Surrogate Decision Making

February 16, 2023

January 18, 2023

Douglas White, MD, MAS

Vice Chair and Professor of Critical Care Medicine

UPMC Endowed Chair for Ethics in Critical Care Medicine

Director, Program on Ethics and Decision Making in Critical Illness
University of Pittsburgh School of Medicine

Information

ID: 9487
To Cite: DCA Citation Guide

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00:00Good evening and welcome to the
00:03Yale Program for Biomedical Ethics.
00:05And welcome back to our home home
00:06base here at Cohen.
00:10My name is Mark material. I'm the
00:11director of the program here at Yale
00:13and I'm pleased you're here.
00:15I thank you very much.
00:16We have a great group here,
00:19Cohen Auditorium and plenty
00:20of folks on zoom as well
00:23the the guest. Our guest this
00:25evening is Doctor Doug White,
00:26and I'll introduce him in
00:27one second, but just to
00:29let you know how it's going for those
00:30of you who are new to our format,
00:32I'll give a brief introduction.
00:34Doctor White will speak on the
00:36subject of surrogate decision
00:37making for about 45 minutes.
00:40Plus or minus, after that,
00:41he and I are both going to
00:43have a seat at the table here.
00:44What we'll do is I'll take your questions
00:46from the audience as well as online,
00:48and I'll give them to Doctor White
00:49and make sure they're difficult.
00:50We didn't bring this guy here for easy
00:52questions, but ask him some hard questions.
00:55And and we'll have a conversation.
00:58And that conversation will end.
01:00That clock by the way as
01:01you can see is an hour fast.
01:03So we'll have a conversation
01:04that will end at the at 6:30,
01:07which is 730 and then pay no
01:09attention to that the conversation
01:10will end at 6:30 will have a hard
01:13stop then until our next meeting.
01:15I will tell you just one brief
01:17announcement now for many of you who are
01:19on is that I had sent out a notification.
01:21I'm going to send out another one very soon.
01:23A lot of very special lecture we're having
01:25on the first Thomas Duffy MD Lecture and.
01:28Now medical ethics,
01:30in honor of our recently
01:31deceased great friend Tom Duffy,
01:34who was a stalwart at this meeting,
01:36and in fact help us get this whole
01:38program started now 13 years ago.
01:41So this is going to be an honor of Tom.
01:42And I sent out a notebook saying it was
01:44April 6th, which is the 2nd day of Passover,
01:47which has actually got some difficulty still
01:49for some people. And unfortunately we
01:51were able to change it to April 4th.
01:53So we're going to be at the New Haven
01:54Lawn Club with a reception from 4 to 5,
01:57and I'm going to send you all
01:58this in an e-mail as well.
01:58From four to five at the New Haven Lawn Club.
02:00We just have a reception some past orders
02:03and such and somehow wine and beer.
02:05And then we will we'll have a lecture
02:09by Loris Caljan from University of Iowa.
02:12He'll be speaking.
02:12He'll be our guest speaker for the
02:14first of what it's going to be
02:16an annual event that Thomas Duffy
02:17Lecture in medical ethics.
02:18So that change of date we're we're is
02:20now April 4th and look forward to that.
02:23We're actually doing something.
02:24I was talking to Anna Reisman,
02:25I think you know about this Karen
02:27from the program in Humanities.
02:29Tom was very instrumental and
02:30he was the leader of the program
02:32and humanities for many years,
02:33very involved in both.
02:34So the two programs are going to
02:36do something together next year.
02:37We're going to have a,
02:38we're going to have a program
02:40next fall probably,
02:40and there'll be more about that to come.
02:42But stay tuned for now for tonight,
02:45let's talk about surrogate decision making.
02:47But before we do that,
02:48let me talk about Doctor.
02:49Doug White was kind enough
02:51to come here and join us.
02:52I think the first time we communicated
02:55Doug was probably during the COVID,
02:57the early days of COVID as we
02:59were all trying to figure out.
03:00How we were going to handle this.
03:02And I see several of the guys
03:03in the audience here,
03:04Mark and Sarah and Jack and of course Ben,
03:08who led our group from here and several
03:09others who were involved in this.
03:10And Doug and I think you and I
03:12exchanged some ideas online and
03:13got to know each other a bit.
03:14So I was so pleased when you
03:16agreed to come here.
03:17Doctor White is the vice chair
03:18and professor of critical care
03:20medicine at the University of
03:21Pittsburgh School of Medicine.
03:23He holds the endowed Chair for Ethics
03:25and Critical Care Medicine there and
03:27directs the Program on Ethics and
03:28Decision making and critical illness.
03:30Which is the first program in
03:32the country focused on ethical
03:33issues and critical care medicine.
03:35He graduated summa *** laude from Dartmouth.
03:39He received his medical degree from UCSF,
03:41did his residency in internal
03:43Medicine and fellowship and pulmonary
03:44and critical
03:45Care medicine at UCSF. He also
03:48completed a Masters in epidemiology and
03:51Biostatistics and most importantly,
03:53fellowship in bioethics. His scholarship
03:57focuses on ethical issues that arise
03:59in the care of critically ill patients.
04:01And he is been funded by
04:03Greenwall and other organizations.
04:05He's widely recognized.
04:06He's a fellow at the Hastings
04:08Center and I could go on.
04:10But suffice it to say, he's clearly
04:11one of the leaders in medical ethics
04:14in our country and particularly
04:17in medical ethics as it relates
04:18to care of critically ill patients. So
04:21I want to welcome Doctor White.
04:22Please come on up. I'm going to turn
04:23it over to you. Thank you, Doug.
04:29All right.
04:34641.
04:3636145 what is 36145?
04:40OK. And can you put that on the channel?
04:43CMU is 36145. What number do we call?
04:514429435. It's also going to be available
04:54in the back here. I'm going to
04:55write on a big piece of paper and we'll
04:56have both those pieces of Commission
04:57for you then. Thanks, Karen. OK, wonderful.
05:01It's nice to see a big crowd in person.
05:05Mark, thanks for the Nice introduction.
05:06And it's really wonderful
05:07to be here in person.
05:09This is one of the first in person
05:11talks I've given since we've kind of
05:14begun to emerge from the pandemic, so.
05:17Here we are. All right,
05:20let's let's talk title today
05:22is surrogate decision making.
05:23These are my disclosures
05:25of financial disclosures,
05:27none of which pose a conflict with
05:29what I'll be presenting today.
05:31And it looks like.
05:32Is there a way to move the zoom stuff off
05:35the top so people can see the titles?
05:50Oh, right. Fantastic.
05:52OK, we're getting there.
05:58Maybe.
06:02So I should just,
06:03should I use the the mouse?
06:05No. OK all right.
06:07So I have three main objectives for today.
06:11First, to summarize, several
06:12important normative debates regarding
06:14surrogate decision making in medical care.
06:172nd, to address the implications of
06:20several negative trials of interventions
06:22to improve surrogate decision making and
06:24ICU's and and I'm an adult intensivist,
06:26so I'll be focusing.
06:28Largely on the adult context,
06:29but we'll do my best,
06:31especially since we're in a child center to
06:34talk somewhat about the pediatric context.
06:36And then third,
06:37to make the case that the way we've been
06:40thinking about trying to improve surrogate
06:42decision making in the acute care context is.
06:45Perhaps not misguided,
06:47but insufficiently multidimensional.
06:51Some things that I won't be addressing fully,
06:53we'll we'll touch on each of them a bit.
06:55Legal aspects of surrogate decision making.
06:57I'm not a lawyer.
06:58I want to.
06:59I put up here a great review by
07:00FAD Pope on the legal aspects
07:02of surrogate decision making,
07:04responding to requests for futile or
07:06potentially inappropriate treatment,
07:07and making decisions for
07:09unrepresented patients.
07:09These are both topics
07:10near and dear to my heart,
07:11and I know Ben and others here
07:14have been working on revising
07:15Yale's policy for requesting,
07:17responding to such requests.
07:19Perhaps we can address these
07:20in the discussion.
07:22Section.
07:24OK,
07:24so let's start with the normative
07:26aspects of surrogate decision making.
07:29Sometimes when I'm attending in the ICU,
07:33I hear rumblings from clinical staff
07:37or trainees along these lines.
07:39You know, families that don't,
07:41they don't really know what the patient
07:43would choose and they don't really
07:45understand what's going on with them.
07:47So they really shouldn't
07:48be the decision maker.
07:49And if they're really, you know,
07:51if these are sort of high level trainees,
07:54maybe internal medicine residents,
07:55they might bring up paper to that
07:57effect and one of the common ones that.
07:59That is bandied about on rounds is
08:01out of David Wendler's group at NIH,
08:03David Shalowitz Levitt.
08:05It was a systematic review in which
08:08they looked at all the studies of.
08:11Decisions that patients made and their
08:13appointed proxies or their next of
08:16kin and compared them and what they
08:18found is that surrogates did not
08:20accurately predict what the patient
08:22would choose about 1/3 of the time.
08:24So they use this as evidence that
08:28these individuals that patients,
08:30families should not be the surrogate
08:32decision makers or the way we have
08:34it all structured is misguided.
08:35So I'm going to stop here just to sort
08:37of gauge people's thoughts about that,
08:39how first of all have show up.
08:41Chance is anyone? Had such murmurings.
08:44When you're clinically on service,
08:45have you heard people say such things?
08:47Yeah, OK.
08:48It looks like about half of the room.
08:50I don't know how many are clinicians
08:52and and how does it strike you?
08:54Does it seem like a?
08:56Reasonable conclusion?
09:00Yeah, well.
09:04Some of the time. OK,
09:07from the time and in some way.
09:11All right. Sarah,
09:14I would argue, I mean at least
09:16the way it's framed here,
09:17it's kind of problematic
09:19because they're the first part,
09:21families don't know what
09:22a patient would choose.
09:23The the the justification for
09:25that is that they don't understand
09:26these complex medical issues.
09:28But that actually is really underscoring
09:30the lack of understanding of the medical
09:32issues and not the patients wishes.
09:34And by that argument you would almost say,
09:36well patients shouldn't
09:37choose for themselves.
09:38And I think we have a pretty robust
09:40consensus that patients should have the
09:42autonomy to choose and in fact this.
09:44Is more from my perspective of failure
09:46of medical teams to break down those
09:48complex medical issues in a way that
09:51families actually can process them.
09:53Others, yeah.
09:56See partment perspective where I work.
10:00It seems as though that the patients
10:02families don't always understand the
10:04complex medical issues for two reasons.
10:06One because it hasn't been
10:08explained by the oncologist or the,
10:10you know, the heart failure doctors
10:12or the liver physicians.
10:14Umm.
10:16Or things are different today
10:17because that's why the patients
10:19in the emergency department.
10:20So they may be our job to explain
10:22that things are different now,
10:24but sometimes have a hard conversation
10:26when you've just met the family issue.
10:28Yeah, so I'm hearing two
10:29different issues here. One that.
10:33Yes, this is true and it may be
10:35an issue that that patients can't,
10:38that surrogates can't fully and reliably
10:40predict what a patient would choose.
10:42And sometimes that's grounded in
10:44just lack of understanding of the
10:46facts and but for that they might
10:48actually be able to to make the the
10:50same predictions the patient would.
10:51However, I I think it's worth really
10:53sort of stepping back and asking
10:55what's the moral basis for families
10:57as surrogate decision makers?
10:58And is it this narrow because if so,
11:00it's it's easily defeated, yeah.
11:03If you just have these empirical
11:04data that surrogates make decisions
11:05different from the ones that the patients
11:07would choose and the moral basis for
11:09the family's role, is that then?
11:12It's defeated,
11:13but let's let's look at it.
11:14OK, so Dan Brock,
11:18we'll talk about some of Dan's
11:20work later at other work.
