Rhetoric and Role of Suffering in Pediatric Decision-Making

December 08, 2022

Information

November 30, 2022

Erica Salter, PhD

Associate Professor & PhD Program Director of Health Care Ethics

Associate Professor of Pediatrics

Center for Health Care Ethics

Saint Louis University

ID9252

To CiteDCA Citation Guide

00:00All right, my friends,
00:02I'll welcome to the Yale Pediatric Ethics
00:05Program Evening Ethics Seminar series,
00:07which which is Co hosted with the
00:09program for Biomedical Ethics here
00:11at the Yale School of Medicine.
00:12We have friends joining us from
00:15around here and from far away as well.
00:17I'm very very excited about tonight's
00:19program as I mentioned to you all
00:21on the mailing some time ago I was
00:23out at Saint Louis for a gathering
00:25of pediatric ethicists from around
00:27the country and and hurting all
00:29of these cats was was an ethicist
00:32named Doctor Erica Salter.
00:34And I was very impressed by her
00:36and and was and trying to get her
00:38here as quickly as I could and
00:40so if tonight we have Erica here
00:42on to lead us in in conversation.
00:46I want to introduce Doctor Saul to you.
00:48She is an associate professor of
00:49health care ethics and Pediatrics
00:51at Saint Linus universities on
00:53Negi Center for Healthcare Ethics
00:55and Department of Pediatrics.
00:56She just she directs the center's PhD
00:58program in Healthcare Ethics and serves
01:00as their vice chair of the Cardinal
01:02Glennon Ethics Committee and the Co Chair.
01:05She's also the Co chair of the
01:07Ethics Special Interest group for
01:09the academic pediatric associations.
01:11Eric is widely published in the areas of
01:14pediatric bioethics and clinical ethics.
01:16Consultations on topics ranging
01:18from the best interest standard to
01:20the mature minor doctrine models
01:22of pediatric decision making,
01:23parental role and decision making,
01:26and decision making for children
01:28with disabilities.
01:29Dr Salter has a BA in philosophy
01:32and cognitive science from Rice
01:34University and a PhD in healthcare
01:37ethics from Saint Louis University.
01:39The way it's gonna go tonight is I'm going
01:42to turn this over to Erica in just a moment.
01:44She's going to speak to us for 45 minutes,
01:47plus or minus.
01:48After that,
01:48we're going to have a conversation
01:50with the audience and I'm going to
01:53ask you to submit your questions
01:54via Q&amp;A for the Q&amp;A portion,
01:56and then I'll read them to Doctor Salter
02:00and we will wrap up no later than 6:30.
02:03So if it's 625,
02:04as I've apologized in the past and
02:06we don't get to your question,
02:08I I do apologize.
02:09We'll get to as many as we can and and
02:12I look forward to a great discussion.
02:15And without any further ado,
02:16I want to introduce Doctor Erica Salter.
02:21Take it away,
02:22Erica.
02:22Thank you so much, Mark,
02:23for that lovely introduction.
02:24Yes, it's been so fun to get to
02:26know you and it's such a pleasure
02:28to be with you virtually tonight.
02:30I hear the weather isn't
02:31so great in New Haven.
02:32Here in Saint Louis,
02:34it's sunny and clear.
02:35But I think the weather there is
02:37actually a little more indicative of
02:39the topic that we're going to discuss,
02:40discuss together on this afternoon.
02:43So let me just pull my slides
02:45into the right view here.
02:54OK. All right. So the project that I'm
02:58going to share with you this evening was
03:01really motivated out of my work as a
03:03clinical ethicist at, as Mark mentioned,
03:05Cardinal Glennon Children's Hospital
03:06Hospital here in Saint Louis,
03:08which where where I'm surrounded by
03:11very competent and excellent caregivers,
03:13pediatric caregivers that are trying to help
03:16families through many difficult decisions.
03:18But I was noticing frequently that for
03:22especially with very sick children,
03:24someone on the treatment team would
03:26sometimes mention the fact that the child.
03:28Was suffering.
03:29This was a claim that would be
03:31made sort of in passing sometimes,
03:32sometimes a part of as a part of decisions
03:35or conversations with family members.
03:37And on the face of it,
03:38this sort of claim seems very appropriate
03:40to bring up as a part of decision making.
03:43If a child is suffering,
03:44perhaps this ought to compel us
03:46to do something very specific,
03:47make a tight, certain type of decision,
03:49maybe even a dramatic decision.
03:51Perhaps it ought to serve a special
03:53moral function in decision making,
03:55but perhaps not,
03:56because of course in most of these cases.
03:59The child is either too young or
04:00too ill to actually confirm or deny
04:02the fact that they were suffering.
