Reframing Moral Distress in a Changing World

October 15, 2020

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October 14, 2020

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00:00Thank you for joining us.
00:02My name is mark material.
00:03I likely know most of you.
00:05I'm the director of the program
00:07for Biomedical Ethics and I want
00:10to welcome you tonight on behalf
00:11of myself as well as the Associate
00:14Director is Jack Hughes and Serra Hall.
00:16In our program manager Karen comb.
00:18And thank you, Karen for organizing
00:20this this session tonight.
00:22Tonight is A is a special session
00:24for us because we've got a colleague
00:27all the way from Australia.
00:29And she actually flew all the way to
00:31New Haven is in a studio right outside
00:33my office just because she wanted to
00:36really make sure she got this right.
00:38That's first, I'll tell you tonight.
00:39Trish's got a very early in the morning
00:42in Melbourne so she could speak with us.
00:44Delighted, introduce tonight's guest.
00:45I would tell you before I do that though.
00:48Just to remind you that how
00:50this will kind of layout,
00:51which is to say,
00:52doctor premise will speak for
00:5445 minutes or so.
00:55After that we'll have a conversation.
00:57I will moderate the question
00:58and answer session.
00:59Bring up subjects for
01:01conversation as you like.
01:02Please do chime in on the Q and a
01:05portion of the zoom function an we
01:07will and will give Doctor Prentice
01:09chance to answer your questions.
01:11We do have a hard stop at 6:30 and so
01:14my apologies to the person that was a
01:17really good question at 6:29 because
01:20at 6:29 I will be wrapping it up,
01:23but we've got plenty of time
01:25now for a great session,
01:26so I want to introduce you
01:29to Doctor Prentice.
01:30Doctor Trish Apprentice is in
01:31Unitologist in bioethicist at the Royal
01:33Children's Hospital in Melbourne,
01:35Australia.
01:35I had the privilege of meeting
01:37her when I was there a couple
01:39years back and I've been wanting
01:41to get over here ever since.
01:43She's particularly interested in factors
01:45that influence shared decision making.
01:47She has a Masters degree in bioethics
01:49from Monash University in Australia,
01:51and her PhD from the University
01:52of Melbourne for PhD dissertation
01:54examine the moral distress of
01:56healthcare professionals caring for
01:57extremely pre term babies with in
01:59the neonatal intensive care unit.
02:01Doctor Prentice serves on the
02:02clinical in Human Research Ethics
02:04Committees at the Royal Children's
02:05Hospital and is involved in
02:07developing statewide guidelines
02:07for management of pre term babies.
02:09Born at the edge of viability,
02:11something that I don't think we've talked
02:13about in this group very recently,
02:14but something that are only
02:16an intelligent group is very
02:18involved in the past six months.
02:20She enjoys traveling with family
02:21and someday she's kind of come
02:23here in person with her family and
02:25we're going to have a great day.
02:27Then.
02:27In the mean time,
02:28I'm extremely grateful for doctor
02:30apprentice for making the time
02:32in preparing this talk for us and
02:33I thank you all for attending.
02:35And with that I turn it over to doctor
02:37Trish Apprentice Doctor Prentice.
02:40Thanks very much Mark.
02:41I'm just going to try and
02:44bring up my slides quickly.
02:47One of us will get an odd that
02:53there appearing OK, doesn't matter
02:56how many times you practice soon.
03:00It seems to always be a bit slow in reality.
03:08That looks good.
03:10Fantastic so it is wonderful
03:12to be here today even if it
03:14is only just in a virtual form
03:16sitting outside of marks office.
03:18This is an absolutely wonderful
03:19program that you've put together
03:21on your teams put together and I've
03:23been really encouraged by checking
03:25out some of the last recorded talks
03:27and seeing that there's been a bit
03:29of a common thread of learning from
03:31history to hopefully improve humanity.
03:33And it's a thread that I hope to
03:35kind of pick up a little bit today.
03:38Certainly reminds me of the
03:40sentiment by Kohlbecker.
03:41He said the value of history
03:43is indeed not scientific,
03:45but moral by liberalizing the
03:46minds by deepening the sympathies
03:48by fortifying the will.
03:50It enables us to control,
03:52not society by ourselves.
03:53A much more important thing.
03:55It prepares us to live more
03:58humanely in the present and meat
04:01rather than for tell the future.
04:03So it has talked to Mercurio,
04:05said my role is primarily as in the
04:08intelligence at the road Children's Hospital.
04:10And so I'm going to talk about moral
04:12distress from that perspective.
04:14As in the in Tala just sharing some of
04:16my own research that mark alluded to now.
04:19I want to also acknowledge that the
04:21majority of moral distress has been
04:23written from a nursing perspective,
04:25and there's been good reason for this.
04:27But in my comments today,
04:29I don't wanna in anyway take away from
04:31the lived experiences from others,
04:33and I wish to.
04:34Express my gratitude to those who
04:35have gone before me and have really
04:37grown and developed our understanding
04:39of the concept of moral distress.
04:41I do hope,
04:43however,
04:43that my perspectives will serve to kind
04:46of broaden the discussion discussion
04:48and not detract from discussion anyway.
04:51It's a kiss,
04:53almost undeniable that COVID-19
04:55has significantly impact or change
04:57the world that we live in.
05:00The rapid evolution of the crisis
05:01has simply changed the way that we
05:04interact and relate with one another.
05:05The way in which we work in trouble.
05:08It will certainly not be until
05:102022 until I look forward to
05:12visiting North America again.
05:13It is devastated the economy and the world,
05:16and both indirectly and directly
05:18affected the health and well
05:20being of people all around us.
05:21And it's also created new
05:23pressures for us challenges.
05:24It's destabilized our sense of control
05:26and for I think the average clinician.
05:29It is somewhat shifted priorities
05:31away from thinking about how we
05:33can achieve the best interest
05:35for the patient directly in front
05:37of us to having to take more of
05:39a public health approach.
05:40I think this shift has sometimes
05:43highlighted and exacerbated some of
05:45the pre existing gaps in our health
05:49care system and our systemic inequality's.
05:52It's resulted in significant moral
05:54distress because we unable to
05:55provide a level of care that we
05:57are either being previously able
05:59to provide or be able to provide.
06:01The level of care that we think
06:03that we ought to for our patients.
06:06I think sometimes the issues can
06:08feel so big and overwhelming.
06:10It can feel easy to feel powerless
06:12to change the system and to succumb
06:16to kind of feelings of despondency.
06:18Now, in order to understand how
06:20to respond tomorrow,
06:21the stress in these challenging times,
06:23I think this also value in
06:25understanding how the concept of
06:26moral distress has developed overtime.
06:28It's important to understand
06:30how some people use the term and
06:32to provide some structure and
06:34framework and thinking about how
06:35we should respond to it in doing so.
06:37Again,
06:38it will be referring to some of my own
06:40research around the area of marla stress,
06:43as well as highlighting some key events
06:45that I think have really brought
06:47out the nature of moral distress.
06:49In society.
06:51Now when I committed my PhD,
06:54which was bit more than 60 years ago,
06:56the term wasn't at that stage used
06:58in common in clinical practice
07:00on a day-to-day notion,
07:02at least not in Australia anyway.
07:05But now it seems to be used in
07:07in freak in increasing frequency.
07:10Not just in healthcare but within
07:12different industries and sometimes with
07:14different meanings and intentions.
07:16It's almost become a bit of a
07:19buzzword at times.
07:20Some use it as broad term to
07:23describe any distressing situation
07:24that has a moral component to it,
07:27whether that be moral uncertainty when
07:29we simply just don't know how to proceed,
07:32or sometimes to reflect moral
07:35dilemmas where there may be more
07:37than one ethical principle at stake.
07:40And we're just and we feel the tension
07:43between those two different principles.
07:45But today I'm going to be focusing
07:47on a more narrow definition coined
07:49by Andrew Jamett and back in the 80s
07:52and refined over the following ten
07:54years to refer to the psychological
07:56distress that arises when the clinician
07:58feels constrained to provide care.
08:00Belief not to be in a patience interest
08:03due to factors outside of their control.
08:07Now central to this definition is
08:09a moral judgment that the person
08:11is not acting as they think they
08:13ought due to a perceived constraint,
08:15and I think these two components
08:17of a moral judgment and constraint
08:20are really essential to kind of
08:22Deconstruct and analyze in order for
08:24us to know how to respond to moral distress.
08:27So I'm going to keep coming back to
08:30these two components throughout this talk.
08:33Now, during unsettling times like COVID-19,
08:36there may be many different
08:38emotional responses running high.
08:40There's been much uncertainty,
08:42anxiety,
08:43distress from bearing witness to
08:45the tragic loss of lives.
08:48And while all these forms of
08:50address are all of distress,
08:52are all very important in themselves,
08:54and they need to be addressed.
08:56I think it's important to
08:57be able to distinguish roll
08:59distress from these other forms of distress,
09:01because it strikes at a person's sense
09:04of moral integrity and potentially
09:06the core values that they consider
09:08to be essential to their profession.
09:11Increasingly, some have turned to
09:14the related expression of moral
09:16injury to reflect compromised ones.
09:18Personal moral code.
09:21It can result in a variety of different
09:23emotions from frustration through to anger,
09:26and these can be directed at
09:28the perceived can strainer.
09:30Now, naturally,
09:31we also tend to avoid situations
09:33that we find distressing,
09:34so it can also impact patient care
09:37and result with reduced report with
09:40those that we have a duty to care for.
09:43Now, the constraints that we experience
09:46as health care professionals.
09:48They can be interrelated.
09:51Spears of influence that may occur
09:54within the kind of close proximity
09:56of the interpersonal relationships,
09:58such as when we are in decision
10:02making scenarios.
10:03To also being broader level of constraints,
10:06such as those imposed by our
10:08institutions or our governments,
10:10whether they be resource allocation
10:12or our workload,
10:13that's defined by our institutions.
10:17With time,
10:18there's also been a shift in the
10:20types of constraints acknowledged
10:22in the moral distress literature.
10:24There is now increasing recognition
10:26that the broader kind of socioeconomic
10:28considerations as highlighted by
10:30COVID-19 can have a big impact on the
10:33type of moral distress that we experience.
10:36And I'll speak to this in more detail later.
10:41No,
10:41and Andrew Jamett and 1st coined the term.
10:44It was historically at a time when gender,
10:47inequality's and medical hierarchy,
10:49where even more apparent and
10:52prevalent than what they are today.
10:54The term was predominately found
10:55within nursing literature and
10:57mostly described scenarios.
