):
Excellent.

Not lamby-pie, Don.

Don Priess (03:29):
Yeah, not lamby pie.

It would not be the first time that someone
told me Lamby pie.

So I want to call you Lamby-pie.

Don Priess (03:39):
We've been talking about it since yesterday. Yes,
we've been we've been talkingabout it since yesterday, we'd
like if we could only call herLamby Pie

Thank you for coming on and what you do
and your experience and yourperspective of what you do and
what you've seen and how youfeel changes should be made, so
resonate with what I've justbeen through in the first half
of this year. And I'm surealmost everybody that's
listening will have have or willhave this experience because

(04:11):
it's part of life and it's partof it. It's a big part of life
that we don't have any idea ofuntil we're deep in it until
we're knee deep in it. And likeyou say that is the worst time
to make decisions. So let's geta little background on you first

(04:31):
so we can understand thateveryone can understand how cool
you are and how brighten andawesome you know you started as
an ER doctor tell us about that.

I always knew I wanted to be a doctor. I had
no idea what kind of doctor Iwas going to be. But I was very
interested when I went throughall the process in medical
school. That's I wound up beingan ER doctor so they've been
working in the ER for almost adecade now. And I in my personal
life I think maybe people wouldwant to know why I got into the

(05:02):
dementia space. You know, mygrandmother lived with us when I
was growing up, she had vasculardementia. She was just with us
when I was in high school on myfather's mother. And that was my
first experience ever beingaround someone who had dementia.
And so it was very eye openingfor me seeing how it impacted
her life. And then, you know,also the people around her. So

(05:25):
her her spouse, my grandfather,and then my dad and my mom, even
you know, and the interactionsbetween all of them providing
care and making decisions. And,you know, she out they also have
the they had seven kids, so youknow, all the different children
weighing in and everything so,but yeah, so then I went to
college, and I did somevolunteer work with a community

(05:47):
that kind of brought collegestudents are interested in going
to medical school together withsomeone living with dementia. So
I hung out with this guy who haddementia, and I hung out with
him in his assisted livingfacility. So that was another
experience I had and why.

Wait, wait, wait, wait, wait, go back to
that. So you hung out with thisguy with dementia? Like, like
you do? Like you do? Okay. Youneed to extrapolate that a
little bit. Yeah. So

Yeah. So, you know, he was actually I
honestly, I can't remember hisname. It was a really long time
ago. But he was an actuary forGeico. And so, so smart, and I
would sit with him and we woulddo crossword puzzles, like at
his assisted living on his backporch, you know, that was secure
and everything, and I just hungout with him, I got to know his
family, I went over their housefor dinner, you know, and this

(06:35):
was when I was in, this was aMadison College. So before I
went to school for medicalschool, so, um, I just think
that, I don't know, I mean, Ienjoyed spending time with him
and getting to kind of know whatit was like, in an assisted
living facility. Also, you know,like, I've never even been into
Benin, one at that point in mylife. So. So a little bit of
real world experience there, Ireally liked hanging out with

(06:58):
him, you know, just he taught mea lot. I mean, he was very
knowledgeable person. And Ialways enjoyed spending time
with people who are older thanme, because, you know, you have
so much wisdom and knowledgethat you can pass on to people
who are younger. And so I alwaysenjoy spending time with people
who are aging centrally. Butwhen I, when I was in medical

(07:18):
school, I did research onadvanced directives. And so the
POLST form was something that Iwas super passionate about, and
still am, and worked on that.
And it's just always mattered tome that people receive care that
they actually want. And I thinkthat if you don't understand the
disease's themselves, and if youdon't understand the treatment

(07:39):
options for them, you can't makeinformed choices. And so this
all these combinations of likemy personal experiences kind of
limit brought me to this pointin my life where I just keep
seeing aging people in theemergency department that come
in, who are really sick and whocannot speak for themselves, who
then need help making choicesand their families are very

(08:00):
overwhelmed because they werenever talked about about what
their diseases were like, orwhat it looked like when they
got worse or what the treatmentoptions were. And this is for
people who everybody for allcomers, not just people living
with dementia, it's a hugeproblem for all aging, folks.
But for those who are livingwith dementia, there's a special
opportunity, which I mean, itkind of sounds bad saying it

(08:21):
like that, but because you knowthat that person will lose the
ability to make their ownchoices, it does allow you to
plan in advance for the choicesthat you might make. And you can
decrease stress as a caregiverby doing so. So that is like my
entire mission and coming onlineand doing this work is I want to
offload the stress fromcaregivers when it comes to

(08:42):
medical decision making andplanning for their person's
future so that they can reallyspend that time with their
person, like providing day today care and just enjoying being
with them. Because they stillhave so much to give.

Totally, I love it. I love it. I'm
applauding you so much because Iam I am your poster child for
what not to do. And, you know,and and we, you know, we had it.
i My mom didn't really have adirective before and it was you
know, I really loved my mom alot. I wish she had a Living
Will a trust but but that wasthat's a different story. I I

(09:21):
was her conservatory person. SoI was her health, her health
surrogate and I had to make adecision on her directive. I
didn't even know what adirective was. And I went with
my gut which was you know, Iwanted her at full code because
I thought I wanted to be the oneto make that decision. I never

(09:42):
wanted her to be taken into ahospital and someone else make
that decision for me or make youknow a decision that was too
important. I needed to see mymom and because she has
Alzheimer's and because shecan't communicate for herself.
Maybe you know she She neededsomeone else to communicate and

(10:03):
look at her and actually be ableto communicate with her to see
where where she really was atphysically and emotionally. So
but but still like what you saidit's, it's, it changed over the
past six months for me, I had todecide do I want to keep it full
code because I finally goteducated on what full code is,

(10:24):
which you talk about, which is,you know, CPR, which is, which
is aggressive. And, and Icertainly didn't want that. So
can you discuss maybe like whatthe, to the different kinds of
directives that are that we havechoices to, to make?