04:04So there being second hand claims were
04:07being made about the experience of the child.
04:09So this dilemma what to do with second
04:12hand claims of patient suffering invited
04:14me to ask a few questions and those
04:16questions will kind of serve as the
04:18main sections of my presentation today.
04:20I hope to offer a few sort of
04:23preliminary answers and also some
04:25practical suggestions for caregivers
04:26in positions of helping families.
04:29It is through decision making, process fees.
04:33So my central goals for our time
04:35together this evening will be first,
04:37to explore what we might mean when
04:39we claim that a child is suffering.
04:41So what does that term mean?
04:42How would how do we intend to use it?
04:45Second,
04:45to describe how appeals to suffering might
04:48sometimes enter into treatment decisions,
04:51sometimes maybe appropriately and
04:53perhaps even inappropriately.
04:54And then finally to offer some
04:57practical suggestions for how to
04:59respond to these second hand claims
05:01of patient suffering in Pediatrics.
05:03I do want to note that while this
05:05project is primarily focused on claims
05:07of patient suffering and Pediatrics,
05:08I do actually believe that many of the
05:10conclusions that ioffer today for you
05:12could be applied to the adult context,
05:14especially where a surrogate decision
05:16maker is making decisions on
05:17behalf of an incapacitated patient.
05:19So if any of you work with grown-ups,
05:21this discussion I hope is useful
05:23to you as well.
05:26So we're actually going to start with a
05:28little bit of audience participation.
05:30I don't know if you were prepared for that.
05:32If I hope that you'll indulge me
05:35with just a quick question for you.
05:38What I'm going to ask that you do is
05:41in the Q&amp;A feature of the zoom meeting,
05:44if you are willing to do this,
05:47just briefly give a definition of suffering,
05:49just whatever comes to mind to you as
05:52I introduce this concept this term.
05:54It does not have to be comprehensive.
05:56It does not have to be deeply.
05:57Theoretical just whatever comes
05:59to mind is is great.
06:00And if you prefer,
06:02you could also maybe just briefly describe
06:04an experience that you think would cause
06:06suffering or incite some suffering,
06:08or that has caused some suffering
06:09in your life.
06:10So while you're doing that
06:11and thinking about that,
06:13I do actually want to talk
06:15through a couple paintings.
06:17These are maybe some more evocative visual
06:19depictions of the experience of suffering.
06:22This is just kind of a reminder
06:24that suffering is a deeply personal
06:26experience and sometimes can be
06:27very difficult to communicate.
06:29Using words, even though that's what
06:31I'm asking you to do at the moment,
06:33what I did is I selected 3 artistic
06:36depictions of suffering here.
06:38Two are actually about children
06:40and one is actually by a child.
06:42On the far left is an oil painting
06:45by Picasso entitled Weeping Woman,
06:47which depicts a mother grieving
06:49the death of her child.
06:50In the middle is a charcoal drawing from
06:52a 13 year old female Holocaust victim,
06:55Helga Basova, who drew hundreds of
06:57drawings actually while at a constant.
06:59Concentration camp outside of Prague.
07:01Her father told her to draw what she saw,
07:04and that's what she did.
07:05I believe this drawing was her
07:08last drawing before her execution.
07:10And finally,
07:11Edvard Munch,
07:12who we all know as the painter of the Scream,
07:15this is another one of his more famous
07:18paintings called the Sick Child,
07:19and this draws upon his memory of
07:21his sister's death from tuberculosis
07:23when he was a child.
07:25So I'll give you just a moment.
07:26I see already a few,
07:27maybe a few answers in the Q&amp;A, but.
07:29I'd invite a few more.
07:31Umm,
07:31and then I'll share some of these
07:33answers and then keep moving.
07:40All right.
07:41I'm seeing physical or emotional pain,
07:43discomfort, feelings of torture,
07:45excellence, poor quality of life pain,
07:48inability to do things that bring you joy.
07:50It's a great answer.
07:52To me, suffering feels heavy in my body,
07:54mind, and spirit.
07:55It's a state of extreme disease.
07:58I love that.
07:59And emotional and physical pain.
08:00Beautiful answer the state
08:02of prolonged discomfort,
08:04either physical or psychological
08:05anguish felt deeply in my body,
08:08spirit, or mind.
08:09Most likely all three.
08:11Suffering is an experience of a
08:13degree of physical, emotional,
08:14or existential pain or discomfort.
08:17Physical pain.
08:17Someone shares the caregiver for my spouse
08:20who was suffering with terminal cancer,
08:22which was difficult to manage or control.
08:23So an experience that caused much suffering,
08:26longing for a different state, situation,
08:28or set of circumstances that alleviate the
08:32experience of physical or emotional pain.