10:58When a physician would enforce aggressive
11:01therapy perceived by the nurse not
11:04to be in the patients best interests.
11:06And in that context,
11:07Maurice dresses often primarily seen
11:09as an institutional failing where
11:11a healthcare professional feels
11:13powerless to intervene and to advocate
11:15for the patient in front of them.
11:17And as such,
11:19examples moral distress implies
11:21a potential abuse of authority,
11:23and implies that a change is required
11:25in order to actually achieve the
11:28best interests of the patient,
11:30and this is remained the predominant
11:33conceptualisation of moral distress
11:36over the next 20 to 30 years.
11:38In fact, even 35 years later,
11:40as I began to do my research,
11:43notice remains the predominant
11:45focus of empirical studies,
11:47even though there is increasing
11:49recognition that all health
11:50care providers were at risk,
11:53and indeed professionals outside
11:55of the healthcare industry.
11:57The types of constraints continued
11:59to be largely focus on decision
12:01making within that kind of 1st fear
12:04of interpersonal relationships.
12:06Although again,
12:07other levels of constraint were
12:09starting to be acknowleged.
12:11And again,
12:11Marla stress was still framed as
12:13predominantly an institutional failing
12:15over the moral moral distress clinician,
12:17and in order to act in the patients interest,
12:20we needed to make changes.
12:23So strategies tend to kind of focus
12:25on empowering or promoting moral
12:27courage in order that clinicians
12:30could speak out
12:31against the perceived constraint or
12:34source of the problem, and as such,
12:37other strategies such as improving well,
12:40being, or resiliency.
12:41We're not received particularly
12:43well by some as they were seen as
12:46things that would actually detract
12:47from the core issues of constraint.
12:50What I think has been at times absent
12:52from the discussion has been an
12:54assessment of the underlying moral
12:56judgment about what actually constitutes
12:58the patients best interests and how.
13:01How do we actually define harm,
13:03and who should even be the one who should
13:07be defining the patients interests?
13:10So my own research interests had very
13:12much focused on this idea of thinking
13:15about whether moral stress can actually
13:17be seen as an infallible marker that the
13:20patients interests are being harmed.
13:22If the patients interests weren't being met
13:25through the current treatment strategy,
13:27are there ways that we could potentially
13:30identify an earlier point and to
13:33intervene and potentially reduce the moral
13:36distress experience by our team members?
13:38I wanted to be off to paint a picture
13:41of the nature of moral distress,
13:43both in relation to the illness
13:45severity of the patient before us,
13:46but also capture the perspectives
13:48of different team members in
13:50the family to see how these.
13:52And perspectives and experiences both
13:54differed and also changed overtime.
13:57So we designed the project modality,
14:00which stands for moral distress in life
14:02trajectories miss was a multicenter,
14:04mixed methodology.
14:05Longitudinal study that sought to
14:08examine moral distress of clinicians
14:10caring for babies born less than 28
14:12weeks that we followed from birth
14:14until discharge at two tertiary level.
14:17Neonatal intensive care units in Melbourne,
14:19Australia.
14:19Now we limited our scope to pre term
14:23babies in order that we would have a
14:26fairly homogeneous population where in
14:28the state of Victoria we have very good.
14:31Outcome data at two years.
14:34Eight years of life.
14:38We prospectively enrolled 525 medical and
14:41nursing professionals and at each time point,
14:44we asked a physician of fellow
14:46resident or register and the nurse
14:49to complete an iPad based survey that
14:52included questions about whether
14:54the baby that they were caring for.
14:57Causing moral distress.
14:58Whether they thought the baby
15:00would live or die,
15:01and if they were going to survive,
15:03what level of disability would they have?
15:06Whether they thought survivals even in the
15:08baby's best interest and what was their
15:11preferred level of care for the baby?
15:13For those who express
15:14significant moral distress,
15:15we also provided them with the opportunity
15:17to provide an open ended response about
15:20why that baby cause the moral distress.
15:23And at the same time points,
15:25we also collected a whole lot of data
15:27about the types of interventions the
15:29babies were receiving in order to
15:31maintain their physiological stability.
15:33And we use this to form in the Natal
15:36intervention score in order to be
15:38able to track and reflect the relative
15:40illness severity of the patient
15:42right throughout their admission.
15:46We had a fairly standard population
15:48of at a mean gestation 25 + 6 weeks,
15:52and the babies were on average to 823 grams.
15:55We're able to follow up 99 babies
15:57and throughout the course of
15:59the study and of those 13 died,
16:02including four who died on the ventilator,
16:04where withdrawal of life sustaining
16:06interventions had been breached
16:08and discussed with the family.
16:09But whether families had chosen
16:11not to redirect the goals of care.
16:16We collected over 4500 surveys
16:18across about an 18 month period an
16:22of those surveys moral distress was
16:26experienced in around 15% of occasions.
16:29Now what was interesting was,
16:31despite these being incredibly
16:33specialized to intensive care units,
16:35that this is their core bread and
16:37butter of caring for pre term babies.
16:4091 out of 99 of the babies generated
16:43at least one report of moral distress.
16:47That is true that it was rare for
16:49clinicians to share more distress
16:51regarding the same patient or
16:53for the natural moral distress
16:55to be repeated longitudinally.
16:57So in fact,
16:58there are only three patients
16:59or 8 occasions where all for
17:02clinicians were in agreement that
17:04the parents wanted too much.
17:06That's the care was.
17:07Overly burdensome or disproportionate
17:09to the perceived benefits that
17:12ongoing life sustaining treatments
17:14would provide the patient.
17:18Now, similar to the earlier
17:22literature analysis.
17:23The main reason that al clinician
17:26stated they were distressed was because
17:28of the clinical state of the baby,
17:30either where the baby was predicted
17:32to die and the clinicians
17:34thought that the care was.
17:35Dare I say it futile or have a
17:38level of severe disability where
17:40the burden of care seemed to
17:43outweigh the benefits to that baby.
17:45So this was just one quote
17:47from one of our fellows,
17:49but his neurodevelopmental outcome
17:50is likely to be very poor and he has
17:53made minimal gains from a feeding
17:55perspective post term corrected.
17:57His parents expectations are
17:58out of keeping with what can
18:01and should be provided to a baby
18:02with such a bad problem Gnosis.
18:07Yet when we looked at the relative
18:10illness severity of our babies,
18:13moral distress was actually poor,
18:15poor, poorly correlated.
18:16A lot of the time,
18:19the moral distress that was experienced
18:21was it reflected a lot of subjective
18:24value judgments about the patients
18:26interests often was really influenced
18:28by things such as the socioeconomic
18:30demographics of the family.
18:32Gestational age was also
18:33a really important factor,
18:35so babies that were born at 20,
18:37three weeks for example, even if they had,
18:39were requiring the same level of
18:41care as a baby born at 28 weeks.
18:43The 20 baby born at 20 three weeks was
18:46much more likely to cause moral distress.
18:49And overall,
18:50it seems that a lot of the time
18:53the decisions remained within
18:55the zone of parental discretion.
18:58Now what I mean by that is the zone of
19:00parental discretion is where we think
19:03that it's the ethically and legally
19:05protected space where parents may
19:07make decisions for their children,
19:09even if these decisions may be
19:12considered suboptimal or not
19:13necessarily the best for them.
19:15Now,
19:15although we frequently speak about the
19:17best interests of patients within medicine,
19:19it's a standard that we rarely
19:22hold each other up to in life.
19:25If we did,
19:25I'd be in big trouble over the
19:27period of Covid as my parent,
19:29my children have been allowed to watch
19:31more movies than what they normally would.
19:34No doubt there would be something
19:36much more creative or stimulating
19:37that they could have been doing.
19:39Or I could have encouraged
19:41during those periods of time,
19:43but we succumb to it out
19:45of strategies to cope.
19:47Now,
19:47most of the time we accept that
19:49as long as parents choosing
19:50option that's good enough,
19:52then that's OK as long as it doesn't
19:55cause significant harm to the patients.
19:57So in a sense,
19:59if you want a traffic light system.
20:01As long as it's not causing
20:03significant harm to the patient,
20:04then we're able to proceed.
20:07Even if we don't think that that's the
20:10most ideal or best option for the patient.
20:14Now,
20:14this of course requires that we have
20:17an understanding of the effects of
20:20carrying out the decision on whether
20:22on balance it would cause significant harm.
20:25And by harm I mean a significant
20:28set back to interests,
20:29including our future interests,
20:31so that may include things
20:33such as being free from pain,
20:35having good physiological function.
20:37Enjoying life,
20:38having happiness with now and in the future.
20:41A sense of bodily integrity.
20:43The ability to form meaningful
20:45relationships and be off to
20:48go to school or be at home.
20:50Now these interests over costs
20:51incredibly varied and for a child
20:54they may overlap significantly,
20:55but not necessarily the same as
20:57the interests of the family or
21:00other siblings in the family.
21:02And so our assessment of these things
21:04can be highly subjective and based
21:07on their own beliefs and values.
21:10So the tricky thing is that no matter
21:12how much of patients cases discussed,
21:15sometimes different members
21:16will formulate a very different
21:18assessment about
21:19whether a treat a treatment will
21:21cause harm and may be at risk
21:24of experiencing moral distress,
21:25even though the group consensus is that
21:28decision is ethically permissible.
21:30Now I want to highlight that although
21:32the group consensus may still be
21:34that it's ethically permissible,
21:36it doesn't necessarily take away the
21:38negative experience of moral distress
21:40for the person experiencing the
21:42experience is still incredibly real
21:43and needs to be managed irrespective
21:45of what that moral judgment is.
21:49The cause in acute care settings were
21:51faced with the challenge that we often
21:54feel like we're spending a lot of our time
21:57out in that alar rim of the Green Zone,
21:59but is sitting right on the edge of harm.
22:03We need frameworks to try and determine
22:06whether decisions will unbalance.
22:09Provide significant harm but also learn to
22:11live with some degree of moral discomfort.
22:14In these uncertain times.
22:16We need to understand that moral
22:18distress may reflect differing
22:21personal beliefs and values,
22:23rather than actually being a
22:25dependable marker that we're
22:27doing something morally wrong.
22:29In that sense,
22:30Marla stress can in some ways be
22:32expected and anticipated in an acute
22:34care setting or a progressive medical
22:36environment where the team are trying to
22:39advance and trying to improve outcomes.
22:41It often reflects the passionate workplace
22:43where team members are all trying to
22:45act in the best interest of the patient,
22:47and we shouldn't forget that.