11:22But Dan I wrote what I think
11:24is a lovely piece Now 20,
11:26almost 30 years ago articulating 5 grounds,
11:31moral grounds for the the family
11:32of surrogate decision maker.
11:34And he divided these into patient
11:36regarding considerations,
11:37non patient regarding considerations
11:38and what he called democratic grounds.
11:41Only one of these has to do with accuracy,
11:44OK,
11:44and that's the the second bullet
11:46under patient regarding rounds.
11:47The other four are reasons that
11:49really don't hinge on family's
11:51ability to accurately predict 1st.
11:53And let me also say that these
11:57justifications don't apply to all cases
12:00or all decisions in individual cases.
12:03And yet they provide what I think
12:04is a broader justification for why
12:06we often default to surrogates
12:08when when patient or default to
12:09families when patients haven't
12:11appointed the surrogate first if
12:13the patient has appointed a surrogate.
12:18A family member is a surrogate.
12:19We respect the surrogates.
12:21Are the patients right to self-determination
12:24by going with who they identified?
12:27Second, there is some thought that the
12:29patients family knows them best and
12:31is best able to speak to their values.
12:34I would just parenthetically add there
12:36are no studies that show that doctors
12:38are more accurate than families, OK.
12:39So if your claim is that,
12:41well families just aren't accurate enough,
12:44therefore doctors should make
12:45the decisions then that would.
12:47Require data that doctors actually
12:49do predict patients preferences
12:50better than families doing,
12:52and that data does not exist
12:54or those data don't exist.
12:55So that's the the second category is
12:57the non patient regarding grounds and
12:59so he argued that distributive justice
13:02requires consideration of the effects
13:04of decisions on others particularly
13:05the family who are likely to bear the
13:07the greatest consequences of decisions
13:09other than the patient themselves.
13:11And one example of this and this is
13:13actually one we've been dealing with
13:15is a family recently is consider
13:16the the case of a of a patient with
13:18advanced dementia and the decision
13:19is coming up whether to keep them at
13:21home or put them in an assisted living
13:23facility or a memory care center.
13:26It is the people who will be caring
13:28for that patient at home whose lives
13:30will be substantially altered by
13:31being a 36 hour a day caregiver.
13:33And so the argument here would be that
13:36those individuals have some claim
13:38to those decisions and some claim to
13:40involvement because of the impact on them.
13:433rd or 4th.
13:47Using families of decision makers
13:50reinforces the importance in Society of the
13:53family unit that much of society hinges
13:55on the work and the role of families.
13:57And this is something that society
13:58has an interest in fostering.
14:00And to do so we need to have a
14:02allow some space for families
14:04to have autonomy as a unit.
14:06So so goes the argument.
14:07And then finally the the the 5th
14:10ground that Dan laid out was simply.
14:12To adhere all of the things being equal
14:14to the the norms established by democratic
14:17political process in the United States.
14:19That democratic political process
14:21has said that families should be the
14:24surrogate unless someone else has been
14:26appointed directed by the patient.
14:29All right,
14:29so I I want to point out though that
14:32family as surrogate is not a universal
14:34norm and not even a norm in Western,
14:37not even a universal norm
14:38in in Western countries.
14:40And so this is a list put together by
14:44Alexander Letrent and France of who has
14:47decisional authority when a patient
14:49is hospitalized and incapacitated in France,
14:52England, Germany,
14:53Netherlands and Switzerland.
14:55In two situations, one,
14:56when the patient appointed
14:57a surrogate and two,
14:58when the patient did not.
14:59And what I think is really
15:01interesting here is that France
15:03and this is I actually confirmed
15:05this last week because it's still,
15:07I still find it hard to believe,
15:09but the physician is this the
15:11surrogate of record even when the
15:13patient has appointed someone else.
15:15The final decision authority in
15:17France is the physician in the
15:19in the acute care context,
15:21OK,
15:21that's if the patient has appointed
15:23a surrogate and if the patient
15:25did not appoint a surrogate.
15:26Also in England,
15:27Germany and the Netherlands,
15:28if the patient did not authorize using a,
15:31you know,
15:32a some legal form that each country
15:35uses who the surrogate would be,
15:38then it again defaults to the physician.
15:40They need to consult with the family,
15:42but the final decision authority is
15:44the physicians and then Switzerland has
15:46norms that approximate in United States.
15:52A second normative, sort of thorny
15:54normative issue is these legally designated
15:57default hierarchies of surrogates.
16:00And so if I understand Connecticut law
16:02correctly, and please please correct me
16:04if I'm if I'm getting it wrong, if the
16:06patient has not doesn't need a surrogate,
16:08then this is the default hierarchy.
16:10The spouse would be the surrogate.
16:11If there's no spouse, the adult child,
16:13and on down the list parent,
16:14adult sibling, and grandparent.
16:15And I I the the most recent version of
16:18Connecticut law I looked at did not have.
16:20Depends on that list.
16:21Is that still the case?
16:22Friends are not on the the legal hierarchy.
16:25OK, so really important and 35
16:28states have a hierarchy that
16:30looks something like this 15 go.
16:33I trained in California.
16:34We did not have a default list of surrogates.
16:37So when a patient had not appointed
16:40someone that the work of the clinical
16:42team was to get consensus among
16:44all family members who were there.
16:46And so this is a really,
16:47I think an important issue.
16:49I want to flag that I recognize that it
16:52having a default list is is pragmatic,
16:55it's sufficient,
16:56it allows the hospital to to run quickly
16:58in in cases to go more smoothly.
17:00But there are some real downsides
17:02to it and I I experienced or or
17:05saw the potential harms that could
17:08have come from from this.
17:10In my work at San Francisco
17:11General during the AIDS epidemic.
17:13And one of those risks is that there is
17:17no guarantee that the person highest
17:19on the list they have the closest
17:21love relationship with the patient or
17:23the OR will be best able to represent
17:26their deepest values and preferences.
17:28And this came out most clearly with gay men
17:31who were being admitted to the ICU with
17:33advanced new assistance printing anemonia.
17:35You know,
17:36this is at the time essentially
17:39lethal they had committed.
17:40Partners who?
17:41This is before same sex
17:42marriage in California.
17:43So those partners were considered
17:47friends and I would note in Connecticut
17:50they would be the the lowest on
17:52the hierarchy and not infrequently.
17:54These young men's parents would have
17:57very different value systems from
17:59their patients and would would say
18:01things like because our son is gay,
18:03he's going to hell. We love our son.
18:06We don't want him to go to hell.
18:07So continue life support so that we can
18:10keep him from going to hell and that is,
18:13you know obviously not a decision
18:15that is presumably grounded in the
18:18patients values and preferences.
18:20So tricky issue,
18:21what to do with these hierarchies but
18:23I just want to flag coming from a.
18:25They that did not have these hierarchies
18:27and now practicing in one that does that.
18:29I think there are real
18:30concerns with hierarchies,
18:31to the extent that they make assumptions
18:33that are often true but not always true,
18:35about who's best position to
18:37advocate for a patient and represent
18:39their values and preferences.
18:43All right, so moving from who should
18:45be making the decisions to how
18:46should they make the the decisions?
18:48What evidentiary standards
18:49should be used for surrogates?
18:51Should, should surrogates
18:52used to make decisions.
18:53And Dan Brock and Alan Buchanan
18:56have have done some of the the
18:58most seminal work on this.
19:00They're their recommendations in this book,
19:02deciding for others,
19:03form the the basis for the AMA Code
19:06of Ethics on surrogate decision
19:07making and many state laws.
19:09Now I would if anyone is really
19:11interested in surrogate decision making.
19:13Just deciding for others is a must read book.
19:17So they articulated at what what is
19:19called the tripartite evidentiary
19:21standard lexically ordered.
19:23So stated wishes substituted judgment
19:25and the best interest standard is this.
19:27Have folks heard of this before?
19:29Yeah most OK let me just for those
19:31of you who haven't let me just
19:32walk you through it.
19:33The idea here is that you you should use
19:35the highest standard that is feasible
19:38given the information available.
19:39So the the stated wishes standard is that
19:42you should enact the treatment preferences.
19:44That were previously formulated and
19:46somehow communicated by the patient,
19:48preferably in writing,
19:49but verbal or oral directives are
19:52accepted in many states as well.
19:53And the idea here is that
19:55the preference it's not,
19:57it can't just be a vague broad preference,
19:59it needs to be specific to the
20:01actual clinical decision at hand.
20:03And so,
20:03so the work done is just the
20:05surrogate stating what the patient
20:07had said would be their preference
20:10in the circumstance they're in.
20:12If that information is not available,
20:13if the patient did not articulate
20:15clear preferences,
20:15then the next standard is what's called
20:17the substituted judgment standard.
20:19And here are the work of the surrogate
20:21is to beechman shoulders call it donning
20:23the mental mantle of the patient,
20:25taking on the persona of the patient
20:27to try to make the the decision that
20:30patient would have made had they
20:32actually articulated a decision.
20:34And then if, if the surrogate says,
20:36listen, that's just not that's,
20:38I can't do that.
20:39I don't know the patient well enough,
20:41then the the third standard and
20:43the one that that the sorry would
20:45be asked to use is what's called
20:46the best interest standard.
20:48And this is where in the absence of
20:50clear knowledge of what the patient
20:51would have chosen to make the decision
20:53that best promotes the patient's interests.
20:55And we'll come back to this in a moment.
20:58And as I said,
20:59this is the the evidentiary standard
21:01and the the norms in the United States.
21:06And so I I briefly touched on this,
21:08but I want to come back to this.
21:10Pointing out that the work that we
21:12ask surrogates to do according to each
21:14of these standards is quite different.
21:16When the work that we asked
21:19surrogates to do when it is stated
21:22wishes standard is simply to parrot
21:24and report what the patient said.
21:27So there's not,
21:28it's not really a judgment role,
21:30that's a reporting role,
21:32arguably much easier and morally.
21:35That's burdensome to just say, well,
21:37here's what he said that he would
21:40want in this clinical circumstance.
21:42But the substituted judgment standard
21:43in the best interest standard,
21:45both rely on the family exercising
21:47judgment about either what would the
21:50patient choose or what's in their best
21:52interest since they didn't choose.
21:54And so these are, you know,
21:56this is really different cognitive work.
21:58On the one hand,
21:59they're just a mouthpiece or a
22:01communicator of preferences,
22:02and the other,
22:03they are actually exercising a good deal
22:05of judgment about morally weighty decisions.
22:08And this is where I think empirical evidence
22:10is actually quite important to figure out.
22:12You know,
22:12what do we need to be able to do to help
22:16surrogates really function in the role, so.
22:20If you look at sort of empirically
22:22how many adults have made have
22:24completed an advanced directive,
22:25only a third.
22:26So that means 2/3 of patients at
22:28least haven't created it and have no
22:31chance of having a written document
22:34that satisfies the stated wishes.
22:36Criterion or or standard.
22:39In addition,
22:40those who articulate or or
22:42complete advanced directives,
22:44remember most advanced directives
22:45are these boilerplate directives that
22:47really only apply in the clinical
22:49circumstances of a terminal illness
22:51or a persistent vegetative state.
22:52And most patients who wind up in the
22:54hospital are not in one of those two states.
22:56So most advanced directives are
22:58not dispositive for what treatment
23:00decisions should be made.
23:02OK and then we we also looked at this,
23:05we have a we.
23:07A multicenter study about 10 years
23:09ago in which we audio recorded
23:11250 ICU family conversations about
23:13goals of care for the interest and
23:15the focus was really looking at how
23:17doctors are talking about prognosis
23:19and what families understand.
23:21But I had a trainee who did a
23:24secondary analysis because he was
23:26really interested in answering this
23:28question of what often are the the.
23:31Or how often is the information offered
23:33by the family in these meetings
23:36clearly dispositive for the decision at hand,
23:38which is to say there is no
23:40interpretation or judgment required
23:41by the surrogate or the doctrine.