08:35Beautiful answers.
08:35Thank you so much for indulging me in that.
08:38These are just lovely and I actually
08:39think they serve as a really nice
08:41backdrop for our discussion today
08:42and I might even be referring
08:44back to some of these as we
08:46proceed through this presentation.
08:48All right,
08:49so I'm actually going to jump in
08:51to this topic by using a case.
08:53This is a case from a very popular
08:55and actually pretty widely referenced
08:56pediatric ethics textbook.
08:57It's one that I use frequently
08:59in my undergraduate class,
09:00and I think it represents quite
09:02well the types of situations
09:03that motivated my project.
09:04All right, so the case is Annie is suffering.
09:07Annie is born at full term
09:09with good Apgar scores,
09:10but weighs only 23150 grams.
09:12On physical exam,
09:13she is alert but has somewhat low tone.
09:15She has an abnormal facial features,
09:17short sternum and overriding digits.
09:19After failure to pass an Ng tube ATE,
09:22fistula is diagnosed.
09:23Chromosome studies confirmed
09:24trisomy 18 and an echocardiogram
09:26shows a moderate VSD and moderate
09:29pulmonary valvular dysplasia.
09:31The neonatologist and surgeon meet Annie's
09:33parents to discuss treatment options.
09:35They explained that trisomy
09:3618 is a lethal condition.
09:38And that most children die within
09:40the first few weeks to months.
09:41The team does not recommend surgery,
09:44explaining that surgery is not in the
09:46child's best interest and will result in,
09:47quote,
09:48unnecessary suffering for Annie.
09:50They offer the services of the
09:52neonatal palliative care team and
09:53reassure Annie's parents that they can
09:55provide comfort for Annie by keeping
09:57an IV in place for hydration and pain relief.
09:59All right, So what we have here is an infant
10:02with a serious and unexpected diagnosis,
10:04and her parents are being asked
10:05to make a profoundly significant,
10:07indeed,
10:07a life and death decision.
10:10Her treatment team has an opinion
10:11about what ought to be done.
10:13And as a part of this conversation,
10:14they mentioned the fact that aggressive
10:17life extending treatment might be the cause
10:20of unnecessary suffering for their daughter.
10:23And importantly,
10:24Annie,
10:24who's experienced about which
10:26we are hypothesizing here,
10:28cannot actually tell us anything about her.
10:30Advanced directly,
10:31her experience is somewhat opaque to us.
10:35So one of my earlier projects prior
10:37to to writing this paper actually
10:39was interested in looking at whether
10:41this this case that I presented
10:43you here is is a paradigmatic case,
10:46whether it actually does represent the
10:48wider clinical and bioethics literature
10:50when authors use the term suffering.
10:53So I I'm, I'm going to share the
10:55results of that study with you here.
10:57So my co-authors for this project were
10:59Annie Friedrich and Kirsten Dempsey.
11:01We were really interested to see how
11:04bioethicists and clinicians are using
11:05the term suffering in the literature,
11:07whether there's a consistent definition,
11:09if so, what is that definition?
11:11And most importantly,
11:12how is the concept utilized in
11:14the context of decision making.
11:16So what we did is conduct a
11:18preliminary content analysis looking
11:19at the past 10 years of articles
11:21across eight different journals,
11:23both clinical pediatric journals
11:24and bioethics journals,
11:26looking for the term suffering
11:28used as a noun specifically
11:30within the Pediatrics context.
11:32We found 651 occurrences of the term and we
11:35coded them according to who was suffering,
11:38the cause of that suffering,
11:40the nature of the experience
11:42described with the term.
11:44And the influence that that
11:46had on decision making.
11:47So here's what we found this these tables
11:49sort of summarized the results here.
11:50So most often the party described
11:52as suffering was the patient.
11:54This is perhaps not very surprising,
11:56although I do want to importantly
11:58note that suffering is also described
12:00as an experience of parents.
12:02And we saw that in some of the
12:04paintings that we just viewed the
12:06cause of the patient suffering which
12:08was coded either as a result of
12:10treatment or intervention as a result
12:12of the patients underlying condition.
12:14Or there was ambiguity with
12:17regard to the cause.
12:19Authors were overwhelmingly unclear
12:21about the cause of suffering and
12:23these occurrences of the term
12:25the the claim was typically made
12:27without any clear attribution.
12:29When we looked at whether authors
12:30specified in any way what they
12:32meant by the term suffering,
12:33was there a definition or a characterization?
12:35After offered 75% of occurrences of
12:38the term were coded as ambiguous,
12:41so very infrequently did authors describe
12:44what they meant when they used the term.