Let me back up a little bit. So Advanced
Directives are document legaldocuments, and the person who
has been diagnosed with dementiahas to do those on their own. So
living well, deciding who theircircuit is, they have, while a
person still is able to maketheir own decisions, and still
has capacity, and legally that'scalled competency, they can fill

(11:05):
out those forms and kind of candirect some of their health care
in advance through thesedocuments. So and then they're
in in each state, there is aprocess for like, who would
become someone's legalhealthcare decision maker if
they didn't name someone. And soit's different, a little bit
different in each state. Butnormally, it's like a spouse,

(11:25):
and then you know, and then achild. And sometimes it's a
parent, they're still alive. Butanyway, so there is a default
decision maker that will happenper state. But so advanced
directives have to be done inadvance. And they have to be
done when a person is still ableto make their own decisions. And
I have a huge bone to pick withadvanced directives, because
they do not tell they're notspecific, which is this issue.

(11:47):
They're not meant to bespecific, you know, they're
drafted by lawyers, by attorneysby people who do not practice
medicine. So they're not theydon't tell me what to do in the
emergency department. And thisis kind of why I jumped into
this space is because I dobelieve that the issues that
come up in dementia, I thinkthat what you choose to do, from
a medical standpoint, shouldchange should can and should

(12:10):
potentially change depending onthe actual medical condition
that is happening. So in somecircumstances, you may want more
aggressive care, because perhapsthat person is very likely to
recover or maintain theircurrent quality of life, like,
especially from an infection,like pain, maybe we're going to
treat that aggressively. Andthat's okay. But if they have a
significant underlying problem,like a heart problem, or a lung

(12:32):
problem that we know is notgoing to get better, perhaps
that person wouldn't wantaggressive care in that
situation. So anyway, I kind ofgot off tangent there for a
second, but Advanced Directivesare legal documents. And then
when you come into the hospital,who you're talking about with
code status, so code status isbasically like, what do you want

(12:52):
us to do if you are to die. Andso and I'm in I'm being very
blunt and direct here, right? SoCPR, we only use CPR, if someone
is like actively dying, ortechnically has that they do not
have a pulse, and they're notbreathing anymore. So CPR is
chest compressions, it'smedications through the IV, it
is controlling someone's airwaywith intubating, them, putting

(13:16):
them on a ventilator in some insome circumstances. And then
occasionally, we can actuallyshock people which people see on
TV as shocking people all thetime. And that is actually not
as common as not being able toshop someone. So that's one,
when someone comes into thehospital, we're going to ask you
do you want to be full code, andthat means that we're going to

(13:36):
do CPR, and we're gonna put youon a ventilator. And then each
hospital has differentdesignations for what they do
after that. So there's fullcode. And then there's the other
opposite side of that is comfortcare. And so usually that's
going to be labeled as somebodywho's going to be a do not
resuscitate. So don't do chestcompressions, don't do CPR,
don't put them on a ventilator,allow natural death. So that's

(14:00):
usually what kind of what thelanguage is. And that is
somebody who, if that personstarts to die, and they're
becoming unstable, they're theyhave unstable vital signs,
meaning their blood pressuresreally low, their hearts really
high or really low, they're notgetting oxygen, they're not
breathing, we're going to keepthat person comfortable, but
we're not going to do a lot ofaggressive measures to try to

(14:22):
reverse those things. So that'sallowing natural, allow natural
death. And then there's peoplein the middle which the people
that do not want to have CPR sothey are Do Not Resuscitate. But
they're okay with otheraggressive treatments and then
the hospital will help youdifferentiate hopefully, which
things you are okay with and notbut I'll tell you that having

(14:43):
that conversation could takehalf an hour and who has half an
hour in the hospitals sit downand have this conversation with
you? Nobody does and so it'sit's a huge problem because it's
it is not complicated. I don'tbelieve that it's complicated to
explain this. Have people Ithink people are very capable of
taking in this information andmaking decisions for themselves.

(15:05):
But they have to be given theinformation in order to make
decisions, and we do not have away to give it to them. Because
we don't have enough time in thehospital and primary care,
doctors don't have enough timein the like, unless you're
seeing a concierge physician.
You know, there's just isn't alot of time.

Don Priess (15:22):
And that's the biggest problem is that
sometimes they're asking you,what do you want to do? And you
have no idea you don't have theeducation? It's like, Wait,
you're the Doctor, tell me whatshould be done. Yeah. You know,
do what, how many times do Ihave to question what if this
was your daughter? What if this,you know, yeah, that to me, is
the answer to that? What if thiswas your loved one? What woould
you do?

Yeah, and we're trying not to we're trying
not to do that. And so when youask us that question, we're
supposed to, we're not supposedto do that. That's, that's a
huge, it's a huge problem.
Because you're right, it's like,what do you want to do? That's
not the right question. The theway that this should be done is,
this is what's happening? Do youunderstand what's happening?
Okay, these are the options forwhat we can do going forward.

(16:02):
But I need you to understand,like, what happens if you choose
each of those options? Because alot of times, people will tell
me, like, just go ahead and doeverything, but then they don't
understand, like, what thatmeans going down the line
afterwards. And so and it'shard, it's, it's just hard to
deliver the information when youhave such little time

You're right. And also it there's, you
know, it's it's not it's not a,it's not a simple decision,
because there's so many otherfactors that play into each of
those decisions. So, you know,there's, there's data, and then
there's, there's people, sothere's data that can give you a

(16:44):
sort of general idea of what ishappening, what might happen,
what could happen, what hashappened, maybe, and then
there's the reality of thatperson, and really what they're
presenting, what does that mean?
So, you know, I don't thinkthere's a caregiver that's that
I know, that I've talked to whohasn't felt like they've turned
into a CNA, or, you know, hasbeen, you know, taken on those

(17:06):
responsibilities of reallytrying to, to diagnose and to be
an interpreter. And, you know,it's, it's a really hard job,
and especially when you'reemotional, and and especially
when you're up against a systemthat is very rigid, and because
of their fear of liability. Andthat's an issue.