23:43The family just have to say,
23:45well, that, you know,
23:46dad's in the ICU with an acute
23:48stroke on a ventilator, hemiparetic,
23:51very likely to have substantial neurologic
23:54deficits and and hemiplegia and oh,
23:56by the way,
23:57he has an advanced directive that
23:59says if he's in an ICU with a stroke.
24:01Can we predict do not continue life
24:03support and so how often did that
24:05happen less than 1% of the time.
24:07There were actually a couple decisions
24:09in this in this 250 patient cohort
24:11that where it really did seem that
24:13the information from the family that
24:15that the patient had reported to them
24:17was was spot on with the clinical decision.
24:20But 99% of the time not the case.
24:22And Joan Tino in the support trial
24:24that we'll talk about in a couple
24:26of minutes also looked at this
24:27and found that about 3% of decision, 3% of.
24:31Patients advanced directives.
24:34Actually had this positive
24:35treatment information in the
24:375000 patient support cohort.
24:39So again, really, really low numbers.
24:4197% of the time we're going to be asking
24:44surrogates to be exercising judgment
24:47about really morally weighty decisions.
24:49And again this is all the adult context.
24:51I want to flag that the only relevant
24:54criterion for the pediatric context
24:56is the best interest standard, right,
24:58pediatric patients with the, you know,
25:01carving out the exception for minors or
25:04for sorry for adolescents that patients?
25:07Generally, are not able to form values
25:09and preferences and therefore the stated
25:11wishes standard doesn't really apply.
25:13Similarly, since they have not
25:16really formulated preferences,
25:18the the substituted judging
25:20standard also would not apply.
25:22All right, so.
25:23What about these these standards we'll
25:25we'll set aside the stated wishes standard.
25:28There are a host of empirical
25:30problems with that standard.
25:31Whether the the stated preferences
25:33are are actually well informed,
25:35whether they're contemporary.
25:36You know the advance directive was 20
25:38years ago and now the decision is at hand.
25:40But let's just focus on the the
25:42three main normative critiques of
25:44the substituted judgment standard
25:45and the best interest standard.
25:47And these are they.
25:48So the first is that the SJ,
25:51the substituted judgment standard,
25:52is a cruel charade and.
25:54Yeah,
25:55dancel Macy and Dan Brudney
25:56have both written,
25:58I think they were both at
25:59Chicago at the same time.
26:00And both have written, I think,
26:01really nicely about this.
26:03And they argued that asking what
26:05a patient would choose when the
26:07patient has not actually chosen may
26:09distress surrogates and mistakenly
26:11focuses on promoting autonomy,
26:13which is not possible when the
26:15patient hasn't chosen something.
26:16You can't promote self-determination
26:18or autonomy if there's been
26:19no autonomous choice.
26:20And instead they recommend
26:22that clinicians should seek.
26:24Not to unearth the patients
26:27unknown treatment preferences,
26:29but instead they're to unearth
26:30their broader values and to make
26:32right and for the clinicians then
26:34to make recommendations that
26:36promote authentic choices,
26:37those that really represent the
26:40patients commitments and values.
26:42So that's the that's the first critique
26:45of the substituted judgment standard.
26:47And then there are two critiques
26:48of the best interest standard,
26:49the 1st and Doug Dekama has has,
26:52I think most eloquently put forward this
26:54issue is that the best interest standard,
26:56taken literally,
26:57is unfairly demanding,
26:59which is to say,
27:01must parents,
27:02let's just take a pediatric example,
27:03must parents actually do what is
27:05literally in the best interest of
27:07their child when making decisions?
27:09And he gives the example of.
27:12Imagine a parent with multiple
27:13children and what is best for one
27:16child actually creates a problem
27:17for another child such that you
27:19can't simultaneously promote the
27:21best interest of both children.
27:23It's an impossible standard and
27:25in some circumstances and and
27:27Doug Diekema argued that instead
27:29we instead of literally trying to
27:31achieve what's best for for children,
27:34that the threshold that we should
27:35use for when we
27:37question or seek to override parents
27:39is a harm threshold when the
27:41decisions that they're articulating.
27:43Create a substantial risk
27:44of harm for the patient,
27:45not is this the the absolute
27:48best decision for the patient?
27:50And then finally,
27:51Zika Emanuel has articulated an argument
27:54against the best interest standard,
27:56which is essentially that it's
27:57vacuous or empty. That it's it's,
27:59it's a there's there's nothing there.
28:01And it's highly problematic in
28:03a in a pluralistic society.
28:04The idea here is that the best
28:07interest standard to be meaningful,
28:08one has to infuse it with some
28:11conception of the good that is widely
28:13held by citizens in a society.
28:15And when you live in a pluralistic society,
28:17that's actually not possible so.
28:20That one way Zeke did this
28:21that I thought was really nice,
28:22is he laid out different conceptions
28:24of the good and he talked about of
28:26patients who were vitalists and talked
28:27about patients who are rugged individualists.
28:30Vitalist believes that that
28:32life should be continued.
28:35If you can continue it for a millisecond,
28:37it should be continued because the
28:39value of life is merely being alive.
28:41That that's all that is required
28:43for a meaningful life.
28:44The rugged individualist.
28:45And that's, yeah,
28:46I think he used a different name.
28:47They are the autonomist believes
28:49that the value in life.
28:50Hinges on on being able to make
28:52one's own decisions and be an
28:54autonomous agent in the world.
28:56And once that's lost,
28:58then the good in that life is also lost.
29:01Those two individuals that their
29:02best interest when when they're
29:04facing medical decisions would
29:05be quite different according to
29:07their very different values.
29:09And so seeks claim,
29:11is that we can't really formulate
29:13anything substantive about a best interest
29:16standard and in a pluralistic society.
29:20OK. Stepping back from the tripartite
29:24standards, I also again want to
29:26point out that these standards,
29:27this is the the these are the
29:30norms in the United States.
29:32They are not the norms elsewhere.
29:34And. One place in particular
29:36where I think this has come across
29:39clearest is in the United Kingdom.
29:42This is a document that the British
29:44Medical Association released in 2019
29:46and it's titled Best Interest Decision
29:48making for adults who lack capacity.
29:50Their framework is all about best interests,
29:53though they have a broad
29:54conception of best interests.
29:55Which is to say, well,
29:57I'll talk about it a second.
29:58But they they have a 2 standard framework
30:00for how surrogates should make decisions.
30:02One is the stated preferences standard,
30:04akin to the stated wishes.
30:05Standards of Brock and Buchanan
30:07and if that's not present,
30:09if they're if there are no
30:10directives that are that clear,
30:12then it's a best interest standard,
30:13and they articulate this
30:14in the following way.
30:16Clinicians,
30:16when making the best,
30:17when making best interest judgments,
30:19must consider the person's welfare in
30:22the pot and the widest possible sense,
30:23and consider the individual's broader
30:25wishes and feelings and values and beliefs.
30:27All decisions should follow careful
30:29consideration of the individual
30:31circumstances of the patient and
30:32focus on reaching the decision
30:34that is right for that person.
30:35Not what is best for for those around them,
30:38other regarding considerations or
30:40what the reasonable person would want.
30:43So this is the the UK approach.
30:46I think it's just valuable to see that
30:48they've entirely done away with the
30:50substituted judgment standard or or
30:52have just chosen not to include it.
30:54Although interestingly the
30:55substituted judgment standard arose
30:57out of English case law,
31:00so came from England,
31:01they no longer use it and yet we have
31:03we have decided to continue to use it.
31:07OK, that I'm going to stop there
31:09with the normative aspects of this
31:11and and make an empirical turn.
31:12I I would hope that we can come back to
31:14some of these narrative issues that are
31:16quite thorny in the discussion section.
31:18But I want to talk now about work
31:20that has been done to try to improve
31:23the process of surrogate decision
31:25making for seriously ill adults.
31:27Because I think there are quite a few
31:29lessons learned, lessons to be learned,
31:30not only about how to design
31:32better interventions,
31:33but also how to think about training
31:36the next generation of clinicians.
31:38So the first trial that I want to
31:40talk about is the support trial
31:42and this was a really, you know,
31:45you often hear the support trial
31:47comma a landmark trial.
31:48It really was a landmark trial.
31:50It was a cluster randomized trial done
31:52before people even knew what a cluster
31:54randomized trial was of about 5000
31:56seriously ill patients with an end
31:58stage condition admitted to the hospital.
32:00And the goal was to try to to try to
32:02improve the end of life care and the
32:04decisions made by those patient surrogates,
32:06what the intervention entailed.
32:07Was a what was called the support
32:10Nurse giving every day or every every
32:12several days giving physicians in
32:14the intervention arm estimates of the
32:17patient's likelihood of six months survival,
32:19they're likely survival from
32:20CPR and then their likelihood of
32:22functional disability at two months
32:24using validated models that have
32:26been developed in the cohort.
32:27And then the support nurse also went
32:29to the the patients families and worked
32:32to elicit patients preferences around
32:34use of life support and code status
32:36and then share this information.
32:38Of the clinical team.
32:39So really trying to get at let's
32:41make sure the doctors have good
32:43medical information about prognosis.
32:45Let's make sure that that we talk
32:47to families about the patients
32:48values and preferences and get this
32:50information back to the doctor.
32:51So I think in many ways a thoughtful
32:54intervention that was entirely negative,
32:57no effect on end of life care or cost.
32:59These are just.
33:01The main outcome measures they
33:02looked at no difference in the
33:04median time until a DNR order was
33:06written among dying patients.
33:07No difference in DNR agreement,
33:09which is to say did the doctor
33:10know what the patient would want
33:12in terms of their code status.
33:13No difference in the in patients dying,
33:17I think it was after more than seven
33:19days in an intensive care unit.
33:20No difference in the proportion of
33:22patients dying in pain and no difference
33:24in the use in the overall healthcare
33:27costs associated with these patients care.
33:29So a stone cold negative trial.
33:32And what I think is important when you
33:34look at the the conceptual or theoretical
33:36underpinnings of the support trial,
33:38it was explicitly grounded in what's
33:40called expected utility theory or or
33:43traditional decision analytical theory.
33:45An easy way to think about
33:46this is it's essentially
33:48the rational actor model that that says
33:50with good information about outcomes of
33:53of treatment and the values that of that
33:56treatment to patients and their families.
33:59This will reliably lead to good
34:01decisions that will be utility
34:02maximizing that will be logical.
34:04They'll be rational.
34:06And that's was obviously not the case.
34:09I think the, the the clinical model that
34:12this follows or a way to think about this,
34:15the mindset is that really
34:17of informed choice is that.
34:19What a doctor needs to do is simply to
34:21make sure that the patient's family
34:23understands the patient's prognosis,
34:25understands the patient's values,
34:26understands how to apply those values
34:28to the decision at hand and understands
34:30the the available treatment options.
34:31If that's done,
34:32then the family should reliably
34:34come to good decisions.
34:36And I think what we saw here is that at least
34:38in the support trial that was not the case,
34:40that that there there are a number
34:42of assumptions embedded in there
34:43that did not prove to be true.
34:45Now you might say,
34:46listen, that was.
34:4825 years ago called the the norms
34:50of medicine were very different
34:51in terms of end of life care.
34:53So maybe it's not a fair test but I
34:55want to present another trial done
34:56now just in the last five years that
34:59I was part of and Chris Cox led this
35:01was using we developed a very slick
35:04electronic web-based decision aid
35:06for the surrogate decision makers
35:08of patients receiving prolonged
35:10mechanical ventilation and ICU's
35:12again adult patients had been on
35:15the vent for longer than 10 days.
35:17Uh,
35:18this was an RCT in 13 US ICU 277 patients,
35:22and the intervention was a decision
35:26aid that adhered to existing
35:28standards for for decision aids.
35:30And it helped families understand what it
35:33means to have prolonged chemical ventilation.