12:47Of the remaining 166 occurrences that
12:49were a little more explicit about their
12:52understanding of the term suffering,
12:5420% use the term to refer to physical
12:56symptoms of pain and discomfort.
13:0068% referred to a negative
13:03psychological, emotional,
13:04or existential experience distinct from,
13:07although perhaps related to pain.
13:09And then 12% use the term to refer
13:11to a combination of both physical
13:13pain and existential distress.
13:15You know, I actually think
13:17this maps on quite well to the
13:19definitions you've provided tonight.
13:21There were lots of mentions of sort of
13:23a combination of sites of suffering,
13:25not just physical but also emotional
13:28and even spiritual. I think we.
13:29And I saw the terms body,
13:30mind and spirit multiple times.
13:33It does seem like when authors in
13:35bioethics and clinical journals utilize
13:37the term suffering and they offer some
13:39sort of characterization very similar
13:40to the types of characterizations
13:42you yourselves are offering.
13:44Another really important
13:46note about these data,
13:4852% of occurrences of the term
13:49suffering were used as a part of
13:51a specific medical decision and
13:53claims of patient suffering and
13:55Pediatrics were three times as likely
13:57to support a life ending decision
13:59as a life extending decision.
14:02So 32% versus 10% here.
14:05So the the trends that I'm describing
14:07with this study and how the term
14:09suffering is typically deployed in
14:11the clinical and bioethics literature
14:12does actually map on quite well
14:14to the case that I presented.
14:16The concern is that Annie the
14:18patient is suffering.
14:19The cause of her suffering
14:21is is mostly ambiguous.
14:23We we could surmise that the
14:25practitioners are attributing her
14:27suffering to the surgery or perhaps
14:29just the sort of state of bear
14:31existence that would result from
14:33the surgery and it's being deployed.
14:35In this case by clinicians,
14:37in a very specific way,
14:38it's being deployed to influence
14:40a treatment decision,
14:41specifically a life ending
14:43treatment decision.
14:46OK, so let's move forward and ask,
14:48you know, one of our first sort of
14:50main framing questions for today.
14:51What kind of phenomenon is suffering?
14:54What is its nature? What's it?
14:55What is its essence?
14:56Simply, just what is it?
14:58In the context of medicine,
15:00the primary definition offered
15:02is that by Eric Cassell,
15:04who asserts he's a physician and ethicist,
15:07and he's written widely on this topic.
15:09Again, if you've encountered this term,
15:11any philosophical exploration
15:11of this term in medicine,
15:13it's likely through the work of Eric Cassell.
15:16He essentially asserts that
15:18suffering requires 2 necessary
15:19and sufficient conditions.
15:21So first, suffering is a subjective,
15:24phenomenological experience.
15:24Thus there is no suffering
15:27unless a specific person.
15:29Experiences it.
15:30And 2nd, the nature of that experience,
15:33first of suffering for Cassell,
15:34is one of severe distress
15:36associated with events that threaten
15:39the intactness of the person.
15:41So there's sort of a
15:42narrative explanation here.
15:43It's evoking sort of a disruption in the
15:45person's life narrative in such a way
15:48that feels like severe distress and a threat,
15:50a threat to that person's
15:53identity and intactness.
15:55I just want to mention a couple important
15:57implications of a definition like this.
15:59These are implications that
16:00are troubling for some.
16:01I won't go into much detail here,
16:03but I do want to explore this
16:04definition just a little bit with you.
16:06I think it offers us some
16:09instructive insights.
16:10First,
16:10because suffering is a subjective experience,
16:13primary epistemic access,
16:15meaning who has access to
16:18knowledge about this experience,
16:20belongs only to the individual
16:22who is suffering.
16:23There really is no truly
16:26dependable objective assessment.
16:28Here's a good spot to mention that the
16:30work of actually a friend and fellow
16:32pediatric ethicist and physician.
16:33His name is Tyler Tate.
16:34He's also done work on the
16:36topic of pediatric suffering.
16:38He actually disagrees with Cassell
16:39on this point on the the subjective
16:42nature of suffering and head,
16:43and instead sort of is encouraging
16:45a more objective and teleological
16:47understanding of suffering.
16:49Very briefly,
16:50he thinks that suffering should be
16:52defined as the inverse of flourishing,
16:54something that could be dependably
16:57assessed by others.
16:58Second,
16:59an implication of Cassells definition,
17:01one he explores a little bit is the
17:03fact that pain and pain and suffering
17:05are actually distinct concepts.
17:06They're often Co occurring and interrelated,
17:09but again distinct.
17:11For example,
17:12just because you experience pain,
17:14a stubbed toe for instance,
17:16or perhaps even childbirth does
17:18not mean you experience suffering.