Yeah, 100%. I think that I think that
caregivers that have moreknowledge and have done it
before, tend to feel more, Ithink, once you've done this
before, with someone who's beenreally sick, it doesn't make it
easier for you the next time.
But caregivers do wind uplearning so much about the
healthcare system, because theyhave to advocate for their
person because they can't speakfor themselves anymore. And

(17:54):
there's all kinds of issues thatcome up and problem solving that
that's required in doing thisjob. It is not easy is 100%.
What are very hard job to dothat no one wants to do. I mean,
exactly, no one wants to be inthe situation.

And not everybody is a Britney lamb. Not
everybody is because No, trulybecause there's a lot of people
in this field that have whomaybe should be out of it. But
maybe they're maybe they'vegotten jaded, hardened. Because
they had to because it isn't aneasy job. And, and they throw

(18:32):
big wide nets over everybody andthey forget that there's
individual human beings that arethere and that everybody doesn't
every act the same on onmorphine, and everybody doesn't
always die, when their pulse,you know, drops to this level or
whatever, you know, everybodyhas a different, you know, we
are unique. And and we have toremember that when we're

(18:54):
diagnosing that, you know, thereare, there's, there's things
that happen, I'm not I'm not Uyugirls not saying that, you know,
let's pray, and there's going tobe a miracle. But I know, you
know, just that, that data isonly data. And then you have to
have you have to be in there asthe caregiver to really, really

(19:14):
check in and really see is thisthe base of your person is this,
you know, how are they what isthe quality of their life? What
would they want? And, and I andcan I just throw this out here?
I mean, as you will probablyrecognize this question, but I
got this question all the timefrom the palliative doctors in

(19:35):
the hospital who didn't know methey were just sent to call it
call me and say what would yourmom want? When she was in her
fully coopersmith disc you know,state when she was you know,
before Alzheimer's andeverything and I said that's not
fair. That's not a fairquestion. Because that person is
not the same person anymore. Sothe person that would say to me,

(19:57):
Susie, don't put me in a placelike that, you know, if I get
there? Well, no, because thatperson now says, I say, How are
you, mom? And she goes, I'mgreat. I'm alive. She's happy as
a clam. So you have to, youcan't you can't make that
decision on someone from 20years ago or 15 years ago? It's

(20:18):
not a fair question. It's notbecause they're different.

Yeah, I think that what you're saying makes
perfect sense. Um, I think thatin palliative care training,
people are asked to think aboutthat, like, so they're, you're
taught to, to, as the person waswhen they were fully competent
and had capacity, what they sayabout how they're living right
now. But if you recognize inyour person, that they still

(20:43):
have a good quality of life, andthey would still want their life
prolonged, then you are able tospeak on their behalf, as as bad
as their current quality oflife. So you know, there, there
are some people that are not asI don't know how to say this,
like, not as affected with theirpersonality, and from an
emotional standpoint, negativelywith dementia, you know, some

(21:06):
people that can still enjoy, andyou can still see that they're,
you know, happy and that theyhave, like, some meaning and
purpose, and they're stillenjoying life. Like, that's,
that's one segment of people.
And then there are people thatare not that are not like that.
And so if people's quality oflife is suffering, you know,
then, you know, their loved onemay choose to do something
differently. But I think I thinkwhat you're saying makes sense

(21:28):
to like, but yeah, I think, Ithink also like knowing that
quality of care are trained,they're trained to come in and
ask that question, like, whatyou're saying is not is not what
you should do. And I get bothsides of it. Really? Yeah.

And it really comes down to the the
individual again, that's all I'msaying is that it comes down and
you're absolutely right. Setlike, you know, one of my other
colleagues mother, who haddementia towards the end, she
was like, I'm ready to go, mom,they're coming to get me and I'm
happy to go. My mom, I don'twasn't ready to go. You know,
she was, you know, she justloved life. So whatever was

(22:06):
there, you know, if it was agood meal, if it was snuggling
with the babies, it was that wasa good day, if we were singing a
song, it was a good day, if shecould see a good looking man
walk by. It's a great day. Okay.
So I mean, it's just, you'reright. And you're right, because
it's like, you know, everybody,some people can acclimate to

(22:26):
where they're at, to what theyhave. And and that's, and my mom
had that facility. And I know alot of people that I've met
throughout, you know, herjourney that were just like her
and I met others that weren't,and who, when they were ready to
go, they were ready to go. And,you know, it is, you know, and I

(22:48):
think if you're, if you're atall intuitive with your person,
then you you, you can reallythey'll communicate that to you,
and you'll know it, you willabsolutely know it. And no
induct, I mean, if you? I mean,what do you think about what I'm
saying is because because Ithink that doctors can only give
you the spectrum. And then youthey can't make that decision

(23:14):
for you.

Don Priess (23:16):
They don't know You

They don't know.

You are 100% Right. And also, I have to check
in with myself constantly asphysician, like, I have a bias
towards less care. Like, I knowthat I have that because and I
tell people that I have a biastowards less care because it
people in the hospital dobecause we see people suffering,
right, you just see peoplecoming in coming in, there's

(23:40):
they're sick, they don't feelgood, they don't want to talk to
you. They're confused. You don'tknow what they're like when they
have a good day. And that's whyI'm constantly telling myself
and my and the nurses that areworking with me, like more or
more taking care of patients.
I'm like, we need to know whatthis person is like when they're
not sick. Like what is theirday? Like? Are they? What is
their quality of life? Like?
Would they be okay with thatquality of life like, and

(24:01):
that's, that's the struggle. Ithink that when people work in
the ER, and they work in thehospital, nurses, techs,
doctors, we all just get so usedto seeing people suffer, and we
don't want to hurt them, youknow, and what we do to treat
people it's not comfortable,

Np, it's not.