22:50Therefore,
22:50moral stress,
22:51it always needs to be acknowledged,
22:53needs to be validated,
22:55but it doesn't always require that
22:57we changed the management plan.
22:59Or try to remove the perceived constraint.
23:04Now, it's also worth thinking
23:06about the nature of that constraint
23:08and what was surprising from our
23:10own data was a perception that.
23:12The perception that physicians
23:15were constraining.
23:16The nursing staff from doing the
23:18right thing was actually surprisingly
23:20absent from the open ended responses.
23:23Most of the time the clinical team
23:25agreed on what level of care should be
23:28provided to the patient and so where.
23:31For example,
23:31in the intelligence preferred intensive care.
23:34The other clinicians wanted withdrawal
23:36of life sustaining interventions
23:37in only 2% of occasions,
23:39but not surprisingly,
23:40moral distress was really common and
23:42occurs in around 76% of these occasions.
23:46Rather, what was clear was in the
23:49context of shared decision making.
23:50There had been a significant shift
23:53from the physician being seen as a
23:55constraint and rather the frustration
23:57seemed to be directed at the families.
24:00So 20% of our stuff or clinicians
24:02attributed their mile distress to
24:04the roles of the family in decision
24:06making and the belief that parents
24:08either didn't understand or lacked
24:10the capacity to make the decision.
24:13And some might question whether
24:15we're asking the impossible of
24:17parents to imagine how they add
24:19child's interest will be impacted.
24:21And what their future will look like?
24:24Particularly if there's going to
24:26be multiple stage procedures and
24:28multiple episodes where there may
24:30be additional burden along the way.
24:32Now it's not clear from El results
24:35whether or what clinicians intended
24:38by the meaning that families lacked
24:42understanding would like to capacity.
24:44A lack of understanding may
24:47stem from multiple sources.
24:48Sometimes there will be an information
24:51overload as we endeavour to communicate
24:54really complex information under
24:56highly stressful circumstances.
24:58It's true,
24:58sometimes it may be a denial of the
25:00situation or what we consider to be
25:02a false hope or belief that brings
25:04into rationality or the question of
25:06rationality of the decision being made.
25:09But I think more commonly.
25:12It's our own cognitive bias that
25:14leads us into thinking that if
25:16parents choose differently from us.
25:18Then surely they can't possibly understand.
25:23And often the implication.
25:24We it's although we kind of think that
25:28a lot of these things can be overcome
25:31by communicating better with families,
25:34taking time,
25:35understanding their story.
25:36The implication seems to be that
25:38sometimes our clinicians feel that the
25:41power shared decision making has shifted
25:43perhaps too much towards the family.
25:45Now I'll need it ologist.
25:49Also felt constrained in their decisions.
25:51There were times that they too felt that
25:53survival was done in the patients interests.
25:56However,
25:56they were more likely than other
25:58providers to align with the
26:00families preferred level of care.
26:02And support the family's wishes.
26:04Now there may be lots of reasons for this.
26:07It may be that they had been more heavily
26:10involved in the decision making process.
26:13They may have had a greater understanding
26:15of what the families goals,
26:17wishes values were and how that was
26:19reflecting their thought process.
26:21Therefore,
26:21having a clear understanding of
26:23what the families understanding
26:25was. It may have been believed that
26:27perhaps with time and ongoing discussions,
26:29but the family may shift in their views
26:32and be more accepting of palate if care.
26:35But some name intelligence may also have
26:38feared that a strong opposition to a family's
26:41wishes may actually impair the therapy.
26:44Good relationship and resulting on balance.
26:46A worse outcome for the patient.
26:50And this consideration reflects the
26:52second component of assessing harm
26:54within the zone of parental discretion,
26:56that is, making a judgment about what
26:59the effects will be on the child.
27:02Were we to override the parents decisions?
27:04Will these potentially negative effects
27:07actually constitute a greater harm
27:09to the child then the harm expected
27:12from the parents original decision?
27:14No more the stress under these circumstances
27:17can be incredibly difficult where
27:19there's a sense of in agreement amongst
27:21the treating team that the treatment
27:24is disproportionately burdensome.
27:25But to override the parents
27:27decisions may cause a greater harm.
27:29Requires really clear and honest
27:31communication as a team and a sense
27:34that everyone still working together,
27:35to which achieves the same goal of trying to
27:39achieve the best outcome for that patient.
27:42Even if that outcome may take some time.
27:45And I'm so incredibly grateful to our team
27:49of nurses in particular who continue to
27:52provide hour by hour compassionate care
27:55under these really challenging circumstances.
27:59Now saying around the same
28:00time as my research,
28:02social media really brought into
28:04international attention the issue of
28:06who should decide the interest of the
28:08patient and highlight some of the
28:10challenges of the potential harms seeking
28:12to override the wishes of parents.
28:14Some of you will recognize these as
28:17being the parents of Charlie Gard.
28:19Who sought to take their in Kepler,
28:22Pathic and ventilator dependent son with
28:25a very rare mitochondrial DNA depletion
28:27syndrome from the UK to the US in order
28:30to receive an experiment treatment that
28:33hadn't previously been trialed in humans.
28:36He's treating team had felt very
28:38strongly that it wouldn't be in his
28:41interests and sought legal action to
28:43ceaseless sustaining interventions.
28:45Now the ethics in question were
28:48purely based on whether that was
28:50a harm or benefit to this child.
28:52That wasn't a question
28:54of resource allocation.
28:55The family had done an amazing job of
28:58crowdfunding to receive the funds they
29:00needed in order to transfer his care.
29:03But this disagreement resulting
29:05in a brutal five month court case.
29:08And thanks to social media,
29:10everyone had an opinion from everyday people.
29:13To the president of the United
29:16States and the Pope.
29:18And as you are all well too aware,
29:20it's become such a commonplace
29:22for social media to shape our
29:25popular opinion and discourse.
29:27Even in our private consultations
29:28were often no longer speaking to
29:31a patient or family in isolation,
29:32but we may be dealing with the opinions of
29:35doctor Google or a specific support group.
29:38Sometimes will benefit from the
29:40additional perspectives and experience.
29:42We can certainly learn from
29:44our patients and their support
29:46groups. But at other times,
29:48it can certainly feel challenging and
29:49feel like an additional barrier to
29:51achieving what we think is in the best
29:53interest for the patients in front of us.
29:56What was also evident from the case
29:59of Charlie Gard was the degree of
30:02moral outrage or indignation that was
30:04experienced on both sides of the debate.
30:07No moral outrage is the anger
30:09that's experienced in response
30:11to a perceived injustice,
30:12so possible expression of Mila stress.
30:16When moral outrage is misdirected,
30:18it can seek to shame,
30:20punish the perceived wrongdoers,
30:21and can actually have the potential to to
30:25further constrain the actions of others.
30:27This is an image of Charlie's Angels
30:30who were some of the protesters.
30:32Protesting against Charlies
30:34treating team in the UK.
30:36A man is as a result that the star for
30:39the clinicians at his hospital received
30:41a number of physical and verbal threats,
30:44including death threats,
30:45over doing what they believed was
30:48the right thing by the patient.
30:50Now,
30:51as health care professionals who are
30:53not immune from experiencing moral
30:55outrage or indignation in response to
30:58perceived injustices or wrongdoing.
31:00At best it can represent the passion
31:02that we bring to our workplace and
31:04our efforts to do the right thing
31:07by our patients that may stem
31:09from really good motives.
31:10But if not controlled.
31:13Then undirected then we also risk
31:15overpowering the voices of others.
31:17And I think this can be really
31:19problematic in health care if we
31:21inadvertently use our position of
31:23power to force our views on others,
31:26especially if our moral distress
31:27arising from moral subjectivity,
31:29where there is reason to believe that
31:31the decision may still actually be
31:34ethically permissible or be within
31:35the zone of parental discretion.
31:38If we. Want to be heard? Then?
31:42We also need to expect to listen.
31:45But we also need to accept that
31:47being heard doesn't necessarily
31:49mean that we get our own way.
31:51This became really apparent
31:53in our follow-up study.
31:55We recognize that by asking clinicians
31:57to complete regular surveys,
31:59it was providing them with an
32:01opportunity to express their opinions
32:03that they may not have otherwise had
32:06in the fairly anonymous fashion.
32:09It was a safe way to do it.
32:11And suddenly,
32:12clinicians believes that the
32:13study had the benefit of raising
32:16awareness about monstrous,
32:17in giving voice to concerns that the
32:20patients were receiving potentially
32:22overly burdensome treatments.
32:24However,
32:25some also recognized that there
32:26was a risk of empowering 1 voice,
32:29potentially at the risk to
32:31another and one Nina.
32:32Tala just put it this way.
32:35That this study has not helped staff
32:37cope with accepting parents decisions.
32:39The staff are getting more distressed
32:41because they have a name to put to
32:44it without thinking that this is a
32:46family centered unit and the needs,
32:48thoughts and desires of the
32:49family come first,
32:50not the thoughts of the staff
32:52as to what they think is right.
32:57Now will return full circle to some
33:00of the more difficult constraints.
33:02Those that arise from systemic shortages
33:05and inequalities in society and many that
33:09have been brought into light by COVID-19.
33:12Before going any further,
33:13I want to acknowledge that my lived
33:16experience of COVID-19 is very different
33:18to those living and working in the USA.
33:21Different countries have taken very
33:23different approaches to addressing
33:25COVID-19 around the world were very
33:26different results and my purpose
33:28today is not provide any analysis
33:30of the different approaches taken,
33:31not to say one way is better than another.
33:35But to understand the moral
33:37distress within this context,
33:38it's therefore important to understand
33:40that the balance of risks and
33:42burdens in Australia is currently
33:44very different to how things look
33:46in the United States of America.
33:48Australia, and particularly the state
33:51of Victoria or Melbourne where I live.
33:53Has taken a much more conservative
33:56response to COVID-19,
33:58with many greater restrictions
34:00to personal liberties.
34:02Arguably,
34:03we have some of the toughest and
34:05the longest restrictions of any
34:07country around the world despite.
34:09Having very minimal numbers
34:10compared to other countries,
34:12the aim has really been to
34:14limit any community spread,
34:16if not eliminate the virus.
34:19Here in Melbourne,
34:20Al,
34:20children are only just returning to
34:22school as discussing with Mark beforehand.
34:24My youngest went back to school
34:26yesterday for the first day after
34:28about seven months of lock down.
34:30And we are still essentially in stage.
34:33Four lockdowns were still only
34:34meant to venture outside.
34:36If we're working, exercise,
34:38shopping for necessities, or providing care.