35:36It helped them understand
35:37what a ventilator is,
35:38what a tracheostomy is it.
35:40It exposed them to the possibility
35:43of different treatment options,
35:45which is to say ongoing intensive
35:47treatment with tracheostomy.
35:48A full comfort focused plan of
35:49care or a time limited trial?
35:51Those were the three options that
35:53were laid out and then it it through a
35:56series of interactive exercises asked
35:58families to sort of think through
35:59what are the patients values and
36:01preferences that would be relevant
36:02to this decision and then give a
36:04number of tips for how to communicate
36:06about this with practical team.
36:08So again,
36:08really grounded in sort of the
36:10rational actor model,
36:12but a much more modern spin on it.
36:14And what we found unfortunately was
36:16again a stone cold negative trial
36:18that the intervention had no effect
36:20on overall healthcare utilization
36:22or decisions to transition to
36:24comfort focused care,
36:26no effect on surrogate psychological
36:28outcomes and problematically no
36:30effect on surrogates perceptions
36:32of the patients prognosis.
36:34What we found is that it surrogates
36:37in the intervention arm remained
36:39overly optimistic about the
36:41patient's likelihood of one
36:43year survival estimating it.
36:45Or reporting a mean 90%
36:46chance of 1 one year survival compared to
36:49the model drive number of 56% chances.
36:51And then the other thing that
36:53was also I think revealing and
36:55concerning and this parenthetically,
36:57This is why it's really important to
36:59do good process evaluations as part
37:02of behavioral health interventions.
37:04We found that surrogates were 43% of
37:08them favored a treatment option that was
37:10more aggressive than what they reported
37:12the patient would choose for him or herself.
37:15So they are systematic.
37:16We ask them, you know,
37:17what do you think the patient would choose
37:19and what do you think we should do here.
37:21And 43% of the time the surrogate was
37:23picking something more aggressive
37:24than what they thought the patient
37:25would choose for themselves.
37:27So that again, that's not a fact issue.
37:29That is there's something about.
37:33Choosing a treatment option
37:34that likely will lead to death,
37:37that is quite aversive for families and
37:39I think we need to keep that in mind
37:41and and we'll come back to this in a moment.
37:44But the bottom line here again,
37:45this trial entirely negative.
37:49So why, why?
37:51Why have these information
37:53focused interventions failed?
37:55What do you what do you think about
37:57a moment here to pause before before
37:59I give you my thoughts? Yeah.
38:01One thing is just that we're focusing on
38:03giving information, but like we're not.
38:06Actually offering recommendations or
38:07like incorporating what the values and
38:10preferences are to then say what we
38:12think morbidity would look like and
38:13what quality of life would look like.
38:15I mean, I do think families have gotten
38:17more sophisticated and reflecting on values
38:20and preferences when asked about that,
38:22but I think we still make it all about.
38:25That in the moment decision instead
38:26of the three month,
38:27six month recovery that it might
38:29take without a guarantee that they're
38:30going to be able to return to the
38:31golf course or pickleball court.
38:33Yeah.
38:33So. So maybe there's there's more
38:35that needs to be done even when
38:37families that they actually truly
38:39understand patients values and
38:41preferences to help make that
38:43directly tied to the implications
38:45for certain treatment choices.
38:46OK Mark what else?
38:48It's still premised on this rational
38:50actor theory and you know I
38:52think that a lot of politicians
38:54know that that's just not.
38:55The way people are thinking,
38:56yeah, the information is important,
38:58but there's so many
38:58other factors that are
39:00going into preferences.
39:01Yeah, yeah. So many other factors
39:03that are going in and and maybe.
39:05Things getting in the way of families
39:08actually making the decisions that.
39:11Possibly in their hearts, they think
39:12is the right decision for the patient.
39:15OK, so let's keep your mind on
39:17what could those things be, yeah?
39:20Yeah, that you know,
39:22traditional economic theory I separating
39:24a little bit from this is is based on the
39:26idea that people are rational actors.
39:29But the field of behavioral economics
39:31has emerged largely as a response to
39:34the fact that in indeed you're not
39:36often rational actors and we tend to
39:39overweight and underweight certain
39:41considerations into your point families.
39:43Surrogates tend to not want to choose
39:45something that they think is more
39:47likely to lead to a sooner death
39:49because there's sort of just default.
39:51Understanding in American culture that
39:52death is bad and to be avoided and
39:54it's a failure and you want to fight.
39:57And you know we have all of this
39:59language around a rescue depots and
40:01fighting and being tough and being
40:04strong and and so perhaps looking
40:06towards behavioral economics to
40:08understand the way choices are
40:10presented and maybe changing the
40:12default might be more effective in
40:15helping to sort of align those decisions.
40:18Yeah. So this notion that there are things.
40:21Other than information that can
40:22substantially shape decisions.
40:24And some of the things could be
40:25have to do with cultural norms
40:27they could have to do with.
40:29Families and we'll talk about this in
40:32a second, but families perception of
40:35moral blame blame worthiness, right?
40:37To what extent does an information focused
40:40intervention attend to the sense of
40:42moral guilt and blame that might come up?
40:46Others, yeah.
40:48I guess I'm wondering like with the
40:52outcomes that like the best decision is.
40:56Transition to comfort or health
40:57care utilization, I I feel like.
41:00That's kind of like an arbitrary,
41:02yeah. What gives here? That doesn't seem
41:04very patient centered, does it? No.
41:08Different way. These interventions
41:12to improve family understanding and
41:13position understanding of patient
41:15values didn't make a difference,
41:17so maybe we already were.
41:19Doing enough of that.
41:21Yeah. So I think, right,
41:23you could purely hypothetically could say,
41:26yeah, listen, there's no problem there.
41:28This is just an intervention trying to
41:30intervene on something that's not broken.
41:33It's not going to show an effect.
41:34There is a host of empirical literature
41:37that there are quite a lot of problems
41:40with how families make decisions for
41:43incapacitated patients as well as a lot
41:46of data showing that the process by
41:49which clinicians engage with families.
41:51Prognosis, values, treatment options,
41:53recommendations is often quite abysmal.
41:55So I think all of these studies were
41:57premised on we all think that there's a
41:59problem with the end of life decision making.
42:01There's good empirical data for it.
42:03Let's see if we can improve it.
42:04But I think the other part of this that's
42:06important is none of these outcomes are
42:08really about goal concordant care, right?
42:10They just.
42:12I think we should come back to
42:13that in the discussion section.
42:14I'll show you a couple of trials that
42:16did have that of an outcome measure,
42:17but that if you know there are multiple
42:20outcomes of interest when we're
42:22studying surrogate decision making,
42:23arguably from a from a a
42:26normative perspective,
42:27that the degree to which the decision
42:29reflects what's important to the patient,
42:31IE is concordant with their values and
42:34preferences is a very important outcome.
42:36Yes. So I agree with that.
42:38Let, let,
42:38let me go on and then we'll have some
42:40more time in the discussion, OK.
42:42So I,
42:43I think you all have,
42:45have largely nailed the reasons why
42:49these informational interventions
42:50were not successful.
42:51I do just want to point out that we
42:54shouldn't leave this room pessimistic
42:55about giving information to patients and
42:57helping them make more informed decisions.
42:59This is a Cochrane review of 31,000
43:02participants and more than 100 studies
43:04of different kinds of decision.
43:06It's for a variety of health decisions,
43:08and what they found is that across a
43:10wide variety of decision contexts,
43:12people exposed to decision aids are
43:14better informed, clearer about their values,
43:16and have more accurate risk perceptions.
43:18Growing evidence that decision aids
43:20may improve values congruent choices.
43:22So lots of decisions and medicine,
43:25giving information,
43:26helping people think about their values,
43:28that may well be enough.
43:30And the ICU context it seems to not be.
43:34And so why not?
43:35Well again,
43:36this,
43:36these are data that largely
43:38just validate the kind of things
43:40you all just raised in here.
43:42So a variety of studies that really
43:44explore the the perspectives of
43:46family surrogate decision makers and
43:48adult intensive care units and some
43:50of the overarching themes and this,
43:52this first quote is from the
43:54study that Yale Schenker led when
43:56she first got to Pittsburgh.
43:58Surrogates experienced significant
43:59emotional conflict between the desire to
44:01act in accordance with their loved ones.
44:03Values and one not wanting to feel
44:05responsible for a loved one's death.
44:07This is the the the,
44:08the guilt and blame aspect of things.
44:10And then also a desire to
44:12pursue any chance of
44:13recovery. I think also a linked thing
44:15to the cultural norms around respect,
44:18meaning doing whatever you can
44:20to help the patient survive.
44:21So again, that these are not
44:23informational issues, right?
44:24These are about psychological considerations,
44:27about family relations,
44:29about moral blame.
44:32Related, but I think it's just we
44:35often have these conversations
44:36in a vacuum when we think about
44:38decision making in the ICU,
44:39but we forget about the social context
44:41in which these decisions happen.
44:43We did a study in which we found
44:45that surrogates having previously
44:46felt discriminated against in the
44:48healthcare setting previously,
44:49which is to say not during the the the
44:52index hospitalization that we were studying.
44:54This was strongly associated with
44:56conflict with clinicians about
44:57end of life decisions in the ICU
44:59with an odds ratio of 17 1/2 so.
45:02You know,
45:03keeping in mind that what patients and
45:06families bring into the ICU setting,
45:08whether they're this is the structural
45:10racism or perceptions of ableism,
45:12if their loved one has a disability,
45:14these things also will may potentially
45:17strongly influence the the way
45:18surrogates make decisions and how
45:20they interact with the clinical team.
45:25There's also an enormous literature
45:27about how strong emotions affect
45:30how people reason and deliberate,
45:33and this is largely this comes
45:35from experimental psychologists.
45:37This is a really nice review
45:38article if people are interested
45:39in learning more about it.
45:41But the gist of the findings
45:43is that intensive emotional
45:44states like fear or anxiety,
45:46the kind of things that arguably
45:47families experience quite a lot when
45:49their loved one is acutely ill,
45:51produce deficits in people's
45:53reasoning ability, such as people.
45:55Have lower ability to recall information
45:57and organize this information in memory,
45:59which is to say,
46:00less ability to work with it.
46:02They scan alternatives to decisions
46:05and in a more haphazard fashion,
46:07which is to say they they may not reliably
46:09consider each available treatment option.
46:12And then they select options without,
46:15as I said, select options without
46:16considering every alternative.
46:17And finally,
46:18they process persuasion
46:19arguments less thoroughly.
46:21And what this means the persuasion
46:22argument might have might look something
46:24like a doctor giving a recommendation.
46:26And so.
46:27If people in what I think of as
46:29really hot states you know flooded
46:30states are are not really able to
46:33hear doctors recommendations and
46:34Kathleen that the the thought that
46:37that may be giving recommendations
46:39more will be the fix could be
46:41inhibited or impaired by families
46:42inability to really hear them
46:44because of the flooding that
46:46they're experiencing emotionally.
46:49So what do we do with this?
46:51Well. Nick Deon Odom,
46:54who's a nurse researcher at Alabama,
46:56and I wrote a paper published
46:58last year in which we tried to
47:01reconceptualize how we should
47:02be thinking about interventions
47:04to support surrogate decision
47:05makers of critically ill patients.
47:07And the gist of it is it
47:10is in this window here.
47:11Decision support that focuses on
47:13medical facts alone mistakenly treats
47:15the act of deciding for others
47:17as a purely cognitive exercise,
47:19rather than one that also entails
47:22emotional and psychological dimensions.
47:23So if we're going to improve decision making,
47:25we probably need to be,
47:27at least in some cases and in a tailored way,
47:30attending not only to informational issues,
47:32but also to the the high emotions that
47:33can come up and also the psychological
47:35barriers to making decisions that
47:37are caught concordant or congruent
47:39with patients values and preferences.