17:20Because suffering for Cassel
17:21requires that the pain,
17:23cause and experience of distress
17:25that threatens the narrative
17:27intactness of the person.
17:28So take the experience of
17:30childbirth for example.
17:31I would guess that most persons
17:33who labor and deliver a baby
17:34will admit to significant,
17:36perhaps even severe pain.
17:37I would raise my hand as an example of
17:40someone who did have that experience,
17:42but I think far fewer individuals
17:44would say that this experience
17:46was one of suffering,
17:47probably because the experience
17:49is often well integrated into a
17:51life narrative.
17:51For many, childbirth is a celebrated
17:54and joyous experience of new life,
17:57and similarly you might experience.
17:59Deep existential suffering.
18:00For example, the death of a loved one.
18:02Again, we called to mind the paintings of
18:04a mother grieving the death of her child,
18:07the brother grieving the death of his sister.
18:09But not experience any
18:11physical symptoms of pain.
18:13So again, the point here is that pain and
18:15suffering are not equivalent concepts.
18:17Finally, and this is an important point
18:20to make about cassell's definition.
18:22One major critique of the implication
18:25of his definition is that for him,
18:27certain people cannot suffer,
18:30in particular young children,
18:32infants, or those with profound
18:34developmental disabilities,
18:35because of their cognitive abilities,
18:38their their inability to interpret an event
18:40as threatening to their interactionists
18:42or understanding it as a a broken narrative.
18:46So for Cassell,
18:47baby Annie in our case,
18:49simply can't suffer.
18:50So a claim like that is just wrong.
18:53And it should not be a part
18:55of our decision making.
18:57He thinks that we would just be simply
18:59mistaken if we made a second hand claim
19:01about a patient like Annie suffering.
19:03Isn't that simple?
19:04Well, you know, I don't think so.
19:06I I don't think we have a lot of
19:08time to engage deeply in that
19:09sort of theoretical concept of
19:11suffering or definitions.
19:12And in fact,
19:13the major thrust of my argument
19:14today does not really rely on a
19:17particular definition of suffering.
19:18But I do think it's appropriate to offer
19:20you some preliminary claims that if
19:21you'd like to discuss more in the Q&amp;A,
19:23please feel free to do this.
19:24But I'm just going to very briefly
19:26describe to you what my priorities
19:28would be for a definition of suffering.
19:31Again we have Cassells definition of top.
19:34So my priorities for a definition
19:36are a little bit looser.
19:37Suffering is a negative subjective
19:39experience of significance.
19:41Note here that the words I'm using,
19:44it does require some sort of perhaps limited,
19:48but some sort of conscious experience
19:50and the ability to in some way
19:53understand events as negative.
19:54So I think this does include
19:56far more patients and that this
19:58experience does in fact go beyond
20:00the physical experience of pain.
20:02So these priorities I think
20:04largely do align with Cassel.
20:05Um,
20:06although one important departure that
20:07we're he would argue certain categories
20:09of people cannot suffer again for him.
20:12Infants,
20:12very young children,
20:14and those with profound developmental
20:16disabilities.
20:17I would like to leave a little
20:18more room for the possibility that
20:20these individuals can can suffer,
20:21because my definition is less
20:23specific about how negative
20:25experiences must be interpreted.
20:27I'd like to,
20:28you know,
20:29leave some room for the possibility
20:31that Annie is in fact suffering,
20:33even if she is unable to understand this.
20:35Event in a sort of more
20:37cognitive or intellectual way as
20:39a threat to her intactness.
20:41Why is this a priority for me?
20:43I'll just give you 3 really
20:45brief reasons before we
20:46move on. So epistemically, again,
20:47sort of in terms of what we were
20:50able to know, I believe it's wise
20:52to err on the side of believing
20:54that these populations can suffer,
20:56because I just think it's more
20:58dangerous to assume that they can't.
21:00You could look at the troubling but
21:02pretty wise, widespread and commonly
21:04accepted practice of unanesthetized
21:06surgery on infants for many decades.
21:09Anesthesia infants really wasn't
21:11common practice until the 1970s or 80s,
21:13because for a very long time
21:15we wrongly assumed that.
21:17Infants can't feel pain, and we turned out.
21:20Turns out we were wrong about that.
21:22The second reason is,
21:24I believe the empirical research is
21:26actually quite clear on this point,
21:28that caregivers, parents,
21:29clinicians, nurses, physicians,
21:31others of these populations,
21:33infants, young children,
21:35those with profound developmental
21:37disabilities consistently believe that
21:40they can and in fact sometimes do suffer.
21:42So that's this.
21:43It aligns with the most common
21:45scholarly usage of the term,
21:47as we explored in previous slides
21:49with that empirical study in the
21:52bioethics and Pediatrics communities.