And it's it's not comfortable. And they're
tough decisions. And you want tomake sure what you're doing is
what someone would actuallywant. And, and so there's this
balance there, right betweenlike, I don't know what this
person is like on a good day.
And I have to remind myself thatI want to seek out that
information, so I can help theirdecision maker and make the best
choice for them in that moment.

(24:42):
And I think it's tough. I don'tthink I think that it's hard for
people to do and I think it'seasier. I think it's easier just
to continue with the standard ofcare and medicine and to just
continue to do things to peopleand not really question whether
or not you should be doingwinging it and then send them
the palliative care team have aconversation with the family. I

(25:04):
think that's what was happening.

Right?
First I want to just say I wantto I just want to say that the
best doctors and nurses that Ibecause of what my mom did
bounce in and out of thehospital the last six months of
her life, and that wasn'tbecause I wanted her to that was
because of the of the situation,the facility and it was bad. And
that the nurse, but theEmergency Nurses who I became

(25:27):
friends with, were like, What isgoing on Susie? This is your
mom's base? Don't theyunderstand? I said no, they do
not understand. And I get calledlike, I'll get a call at two in
the morning. Your mom is, youknow, breathing a bit fast right
now. And I go okay. All right.

(25:47):
So what do you want me to do?
Well, we don't you know, do wethink we should send her to the
hospital? You do? Why? Well, youknow, they're just so worried
and, and most of it comes fromliability. Yes. Worried about
their own liability, and not thewell being of their resident. So
my mom would get sent back therefor no good reason. You know,

(26:07):
being transferred in a in a inan Ambulance, ambulance, the
whole thing? It's just it's toomuch and and if she wasn't sick
before she is now.you know,

Yea, she's out of her routine. She didn't
sleep. She didn't get hermedications or whatever. Normal
care. I know. It's

Don Priess (26:27):
and then I and then intubated three times, she was
intubated three times, evenagainst. Yeah, Susie said no
more. None. And they still didit.

My mom in in January of this year was sent
to the hospital with which,unbeknownst to me of level four,
pressure wound in her sacrum.
You didn't know about that? No,she wasn't bedridden. She was in
a wheelchair from and that wasfrom Depakote. But that's a
whole nother story. That's whatput her in the wheelchair. This
all happen during COVID Eventhough in an all I could do was

(26:58):
was zoom with her once once aweek, which I did. And I started
to notice that she was in bedwhen I'm zooming with her at
three in the afternoon. Right?
So then I'm asking why is she inbed? Well, she's tired. Or
whatever, you know, so I wasn'tgetting there. Anyway, she ended
up with that which which turnedinto which, you know, brought

(27:18):
her into the hospital because ofsepsis. Yeah, and then UTI and
then low kidney functioning and,and pneumonia.

I listened to your the latest episode that you
did. I think I missed that youdidn't know that she had that
serious of a pressure balloon tonow I'm just like, my mind is
kind of blown on that whathappened germ on like, I see
that same situation happeningall the time your patients like
the same sequence of events. ButI cannot believe that they
didn't tell you that.

Don Priess (27:47):
She didn't know she had any pressure one level, let
alone a level four. notificationthat there was any pressure
wound.

No, no. And when you know, and Don and I
actually done came with me tovisit her, like 36 hours before
she was taken to the hospital.
And I noticed that she wasdidn't seem right. I mean, she
was still responding to me andlaughing I told you know, I had
this whole video actually of hertell I was doing what I do the
dog and pony show to make herlaugh and make her happy and at
dawn happened to record thewhole thing. And, you know, we

(28:16):
noticed and and by the end ofit, I was like 12 minutes and I
was doing the life of Norma youknow and making her laugh and,
and and then Don noticed thatshe had something flopping
around in her mouth. And it wassomeone's bridge, not Herman
else's bridge with food on it.
And I was like, oh my god, likethat's why it was flopping
around because it didn't itwasn't hers. It didn't fit,

(28:38):
right. Yeah, she had like, yeah,so I anyway, so that, and I
noticed that she wasn't clean.
And she but she was in herchair. So she was sitting in her
chair. And still if you look atyou know the video, you'll see
she's adorable. And she's like,responding to me like I'm going,
I'm going right and she'slaughing because I'm telling her
how all the men love her. Andyou know, I'm doing all that

(28:59):
stuff. And so she was having shewas having her life. She was at
her base, there was nothingdifferent. And then after once
they got her into the hospitaland they had to intubate her.
First of all was COVID. This wasback in January. So it was
Omicron. And I wasn't allowed inthere. And I got a call that
they were going to intubate herbecause of the pneumonia. I
mean, I had no choice. Theyalready did it. And then they

(29:21):
when they tried to excavate her,they did it too soon. So they
put it back in again. And thenthey decided to put a G tube in
because it had been too long andthey needed to give her food and
nutrition and then they told andthen they told me it was all

(29:41):
temporary. That was just atemporary until they excavated
her. And then by the end of thatthat month and a half she came
back to the her facility withthe Foley catheter with her G
tube and the facility, I decidedthat it was better to keep it in
because it was less invasive.

(30:04):
And but at the end of the day,it was really just easier for
them. Yeah, more convenient. Itwas much more convenient.
Despite the fact that my momwanted to eat orally wanted to
drink orally, wasn't aspiratingat all, but they decided she was
aspirating.

Don Priess (30:22):
Oh, so they would give her nothing, not even
liquid on a sponge.

That's awful.

It's awful.

That's horrible. I mean,

It's inhumane.

Yes, I mean, 100%. That's not a quality of
life. That's not calledproviding comfort, even though
especially not if you have if,especially if she had a swallow
study, and and there weremeasures in place to make sure
she wasn't aspirating. You know,like, I mean, if she wasn't
aspirating, then that doesn'tmake sense to me. And to do that
out of conveniences, like verypoor care.