47:43This there's also a paper here by
47:47power that that has been around
47:50for 10 or 11 years now that that
47:52addresses what's called the cognitive
47:54emotional decision making framework.
47:55And this is another way of thinking
47:57about the interplay of emotions and
47:59and rationality or or emotion and
48:01cognition and how people make decisions.
48:03And it's a, I think a great read if
48:06folks want to think about this more
48:09from the experimental standpoint.
48:10OK, so let me let me end by
48:12showing two studies that I think,
48:15at least in part embody this multidimensional
48:19approach to surrogate support.
48:22And so the 1st is a trial
48:24done by Randy Curtis.
48:25Randy is at many of you know Randy.
48:27He's at UW. He's a fantastic scholar.
48:30He's a longtime mentor to me.
48:33But Randy conducted a randomized trial
48:36of what he called a communication
48:39communication facilitator for patients
48:41in ICU's at high risk of death.
48:45And essentially the intervention randomized
48:47it to the communication facilitator
48:50or usual care, the communication.
48:52Facilitator was a a nurse or social
48:55worker who underwent it was a week
48:57of training in mediation theory,
48:59theory and how to support families
49:02emotionally and psychologically through
49:03traumatic circumstances in the ICU.
49:05And so basically this boiled down to the
49:08nurse delivering tailored support to the
49:11families based on a coping styles inventory,
49:14facilitating communication with the ICU team,
49:16and then identifying conflict in its
49:17what I would think of as sort of its
49:20nascent stage rather than well formed.
49:22And intervening early to help mediate
49:24that conflict with the clinical team.
49:26So,
49:27you know,
49:27compare that to the support intervention
49:29that was all about prognosis,
49:31communication and patient values and making
49:33sure that that everyone on on the in
49:36dyad or Triad knew about that information.
49:38This is a much broader conception of
49:40what it means to support surrogates.
49:42And lo and behold,
49:43what they found is that the
49:45intervention had positive effects
49:47on a variety of outcome measures.
49:49Unfortunately,
49:50no,
49:51there was no measure of gold concordance
49:52of care in this study written.
49:54Randy's interest was much more on that.
49:56The impact on on surrogate
49:58decision makers of the process,
50:00their psychological distress and
50:01then also healthcare utilization and
50:03what he found is that patients in the
50:06intervention arm had lower symptoms
50:07of depression at six months and also
50:09lower symptoms of PTSD at six months,
50:11two of their main outcome measures.
50:14They also looked at ICU length of stay
50:18among people who died on with the idea that.
50:21Shorter duration of intensive treatment
50:23prior to death is probably a good thing
50:25as long as the mortality rate is not higher.
50:27The mortality rate was not
50:28higher in the intervention arm.
50:30What they found is that among decedents,
50:32the ICU length of stay was substantially
50:35shorter in the intervention
50:36arm as were the costs.
50:38So big changes in healthcare utilization
50:41with this kind of intervention.
50:44And then the last,
50:46the last study that I want to
50:48present is a trial that we did at
50:51the University of Pittsburgh and UPMC
50:53Health System and published in 2018.
50:56And this was rather than.
50:59Having an external person,
51:01a communication facilitator,
51:03joined the ICU team.
51:04We hypothesized that it would be
51:07possible to train up people on the
51:09existing ICU team and restructure
51:11family support processes in the ICU
51:14in order to better support families
51:16without having to to add yet another
51:18person to the already complex ICU team.
51:21And so we we conducted a step
51:23wedge cluster randomized trial
51:24comparing usual care to what we
51:26call the partner intervention,
51:27which is a protocolized
51:28family support intervention.
51:29Delivered by the existing
51:31interprofessional team,
51:32it was actually a nurse,
51:33nurse and social worker LED intervention,
51:36but involved nurses,
51:38social workers,
51:39palliative care if they were consulted
51:41and that the ICU clinical team
51:44we randomized 14120 incapacitated
51:45critically ill patients at high
51:47risk of death or severe disability.
51:49And we looked at a variety of
51:51outcome measures, surrogates,
51:52long term psychological distress,
51:54a measure of patient centeredness
51:55of care which begins to get at this
51:58notion is that are the care decisions more.
52:00Do they seem more consistent with
52:02the patients values and preferences
52:03or were they were these issues more
52:06attended to in the decision making
52:08process a measure of the quality of
52:10clinician family communication, ICU,
52:11length of state and healthcare costs?
52:15And so as I said, this was a,
52:16this was a multicomponent intervention that
52:18was overseen by nurse leaders in each ICU.
52:20Each of these nurses underwent 16
52:23hours of intensive communication
52:25skills training about how to support
52:27families both emotionally and again,
52:29regarding the psychological
52:31complexity of being a surrogate.
52:33And then the each ICU implemented a care
52:36pathway and I'll show you in a moment of
52:39family support pathway that every single
52:41patient in the intervention arm got.
52:43And then there was a lot because this is a.
52:45You know, a complex behavioral intervention.
52:47There was a lot of on the ground
52:50support to help this new model of
52:53care actually take root in the ICU.
52:56And so this is too small for you all to see,
52:57but basically on the X axis is days,
53:00and on and in the green boxes is what
53:03the partner intervention entailed.
53:06The gist of it is that the partner
53:09intervention entailed a formal
53:10interprofessional family meeting
53:11within 48 hours,
53:13and then every five to seven days thereafter
53:15that the partner nurses organized.
53:17The partner nurses also immediately upon
53:20the patient being entered into the trial,
53:23met with the family to establish Rapport.
53:25To get a sense for who they are,
53:27who the patient is as a person,
53:29and make sure they know that their
53:31contact person for the whole ICU
53:33stay is the partner nurse or one
53:35of his or her colleagues.
53:36Then, before each family meeting,
53:39the partner nurse sat down with the
53:41family and walked them through,
53:42essentially a protocolized way to begin
53:44to think through the patient's values that
53:47their main questions for the clinical team,
53:49what concerns they most had,
53:51what things that they thought the
53:53patient would most be afraid of or
53:55most worried about in the context.
53:56Of the of this current illness
53:58and then the the partner nurse
53:59was there at the family meetings
54:01with the interprofessional team.
54:03These meetings were led by the docs,
54:05but the nurses were trained to really
54:07be monitoring the families for sort of
54:09emotional overwhelm or or monitoring
54:11for situations that seemed like
54:13the family was not understanding.
54:14And we trained them to have ways to sort
54:16of slow the conversation down or to,
54:18you know,
54:19offer a a tissue to the family as
54:21a way to get the doctor to see
54:23that what he or she is saying is
54:25quite overwhelming for the family.
54:27So lots of subtle clues or cues to
54:29try to either slow the conversation
54:32down or have key information that
54:34the family may not have quite
54:36understood or or gotten repeated.
54:38And then debriefing with the,
54:41the clinical team after that.
54:42And so this was the cadence that
54:44happened throughout the entire ICU stay.
54:46The family knew every day they'd be
54:48talking to the partner nurse and
54:50sometimes the conversations were 30
54:51seconds and sometimes they were 30 minutes.
54:53But this was,
54:54you know,
54:55meant to be an interprofessional
54:58team delivered intervention.
55:00And what we found is that it did not at
55:02all impact surrogate psychological
55:04distress at six months,
55:06no difference in their symptoms
55:07of anxiety or depression and
55:09no difference in their PTSD.
55:10Symptoms at all really,
55:11really no, no effect on these
55:14long term psychological outcomes.
55:16But on every other measure that we studied
55:18the intervention had a positive effect.
55:20So on measures of the extent to which
55:22families felt that the communication
55:24quality with the clinical team was good,
55:27there was a significant improvement
55:28between the control and intervention
55:30arm and and for me as someone who cares
55:32quite a lot about patient centered care,
55:35we also administered to surrogates at
55:38three months a validated inventory of.
55:41Their perceptions of the degree to
55:43which the care was centered on the
55:44patient as a person and what we found
55:46is a significant increase in the
55:48proportion of families that said yes,
55:50that the care was highly consistent with
55:52my loved ones values and preferences,
55:53so a 15% increase,
55:55which is a pretty big effect size
55:58for this kind of intervention.
56:01And then in terms of healthcare
56:03utilization and cost,
56:03similar findings to what Randy found,
56:05Randy Curtis found with his communicator,
56:08his communication facilitator
56:09study decreased length of stay
56:12among the patients who died but no
56:15change among survivors,
56:16decreased hospital length of stay
56:18and decreased total hospitalization
56:20costs and direct variable costs.
56:22And for those of you who are interested
56:24in the the economic side of this,
56:27we also calculated how much it cost
56:28to deploy the intervention per patient
56:30which was inclusive of the nurses.
56:32Time the training costs and the
56:34and the cost to support the
56:36ICU's in this longitudinally and
56:38it was about $170 per patient.
56:40So the economic argument was very
56:42strong for this and as well as the
56:45ethical argument and I think this was
56:47you know even before these results
56:49were published in the New England
56:51Journal the UPMC health system said
56:52we're we're going to spread this
56:54across all forty of our hospitals
56:55and the health system and they have
56:57done that to this day with a a large
57:00investment of resources to train.
57:02People yearly in this in this intervention.
57:06OK,
57:06so those are two different interventions,
57:08both positive on important outcomes,
57:10but not all outcomes grounded in in
57:12a much more broad conceptualization
57:13of what it means to support
57:16surrogate decision makers.
57:17And the last study that I
57:19just want to flag for you,
57:20we have a trial ongoing now where
57:22we're testing actually whether
57:24early integration of palliative
57:26care specialists into the care of
57:28patients with advanced critical
57:30illness improves outcomes.
57:31Again,
57:32the same kind of outcomes
57:33that that I discussed.
57:35This is again,
57:36yet a different way to deliver an
57:39intervention that attends to not
57:42only the informational concerns,
57:43but also the psychological concerns
57:45and the emotional concerns that
57:47come up for surrogates in the ICU.
57:48Space we the target is 500 patients.
57:51We're about halfway through enrollment.
57:52So we expect that within the
57:54next year to two
57:55years, we should have results of this trial.
57:57So stay tuned for this one.
58:00And then my last slide is this.
58:04I I think it's really important to think
58:07about if we agree that to support families
58:10is going to require more than information.
58:13I think there are big implications for how
58:15we train the next generation of clinicians.
58:17We already struggle to train clinicians
58:19in how to have a good informed consent
58:22conversation right and how to just talk
58:24about prognosis in clear ways or even
58:26just how to elicit values and preferences.
58:29But I think what these studies.
58:30Suggest is that it's going to
58:32take even more than that to help
58:33surrogates really make good decisions
58:35and feel supported in the process.
58:37And so we,
58:37I think we need to refocus or or
58:40expand the focus of our educational
58:42interventions to really focus on
58:43framing clinicians on how to support
58:45families in traumatic circumstances.
58:47And there's a whole literature on
58:49trauma informed care that I think
58:51is really promising in this regard.
58:52And then also.
58:53Considering and and pursue developing
58:55ways to train clinicians and how
58:57to support families through the the
59:00psychological complexity of of potentially
59:02withdrawing life support on a loved one.
59:05You know how to respond when it's
59:07clear that blameworthiness is coming
59:09up or there are family dynamics and
59:11and the family does not that family
59:13who's the main surrogate decision maker
59:14feels that they will be ostracized
59:16from the family of for a particular
59:18decision that they need to make.
59:19You know these are when you think
59:20about it that sort of university
59:22classroom level these are not 101.
59:24Introductory level skills.
59:25These are very high level skills,
59:27and so in addition to thinking about
59:29let's let's develop good interventions
59:30to to try to improve these outcomes.
59:32I think we also need to leave open
59:35the possibility that these skills are
59:37too complex to expect most clinicians
59:39to do them well and within again,
59:41thinking about whether specialists like
59:44palliative care specialists might be
59:46for select cases of a better approach.