21:54And finally,
21:55I think sort of the summary point
21:57about these priorities would be that a
22:00definition like this prioritizes the
22:02lived experience of the individual,
22:04but again not limiting the phenomenon
22:06only to those individuals with
22:08an intact sense of self.
22:10So this does imply though,
22:12which might be a problem,
22:13limited epistemic access to
22:15another suffering,
22:16which makes it particularly
22:17difficult as a phenomenon that
22:19we want to assess or assuage,
22:21especially in children.
22:22This,
22:23again as a reminder,
22:25does not stop caregivers from making
22:27claims about pediatric suffering,
22:29about the children that they're
22:31caring for experiencing suffering.
22:32And in many cases,
22:34these claims are not entirely ungrounded.
22:36Typically,
22:36they're based on assessments of physical
22:39symptoms and behaviors that are
22:41typically associated with pain and distress,
22:42things like air, hunger,
22:44agitation, crying,
22:46certain facial expressions,
22:48and sleeplessness.
22:49Again, as a reminder, however,
22:51while these may be signs of suffering,
22:53and in some cases may be.
22:54Very dependable or reliable
22:55signs of suffering.
22:57They can't necessarily be equated
22:59with the experience of suffering,
23:00and the frequency and intensity
23:02of these behaviors are not
23:04necessarily indicative of the
23:06intensity of actual suffering.
23:07And again,
23:08an absence of this these behaviors does not
23:11necessarily mean an absence of suffering.
23:13So that's what I do want to distinguish
23:15between pain and suffering.
23:16It seems reasonable to me to assume
23:18that an individuals with a limited
23:20conscious experience,
23:21again we might think here of neonates.
23:25Experience of suffering might
23:26overlap a little bit more, though,
23:28with the experience of pain,
23:30perhaps to a greater extent
23:32than in other populations.
23:34OK.
23:36So I have presented you a claim that
23:40children can and sometimes do suffer,
23:43but because of how we define suffering,
23:46or how I'm proposing that we understand
23:48the experience of suffering,
23:50we don't have great access to that suffering.
23:52It's very hard to know because
23:53we simply can't ask them.
23:55As a reminder,
23:56in our adult populations,
23:58if we're concerned about a patient suffering,
23:59we would just communicate with them
24:01verbally about that experience.
24:02What's distressing?
24:03What are you feeling?
24:05It would be much more.
24:06It's much easier to have access to that
24:09because of the ability to communicate.
24:11With this line, I just want to mention
24:14a couple ways in which suffering is
24:16already treated as a morally special
24:19concept by the Pediatrics community,
24:21but in different ways.
24:22So there's sort of opposing ways in which
24:24the concept of suffering is used here.
24:26So on the on the left,
24:27I'm summarizing what's known
24:28as the Groningen protocol,
24:30which is a medical protocol in the
24:33Netherlands which allows physicians
24:34to actively euthanize a seriously
24:37ill but medically stable newborn
24:39without fear of legal prosecution.
24:42The protocol here outlines several
24:44requirements that must be met for
24:46this practice to be justified,
24:48including one that hopeless and
24:50unbearable suffering must be
24:52present and to the diagnosis.
24:54Prognosis and suffering must be confirmed
24:56by at least one independent doctor.
24:59So we aren't actually told
25:01specifically what constitutes
25:02hopeless and unbearable suffering,
25:04nor are we really given tools for
25:07adequately assessing it in a newborn.
25:09But in this case it can actually
25:12justify active euthanasia.
25:13And in fact,
25:14it's not even just an assessment of current
25:16suffering that might justify a decision,
25:18but an assessment of possible
25:20or probable future suffering.
25:22A study reporting end of life decisions
25:25in Dutch Nick use in 92% of patients
25:27with quote poor prognosis decisions
25:29were made to end the child's life not
25:32actually based on current suffering,
25:34but on predictions of future suffering.
25:37As I'm sure you know,
25:38if you're if you're at all
25:39familiar with this protocol,
25:40it's been met with fairly
25:42widespread criticism.
25:43And I think at this point in the
25:45presentation you can suspect why that
25:46might be the case for many of the
25:48reasons that we've already discussed.
25:50Another example of legislation that
25:53specifically mentions factors like
25:55quality of life and suffering,
25:57although with the opposite impact,
25:59are the baby DOE regulations,
26:00which were passed in the US in the 1980s.
26:03I won't go into details about
26:05these regulations,
26:05but a central feature of this legislation
26:08is that it explicitly rejects subjective
26:11quality of life considerations,
26:13including claims of present or
26:15future suffering as a justification
26:17for withholding medical treatment.
26:20To disabled newborns.