34:41Despite our community transmission being
34:44cases of between 10 and 20 per day.
34:48Now,
34:49breaches of the restrictions in
34:51Australia currently mean being at
34:54risk of more than the $1600 fine.
34:57If you're in public without a mask,
34:59you could be fined $200.
35:01So clearly there have been two
35:04very different approaches with
35:05very different outcomes.
35:07As you can see from the slide out,
35:10we've had as of two days ago we had
35:13898 deaths in Australia to date.
35:16Those are predominantly in
35:17the state of Victoria,
35:19compared to more than 200,000 decimals
35:22in the United States of America.
35:25As a clinician,
35:26I'm very thankful that I haven't
35:27had to directly witness the extent
35:29of tragic loss that you suddenly
35:32experienced in the United States,
35:34and I certainly wish to extend
35:36my heartfelt condolences to any
35:39of you have experienced loss
35:41and tragedy during this time.
35:43Despite these differences,
35:44many of the challenges have been
35:46the same for the average clinician.
35:48There's been an obvious shift from
35:50being able to wake up the harms and
35:53the benefits for the patient in front
35:55of bus to having to take more of a
35:57public health or crisis approach.
36:00Putting things in place for the
36:02greater good rather than the
36:04individual in front of you.
36:05Now,
36:06many of us have experienced first
36:08hand the overwhelming sense of
36:09helplessness and frustration of
36:11fulfilling our duty to uphold it.
36:13Public health restrictions into Kobad 19.
36:16While at the same time being
36:18prevented from implementing patient
36:20or family centered care of this,
36:22demonstrating compassion through touch,
36:24or perhaps supporting what we in
36:27western culture often think of
36:29being a good death through being
36:31surrounded by friends and family.
36:33In Australia, despite our low cases,
36:36there still be many concerns about resource
36:38allocation and insufficient supplies
36:40for personal protective equipment.
36:42With health care workers making up a
36:45disproportionate number of COVID-19 cases,
36:47particularly now second wave.
36:50Our clinicians have felt the dilemma of
36:52choosing between the duty to care for
36:55patients and fearing putting themselves
36:58or vulnerable family members at risk.
37:00Again, Fortunately I tough restrictions
37:03haven't meant that we have met that.
37:06We haven't had to enact any triage protocols
37:09for ICU admission or for ventilator.
37:12We haven't had any
37:14restrictions to bed capacity.
37:17We've been in general,
37:18able to provide the level of
37:21care that we think.
37:22Is appropriate for our patients?
37:25But there still remains lots of
37:27questions around how a vaccine
37:28would be justly accessed quickly,
37:30given that will need to source it
37:32from a country outside of Australia.
37:34And how will we distribute it
37:37fairly if and when it is developed?
37:40At this stage of the pandemic in Australia,
37:43given our low rates of community
37:45transmissions,
37:45there's been an increasing moral distress
37:48about whether our severe restrictions
37:50are getting the risk benefit analysis right.
37:53Or whether we are at a point where
37:55actually signed cause more harm
37:57through our restrictions than good.
37:59And again,
38:00what is more most troubling is that
38:02COVID-19 is already highlighted.
38:04Some of the wicked problems that
38:06we have in society.
38:08I really appreciated doctor Thomas is
38:10recent presentation on racial and ethnic
38:12disparities in the United States of America,
38:15and sadly,
38:16it's true that it's often our most vulnerable
38:19in society who are harmed by the community.
38:22Measures that are in place.
38:25In Australia we are fortunate to
38:27have a universal health care.
38:29Any pediatric patient that comes
38:32to my hospital will receive the
38:35exact same treatment irrespective
38:37of their insurance coverage.
38:39Yet,
38:40reductions in service provision and
38:43potentially even on-site physicians
38:46being less available has at times,
38:49delayed treatment or potential surgery.
38:52Al community resources have
38:54been most affected,
38:55placing even more pressure on
38:56our general practitioners out in
38:58the community on the frontline,
39:00but also on our hospital system.
39:03Thus,
39:03although we're not burdened by
39:05the high numbers of covid cases,
39:07there still being significant strain on
39:09the hospital system and its employees.
39:12And our children seem to be
39:14disproportionately affected
39:15by the measures in place,
39:17particularly considering that the
39:19rare effects or risks of COVID-19
39:22on their own personal health.
39:24We have in effect in Australia
39:26taken away many other community
39:28structures and services but keep
39:30kids and family safe and provide
39:33visibility to inequalities in society.
39:35As I mentioned,
39:36our kids have been homeschooling
39:38essentially for seven months now.
39:40Many a socially isolated and mental
39:42health concerns are soaring,
39:44with the demand surpassing the
39:46capacity within the public health
39:48system. So over the past month,
39:50there's been it's about a 30% increase
39:53in under 17 year olds presenting to
39:56emergency department's with mental health
39:58concerns and episodes of self harm.
40:01As our governments begin to kind
40:03of focus on economic recovery,
40:06it's likely that LV reduced resources
40:09available to adequately address some of
40:12these systemic deficiencies and inequality's.
40:14As healthcare workers or professionals,
40:16we need to uphold the
40:19restrictions of our government.
40:21But we also may be morally distressed
40:24by the disproportionate negative
40:25effects on our patients who
40:27personally have very little to gain
40:30from the restrictions in place.
40:32The International Child Health Group
40:34and the Royal College of Paediatrics
40:37and child health have recently published
40:40a joint statement in archives that
40:42outlines some of these concerns.
40:45And of course,
40:46these issues are exacerbated in
40:48countries that don't have social
40:50services or universal health care
40:52that we benefit from in Australia.
40:54UNICEF and Save the Children estimate
40:57that 150 million additional children
41:00are living in multidimensional
41:02poverty due to COVID-19.
41:04Now this multidimensional poverty refers
41:07to access to education to housing.
41:10To health care, nutrition, sanitation, water.
41:14And involves more than 70 countries
41:17that were surveyed.
41:191.6 million children around the world
41:21have been affected by school closures.
41:23And,
41:23of course,
41:24the divide between those with resources
41:26and those without continues to grow.
41:28Measures in place to reduce the
41:31transmission of COVID-19 have also
41:34reduced access to immunization.
41:36The World Food Programme predicts
41:40a doubling sorry.
41:44Predicts a doubling. Of malnutrition.
41:48And again this will disproportionately
41:51affect children in society.
41:53So as we begin to plan a road
41:55map to recovery post code,
41:57but we also need to anticipate the
42:00additional resources that will be required
42:02to address the secondary consequences
42:04and deal with the social inequality's.
42:06In some countries around the world,
42:08resource allocation to deal with the
42:11indirect consequences of COVID-19
42:13may be just as much or even a
42:15greater source of moral distress.
42:17The direct effects of COVID-19 itself.
42:21Now, most of us realize that we're not
42:23going to be returning to a pre kovid world.
42:26We have to learn and we need to adapt.
42:29And nor will COVID-19 be the last
42:33worldwide challenge or pandemic.
42:35Even pre covered in Jemmott and
42:37the nursing philosopher who had
42:38originally coined the term mild
42:40distress recognize that the nature
42:41of constraints that we experience
42:43in everyday practice are changing.
42:45Yes, within acute care settings
42:48within the Entology.
42:49We will always continue to debate
42:52whether sustaining life sustaining
42:53interventions are in a patients interest
42:56or whether they are overly burdensome.
42:58Particularly as our technology increases.
43:01Hopefully that debate will be
43:03respectful and improve our practice.
43:06However,
43:06we also need to deal with much bigger,
43:09broader issues,
43:10including climate change and social
43:11economic issues will continue to
43:13exacerbate social inequality's in society,
43:15and no doubt contribute to some of
43:18the moral distress experienced.
43:20Sometimes these problems can
43:23feel impossible to address.
43:26Sometimes I think though we can learn
43:28from the past and in managing other
43:31forms of moral distress to at least
43:33think about how we can manage more
43:36distress related to these bigger issues.
43:39So as individuals,
43:41I think we have a responsibility to
43:44critically appraise the underlying
43:46moral judgment that has resulted
43:48in a moral distress.
43:50We need to have humility to recognize
43:53medical uncertainty and our own
43:56limitations that humility can mean
43:57that we can enter a conversation,
44:00not just wanting to be heard,
44:03but Desiring to listen and to hear others.
44:07I think we need to continue to encourage
44:10our own well being in resiliency,
44:13and as I mentioned earlier,
44:15there's often been some concerns
44:17raised that measures to improve well.
44:19Being resiliency may detract
44:21from the broader.
44:23Problems of modest dress or in
44:25addressing the constraints that we face,
44:27particularly with institutional
44:29constraints in mind.
44:30That you.
44:31It's a cover up approach
44:32or a band aid approach,
44:34but I think resiliency and well
44:36being goes hand in hand with other
44:38measures of addressing moral distress.
44:40We have to have a multifaceted approach.
44:43As many of you will recognize and when
44:46facing multiple pressures during COVID-19,
44:48when we're well rested when
44:49we've eaten when we looked after
44:52ourselves in their own well being,
44:54we have a much greater capacity
44:56to actually engage in difficult
44:58conversations or face problems head on.
45:01As clinicians,
45:02we also need to be taught skills
45:06in reflecting on our practice on
45:11being able to critically analyze on.
45:15Why clinicians may think differently
45:17to Wallace?
45:17Why a decision is ethically permissible,
45:19even if not ideal?
45:21Or even if it's not seem to be the best?
45:25We need to think about how we can raise
45:28concerns in the most constructive manner.
45:31And that requires that we have ongoing
45:33frameworks in helping people to know how
45:35to weigh up the harms and the benefits,
45:38and this can be incredibly challenging.
45:40Whether it's trying to determine
45:42whether a burdensome life sustaining
45:43treatment is actually causing harm,
45:45or whether it's weighing up the burdens
45:47and benefits of the patient in front of
45:50us in light of broader health concerns.
45:55I think we also need to consider what
45:57we bring to the situation and consider
45:59whether our own desire to resolve
46:01their own wireless dress is actually
46:04constraining the actions of others.
46:08This requires that we actually
46:11direct our moral outrage towards
46:14advocacy rather than rage.
46:16So said moral outrage can be inappropriate.
46:19Response to injustice is that we
46:21regularly within our healthcare sector.
46:24But we need to ensure that
46:26we reflect on the source of
46:27that anger and directed away.
46:29Set a meaningful and brings around
46:31change rather than that divides,
46:33blames or unfairly forces
46:34out of stress on others.
46:38In Cinder, Rushton has written
46:40beautifully done recently on
46:42leveraging the urgency of the
46:43COVID-19 emergency in order to
46:45act as a catalyst for change.