Exactly.

Don Priess (30:59):
They did it under the guise. They did it under the
guise that she would aspirate,even though Susie could go in
and give her juices and stuff.
And she did it with. Yeah, withthe sponges they for they
stopped her from doing it saidno, no, she will aspirate. And
she's like, well, she isn't shedoesn't. And they said and then
after Suzy finally talked theminto finally letting her do what

(31:20):
they got.

But they had someone come in to assess
Finally, after seven weeks her.

Don Priess (31:25):
Which was done wrong.

Yeah, Yeah, , I'm not a speech language. I

They basically did it like this with
their fingers just to test ifshe was swallowing and first of
all, my mom was like, What areyou doing? Like, I'm not going
don't do those studies. Butyeah, I mean, I had
to swallow with your fingersthere. And so I said she's not
going to swallow with yourfingers there. And, you know,
since I found out from fromreally the true speech to do a
barium test, you have to do an xtherapist, that that is so

(31:46):
antiquated, you don't testswallowing that way. That's as
good as a guess. That's as goodas I'm not ray.

There's things that there's a process in
the standard that need to bedone in order to know

because it's too big of a choice to make
its two big a decision.

That's that's a huge, huge issue. I mean, a
lot of people, I think that westruggle as a society and
talking about what quality oflife means to us. But there are
certain things that we all a lotof us hold equally. And one of
them is like the ability toenjoy food, right?

It's a basic.

Yeah, right, so...

It's a basic. And if she and I kept
saying if she's going toaspirate and die from that, then
let's let her die from that.
Because what other quality shehave? I don't understand, like,
what are what, what this is notcomfort care.

Don Priess (32:44):
But that's a liability that comes from

I have a problem with hospice and
palliative and I also have aproblem and maybe you can
explain what is the differencebetween palliative and hospice,
the difference that I found outand you can, you can, you know,
expand on this is that one,Medicare covers and Medicaid
covers different things underpalliative as opposed to
hospice, so they were happy toput her into hospice, when she

(33:08):
got back, instead of trying toget her back to the base that
she was at

Palliative care is, you know, true is is,
is caring, it's supposed to helpdetermine what someone's quality
of life means and improve theirquality of life, maximize it,
allowing for every treatmentunder the sun while doing that.
And so it's it is a fabulousservice, if you find the right
company, right, and so that yourperson, can anybody with

(33:35):
dementia should consider apalliative care evaluation as
well, I think, because it willconnect you to services and
resources that you may not haveknown that you might need. And
you can still pursue alltreatment options. Hospice is
really more for someone's end oflife. Now. Good hospice services
can also improve quality of lifeand people can live on hospice

(33:58):
for years. So yeah, but it is itis the question is asked to be
approved for hospice, like,would we be surprised if this
person passed away within thenext six months? And if the
answer is no, we wouldn't besurprised. And they, you know,
would be more likely to beapproved for hospice. But with
hospice, the goal is anytreatment intervention, anything

(34:18):
that you do is to providecomfort, and that's right, a an
underlying goal of hospice andpalliative is just to maximize
quality of life. hospice has todo that as well. But that's the
difference between them. Butyeah, I mean, how they're paid
for and covered. You know,that's, that's a tough, that's a
tough thing.

If you have a wound, and you're, you know,
you need it to be addressedbecause it doesn't matter how
long you're gonna live, if youhave a week, or you have a year.
It's your week and your year,don't you agree and that in that
we all may have just a week. Sowe who has the right to say

(35:00):
that, well, they only have aweek to live. So who cares?
Let's just put them on morphineand knock them out. That's not
fair. That's not fair. It's justnot and and there's, there's a
disconnect in communicationbetween the surrogates. And the
surrogates are often, and I'mnot. I hesitate to say it,

(35:20):
because it's gonna make me soundthat I'm defensive, but I'm not
it. I hear it from otherprofessionals that, you know,
there's a lot of gaslightingthat goes on. And so it becomes,
you know, you are the problem,you're being you're
overstressed. You're not seeingreality. You're, you're, you're

(35:41):
living in it

Don Priess (35:41):
You expect too much.

You expect too much. You know? And, and you
can be and so they can push youinto that. Stereotype box. Yeah.
And, yeah, and it's not true,because I and it took me so I
mean, I found a few allies, butI eventually became, and I'm,

(36:03):
I'm a gentle advocate, I havethe disease to please. So I am
the last person to go andlooking at Mother efforts.
That's my mom, you know? No, I'mlike, um, so if, if it's okay,
could you maybe send someone inand my mom has gunk in her
mouth? That's like, she can'teven breathe, because there's
stuff blocking her airway. Justthought you might know how to

(36:25):
get it out, you know? So yeah,you know, and I just became the
thorn in their, in their heel,because they just didn't want to
deal with it. And they'reunderstaffed, and they just
don't have the manpower.

Yeah, I mean, I think that's like the root of
the problem. And in a lot of thecare and facilities, I think
people have with us, some of thefacilities really do have the
best intentions, and they justdon't have the manpower for it.
And that, and that is happeningin hospitals as well. So it is
it is, yeah, it's, it's, we've,we've lost a lot of workforce,

(37:00):
because of COVID. And the stressof health care in providing this
care it. I mean, there arepeople that say that, you know,
people working in the ER, in thehospital, that we get PTSD, and
we have, you know, it isdemoralizing to watch sometimes
what happens to humans, and sothat, that, that normalization

(37:22):
of suffering, and just seeing itover and over again, it can be
really hard and people and so Ithink that might be part of why
you by people get gaslit in away, it's just because, you
know, the people that are doingthe gaslighting are just like,
you know, I don't know what youwant me to do in this situation,
like, there's nothing I canreally do. And you're you're
coming at me with reasonablerequests, but I can't actually

(37:42):
take care of them for youbecause of XY and Z issue. On my
end, we don't know how to wedon't know how to provide what
the best care for your personbecause of all these all these
variables and issues. So

it's true.