26:21So again we see two examples here
26:23where the concept is being deployed
26:25either as a possible rationale or
26:28reason for a medical decision,
26:30or as an explicit exclusion as a
26:32criteria for a medical decision.
26:38OK, moving into slightly more practical
26:41spaces here, the question is,
26:44is suffering a morally special concept
26:46in terms of medical decision making?
26:49So, so far we've concluded that we probably
26:51ought to assume that the vast majority
26:54of our pediatric patients can suffer,
26:56that we don't have great epics
26:58epistemic access to this suffering.
26:59But again this does not stop caregivers
27:02from making claims about patient suffering.
27:04So knowing all these things is,
27:07does this suggest to us that suffering
27:09should somehow serve a special
27:11function in our in our decision making.
27:14So let's look at what decision
27:15making might typically look like.
27:16Here's this is a very simple graphic.
27:20Only made possible by my very rudimentary
27:22understanding of Google Slides and the
27:25features available in Google Slides,
27:26so I I acknowledge this is a
27:28very stripped down version here,
27:30but I'll walk you through what I think
27:32this graphic kind of describes about
27:34the medical decision making process.
27:37So when you consider whether which
27:39treatment option to pursue in medicine,
27:42you might first consider the benefits
27:44of a particular treatment option.
27:45And you can include all sorts
27:46of things on this list.
27:47What counts as a benefit.
27:48And of course we get we let allow
27:50parents very frequently to to define
27:52for themselves what counts as a
27:54benefit and those sort of are added
27:55up in the plus column, so to speak.
27:59Then we might subtract potential
28:01risks or burdens.
28:02So risks here are the possibilities
28:05for bad things to happen.
28:07Burdens are the things that we like side
28:09effects that we know will be burdensome.
28:11So we might, you know,
28:12subtract things like the chance of
28:14complication, the chance of death.
28:15And then we might again subtract
28:17things like pain, functional loss,
28:19again things like relational,
28:21emotional,
28:22or spiritual burdens if they're
28:24important to the patient or family.
28:26Again, as a reminder,
28:27value judgments do have to be made
28:29here about what constitutes benefit,
28:31what constitutes burden,
28:32and how much these different
28:34variables should quote, UN quote,
28:35weigh in a in a calculus.
28:37And obviously the possible suffering
28:39of the patient is relevant.
28:41I think typically we would think that
28:43suffering would come under risks or burdens,
28:45right?
28:47So we would maybe want to add to the
28:48list if if there's a possibility that
28:50this intervention could cause suffering,
28:52it it it should be subtracted
28:54alongside other risks.
28:56And if there's a possibility,
28:57or if we are fairly confident that
28:59there will be a side effect of some
29:01suffering with our intervention,
29:02we should probably include it under burdens.
29:06But my fear,
29:07and really the kind of claim that
29:10motivated much of this project,
29:12is that suffering actually tends to
29:15affect the process. In this way.
29:21So when the concept of suffering
29:23enters into the discussion,
29:24what can sometimes happen is
29:26that the rhetorical power of
29:27the word simply takes over.
29:29It obscures all other risks,
29:31benefits, and burdens,
29:32and I think the term itself carries
29:35with it this sort of mystical,
29:37mystical, and forceful gestalt quality.
29:41And sometimes claims of suffering can
29:43really eclipse the rest of the decision,
29:46all the other sort of important factors that
29:48we're considering as we make decisions,
29:50and it might even encourage.
29:51Is to make some dramatic decisions
29:53because the presence of suffering simply
29:55feels so bad that it must be eliminated,
29:58even if it means,
29:59in the words of dansel Macy,
30:01eliminating the sufferer.
30:04And importantly and this is really
30:06kind of one of the terms that I
30:08think important terms that my paper
30:10takes is that I think second hand
30:12claims of patient suffering might
30:14actually tell us more about the
30:16speaker than they do the patient.
30:18So when a caregiver, a parent,
30:21a physician, a nurse says, gosh,
30:23I wonder, I wonder and worry,
30:24is this patient suffering or
30:26even more sort of to the point
30:28this patient is suffering and we
30:29should do something about it,
30:31I wonder if what we might actually be saying.
30:34Is when we say that a child
30:37is suffering unbearably.
30:38It might be, you know,
30:39this is distressing to cause pain
30:41for what I consider to be little,
30:43little benefit.
30:43Or you know what,
30:45I wouldn't want to live this way or I
30:47would not make this choice for my child.
30:50Or perhaps more to the point,
30:52I the caregiver, caregiver,
30:53and I'm in distress and I'm suffering.
30:57The problems with this are when
31:00we use when we deploy second
31:01hand claims of patient suffering.
31:03We aren't specific about what we
31:05mean and we could be referring
31:07to a whole variety of concerns.