59:48OK. I'm going to end there.
59:50It looks like we have my right that we
59:52have about 1/2 an hour for questions.
59:54OK, thanks very much.
59:55We're going to set up.
01:00:02We're going to set up up
01:00:03here for the questions.
01:00:03Are you going to bring me
01:00:04that laptop? OK.
01:00:09And and that the mics, the ceiling
01:00:10work well enough such that such
01:00:12that you guys can ask questions,
01:00:13we'll we'll we'll do this from here.
01:00:16I said here, you're the one for you.
01:00:20I'll just, I'll take,
01:00:21I'll just set it down.
01:00:22I'm just speaking.
01:00:25Grab a chair.
01:00:32And in in a minute or two,
01:00:34for those who are on the zoom,
01:00:35I'll have the computer for me and
01:00:36be able to see your questions,
01:00:38send them in through the Q
01:00:39and a portion of the of the
01:00:41zoom call rather than the chat.
01:00:44And in the meantime, Ben Tulchin
01:00:46has a question for us.
01:00:49That was a wonderful talk and I
01:00:51really appreciate your point that
01:00:53there there is more needed than.
01:00:57In information and that and that.
01:01:01Psychological stresses and.
01:01:06Technology of of the interaction is
01:01:08at least as important, if not more.
01:01:11Information available for
01:01:12the family of clinicians.
01:01:16Your intervention was was
01:01:19so remarkably successful,
01:01:20one thing that jumped out.
01:01:23About it was that you said that the
01:01:26nurse communicator was attached to the
01:01:29family throughout the course of their
01:01:31ICU stay and attended all the family
01:01:34meetings and something that I have.
01:01:36Clinical experience and again and again is,
01:01:38is, is the negative impact of.
01:01:43Rapid transitions of care and
01:01:47a lot consistent care and you
01:01:48know a lot of the study basis,
01:01:51but on a normal basis we have had a lot
01:01:54of success when we have implemented
01:01:56more consistent communication across
01:01:59family meetings like we did this
01:02:01regularly in the CIC with patients
01:02:04on ECMO during during COVID.
01:02:06And admitted I'm curious what the
01:02:10degree to which you think the.
01:02:13Impact of your intervention was
01:02:15the consistency of care as opposed
01:02:19to the communication skill.
01:02:20Is that possible to put apart?
01:02:25Uh, the folks, Karen,
01:02:27did folks online hear that?
01:02:30You know, you getting any feedback?
01:02:32Did they hear Ben's question?
01:02:33She doesn't have the feedback there now,
01:02:34so why don't you just summarize it briefly,
01:02:36Karen, I could also use you up
01:02:38here for a question with this.
01:02:40This is your question that I heard was to,
01:02:42to what extent was the positive
01:02:44effect of the intervention
01:02:46attributable to continuity of
01:02:48communication versus any particular?
01:02:52Augmentation or improvement in the
01:02:54in the individual conversations,
01:02:56I I don't know. You know,
01:02:59we didn't really to answer
01:03:00that question you'd have to,
01:03:02you'd have to do it experimentally
01:03:05and and randomize people.
01:03:06That's part of the challenge of
01:03:09multicomponent interventions.
01:03:10Unless you're going to do a
01:03:12factorial design in the first round,
01:03:14you won't be able to know whether
01:03:16one intervention component was
01:03:18quite helpful and other intervention
01:03:20components either were not or.
01:03:22Potentially, potentially even more harmful.
01:03:23And so that that is I think just
01:03:25from a research standpoint and an
01:03:27important consideration to say,
01:03:28you know.
01:03:29Keeping in mind that in for a multicomponent
01:03:31intervention at the end of the trial,
01:03:33you'll often be left with open questions
01:03:36about which element was most effective.
01:03:39We did not do an embedded ethnographic
01:03:43qualitative evaluation of the
01:03:45intervention for this trial.
01:03:47We are doing those now for the for
01:03:49the palliative care trial and for
01:03:50several others we have ongoing.
01:03:52So we'll,
01:03:52I think we'll be able to begin to
01:03:55discern these kinds of issues,
01:03:57these kinds of issues in the future.
01:03:59What I will say is anecdotally we have the,
01:04:02the nurses and the docs both both of
01:04:06those groups generally reported that knowing.
01:04:10And having clear information about what
01:04:11had been said to the family before,
01:04:13what the narrative was that that
01:04:15that the new attending coming on
01:04:18needed to sort of appraise for
01:04:19herself and then continue if she
01:04:21agreed with it was quite helpful.
01:04:26Many years ago Terry Free,
01:04:28one of our Jerry Jerry I
01:04:30didn't stack would be here,
01:04:31did a study in which she interviewed
01:04:33families of people who who had
01:04:36loved ones who have
01:04:37died. And I I think it
01:04:38was only people who died,
01:04:39but they. She asked them.
01:04:42What it was if they felt
01:04:45supported, if they felt, you know,
01:04:47what made the experience worthwhile.
01:04:50And in her study, none of the family
01:04:53reported that the doctors were
01:04:55important in that support. Has
01:04:59your have these
01:05:00more recent studies shown
01:05:03that the doctors are doing a better
01:05:06job of relating and supporting?
01:05:09About that our intervention,
01:05:11that the partner intervention and
01:05:13Randy Curtis's intervention both
01:05:15essentially bypassed trying to
01:05:17intervene directly on the doctors.
01:05:19The the You know, the logic there is that.
01:05:24And the nicest way to say
01:05:25it is the docks are are.
01:05:27It's hard to change behavior.
01:05:32And yet these interventions were successful.
01:05:34We, I think we both had a lot of concern at
01:05:37the outset that if the the most important
01:05:39active ingredient is the doctor and
01:05:40we're not intervening directly on them,
01:05:42are these interventions doomed to fail?
01:05:44But we did train the nurses on how to sort
01:05:48of gently get the doctors to do things
01:05:52that would be supportive for the family
01:05:54to to restate the patients prognosis,
01:05:56to slow down the conversation to
01:05:59maybe be empathic, right, you know?
01:06:01What these nurses often reported is you know,
01:06:04when when I offered the the family
01:06:07a a tissue.
01:06:08Suddenly this neurosurgeon who never,
01:06:11never says anything empathic to families,
01:06:13sat back and said, I'm, I'm really sorry.
01:06:15This is, I see how hard this is.
01:06:17But it's it's these kind of cues.
01:06:20You know, another interprofessional
01:06:22team member queuing to just nudge the,
01:06:25the physician to do something that
01:06:27he or she might be able to do with
01:06:30the right circumstances.
01:06:31Positions are potentially educable
01:06:32or at least they can be reminded.
01:06:35Yeah. So couple things here on this.
01:06:38First of all,
01:06:39there's a question
01:06:40whether this event will be recorded.
01:06:42And yes, it will.
01:06:42And it'll only be available if
01:06:44Doug tells us it's available.
01:06:45Don't tell us. OK, fine.
01:06:46And put you on the spot there.
01:06:47Karen told me we were going to do that,
01:06:49and thanks to all of you for
01:06:50telling me that you can hear us.
01:06:51The next question was
01:06:52someone in the back, please.
01:06:54Question harkening back to one of
01:06:56the first points you made about the
01:06:58patient living with HIV in California,
01:07:00speak up a little bit and I was wondering
01:07:03have you have you read any literature?
01:07:06I can certainly appreciate that
01:07:07the overwhelming majority of
01:07:09states focuses on this familial
01:07:11hierarchy of choices for surrogates,
01:07:13but I was wondering on non familial
01:07:15surrogates, are there any,
01:07:17is there any evidence or literature
01:07:19that you've seen possibly from those
01:07:21other 15 states or just focusing on
01:07:24the interventions you presented today?
01:07:26All of them focus on the familial unit,
01:07:29so I'm wondering about, not.
01:07:32Is your question in the states
01:07:34without a hierarchy do we know
01:07:36what the decision making processes
01:07:38are like or how it's different?
01:07:40Is it better or is it worse?
01:07:41Or specifically for interventions where
01:07:44there isn't there are non familial surrogates
01:07:48so the the key distinction is not between
01:07:51familial versus non familial surrogates.
01:07:53In these states the key is in 35 of 50 U.S.
01:07:57states there is a default
01:07:59list of of the order.
01:08:02Of genealogical relationships and
01:08:04and the families always have it's
01:08:05not yes spouse it's it's different
01:08:08family members all the way down
01:08:11and sometimes including friends in
01:08:12California and the other states that
01:08:14they vary from state to state but it's
01:08:16not that it's that the decision makers
01:08:18are not family it's that there's no
01:08:21hierarchy of who which family member
01:08:23gets to decide and instead it's the
01:08:25clinicians job either to in some
01:08:27states they do it let the physician
01:08:29select who she thinks is the the most.
01:08:32Appropriate surrogate California.
01:08:34It's consensus.
01:08:36So
01:08:36I mean and and would it be safe to say
01:08:38also that for the overwhelming majority
01:08:41of these decisions the surrogate decision
01:08:44maker is is for the overall majority is
01:08:46a member of the family friends. Friends.
01:08:48Doing this is pretty pretty rare.
01:08:50Yeah. So. In.
01:08:55I guess it really varies
01:08:56on the on the population.
01:08:58So for example, a lot of my
01:08:59time at San Francisco General,
01:09:01which is the safety in that
01:09:02hospital in San Francisco,
01:09:04many patients were homeless.
01:09:05Many had psychological or
01:09:06substance abuse issues and were
01:09:08estranged from their families.
01:09:09And so quite often they
01:09:11either were unrepresented,
01:09:12which is to say they didn't have
01:09:14anyone to make decisions or it
01:09:16was friends because they were
01:09:17estranged from their family.
01:09:18And then increasingly we see this with the.
01:09:22The aging generation where people
01:09:24are outliving all of their
01:09:27relatives and ending up either
01:09:29unrepresented or having a close
01:09:31friend who's usually a younger
01:09:33person as their decision maker.
01:09:36Thank you. So I have a question
01:09:37here from the zoom please.
01:09:38Why even assume that there is an
01:09:40in quotes correct answer on quotes.
01:09:42A complex decisions may be path dependent
01:09:45with people giving different
01:09:47answers on different ways.
01:09:48I mean I I suppose well I'll let you
01:09:51one way or the outcomes.
01:09:53Different answers on
01:09:54different ways of elicitation,
01:09:55or different answers on different days?
01:09:57I I think that they're actually
01:09:59different on different days.
01:10:00OK, I think that.
01:10:03That that is a first of all
01:10:06that's a great question what it's
01:10:08talking what the the at the root
01:10:11of that is this I I think it's.
01:10:14It helps us see preferences not as
01:10:18something that already swim around in
01:10:20our heads and we just need to pluck them out,
01:10:23but as things that are
01:10:25constructed in the moment, right?
01:10:26And typically,
01:10:27when you face a new decision,
01:10:28you have to construct your your beliefs,
01:10:32your attitudes,
01:10:33your your decision in the moment,
01:10:35which option is the best among things that
01:10:37you may not have thought about before.
01:10:38You don't have a preference
01:10:39swimming around in your head,
01:10:41and you just need to find it,
01:10:41you need to construct it,
01:10:43and there's quite a lot of.
01:10:44Research from the behavioral
01:10:45sciences that the way you elicit
01:10:47people's preferences can shape
01:10:49the the preferences themselves.
01:10:51And so that's why it's there's a
01:10:53there's actually a wonderful book
01:10:54on this called the construction of
01:10:56preference that speaks just to this issue.
01:10:58So I think the clinical
01:11:00implication though is,
01:11:01is not that there are no right answers,
01:11:04but that especially when patients have
01:11:07not articulated a narrow preference,
01:11:09there may be a range of treatment
01:11:12decisions in the ICU context or in the,
01:11:14you know,
01:11:15inpatient or outpatient context that
01:11:17are reasonably consistent with the
01:11:19patients values and preferences.