46:47Of course some of these ethical
46:49issues in social disparities.
46:50These aren't new issues,
46:52but we have an opportunity now that
46:54they've been brought to life duty.
46:57Call to attention due to COVID-19.
47:01To harness that and she make
47:03changes in our community.
47:05But it requires that we harness
47:08our emotions and thoughtfully
47:09direct our moral anger or outrage.
47:11Inacom considered an intentional manner.
47:14To actually deal with the source
47:15of the problem.
47:18And given that moral distress is
47:21something that can very much strike,
47:24and the person's moral integrity.
47:27We also need to help people to find
47:29meaning in other aspects of their role,
47:32especially in cases when the
47:33constraint can't easily be dealt with.
47:35In those cases where perhaps,
47:37moral distress.
47:38Is present in in the context
47:40of moral uncertainty,
47:42where people are sitting on both
47:44sides of the fence and certainly
47:47during COVID-19 there's been many,
47:49many beautiful stories of how clinicians
47:51and communities have creatively
47:53showing love and compassion and
47:55really extraordinary circumstances.
47:56Admidst human tragedy.
47:58Not only does this demonstrate care,
48:00but it serves to restore the sense of
48:03purpose in one's role at restores the
48:06sense of being able to make a difference.
48:09Even if it's only one life at a time,
48:12in what Macy seem a really small way.
48:17An institutional level.
48:18We need to try and create a culture
48:21where all voices are heard and
48:23where the teams are supported
48:25to provide ethical analysis.
48:29And again, this may steady somebody
48:32associated moral outrage that
48:33often accompanies mile distress.
48:35By meeting together,
48:37it can help to clarify the problem,
48:39determine the underlying ethical issues
48:41or the permissibility of decisions,
48:43and at times even align people into action
48:45in more constructive ways where required.
48:48There are many,
48:49many different forms of how to do this,
48:52whether it's through debriefing
48:54through ethical consultations.
48:55And your own institutions will
48:57have their own strategies to
48:59provide these opportunities.
49:01Sometimes it will so be the need for
49:04independent employer assist programs
49:06to provide additional support as well.
49:09But at some point we also need to
49:11create a sense of shared responsibility
49:13and teamwork across provider groups.
49:15This needs to be a sincere sentiment
49:18rather than just an empty slogan.
49:20At the start of the pandemic in Australia,
49:23the Australian government used the
49:25slogan we're all in it together to
49:28encourage compliance on restrictions
49:29to social liberties.
49:31I suspect you've had similar slogans
49:33in the United States of America.
49:36In essence,
49:37mentor kind of encourage compliance
49:39of working together to effectively
49:42eliminate the virus in our community.
49:44But by the 2nd wave in Australia the
49:47message had lost its appeal as it was
49:49clear that we were no longer in it together.
49:52Different states have different
49:54restrictions in place for unclear reasons,
49:57and some communities felt and none
50:00recently so unfairly discriminated
50:02against as arbitrary lines were drawn.
50:05A sense of shared responsibility can
50:08only be upheld if there's transparent
50:11processes that are open to scrutiny.
50:14But in order to assess whether
50:16the constraints are reasonable,
50:18we also need to be able to critically
50:20analyze the evidence and adjust our
50:22policies according as accordingly
50:23as new evidence becomes available.
50:26Having transparency and clear
50:29communication are essential.
50:32But we also need to learn how to be
50:34after director moral distress and
50:36outrage in constructive ways and
50:38advocacy can be a really useful and
50:41meaningful way to actually improve
50:43outcomes for both our patients
50:45and our society.
50:46So I think I've displayed today that my own
50:51stress is really complex and it's messy.
50:55And increasingly,
50:56I think West and see more distress
50:58from broader socioeconomic
51:00concerns or wicked problems.
51:02I want to keep in the message
51:04that it reflects passionate people
51:06trying to do the right thing.
51:08Sometimes they'll be good
51:10and ethical reasons.
51:12Supporting the decisions that are being made
51:15in our communities and in our workplaces.
51:18Sometimes out differences will stem
51:20from having different values or in
51:23within our pluralistic society,
51:25but nonetheless we need to ensure
51:28that we're responding appropriately
51:30by actually taking the time to stop,
51:32to reflect and to review the underlying
51:36moral judgments and the constraints.
51:39And reconsider the ethical issues.
51:42We need to really take effort to
51:44ensure that all people are feeling,
51:46heard, validated and supported.
51:48I would hope, then,
51:50that perhaps more distress can
51:51actually foster constructive dialogue
51:53and be used for good,
51:54or whether it's improving outcomes
51:56for the patients in front of us.
51:59Or contributing to making a better,
52:01more just society.
52:04And with that, I'll finish my formal
52:06presentation when I hope we can have
52:08some really rich discussion about
52:10the challenges of moral distress.
52:12And I guess I'm also interested
52:14to hear your perspective in the
52:16United States about how potentially
52:18those constraints have changed.
52:20Hand over to mark.
52:22Thank you so much Trisha, that was marvelous,
52:26was a very thought provoking talk.
52:29And then open it up to
52:30questions from the group.
52:32And of course you touched on two subjects
52:34near and dear to the hearts of many
52:36of the people in the audience today.
52:38One would be the moral distress in
52:40the newborn ICU and the other being
52:42because we faced with related to kovid.
52:44I wonder if if it's a broader question.
52:47I have two questions which help
52:49which I ask and then and then I
52:51want to open up to the others.
52:53The first is, do you know or do you
52:55have evidence that we sense it?
52:57Certainly in the newborn intensive care unit.
52:59And in terms of We're all in this together.
53:02I wonder if there's any data on
53:04whether other fields within healthcare
53:05experienced it to the same degree
53:07to the people who are taking care of
53:09adults face these same situations.
53:11I certainly know anecdotally that they do,
53:13from my own experience with it,
53:15with so many years that sharing an
53:17adult Ethics Committee that there
53:18are situations where the adult son or
53:20daughter seems to have cornered the
53:22clinical team into doing something
53:23that they feel moral distress about,
53:25which is just a continuing critical
53:27care measures beyond the point where
53:29they think is best for the patient
53:31or the right thing to do.
53:33But do you know of any evidence
53:34that tells us this is more prevalent
53:35in Winfield versus another?
53:38And so the evidence is there that
53:40is prevalent across all fields,
53:41and it gets particularly
53:42prevalent in acute care settings,
53:44and where we often are asking
53:46life and death situations,
53:47I think it's often certainly there's
53:49evidence within the knee national field,
53:51and from our own research that
53:52where my most often distressed
53:54when we feel like we're doing too
53:56much rather than doing too little.
53:58So I think that's why we do see it
54:00a lot in our acute care settings
54:02or in settings such as oncology,
54:05where those questions about
54:06whether it's actually starting to
54:08cause harm to the patient.
54:09I think there are some differences
54:11in the pediatric population though,
54:13particularly in the sense that we
54:15have a parent who is acting as a
54:18proxy decision maker rather than
54:20dealing with an autonomous being
54:21in front of us who can make or
54:24provide a more accurate reflection
54:26of what's in their own interests,
54:28and so when dealing with
54:30pediatric populations.
54:31There's a little bit more an ambiguity
54:33in the sense about what's the
54:35patients interested because they can't
54:37tell us what's meaningful to them.
54:40Sometimes we make very subjective
54:42judgments about what their experience
54:44or lived experience is within our
54:46neonatal intensive care unit setting.
54:49And sometimes we also.
54:51With a rightly or wrongly,
54:54make a lot of judgments about whether the
54:57parents have the right interest at heart.
55:00Because sometimes they can be clearly
55:02competing interests between families.
55:03So if the patient lives in remote Australia
55:06and their child needs a tracheostomy,
55:08that's certainly going to have
55:10a big impact on the interests
55:12of the rest of the family,
55:14and so our family can be feeling
55:16quite torn between weighing up
55:18the interests of different family
55:20members and so it's a little bit
55:22of a different scenario within
55:24the pediatric population.
55:25And so I think that's why
55:27it's we find it quite
55:29prevalent. Thank you very much. Thank you.
55:31I want to just let the audience know that
55:34if you will put something in the Q&A,
55:36then I'll be I'll be going through the
55:38questions and sharing with Doctor Prentice.
55:40Our question for me,
55:41and then we're going to open it up to
55:44the group as they as they file in you
55:47gave us a very interesting response
55:48to one person in your research.
55:50I think it was a neonatology
55:52attending perhaps who had said,
55:53you know what you know.
55:55This talk about moral distress isn't helping,
55:57isn't helping anybody by putting
55:58a name to it.
56:00It's not really helping relieve peoples
56:01distress, and it's actually giving
56:03him more focus to that to stress.
56:05And in the end you seem to suggest that
56:07the conversations are in fact helpful.
56:09Again, I have anecdotal experience
56:11with that where.
56:12Uh, nursing the nursing staff.
56:13Very upset that we're doing
56:15something being more aggressive
56:16than perhaps we should be with us.
56:17We felt was best for the child
56:19and when we talk and say,
56:21listen,
56:21this is what the parents have
56:23chosen and though none of us
56:25really think it's the best idea,
56:26we think it's within the realm of
56:28what's what's their their their zone
56:30of parental discretion as you and
56:31Lynnwood would say that they are within
56:33their rights to ask us to do this
56:35if they are acting in good faith in
56:37what they think is best for their child.
56:40But I was curious about
56:41that individual who said?
56:42No,
56:42it doesn't actually help to be doing this.
56:45To identify it to talking to open up.
56:47Do you have a response to that individual?
56:51Yeah, I think there's two
56:52aspects of of that, mark.
56:54I think it's certainly true that
56:55when I've talked to some avital
56:57older nursing colleagues that
56:58quite often they talk about that.
57:00In the past we used to have
57:02these same situation in the same
57:04ethical issues are still there,
57:05but actually they were just kind of
57:07expected to kind of get on with the job.
57:10Suck it up. It was part of their duty.
57:12You just accepted it.
57:13I don't think we want to return to that.
57:17I think we want to embrace
57:18that we are human set,
57:20but our work does actually take
57:22a toll on us and we need to
57:24acknowledge we need to acknowledge
57:26the effects that it does have on us.
57:28We do actually need to acknowledge and
57:31validate the experience of moral distress.
57:33What I think needs to change,
57:34though,
57:35is how that we respond or what we
57:37expect when we express moral distress.
57:39So I think particularly with
57:41moral distress literature,
57:42it kind of evolved at a time where.
57:44Language of empowerment.