Don Priess (37:54):
It's systemic.

I feel sorry. Yeah, I do feel sorry for
for a lot of the health careworkers, like yourself, and a
lot of doctors who have theirhands tied, because it's, it's
down to protocol, and it's downto again, liability and things
like that, that, that that standin the way of person centered
care, and individualized care.
And, you know, and then alsothere's some care, and then

(38:18):
there are caregivers that aren'tdon't educate themselves and
become and do become problems. Iknow that I understand that too.
And that and they and I'm surethere are, I don't doubt that
there are people that you know,come out people come at these
facilities with with ridiculousexpectations. Understood, I
understand that. But there's gotto be a middle level that we can

(38:39):
meet and, and that we need totake care of our health care
workers like you, you we need toprovide, you know, therapy and,
no, seriously just like we

I don't disagree

to, you know, minimize PTSD, which is
really unhealthy, which cancause so many problems, which
can, you know, manifest likeAlzheimer's, like dementia,
because it just takes over. Andso, yeah, the fact that we don't
a incentivize our are, you know,people to come into the health

(39:15):
care system? We don't. And we,and we don't take care of the
ones that are there.

Yeah, there's definitely more work that needs
to be done. I think that also Ithink things will change. I
think that the fact that we canhave this conversation virtually
and then get this informationout into the world and impact
people and, you know, the factthat we're a I'm a physician
that is has created an onlinecourse that that caregivers can

(39:43):
take and consume on their owntime to educate them. Like the
fact that this is nowpossibility is something that
people are a thinker. I justthink people are more interested
in spreading information andknowledge now and I think a lot
of physicians are looking totake back some of their
autonomy. Power, like in controlof what we're actually doing in
the healthcare system, becauseso many physicians have become

(40:06):
employees that it is hard toadvocate because you are
concerned about losing your job.
And so that it's part of it. ButI think I think things will
change. It's just disseminatinginformation and talking and
having conversations and, andshedding light on these issues.
So like your documentary isgoing to be, you know, I think
it's, I think it's a fantasticidea and something that is so

(40:27):
needed

Thank you.Yeah, when someone meets
their person, at the ER, whatwhat can they do? What can they
how can they best advocate? What

Yeah,

Susie Singer Carte (40:40):
communicates to you the best, like when
someone's in their house, whatcan they say to you that that,
that assures you that they'reactually concerned in the right
way?

I think when caregivers show up physically in
the emergency department andask, you know, hey, can whenever
the doctor whoever has like asecond come in and talk to my
person, because remember,there's nurse practitioners and
physician assistants alsoworking in the ER, in
conjunction with physicians. Youknow, I just really would like
to talk to them, I want to makesure that we're on the same
plane, same page that we'redoing care that my person would

(41:12):
want, I just want to make surethat we're following their goals
and preferences and wishes and Iwant to provide information so
that you understand my personbetter and kind of know what's
normal for them and not. And Ithink a lot of that you can
communicate to the nurses thatcan then relay that information
to physicians, if they're superbusy running around doing other
things. I did just recentlywrite a blog post I've written,

(41:32):
I write a blog, I try to put itout every week. And a lot of it
is about how to improvecommunication in the emergency
department and with medical carestaff in general. So I did do
like a 10 tips for the ER, Oh,no. Yeah, so one of the things
is that we really need to knowthe person has dementia, because
if you're there to help themmake medical decisions, and we

(41:53):
don't know that they havedementia, that's a huge problem.
And one of the issues I thinkpeople don't realize is that
like nurses and techs are notsitting and like digging through
your medical record. So theydon't always know that the
person has dementia, if it's ifit's not written in the record,
unless someone tells them and soI know it's annoying. When you
come into the ER, you tell yourstory, like six times you tell

(42:14):
it in registration, you tell itwhen they triage you, you then
tell it when your nurse actuallycomes in, you tell it to the
tech, you then eventually tellit to the doctor.

And then you have that whole next round
that come in.

Yeah, yes, anybody who's taking care of
your patient in the last yearperson, and you have to tell
them to, and I know that it'sfrustrating, but every time a
new person comes in, it's a,it's another, it's another way
to advocate for your person. Andit's another way to make sure
that they're they're getting thecare that that they would want.
So, um, but I think letting usknow is a big thing. And then I

(42:47):
kind of also tell people like,it's really important that you
have an idea and understandingof your person's overall health,
and like what medical problemsthat they take, what medical
problems that they had, whatmedications that they take, it's
really important, because tohave a conversation about, you
know, what's happening to them,you kind of have an app to have
an underlying understanding ofwhat what their medical

(43:09):
situation is. And so that'ssomething I tell people to talk
about. And then goals of care.
Like, I can't talk about goalsthat care enough. And I teach
three goals of care. And it kindof goes in line with what we're
talking about with code status.
Yeah. And so I teach goals ofcare, like your person wants
every treatment under the sun tocontinue to prolong their life,

(43:30):
because they would be acceptablewith their quality of life. Or
they're someone who values thelength of their life over
quality of life, because thereare people out there who, who
want maximum medical treatmentuntil it fails. And they don't
care if their quality of lifesuffers with that. So that we
have to respect that, right?
It's not my job to tell you whatto do. It's my job to give you
the options, and then you makethe best decision for yourself.