01:11:20And that's I think uncomfortable
01:11:22for some people and yet I think
01:11:24that that reflects the reality of it
01:11:26when patients have not articulated
01:11:27a preference when they haven't.
01:11:29Really thought it through,
01:11:30there may be several treatment options
01:11:32each that are quite different that
01:11:33could still be consistent with the
01:11:35patient's values and preferences.
01:11:37Thank you, Sarah.
01:11:39I'm. Troubled but not surprised by some of
01:11:43the earlier comments on how positions have,
01:11:46let's say less, less than optimal
01:11:49communication with patients.
01:11:50Sorry, it's in in many of these cases.
01:11:53And I absolutely think that that more
01:11:56dedicated training in some of the
01:11:58psychological official domains is needed,
01:12:00not just the cognitive communication domains,
01:12:02but I also think,
01:12:03and that mark and I have actually
01:12:05done work in this together,
01:12:07I think another issue that often is sort
01:12:09of swept under the rug and not addressed.
01:12:11Because it's.
01:12:11So difficult and so daunting to tackle
01:12:14is the concept of clinician time famine
01:12:17and particularly position time famine.
01:12:19And the fact that there's actually
01:12:21pretty good data to suggest that when
01:12:23people are crunched for time and
01:12:24physicians are not an exception to
01:12:26this they're less empathic and they
01:12:28they're they're not going to be as
01:12:31compassionate and and and also simply
01:12:33that that having a really thoughtful
01:12:36empathic sensitive discussion like this
01:12:39takes time whereas I think too often in.
01:12:42Medicine,
01:12:42there's this idea that if you're really
01:12:44good at something you should be able
01:12:45to do it quickly and that that's just,
01:12:47you know,
01:12:47we sort of hold that as as almost
01:12:50an inviolate standard.
01:12:51And I've had people say that to
01:12:52me before like if you're good you
01:12:53should be able to do it in less time.
01:12:55And often my responses with certain things,
01:12:57I'm good at it because I take the time and I.
01:13:00But I think that in an era where more
01:13:02and more we focus on productivity,
01:13:04efficiency,
01:13:04maximizing capacity so that we
01:13:07maximize profits and and and think
01:13:10about what are the main drivers
01:13:12of how we build our systems.
01:13:14I almost wonder if you know an
01:13:17intervention looking at changing
01:13:19staffing so it is a physician who's
01:13:22responsible for 50% fewer patients.
01:13:24And has this you know communication
01:13:26intervention let's say does does that
01:13:29affect the level of communication
01:13:30because there is data to suggest
01:13:32that that being crunched for time
01:13:35not only leads to burnout which
01:13:36leads to poor communication but
01:13:38made just even taking burnout out of
01:13:40the picture can also understandably
01:13:42lead to worse communication.
01:13:44And and I I've definitely felt that
01:13:46anecdotally where you know when
01:13:47when I'm being pulled in multiple
01:13:49directions it's a lot harder for me
01:13:51to sit down and really like kind of
01:13:52take the time and and often I if it's.
01:13:54Possible.
01:13:55So if someone else can take my
01:13:57pager or phone or because giving
01:13:59undivided attention for more than
01:14:0110 to 15 minutes is often a luxury
01:14:04that we're sort of tacitly not
01:14:05permitted to have when in fact that's
01:14:08absolutely necessary
01:14:09for a really thoughtful discussion.
01:14:11It's a great point.
01:14:12I think there is we have to think really
01:14:14carefully about the staffing models
01:14:16in our ICU and in our hospital wards.
01:14:19I think they're.
01:14:21If clinicians are not at the table when
01:14:23the staffing models are developed,
01:14:25there is a risk that they will be
01:14:27penny wise and pound foolish in the
01:14:29sense that the ICU attending will be
01:14:31seeing 20 patients a day and that may
01:14:34economically on on one Ledger look like
01:14:36quite a good efficient money saving approach.
01:14:40But if that dog doesn't have time to,
01:14:41as you said, sit,
01:14:42take the time to sit down and
01:14:44talk to the families,
01:14:45the length of stay maybe maybe quite
01:14:47a bit longer because patients end up,
01:14:50you know, end of life conversations.
01:14:51They kicked down the road,
01:14:52patients get trigged,
01:14:53pegged that otherwise might not because
01:14:55the doctor didn't have time to really
01:14:57sort of hold the family's hand through.
01:14:59It's terribly hard decision and and so yeah,
01:15:02number one,
01:15:02I think you're you're right to flag that
01:15:05staffing models can really affect this,
01:15:07number 2.
01:15:08So I increasingly think that we
01:15:10need to better leverage the full
01:15:12interprofessional team and the partner
01:15:15intervention really drove home from me
01:15:17that we should be pushing not pushing,
01:15:20we should be allowing.
01:15:21Nurses to function at the the top of
01:15:24their competencies in ways that you know
01:15:26the hierarchies the power hierarchies
01:15:28and ICU don't typically allow all.
01:15:30We have done a lot of interviews with
01:15:32nurses where they say you know I'd like
01:15:34to do these things but the the doctors
01:15:36don't really respect my opinion on
01:15:38matters of appropriate goals of care
01:15:41or values or engaging with families.
01:15:44And so some of them there would need
01:15:46to be some some wholesale changing
01:15:47of the culture and ICU and around
01:15:50rollout applications and what.
01:15:52Doctors are willing to allow nurses to do,
01:15:55and how different professions are
01:15:58willing to collaborate together
01:16:00in the support of families.
01:16:02You know,
01:16:02I think that's really about the two,
01:16:04you know the physicians and nurses
01:16:06and the roles we play in the
01:16:09hierarchy in so many levels on,
01:16:11you know, even on on ethics
01:16:13consultations in an ICU for example.
01:16:14They'll be you'll see why
01:16:16won't we call sooner and.
01:16:17And a young nurse will say,
01:16:18well, I asked him,
01:16:19I was told I couldn't when in
01:16:21fact it is not the case.
01:16:22But that may be the nurse
01:16:24didn't realize that she didn't
01:16:26need somebody's permission
01:16:25to ask for that help. But I want to
01:16:27push back a little bit
01:16:28on the financial piece.
01:16:29I I was interested in your data
01:16:30that showed how much less money is.
01:16:32Perfect. So under the cost but I
01:16:35a little bit of a cynicism of a
01:16:38of a recently stepped down chief
01:16:40he said to the organization when
01:16:42you say well they don't get it
01:16:43pegged not thinking well geez,
01:16:44someones going to build for that peg.
01:16:45They didn't get a peg.
01:16:46You see that saved money.
01:16:47Yeah but someone made money when
01:16:49that Peg was they didn't they
01:16:50spend fewer days in the ICU.
01:16:52Hey somebody made money for
01:16:54each of those ICU
01:16:54or they spend longer in the ICU until
01:16:57the decision for a pay gets made.
01:16:59That's that's the other trade and pay that.
01:17:01That's the other part of this, these.
01:17:02You know, these are hard conversations
01:17:04that often takes three or four
01:17:06meetings and if the doctor is so
01:17:08busy that she pushes them off,
01:17:10then that's just more days going by.
01:17:12Well, no, I don't disagree
01:17:14that that that could happen.
01:17:15What I'm saying is that that
01:17:17when things are more expensive,
01:17:18made more expensive by potentially
01:17:21our suboptimal ability to help the
01:17:24surrogate decision makers and so
01:17:25things are made more expensive.
01:17:27One of the, one of the metrics
01:17:28that you showed in the studies,
01:17:29which was very impressive, I thought,
01:17:31when they're made more expensive.
01:17:33Somebody's actually making that money.
01:17:34Yeah. And sometimes and.
01:17:35And so those are sometimes the same
01:17:38people who we may be appealing to,
01:17:40to say we need more time.
01:17:42So as among other things, we can help.
01:17:45We can coach,
01:17:46we can nurture the surrogate decision makers,
01:17:49not just the patient.
01:17:50Yeah, certainly. I mean,
01:17:51fever service versus capitated payment
01:17:53models could push hospital executives
01:17:56in different directions about
01:17:57whether they think a length of stay
01:18:00that's shorter is better or or not.
01:18:02And ideally. That's
01:18:04not what the size of. Right.
01:18:06I mean ideally there are other
01:18:08considerations that win the day but
01:18:10but it's it's it's I found your
01:18:13financial information was really
01:18:14impressive Mark. So there was a
01:18:17specific domain that I've always
01:18:18been interested in that I didn't
01:18:19see quite coming out tonight yet,
01:18:22which is trust and relationship building.
01:18:25And you know I I feel acutely sensitive
01:18:28to this having gotten COVID because
01:18:31we had one of the most liberal
01:18:33visitation policies and I see you
01:18:36could possibly have that then mean
01:18:38virtually no visitation policy and
01:18:42and we're just crawling out of that.
01:18:44But instead of families on grounds
01:18:47you know we we would talk about
01:18:50everything all the time and
01:18:52sunset that the nature of the.
01:18:55It didn't make the conference
01:18:56was completely observed because
01:18:58suddenly you're dealing with a
01:18:59stranger as opposed to somebody
01:19:01you've had built up relationships
01:19:03and trust them over several days.
01:19:05And so I wonder
01:19:06if there's thoughts about that.
01:19:08I think the the notion of trust or
01:19:13therapeutic alliance is for me,
01:19:15it's embedded when I think about,
01:19:17you know, how could we actually.
01:19:20Actualize. Providing emotional support,
01:19:23providing psychological support,
01:19:25I think that that,
01:19:26that a precondition for
01:19:27being able to do that,
01:19:29to have to have any agency as a
01:19:30clinician to help families in that
01:19:32way is that there's a a trusting
01:19:33relationship and a therapeutic alliance.
01:19:35I think how to do that is an open
01:19:39question particularly in the
01:19:41context of structural racism and
01:19:44or communities that have in other
01:19:46ways been marginalized particularly
01:19:47patients with disabilities.
01:19:48And so you know we have all of
01:19:51these expert recommendations.
01:19:52Here's how.
01:19:53And I, you know,
01:19:54I I have been part of some of the
01:19:56studies that have promulgated them.
01:19:58Here's here are the skills that you
01:19:59should use when engaging with families.
01:20:02Many of them are unobjectionable.
01:20:05But those recommendations come from
01:20:07decision scientists and clinicians
01:20:09and not from people in the communities
01:20:12that have arguably the most at stake in,
01:20:14in how communication plays out.
01:20:16And so I,
01:20:16I think of,
01:20:17you know,
01:20:18a really important gap in the
01:20:19literature and one that one of my
01:20:21postdocs right now is working.
01:20:22One is engaging marginalized
01:20:24communities on their views about how
01:20:27end of life conversations could play
01:20:30out in ways that are less dramatic,
01:20:33less triggering of of past trauma.
01:20:35And so, you know, we'll see that.
01:20:36It may just be confirming or it may.
01:20:39My sense is that that the emphasis
01:20:42on things like spending much more
01:20:44time proving that you're trustworthy
01:20:46may may come out in a stronger way.
01:20:49I would suggest perhaps also
01:20:51just looking at things.
01:20:52I see you dissertation policies.
01:20:54Yeah.
01:20:54And and see
01:20:55how that influences these.
01:20:59Trying to get two more and I
01:21:00have one from here and then one.
01:21:01Can I also make a request
01:21:02I want no, no, I'm sorry.
01:21:05I really do want to hear
01:21:07about that person again.
01:21:09We're in. We're in the place
01:21:11called the Child Study Center.
01:21:12That's right. Well, this is,
01:21:14this is a site childhood site Center,
01:21:17study centers where it's called you bet.
01:21:20How pediatric clinicians think
01:21:23about family decision making,
01:21:25parental autonomy and what they
01:21:28actually are asking families
01:21:31think through when they're making
01:21:32decisions for their critically
01:21:33ill child and to what extent
01:21:35is the best interest standard,
01:21:36one that you find functional in
01:21:39a communication context.