57:46Was very prevalent.
57:48We say there are no kids at school
57:50that our kids are going to be
57:53such an empowered population.
57:54They there's no barriers to
57:56anything that they want to do.
57:58They're kind of taught and trained to.
58:01To go out and do whatever they want and
58:03don't let anything stand in their way.
58:05The sign language has been
58:07kind of applied tomorrow.
58:09Distress in the sense that people have
58:12been encouraged to kind of stand up
58:14to demonstrate their moral outrage,
58:16innocence and to expect that
58:18with that empowerment,
58:19and with that moral courage to speak
58:22out that there's always an expectation
58:24that the treatment plan will change.
58:27And I think that is where it
58:29becomes unhealthy or unhelpful.
58:31I think if it's used as an
58:33opportunity to stop and reflect and
58:36to actually review the situation.
58:38Then it can be used for good,
58:40but if it's there have been situations
58:43where sometimes when people express
58:44that their morally distress,
58:46they're basically saying You need
58:48to change what you're doing.
58:50So I remember example,
58:51I guess a formative example from when
58:54I was a fellow myself that I was.
58:56I went to review one of our very
58:59complex patients on the unit,
59:01and the nurse was in complete uproar.
59:04She was very upset that the patient was
59:06receiving this terribly aggressive treatment.
59:08The patient was suffering and she
59:11was just absolutely angered that the
59:13attending so you call them didn't
59:15seem to be present there on the Ward.
59:18She felt that that was a
59:20sign that they didn't care.
59:22They went there for the patient.
59:24But what I knew was the attending was
59:26actually hidden away in their office,
59:28essentially in fetal position
59:29under the desk because they were
59:31so exhausted from every time that
59:32they went on to the Ward that they
59:34were effectively hammered by the
59:35same comments that this is cruel.
59:37You need to suck it up.
59:39You need to tell the
59:40parents that this is wrong.
59:41We need to stop even though to them
59:43the decision was still in the zona
59:45parental discretion or ethically permissible.
59:47Or perhaps it was just going to take some
59:49time to get to the parents to the same point.
59:51So I think again it's useful
59:53and it's important to actually
59:54recognize more distress,
59:56but we need to change our expectations
59:58about what that means when we express it.
01:00:00It's not just about saying,
01:00:02hey, I'm really distressed.
01:00:03You will need to change what you're doing.
01:00:05It needs to open up a conversation and a two
01:00:08way conversation where we actually go OK?
01:00:11And I hear your concern and distress.
01:00:13Let's actually talk about it.
01:00:15Let's review the case.
01:00:16Let's open a discussion.
01:00:17'cause If you know that
01:00:19one person is distressed,
01:00:20I can guarantee that there's
01:00:21going to be a whole room of other
01:00:24people who are also distressed.
01:00:25And so we need to open up that discussion,
01:00:28not just with that one individual,
01:00:30but with the whole team
01:00:32about what the goals are.
01:00:33Carer wear out.
01:00:34Why were there and how we're going
01:00:36to move things forward in the future?
01:00:38And sometimes it's actually helpful
01:00:40to express our own moral distress.
01:00:42As well,
01:00:42I think as attendings don't know what
01:00:45the system is like in the United States,
01:00:48but I think we're generally taught
01:00:50to be fairly controlled where.
01:00:52We are trained to kind of manage chains
01:00:54an often in a way that means that we
01:00:56keep all our emotions on the inside,
01:00:58and so sometimes we're not
01:00:59very good at expressing that.
01:01:00Hey,
01:01:01I hear the stress and actually
01:01:02I'm feeling the same thing.
01:01:03I just haven't been able to say it.
01:01:06Thank you another question.
01:01:12Do
01:01:12you have any sense of whether your
01:01:15research on the moral distress
01:01:17of professional caregivers,
01:01:18which is to say our licensed clinicians,
01:01:21could inform our ability or obligation,
01:01:24who acknowledged the distress that
01:01:26are less supported, less recognized,
01:01:28informal caregivers may experience?
01:01:31So sorry, I think the question mark
01:01:33is do I have any evidence about it?
01:01:36It's not a simple sense,
01:01:37so let me read it again.
01:01:39'cause I'm with you too.
01:01:41I'm I'm personal desire and
01:01:42I'm guessing perhaps if I can try and
01:01:45clarify the question mark and you can
01:01:47tell me if that's what its meaning.
01:01:49But the question is acknowledging that
01:01:51we have a multi disciplinary team and
01:01:53as well as a number of members on it.
01:01:55Our units such as cleaners
01:01:57and other people hour.
01:01:59Administrative team who may be bearing
01:02:01witness to some of the things that go
01:02:03on in our Ward who may not necessarily
01:02:05be as much of the conversation,
01:02:07or there may not be actually any evidence
01:02:10about their experiences of moral distress.
01:02:12So I think
01:02:13it's right in my friend Jenn can
01:02:14type here if I've got it wrong,
01:02:16but I think you've got it right
01:02:17that there are those who are,
01:02:19you know, we tend to think of
01:02:20the doctors and the nurses,
01:02:22and perhaps the respiratory therapist.
01:02:23But there are others involved
01:02:24in 10 in providing care as
01:02:25well and who may have less of
01:02:27a voice, yeah? Yes,
01:02:28so I think it's a really important question.
01:02:31There are most a lot of empirical
01:02:33research on moral distress has tended
01:02:35to focus on a single provider groups.
01:02:38There are some studies that have touched
01:02:40on both medical and nursing and some
01:02:43that have even broadened it to allied health.
01:02:45I appreciate with my own study that
01:02:47we certainly thought about whether
01:02:49we could involve other allied health
01:02:51professionals as part of that discussion.
01:02:53But as part of ensuring that
01:02:56we could maintain their,
01:02:57make sure that their responses
01:02:59were still anonymous.
01:03:00We felt it was necessary to actually just
01:03:03restrict it to nursing and medical staff,
01:03:06so that was an intentional methodology
01:03:08plan rather than actually trying
01:03:10to exclude their voices per say.
01:03:12There are certainly kind of opinion
01:03:15pieces in various some recognition
01:03:17that anyone who is exposed to
01:03:19these traumatic situations can
01:03:21still have some moral distress.
01:03:23Alot of it comes out more
01:03:25in some of the trauma.
01:03:28Literature rather than the moral distress
01:03:30literature because it's more about
01:03:32people who are bearing witness rather,
01:03:34and I'm thinking here more in terms
01:03:35of some of our administration staff or
01:03:38things who are witnessing what's going
01:03:40on on the units but aren't necessarily
01:03:42involved in the decision making.
01:03:44Who out bearing witness to
01:03:47those kind of tragic events?
01:03:50And may still be distressed by it.
01:03:53Sorry Mike,
01:03:54you're going
01:03:54to plan and general pointed
01:03:56out that she was also focusing
01:03:57specifically not just on those who
01:03:59not just the hospital employees,
01:04:01etc, but the patients,
01:04:02families and other loved ones
01:04:04who are involved. This may
01:04:06also feel more question what we're doing?
01:04:08Yeah, that's a wonderful question.
01:04:09I think there's actually very little
01:04:11evidence or any empirical studies
01:04:13that address the aspect of the
01:04:15parents experience of Marla stress.
01:04:16We kind of assume that the parents
01:04:18must experience moral stress.
01:04:20It's clear from the type of scenarios
01:04:22that we've been discussing today that.
01:04:24You can imagine that parents do feel
01:04:26constrained when they've got a team of Ninat,
01:04:28Ologists or attendings,
01:04:29and the medical team coming
01:04:31in and saying to them,
01:04:32I think it's time to stop.
01:04:34And I put that in fairly harsh terms,
01:04:37but there are certainly scenarios where
01:04:39you can see the distress of the family
01:04:41that they feeling forced into a scenario
01:04:43that they perhaps don't want to go down.
01:04:46So one would have to assume that they still
01:04:48have that experience of moral distress
01:04:50in the same way that we experience it,
01:04:53there is some.
01:04:54There's certainly some interest in
01:04:55looking at the parents perspective,
01:04:57so Rebecca Greenberg in Canada has
01:04:59suddenly raised the question of,
01:05:01or the concept of moral schism in parents,
01:05:04and she's used that term differently
01:05:06from moral distress because she's trying
01:05:08to express that parents may have a
01:05:10different expression of moral distress,
01:05:12even though they may still feel
01:05:14constrained in the same way,
01:05:16and will still form a moral judgment.
01:05:19I think some of her working around.
01:05:23Well,
01:05:23I don't know if she happens to
01:05:25be on the line,
01:05:26but I think the part of her definition
01:05:28of moral schism is also recognizing
01:05:30that there's different tensions that
01:05:32families may feel that a mixed in with
01:05:34those feelings of moral distress.
01:05:35So, as I alluded to before,
01:05:37they may feel some additional
01:05:38tensions in terms of thinking about.
01:05:40If I make this decision for this child,
01:05:42how is that going to influence or impact
01:05:45the interests of my other children?
01:05:46You know,
01:05:47I'm spending all my time in
01:05:49hospital at the home at the moment.
01:05:51I feel like I'm actually neglecting
01:05:52my other child.
01:05:53So there's a whole lot of other kind of
01:05:55moral dilemmas that they're facing at
01:05:57the same time as potentially dealing
01:05:59with end of life decision making,
01:06:01so it may be a much more murky
01:06:03picture of trying to tease out
01:06:04what we consider to be a strict
01:06:06definition of moral distress versus
01:06:08experiencing moral tensions.
01:06:09But certainly I think the experiences
01:06:11of parents need to be brought out and
01:06:13we need to be highlighting their voice
01:06:15as part of this discussion as well.
01:06:17So I think it's a really important question.
01:06:20Thank
01:06:22you. Next question please.
01:06:25Dear healthcare teams include
01:06:27chaplains and how do they engage
01:06:29in care around moral distress?
01:06:33Yeah, so we certainly do have chaplains or
01:06:36pastoral care workers as part of our team.
01:06:39I think actually, in terms of the earlier
01:06:42framing of the question in thinking
01:06:44about who is potentially moralist. Rest,
01:06:47but not necessarily part of the discussion.
01:06:49I think there are team who often
01:06:51are a witness to significant trauma,
01:06:54but don't necessarily there not
01:06:56necessarily involved in some of the other
01:06:59discussions that are going on at the time,
01:07:01so I think they're a team that certainly.
01:07:04Need to be engaged in US providing
01:07:07an understanding to them of why the
01:07:10decisions that are being made. Out.