(43:53):
So full treatment. And then onthe other side, I teach that
there's a goal of care ofcomfort. So every treatment and
intervention that we do shouldbe focused on comfort. And that
doesn't mean no care, it meansthat, you know, if we're going
to do a hip fracture, repairsurgery, that is for comfort,
like if someone falls andfractures their hip, they're

(44:13):
never gonna walk again, unlesswe fix it. And they, they their
goal here may be comfort, butthat doesn't mean that they
can't come to the hospital andhave surgery. But that's
important to know, because saythey have a severe infection and
have sepsis and their goal ofcare is comfort. Well, they
should not have maximum medicaltherapy to treat their sepsis
because their goal of care iscomfort. And so at any man you

(44:36):
talk about the different optionsthere but and then the middle,
the middle goal of care is Ithink, where a lot of people
fall is some but not alltreatment. And so, you know, not
receiving CPR is usually whatwould drop someone from full
treatment into that goal of carecategory. But then literally,
that's why people need a medicaltreatment plan, which is what I

(44:57):
teach in my course. So that youcan decide for each medical
condition your persons at riskfor the most common things. What
would you do now

So important, so important what
your she's saying is soimportant you guys because I did
change it from full code to donot resuscitate, which really
only meant for me my definitionwas, don't do CPR and don't
break her ribcage. I don't wanther ribcage being broken right
to resuscitate her. But thatdoesn't mean I don't want

(45:28):
antibiotics for her sepsis andfor her pneumonia. I do. I do
want her to be suctioned so shecan breathe and doesn't feel
like she's suffocating. Andthere's a there were certain
things that I had, that I wantedfor her. And I had to fight for
that I had to fight for thatbecause their default was she'll

(45:49):
be fine. If we give her morphineshe won't feel like she she
don't worry about it. And I'dsay no, no, I Please, you have
to listen to me. I know mymother. She and then when I
would talk to the respiratoryspecialist who came in who was
who would do the sectioning. Iasked him, will morphine help my
mom feel like she is not beingwaterboarded? And he said, No,

(46:11):
it won't. It's inhumane. Sheneeds to be suctioned. So you
must go with your gut. Do yourdo your research, and then do
what you're saying Brittany'slike, you know, do do Brittany's
course or do something thatwe're you do? Where you do
really defined definitively, youknow, communicate what you want

(46:37):
in these cases. And you have tobe specific, right?

Yeah, yeah.
That's the thing is that, Ithink that the more that you can
learn, and the more knowledgeyou have, then when you're in
the moment, you're gonna feelbetter about the choices that
you make, you're not going tofeel as guilty for making
potentially making the wrongchoice, you're going to be less
likely to feel regretful andyou're going to like sleep
better, and just feel likeshirred Yeah, yeah. Yeah, you

(47:01):
made the best decision that youplay with the information that
you have, you know, one of theone of the bigger advocating,

Don Priess (47:11):
One of the big biggest challenges you talked
about, you know, communicatingwith first with the nurse than
to, you know, is theavailability of somebody to
communicate with, due tostaffing shortages, and just
just the amount of work that youyou are put under, you can't
stop and talk to every person'sfamily who comes in? I mean,
Suzie, I don't if you're if I'mnot mistaken, like the first

(47:31):
time your mom went in, youdidn't talk to a doctor till the
next morning. And she went inearly the night before. You were
in the dark in the ER,

that was the emergency one, that one and

Don Priess (47:43):
even then there's a lot of decisions that have to be
made in that er, and you didn'thave any, you were in the dark,
you might have another doctorcall a friend of your your
nephews, friend's father, whowas a doctor call to talk to the
doctor directly, because you hadno idea what was going on? And
have him explain that to you. Imean, it was, that's insanity

That is insanity.

Don Priess (48:09):
And it's dangerous.
And and I think that's due towould you say that's due to
staffing shortages? Or is thatjust the system?

Ah, due to both.

Don Priess (48:16):
Oh, hard to say?
Yeah.

You know, just like what happens in living
facilities, like, you know,paying for people to be in there
and take care of patients isvery expensive. And it's the
same thing for staffinghospitals with, you know, and I
mean, I'm not going to get intoI'm not going to get into all
the issues that I see in theemergency department, because of

(48:38):
what I do, because it's what Ido for a living, right. I mean,
I can talk to that to talk toyou all about that on at a
separate time. But yeah, I thinkthat it part of it is staffing.
And then it is like there'sturnover, right? So a physician
may have seen your your mom andput in orders and decided what
they were going to do and thensaid, Oh, I'm gonna go, I'm
gonna talk to her loved onelater, like, talk to you later.

(49:00):
And then something elsehappened. And then it was the
end of their shift, and theyleft. And then there's a new
doctor there now. And they knowthey really don't know anything
about your mom. They just knowthat your mom is not dying, and
that they don't need to activelytake care of her right now. Like
she's tucked into the hospitaland that like so that's just
unfortunately, like, that's kindof what's happening on the back
end. And I try I personallytried to make a point talk to

(49:24):
the caregiver, the person that'smaking medical decisions for my
my patients that are living withdementia, I do that that I know
that not every physician doesthat. It because it matters to
me that I start the care thatthey would want because the care
skits started in the emergencydepartment. We start critical
care, we can start comfort care,we can leave we set the kind of

(49:49):
tone for what the hospital's daylooks like in a lot of
situations. So I think justbeing an advocate, being there
physically, and I think askingYou know, you just have to keep
asking, like, Hey, I knowthey're super busy. But like, is
there any way someone could comeand just talk to me for like,
three minutes about what isgoing on? And you just, I always

(50:10):
tell people, like, kill thestaff with kindness, like, and I
don't know how else to tellpeople to do it, but just just
keep asking, you know, and beingnice and saying, I know that
you're busy, I know. But like,I'm here, and I just really want
to talk to somebody, or can theycall me, you know?

Don Priess (50:27):
Yeah, because, you know, there's always the Oh, the
squeaky wheel gets, you know,the oil, you know, and some
people go with quite theopposite. And, you know,
basically go Terms of Endearmenton everything. And, and, you
know, they think that well, I'llget, but you feel, obviously,
and then maybe the person youare, the way better way is to be
nice and decent and pleasant.
But sometimes I feel like youdon't get noticed. Sometimes

(50:50):
they're like, Oh, they're nice.
I don't have to deal with them.
Right now. They're there. Youknow, so that's a hard decision
depends.