01:21:41So the short answer to this
01:21:42all we really have to say
01:21:44and it gives you a little hit picture to it,
01:21:46many at least some pediatric assist,
01:21:48myself included, I've written
01:21:50there's no such thing as parental.
01:21:51Because autonomy, as you know,
01:21:53well, I mean self rule,
01:21:54you don't have self rule over someone else.
01:21:57There's parental authority which
01:21:58is not really as strong as
01:22:01parental as patient autonomy.
01:22:02You know that you have a right to refuse
01:22:05a life saving treatment for yourself.
01:22:07You don't necessarily have the right to
01:22:08refuse it for your child and there's going
01:22:10to be some threshold of harm, right.
01:22:12And you mentioned Doug Deep was working,
01:22:14but but beyond that just in big picture
01:22:16is going to be some threshold of harm
01:22:18beyond which we won't let parents go.
01:22:20So a big part of the decision making.
01:22:22Obviously, you're quite right that
01:22:23except for at potentially adolescence,
01:22:25but for most of the Pediatrics,
01:22:27a substituted judgment is not an issue,
01:22:29right?
01:22:29So it's about trying to frame,
01:22:31trying to help the parents come to what
01:22:33they think is in the child's best interest.
01:22:36But.
01:22:37So often,
01:22:38and you touching it so often in neonatology,
01:22:41wherever guilted perceived guilt,
01:22:43such a huge part of it, I just couldn't
01:22:45forgive myself up.
01:22:47I didn't try everything. And plus,
01:22:48perhaps it's even my fault that we're
01:22:50in this position because it didn't do a
01:22:52good enough job carrying this Brexit,
01:22:53these things that might not be
01:22:56articulating unless the physician
01:22:57is wise enough to bring them out.
01:22:59Guilt is a huge part.
01:23:02Finding the limits of parental
01:23:04authority is a is A is a very difficult
01:23:07aspect of working with this but most
01:23:09of it comes down to and things that
01:23:10you touched on that Sir touched on
01:23:12is the time is is taking the time
01:23:14to work with the parents but but.
01:23:18Sorting
01:23:19out what do you think would be
01:23:20best for your child? Because it is
01:23:21about what do you think
01:23:21he would have wanted?
01:23:22Right now we need to know that
01:23:23an infant or a small child,
01:23:25what do you think would be best?
01:23:26What are your goals for this? For you?
01:23:28What were your goals for this channel?
01:23:30What do you value?
01:23:31And of course there was.
01:23:33There was a in terms of what
01:23:34families value and and that goes so
01:23:37much into the decision they make.
01:23:39There's a colleague of mine in Annie Javier,
01:23:41who has spoken to this group, I think
01:23:43earlier this year and she wrote a paper.
01:23:45You know, we all talk about what if
01:23:46people value when you're talking to
01:23:47a Yale professor who was a, a newborn
01:23:49who's who's suffered a brain injury,
01:23:51and what this means to that individual.
01:23:53She wrote a paper called Sex and Peace.
01:23:56And essentially the story was it was a
01:23:59case report of dealing with a family,
01:24:01a very happily married young couple.
01:24:03Whose child comma suffered a significant
01:24:05brain injury at the time of birth.
01:24:07They talked about what would
01:24:09this child be like?
01:24:10And they were kind of life be
01:24:11like they were trying to counsel.
01:24:13And ultimately that the parents said,
01:24:14well, you know, the parents ran a pizzeria.
01:24:17They lived a very happy life and their
01:24:19life was working in the pizzeria
01:24:21and they liked having sex.
01:24:22And they said, you know,
01:24:23and I'm sure the other things they
01:24:25like in their life as well.
01:24:25But he's trying to figure out
01:24:27someone had a life worth living.
01:24:28Will he be able to help make the pizza?
01:24:30Sure. Well, will you be able to enjoy sex?
01:24:32Sure. Well, then they for them.
01:24:34Rest for potentially a Yale professor
01:24:36show that might not be good enough.
01:24:39So trying to understand what the
01:24:40value is not of the patient but what
01:24:42the values of the parents are here.
01:24:43It really matters I think surrogate
01:24:46decision making in for adults.
01:24:48I think you're trying to be as
01:24:50patient focused as you can.
01:24:51But the parents values I think matter
01:24:53more with smaller children when
01:24:55the child obviously hasn't formed
01:24:57any values but I talked to them.
01:24:59We'll talk about that more at dinner.
01:25:00I have one question here I promise
01:25:02two more questions just very briefly
01:25:03because this is some.
01:25:04You might want to comment on from
01:25:06my friend Alexander who
01:25:07asks is there a special training program
01:25:09for language mediators and the
01:25:11surrogate decision making process,
01:25:13or should there be?
01:25:15It would include both
01:25:16linguistic and cultural issues.
01:25:18And how could you integrate?
01:25:19Again, that's not a shortened
01:25:21language mediated language media.
01:25:24I don't think, well see,
01:25:25I think what he's referring to is that
01:25:27having both linguistic and cultural issues.
01:25:29So for example someone who
01:25:31not only so that the patient.
01:25:34This comes from country X and
01:25:35the and the language mediator
01:25:37potentially not only speaks the
01:25:39language of culture of country acts,
01:25:41but also is familiar with that culture
01:25:43and how that culture might influence
01:25:45the surrogate decision makers think.
01:25:50We have certain clinically.
01:25:52I have certainly had the experiences.
01:25:55Of individuals who are not from the
01:25:57United States from from very different
01:25:59cultures that decision making and
01:26:01communication improves substantially.
01:26:02When someone from that culture was
01:26:04able to say hey there are a few things
01:26:06to make sure you know when you're
01:26:08engaging with with this family but so
01:26:10yes absolutely that's not is there a
01:26:13resource for that other than the the
01:26:15resources in a particular community no.
01:26:18But but availing oneself of you
01:26:20know often the chaplaincy services
01:26:22within hospitals can say,
01:26:23you know this is either they can do the work.
01:26:25Where they can find someone who is
01:26:27either from that religion or from
01:26:28that culture to speak to these issues.
01:26:30But yes, and it's hugely important.
01:26:32It's a beautiful idea, Alexander,
01:26:34but here and here's Alex.
01:26:35But here's the here's the loss a little bit.
01:26:40That and I over time experience
01:26:42that sometimes with translators
01:26:43when I'm sitting and talking to
01:26:45we're about to go to talk to and Mr.
01:26:46Missus ex about the situation,
01:26:48maybe you'll get some inside.
01:26:50It doesn't usually happen.
01:26:51Maybe we'll get some.
01:26:52But of course most of the
01:26:53time now I'm not actually
01:26:54sitting there talking to translator.
01:26:55I've got someone on a screen bring the
01:26:56poll over with the little screen on it and
01:26:58now that's how we're going
01:26:59to do the translation.
01:27:00So again it's it's not even in terms
01:27:03of trying to a translator being able to
01:27:05understand or or to translate or to.
01:27:10Transmit a certain degree of empathy
01:27:13that perhaps is in the language.
01:27:16We lose a step because we use it
01:27:17with a screen instead of a person.
01:27:18But I get it because I might not have
01:27:20a person here who speaks this very
01:27:22unusual language in the United States.
01:27:23And whereas I can get somebody does it,
01:27:25so I get it.
01:27:26It's the technology helps me,
01:27:28but sometimes it's a piece
01:27:29loss. But I want it. I'm sorry, Doctor
01:27:30Junick, I want you to have the last question.
01:27:32So my question is related to, again,
01:27:35feeling the surrogacy as a burden as many
01:27:38spending many years on our Ethics Committee.
01:27:41In the hospital when we've
01:27:43invoked the nuclear option,
01:27:44the conscientious practice policy,
01:27:46it's not been uncommon where a family
01:27:48that we've dealt with for many,
01:27:50many years, when we took the
01:27:52decision out of their hands,
01:27:54they felt very relieved.
01:27:55And so I'm sort of focusing way back
01:27:57on one of their first slides about how
01:27:59I'll leave about 1% of patients have
01:28:01something that's actionable one way.
01:28:04Obviously an Ed we're we want all
01:28:06of our patients to come in with
01:28:09directives and some of the IO your
01:28:106 year olds who are walking down the
01:28:12street and they have a massive MI.
01:28:13But the vast majority of these
01:28:15patients it is relatively predictable.
01:28:17Our ALS patients are stage four
01:28:20cancer patients that have not
01:28:22responded appropriately to chemo.
01:28:24It's all predictable that this
01:28:25is going to happen and to us and
01:28:27D it's entirely frustrating not
01:28:28that not we're not frustrated the
01:28:30patients we're frustrated at a lot
01:28:32of the other care providers.
01:28:34We're not having these
01:28:35conversations with patients.
01:28:36So I'm wondering if maybe having these
01:28:39more emotional support resources
01:28:41directly directed towards patients
01:28:43when having these conversations.
01:28:46And again it's going to be a process,
01:28:47it's never one conversation as Sarah
01:28:49says with one patient that one day,
01:28:51but over a period of three or six
01:28:53months or three or six years as they
01:28:55go through ALS or something having
01:28:57you know supporting that patient and
01:28:59making their own decisions and that
01:29:01not putting that burden on the on the.
01:29:04Caregivers,
01:29:05which would ruin your whole talk.
01:29:06But
01:29:06yeah, no. So this is this is the
01:29:09whole idea of making surrogate
01:29:11decision making easier by making
01:29:13sure that patients have really had
01:29:16the opportunity and the support to
01:29:18truly formulate their own preferences
01:29:20about the likely care decision.
01:29:22But then you wouldn't have to ask
01:29:24much of anything if it's, you know,
01:29:26again in the alley ALS cases and in
01:29:27advanced cancer patients because it's
01:29:29relatively or advanced liver patients
01:29:31who don't qualify for transplant,
01:29:32it's relatively predictable
01:29:33what's going to happen.
01:29:35Yeah. So that would argue for really
01:29:37somewhat of a disease specific kind of
01:29:39advanced care planning or counseling session.
01:29:41And so Yale Shankar and my colleague at
01:29:44PET is the lead on a trial right now,
01:29:46randomized trial of respecting choices,
01:29:48which is a more interpersonally attuned
01:29:51form of advanced care planning.
01:29:53And she's testing it in patients
01:29:55with advanced cancer who that like
01:29:57just like you said, reliably face
01:29:59certain kinds of milestone decisions.
01:30:01And so, you know we'll see.
01:30:03I think there are so many studies.
01:30:05Have shown that advanced care planning
01:30:08does not particularly affect health
01:30:10utilization outcomes and care decisions.
01:30:13This is, you know,
01:30:15a much more tailored approach to it,
01:30:16a much more interpersonally savvy
01:30:18advanced care planning intervention rather
01:30:20than just a pen and paper directive.
01:30:22I was supporting the patients,
01:30:24but as soon as you see how many
01:30:26countries say, well,
01:30:27let's not leave this to the family
01:30:29anyway that that I wasn't aware
01:30:31of that was we're friends but not
01:30:32the other countries as well.
01:30:33Don't move as we have you know you know
01:30:35you get wonderful things when you come here,
01:30:37dog.
01:30:39You get, you know,
01:30:40you get some Yale paraphernalia.
01:30:41Oh, please join me in thanking Doctor White.
01:30:46Yeah. We got everything we can.
01:30:48We can feel free to wear this
01:30:50right now if you want. Yeah, sure.
01:30:52Oh, yeah. You're looking good.
01:30:54Thank you very much.
01:30:57Stretch out my 17 year old
01:30:58twins who are thinking about
01:31:00colleges now. A couple.
01:31:02There you go. That'll stress them out.
01:31:04Good. Thank you all very much for coming.
01:31:06We'll see you guys again
01:31:07in a couple weeks.