01:07:13Certainly for after any death or any
01:07:15critical events or distressing circumstances,
01:07:18we certainly do try to have multi
01:07:21disciplinary meetings on our units
01:07:22in various formats depending on
01:07:24the needs of the clinicians,
01:07:26including tadjik brief about some of
01:07:28the ethical issues that are going on,
01:07:31so they will certainly,
01:07:32as part of the care team,
01:07:34be invited along to those meetings
01:07:36to be part of the discussion,
01:07:38but they're very valuable.
01:07:40Part of
01:07:40our team. On that same line,
01:07:43Trish so one of our palliative Care Fellows.
01:07:47Wonders if we can take that too far.
01:07:49He points out that to assist with the
01:07:51two way discussion between the treatment
01:07:53team and the patients caregivers,
01:07:54we there might be either of who
01:07:56might be experiencing moral distress.
01:07:58Do you see a benefit?
01:07:59Bring in a third party such as ethics,
01:08:01social work, chaplaincy,
01:08:02or palliative care?
01:08:03Or does it become too many
01:08:06cooks in the kitchen?
01:08:08Is it possible we could complicate
01:08:09things and do more harm than
01:08:11good by having too many people
01:08:13involved in that conversation?
01:08:15Am I think having a broad care team
01:08:18really helps us to understand the needs
01:08:20in the perspective of the family.
01:08:23I think I think there's two
01:08:25different components to that.
01:08:27One is about the different emotions
01:08:29that are in the room that needs to
01:08:31be recognized and one is about how
01:08:34those decisions are being made.
01:08:36I think reality is pastoral
01:08:38care workers will be.
01:08:39They can provide us amazing insights
01:08:41into how the family is going.
01:08:43What are the barriers for them about
01:08:46potentially redirecting the goals of care?
01:08:48They can provide us with a lot of
01:08:50insights that we can certainly
01:08:51take into our conversations with
01:08:53families when engaging in shared
01:08:55decision making with families,
01:08:57but they're not necessarily involved in
01:08:59the conversation in sense of I guess,
01:09:01having control over the plans
01:09:03that are being made, I think.
01:09:05The question also alluded to the
01:09:07possibility of having involvement
01:09:09of ethics team.
01:09:10I think we've got a bit of a different
01:09:13structure here in Australia than
01:09:15what many of your institutions
01:09:17in the United States has.
01:09:19So currently the way out ethics team
01:09:22our clinical Ethics Response Group
01:09:24Works is that it's primarily set up
01:09:26for the benefit of the clinicians
01:09:29and for the hospital staff from
01:09:31everyone ranging from your attendings
01:09:33through to your administration staff.
01:09:35When the ethical concerns raised.
01:09:37Rather than being a voice for the parents,
01:09:39so there will be some situations where
01:09:41they will meet for with the parents
01:09:43to try and create a better understanding,
01:09:46but it's it's not the norm most of
01:09:48the time and ethics consultation for
01:09:50us will actually be the treating
01:09:53team going to the ethics team and
01:09:55seeking some support.
01:09:56Either in trying to work out the
01:09:58moral judgments and to work out
01:10:00whether it's ethically permissible,
01:10:01or perhaps sometimes it may be
01:10:03a situation where the team are
01:10:04actually all hands up in the air.
01:10:06Saying these family are really
01:10:08forcing our backs against the wall.
01:10:09We feel like we're going to have to
01:10:12provide treatment that we don't want,
01:10:13and the team are actually looking
01:10:15for support from the hospital to
01:10:17say we've got your backs.
01:10:18We will support you if this goes
01:10:20to the media type thing.
01:10:22So it's a little bit of a
01:10:24different structure than I think.
01:10:26What you've got in the United States.
01:10:28They are not in a mediator role for,
01:10:31say,
01:10:31between the family and the treating team,
01:10:33so they're not really a cook in the mix.
01:10:36In that sense,
01:10:37they're very much providing a opinion
01:10:39or perspective or a recommendation.
01:10:41But I shouldn't say an opinion per site.
01:10:45Recommendation rather than an
01:10:47obligation for the trading team
01:10:48to take that view on board.
01:10:50So even if the ethics team said actually,
01:10:53I don't think it's ethically permissible.
01:10:54The trading team still have
01:10:56the right to override that,
01:10:57particularly if new information
01:10:59comes available.
01:11:00And
01:11:00say the same as bad aspect
01:11:02of it is the same here,
01:11:04which is I believe most ethics committees
01:11:06United States if not all night states.
01:11:08Hospitals serves in an advisory capacity
01:11:10rather than the decision-making group.
01:11:11The ethics committees are always just
01:11:13serving in an advisory capacity here.
01:11:15But one difference might be
01:11:16that it certainly at Yale,
01:11:18and I think in general United States we see
01:11:20it more as a resource to everyone involved.
01:11:23It sounds like in Australia they are
01:11:25more of a resource specifically for
01:11:26the clinical team to help answer
01:11:28difficult questions most commonly.
01:11:30We end up being the resource for
01:11:32the clinical team who's struggling
01:11:34with a difficult question, but.
01:11:36But certainly sometimes the resource of the
01:11:38family and always available to the family.
01:11:40Once there is a conflict,
01:11:41for example,
01:11:42between the between the clinicians
01:11:43and the family about how to move
01:11:46forward or what's acceptable,
01:11:47treatment in what is it that certainly
01:11:49our pediatric ethics mean?
01:11:50I believe,
01:11:51are adults as well would be low
01:11:53to give an opinion on what should
01:11:55be done until they've given both
01:11:57sides a chance to be heard and
01:11:59to have their POV considered.
01:12:01I'm going to read a question so you not OK,
01:12:05so now we're going to little bit more
01:12:07complex in generic and so you can answer
01:12:10this to the level that you feel you can,
01:12:13but it's an interesting
01:12:14question and it reads as such.
01:12:16Thank you very much for your presentation
01:12:18that touched on many aspects of moral
01:12:20distress and patient in clinical care
01:12:22during both overt and covert distress.
01:12:24There's a lot of literature,
01:12:26but the philosophy of caring on how
01:12:28do you decide to focus on in quotes,
01:12:31compassionate care?
01:12:31Rather than generic here and it says thank
01:12:35you very much for your pragmatic examples,
01:12:38says Reverend Terry.
01:12:40A so how do you decide to
01:12:42focus on compassionate?
01:12:43That's a pretty complex question.
01:12:44For a an ethicist or for a clinician,
01:12:46so I'm not sure how much
01:12:48you can dive into this,
01:12:49but if you have thoughts on the question,
01:12:51we'd love to hear it.
01:12:54And I guess I would also
01:12:56be interested to know.
01:12:58Exactly what they're meaning by the
01:13:00difference between compassionate care
01:13:02versus our clinical care as well,
01:13:04in the sense that I would hope that
01:13:07actually providing compassionate
01:13:08care is is a really important part
01:13:10of our everyday clinical care.
01:13:12I would hope that we're actually
01:13:15not separating out the two too much.
01:13:18You know, in everyday practice,
01:13:20no matter what level of treatment care
01:13:22web providing were always wanting to
01:13:25ensure the comfort of our patients
01:13:27and ensure that we're providing
01:13:29a family centered model of care.
01:13:31Where we?
01:13:32Trying to connect with the families and
01:13:34care for their overall general well being.
01:13:37In addition to the child that's
01:13:40in front of us.
01:13:41So I think we consider those two concepts
01:13:44quite interlinked and part of each other.
01:13:47I wonder if the component of
01:13:49compassionate care that's being
01:13:51referred to is more around.
01:13:53With it's kind of a language,
01:13:54thinking more in terms of palate if care.
01:13:57I think that maybe I think
01:13:58I don't want to speak for the question
01:14:00or so you can certainly add to
01:14:02the question here and I'll see it,
01:14:05but I think I mean the way I read it
01:14:07was the question that was compassionate.
01:14:09Care is as as a raise tends to be used here.
01:14:12When we say we are no longer going
01:14:14to try and cure this patient,
01:14:16we're going to offer compassionate care.
01:14:18Of course, your point is very
01:14:20well taken down to press that.
01:14:21We hope we can we.
01:14:23Provide compassionate care to
01:14:24everybody inside our hospital.
01:14:25We don't want to separate that offer.
01:14:27Everything else we do,
01:14:28but sometimes the phrase is used to mean
01:14:30we're going to try and cure this patient.
01:14:32We're going to try and get this
01:14:34patient well and go home well,
01:14:36but rather we're going to provide
01:14:37compassionate care which speaks more.
01:14:39I think you're right to the other term.
01:14:41This commonly uses comfort
01:14:42measures only or comfort care.
01:14:43Yeah, which is more the
01:14:45language that we tend to use?
01:14:46Any are in practice is changing the
01:14:48goals of care towards providing
01:14:50comfort care that we never giving
01:14:51up on the care of the child?
01:14:53But we're always attending to their
01:14:55needs and ensuring the quality
01:14:57of life in whatever length of
01:14:59life that they're going to have.
01:15:01So if the questions around how the
01:15:03How do we decide between choosing
01:15:05compassionate care versus ongoing
01:15:07life sustaining interventions,
01:15:09is that the question?
01:15:11Um? I think that's the question, yes?
01:15:16Yeah, so, as you alluded to,
01:15:20document period.
01:15:21It's quite a complex question
01:15:25that again tries to think about.
01:15:29What the outcomes are going to be
01:15:31for the patient in front of us and
01:15:33engaging in a shared conversation
01:15:35with their families about?
01:15:36What it is that they think is?
01:15:40What their hopes and dreams
01:15:41are for their child?
01:15:43What's realistic in terms of what we
01:15:45can achieve from a medical perspective.
01:15:48Now there will be some situations
01:15:50where irrespective of what we can do,
01:15:52the child will die.
01:15:53And so we need to have a discussion
01:15:56with the family about what it
01:15:58is that we can actually achieve
01:16:00and how we can actually provide
01:16:03comfort during those stages.
01:16:04And sometimes,
01:16:04depending on how much I guess
01:16:06stability we have with the patient,
01:16:08we can have conversations with the
01:16:10family about how much time we think
01:16:12that we can have and what can be
01:16:15achieved in that time in terms of
01:16:17creating memories with the family,
01:16:19thinking about what things
01:16:20are important to them.
01:16:21Some families,
01:16:22do you want to try and get home for
01:16:24a redirection of care or palliation?
01:16:26Compassionate care other families may it.
01:16:29Once life sustaining measures redirected
01:16:31in our garden in our hospital.
01:16:34So it partly depends on the
01:16:36clinical situation of the child.