Yeah, it definitely depends.

Yeah, wow, this is a big, this is a big
topic. It's a huge conversation.
There's, there's a lot to unpackhere, because I have been
through it. And I know, youknow, and it does, and it is
it's a it's a person to personsituation. I love that you I
love your advice about alertingpeople to the fact that your

(51:22):
person has Alzheimer's ordementia, because we forget. And
we do. I did think that, youknow, well, isn't it in their
files? You know, don't you seeit? But no, I mean, that's why
my mom ended up in a wheelchairbecause when she went to a
doctor's appointment, and shewas agitated, they thought she
had a mental breakdown and puther in Psych lockup, and gave
her Depakote for seven days. Andbecause they didn't know that

(51:47):
she had Alzheimer's, at thehospital at the place that was
her doc, her regular hospital.
So people don't look, peopledon't look, they often don't
have time you can't you I thinkyou're really right in saying
you can't assume that anyoneknows.

No, 100% You can't assume

Don Priess (52:06):
So important. I always I always think when I go
to the doctor, oh, they'velooked at all my files. They
know everything. They know, mywhole history, and quite the
opposite.

It's time consuming. And that's like in
the doctor's office before theysee you for a regular visit,
they probably have reviewed yourrecord. But yeah, I would hope
you know, but in the hospital,you know, you come into the ER,
I skim through the what's inthere, but it's not always
complete. And I don't alwayshave time to go back and read.

(52:37):
You know, some people's chartsare like so many pages.

for sure.
And you have and your goal is toget that person stable.

Right?
Correct. It's Yeah, exactly. Sowe look for, you know, what is
what is most likely happeningbased on the symptoms that
they're coming in for? And thenalso like thinking about the
worst possible thing that can beand what could what could
potentially negatively affecttheir quality of life and harm
them? If we miss it? Whattesting we need to do? So yeah,
it's it's, it's all based onwho's sickest? Right, so it's

(53:09):
whoever sickest gets seen rightthen. And we're constantly being
interrupted, which, which we allknow, like, task switching is
not good for our brains. Andthat's how things get that's how
things get forgotten. Like, youget forgotten to bring a blanket
to you don't get your pillow.
You don't, you know, they saythey're gonna come back. And
then where are they? They're notback? Well, it's because they

(53:30):
probably forgot, because theygot distracted doing a bunch of
other things. So it's just,

it's actually I played music really
loud in the in the room when Iplayed my mom's music, and
they're like, Wow, who's that?
Singing? It's my mom. Any trickI could do to get attention? I
mean, people loved it. Itworked. No, I'm just making a
joke, but in a way, but notreally. But the point is, is
that you're right, that we haveto assume that that everyone is

(53:58):
distracted and busy and, and,and gosh, I think what you're
saying is like, the best, thebest, you know, way to to, to,
to avoid these problems is to beprepared.

Yeah. Just trying to decrease people's
stress by teaching them likewhat they might not know, like
filling in gaps of knowledgeahead of time. And I don't want
to tell people what to do. Ijust want to provide this
perspective that we have fromthe medical side of things so
that people are armed with theinformation so they can make
informed choices.

So great. I love what you're doing.
Brittany, I think what you'redoing is no it's so it's so so
so important. It really is it'slike it's required if you're if
you are a caregiver, if you arethe the person, conservator of
the person's health, you must dothat for them and for yourself.

(54:58):
That will alleviate So muchproblems on both sides. And and
I wish that I had known that.
But you know, now I do. And andnow

Don Priess (55:09):
there's a place where everyone can go, they can
go to your website and find outall about being prepared.

Yeah, it's blambmd.com.

Well, yeah, it's gonna be in the in the show
notes, you'll find it for sure.
But I mean, I don't, I don'tusually promote, we don't
usually promote, we just haveconversations. But I think what
you're doing is really great.
And I think it's important. AndI think, you know, having
someone that's been in thetrenches, like you with an A can
speak from experience, can, itcan be an invaluable service to

(55:41):
all of us. So thank you.

Yeah, I'm happy to happy to help. And, you
know, people don't have to payfor my course, they can, you
know, can read my blog and joinmy facebook community, and I go
live in they're trying to golive in there weekly, and answer
questions and things too. Sothey're

Don Priess (55:59):
Go pay for your co pay for a course.

People need to get paid you guys

Don Priess (56:03):
We want Brittany to have money

Yes, but yeah, I mean, I'm happy to happy
to help people in the course aswell.

Well, thank you so much. You're delightful
human being. You're a lovelyhuman being, and I love your
soul. And I think that whatyou're doing is, is wonderful
and that you're taking the timeto, to, you know, multitask,
like you're doing because you'redoing you're juggling a lot. So
thank you.

Now it's helped me I honestly feel like
being in this space has taughtme a lot has helped me better
care for my people who areliving with dementia, and I'm
happy. I'm happy to do it'smaking me happier at work. So
it's a win win.

Beautiful.
That's so beautiful. We're allabout that. Aren't we Don?

Don Priess (56:44):
Yeah, absolutely. We are. We're all about that. You
know, what I was really excitedabout today is that I finally
got to call a doctor Lamby Pie.
Yeah.

Who isn't?

very excited.
I love that.

A series, we're gonna develop a series
Lamby Pie, MD

Don Priess (57:05):
Lamby Piei MD Well, it's we do love what you're
doing. And that's what we're allabout is love. And there's one
reason for that, and that isbecause love is powerful. Love
is contagious, and Love ConquersAlz, and we thank everyone for
watching. Please like subscribe,go to Brittany's website. Get

(57:26):
yourself all good for the futureand we'll be happy to see you

Get prepared Kiss your loved one and
next time.

Don Priess (57:36):
take care everyone.

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}BRITTANY LAMB, MD: ER Doctor Helping Dementia Caregivers Make Confident Medical Decisions

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