01:16:38I think the more challenging question
01:16:41is cases where we're concerned that
01:16:43the child will survive but may have
01:16:46a significant level of disability.
01:16:49And that's a very subjective question
01:16:51and requires a lot of kind of time in
01:16:55conversation with the family about.
01:16:57What outcomes there are likely to be?
01:17:00What are important things for them and
01:17:03what supports will be in the place?
01:17:06That the hospital can provide
01:17:08irrespective of their choice to
01:17:10support them in their decision
01:17:12making and ensure that the family
01:17:14don't feel alone or burdened in
01:17:16that the decision making,
01:17:17but rather know that we're working
01:17:19there with them to try and do the
01:17:22right thing by them by their baby.
01:17:24So it's giving you a very vague answer.
01:17:27Their mark,
01:17:27'cause I'm not entirely sure what the
01:17:30question was, sorry.
01:17:31I think it is fine.
01:17:32I think that that's that's a.
01:17:34That's a course unto itself exactly
01:17:36how those decisions are made,
01:17:37and we want to push it to
01:17:39your take on it was helpful.
01:17:41I have a question from one of our
01:17:44Unitology Fellows who said that
01:17:45who asks if I heard correctly you
01:17:47mentioned in your work that there
01:17:49was a tendency toward moral distress
01:17:51when the family was of a different
01:17:53socioeconomic status in light of
01:17:55ongoing conversations in the US
01:17:56about systemic racism in equities.
01:17:58Did your work reveal in each
01:18:00friends and moral distress?
01:18:01When families and medical
01:18:03teams were racially,
01:18:04racially or ethnically and Discordant.
01:18:07How do you think we as a field can
01:18:09consciously address these differing
01:18:11responses to family decisions?
01:18:14Yeah, so I should specify that.
01:18:16I think a lot of those cases that
01:18:19were referred to in terms of poor
01:18:22socioeconomic backgrounds were not
01:18:24necessarily driven by racial or
01:18:26ethnic disparities in those cases,
01:18:28but were more socioeconomic disadvantage
01:18:30in terms of poor employment.
01:18:33Perhaps history of drug use?
01:18:35So a lot of them went based on race itself,
01:18:38but on the unfortunate circumstances
01:18:40that that family found themselves in.
01:18:43Some of them were value judgments
01:18:45about whether a family potentially
01:18:46had the capacity to care for a child,
01:18:49which may be a very important
01:18:51interesting consideration,
01:18:52and thinking about the interests
01:18:54of the child there were.
01:18:56And there was one baby where there
01:18:59was consideration about whether
01:19:00the family would have the capacity
01:19:02to take the child home,
01:19:03and therefore if this child became
01:19:05under the care of the state
01:19:07or went up for foster care.
01:19:09Whether that would be a worse
01:19:11outcome for the child being in the
01:19:13foster care system where we know
01:19:15that they struggled to deal with
01:19:17very complex medical conditions.
01:19:19Then if there was re direction
01:19:21of care in that case,
01:19:23so the situations were very variable
01:19:25and were less about racial and ethnic
01:19:28disparities in these particular cases.
01:19:32Thank you, here's an interesting question.
01:19:36Doctor Hughes does it happen that
01:19:38caregivers or experiencing moral
01:19:40distress are disturbed by what they
01:19:42perceive as excessive care that
01:19:44society cannot afford, rather than
01:19:46the patient is actually suffering.
01:19:48What about regarding patients whose
01:19:51care is perceived as futile even if
01:19:54the patient is deeply unresponsive and
01:19:56is not likely to be actually suffered?
01:19:59But kind of two questions.
01:20:00One is is do you think sometimes
01:20:02people experience moral distress
01:20:03not because of patients suffering,
01:20:05but rather because of the incredible
01:20:07expense and the second relates to?
01:20:08What about patients who can't actually?
01:20:10As far as we know,
01:20:11be experiencing suffering.
01:20:13Yeah, so that there are two
01:20:16very important questions.
01:20:18And I guess from my own
01:20:20experience within our own unit,
01:20:21then I think the system in
01:20:23Australia is a little bit different
01:20:25to that in the United States.
01:20:27So resource allocation.
01:20:29Or particularly the question
01:20:31around resource use actually
01:20:33tends to come up a lot less.
01:20:35I think here in Australia,
01:20:36compared to what it does in United States,
01:20:39particularly in the national practice.
01:20:41It's uncommon for us to have a child
01:20:43to clean my surgical unit that is
01:20:46affectively pain is well controlled and
01:20:48then perceived not to be suffering,
01:20:51but they're using up a bed or using up life,
01:20:54sustaining interventions.
01:20:55So the majority of my experience and
01:20:58the experience of our units and.
01:21:00The units the other unit was that it
01:21:02was single from the Perinatal Center.
01:21:04The cases that were causing moral distress,
01:21:07where questions where they were
01:21:08concerned that the patient was
01:21:10suffering or at harm rather than being
01:21:12questions of of resource allocation.
01:21:15The resource allocation
01:21:16or distributive justice?
01:21:17It's a really important question for society.
01:21:19I think their questions that need
01:21:21to be asked and addressed away from
01:21:23the actual care of a particular
01:21:25patient in front of you.
01:21:27It's something that we experience
01:21:29less of in Australia than what
01:21:31you do in the United States.
01:21:32Certainly we hear a lot more case
01:21:34reports coming in from the states
01:21:36of patients who are effectively
01:21:38comatoast and receiving long-term care,
01:21:40whereas I think partly because we
01:21:42don't tend to have a lot of kind of.
01:21:45Long-term ventilation units in Australia
01:21:46they would remain within the hospital system.
01:21:49We don't tend to see as many of those cases.
01:21:52Here is what you do in the United States.
01:21:56I don't know doctor material.
01:21:58If you're able to provide any insight
01:22:00into the situation in the United
01:22:02States in terms of how those situations
01:22:05have eventually atede in terms of
01:22:07scenarios where there have been long term.
01:22:10Care provision provided and some of the
01:22:12I guess cultural expectations around that.
01:22:15I think in Australia I suspect my
01:22:17general impression in Australia is
01:22:19that most people in society would
01:22:21tend to think that that's not a good
01:22:24quality of life and would tend to
01:22:26be more on the side of re directing
01:22:28care rather than expecting to see
01:22:31their loved one in a long term.
01:22:33State of the coma or something,
01:22:35even though they're not experiencing
01:22:37pain per say.
01:22:38Yeah, I think I can safely say that in
01:22:41the United States and certainly in the
01:22:43in the in the Fair State of Connecticut.
01:22:46It's it's a bigger issue.
01:22:47It appears to be more common than
01:22:49than what you face in Australia,
01:22:51which is to say there are many families who
01:22:53feel that and often for religious reasons,
01:22:55but not always for religious reasons.
01:22:57We tend to feel that know where there's life.
01:23:00There's hope when you must keep going,
01:23:02and so there are patients.
01:23:03There are patients in our newborn
01:23:05intensive period who were on ventilator
01:23:06for months who were felt to have a very
01:23:09poor prognosis for even for survival's,
01:23:11family insists that we must keep
01:23:13trying and so that this is not a,
01:23:15you know in absolute numbers
01:23:16what's interesting about it is.
01:23:18Is about to be honest with you.
01:23:20I tell you I'm not sure about absolute
01:23:22numbers because of course these cases
01:23:24loom large in our in our consciousness
01:23:26because they're right there in
01:23:28front of us all day and all night,
01:23:30every day and every night.
01:23:32So it could be.
01:23:33It might be 2 patients like
01:23:35this in my 68 bed ICU,
01:23:37but yet they are very much
01:23:39subject of conversation,
01:23:40a subject of moral distress,
01:23:42a subject of anxiety among the staff
01:23:44and sadness amongst everyone involved,
01:23:45even though they represent a tiny percentage
01:23:48of the patients who are on ventilators.
01:23:50Because there could be out
01:23:51for months at a time,
01:23:53and that's that's not unheard of,
01:23:54and that's that's also carries
01:23:56through into the adult population that
01:23:58there are patients were kept alive
01:23:59in long term facilities to be sure,
01:24:01but also sometimes it's complex and
01:24:03sources trying to move a patient
01:24:05to a long term facility.
01:24:06Not always an easy thing to do,
01:24:08so it is, I think,
01:24:09a larger issue here based on
01:24:11what you're telling me.
01:24:12Trish then.
01:24:13Then perhaps then you folks in Australia.
01:24:15In large part, I think,
01:24:16do with the culture and
01:24:18a sense that you know.
01:24:20This is a sense among many
01:24:21that where there's life,
01:24:23one must keep going that there's
01:24:24an obligation and we could
01:24:26get into the psychology this.
01:24:28And someday maybe,
01:24:28you and I'll talk about this at
01:24:31great length with the sense of guilt
01:24:33that sometimes the family might
01:24:34feel if they agreed to stop the
01:24:37sense of frustration that physicians
01:24:38feel when they say allow stop.
01:24:40If you'll let me stop,
01:24:41I think I should stop,
01:24:43but the physicians don't want
01:24:45to go so far as to say, listen,
01:24:47we're stopping, there's no conversation.
01:24:49That's a difficult thing to say
01:24:50in the United States.
01:24:52If I say we want to stop,
01:24:54so let's talk about it.
01:24:55There are many families who
01:24:56will say you just keep going.
01:24:58And this may be a cultural thing,
01:25:01but it's certainly very,
01:25:02very prevalent
01:25:03in the US. And I mean, I don't.
01:25:06I don't want to kind of imply that we don't
01:25:08have patients that are on ventilation
01:25:10longer than what we would desire,
01:25:12but I think our patients are more likely
01:25:15to fall into groups that eventually we
01:25:17will get them off the ventilator. And yes,
01:25:19they may go home with a poor prognosis,
01:25:22but it's very unusual for us to
01:25:24have a baby in our unit for longer
01:25:26than six months, for example,
01:25:28despite being a surgical unit,
01:25:29it's just very uncommon.
01:25:31Doctor Prentice, this has been extremely
01:25:34informative and enlightening and I
01:25:35thank you so much for taking the time.
01:25:37I thank everybody for joining
01:25:39us for staying with us.
01:25:40This has been a terrific conversation
01:25:42and sometime in the future you will
01:25:45get to meet Doctor Prentice in real
01:25:47life when we have her come back and
01:25:49lecture to us again and then join and
01:25:51have a conversation with us again.
01:25:53Thank you very much.
01:25:55Doctor Prentice have a beautiful
01:25:56day in Australia today.
01:25:58Thank you well,
01:25:58we'll see in a couple weeks.