31:10Second, as we've already sort of discussed,
31:11second hand assessments of patient suffering,
31:14especially pediatric or child suffering,
31:17are generally, you know,
31:18not not very reliable.
31:19We can make educated guesses,
31:21but we can't know with strict confidence.
31:24Again,
31:25it easily invites in the smuggling
31:27in of personal values.
31:28For those of you that are familiar
31:30with the debate that happens,
31:31you know,
31:32it's it's sort of died down at this point.
31:33But there was a very widespread
31:36bioethical debate around the concept
31:37of futility and how it should,
31:40how that concept should or should not
31:41operate in medical decision making.
31:43And one of the critiques of utility,
31:45actually,
31:45was that the term easily smuggles
31:47in personal values,
31:48value judgments that don't necessarily
31:50require an explanation because they're
31:52just sort of smuggled in with the term.
31:54I wonder if something similar here
31:56is happening with the term suffering.
31:58And again, the point here is that
32:00perhaps a claim like this,
32:02a second hand claim,
32:04is saying something more about the
32:06speaker than it is about the patient.
32:08It's describing a speaker who
32:10feels very troubled by what
32:12appears to be a child
32:14that's in pain or distress.
32:16And I want to be very clear.
32:18I think caregivers should be empowered
32:20to communicate these observations
32:22to parents and other caregivers,
32:23and parents do and should
32:25depend on the observational.
32:27Expertise of clinicians to help them
32:29make decisions about their children.
32:31What I find problematic is not not that.
32:34What I find problematic instead is
32:37that sometimes these communications
32:39can a be offered without really
32:41any further clarity about the
32:43specific concerns of the clinician.
32:45What is it specifically about
32:47the experience of the child that
32:49you're worried and and then second,
32:51that sometimes exaggerated
32:53descriptions aimed at prop
32:55prompting a particular decision.
32:57Are what we're aiming for when
32:59we use the term suffering.
33:00And then finally again.
33:01As we've seen with some of
33:03the empirical literature,
33:04this particular decision is
33:06often one that is life ending.
33:09So perhaps the moral significance
33:10again of these claims actually
33:12has less to do with the child
33:13and more to do with the speaker.
33:19Again, second hand claims of patient
33:20suffering may or may not align with
33:22the with actual patient suffering
33:24and that should be accounted for
33:25in the decision making process.
33:27So we do need to take seriously the
33:29possibility that a patient is suffering
33:30and we need to explore that claim
33:32further and get more specific about it.
33:34But it also should prompt another response.
33:37In us it often indicates that the speaker,
33:40the physician, nurse,
33:42caregiver parent is themselves experiencing
33:44distress and may in fact themselves.
33:46Be suffering.
33:47And this is sort of the crux
33:49of my presentation today.
33:51This deserves our attention.
33:52This is not something that should be ignored.
33:54We think it this sort of claim
33:57has to result in influences or
33:59impacts on the medical decision.
34:02But I think perhaps this sort of claim might
34:04invite us to a different sort of response,
34:06attending compassionately and empathetically
34:08to the experience of our colleagues
34:12and fellow caregivers when people,
34:14caregivers, physicians, nurses,
34:16parents make claims of patients.
34:17Suffering.
34:17I believe they are rarely intending to
34:20influence decisions in a manipulative way,
34:22and again, in many cases,
34:24are themselves suffering.
34:25We should not underestimate
34:27the psychological, emotional,
34:28and spiritual effects of providing care
34:30for someone that they believe is suffering,
34:32especially if we believe that
34:34they're suffering directly because
34:36of what we are doing.
34:37This is notable, this is powerful.
34:39And this really it can't be ignored.
34:41In fact, at Cardinal Glennon,
34:42where I served as the Vice
34:44chair of the Ethics Committee,
34:45we've actually shifted a lot of our ethics.
34:47Consultation services,
34:48or,
34:48excuse me,
34:49Ethics Committee services to preventive
34:52ethics work toward attending to these
34:55sorts of experiences of caregivers,
34:57you know,
34:58attending to the moral distress of
35:01caregivers just attending to the the,
35:03the stress that is put on caregivers
35:05when they're confronted with
35:07morally challenging situations.
35:08We have a program called care
35:09for the caregiver.
35:10We also, we do moral distress rounds.
35:12We do debriefings after difficult
35:14deaths or patient events.
35:16And we've also.
35:17Uh, recently started doing Schwartz rounds.
35:20You know,
35:21I'm,
35:21I'm actually not very familiar
35:22with what your institution does,
35:23but if you're interested in
35:25sharing with me during the Q&amp;A,
35:26some of the initiatives that your
35:28hospital has put into place to to
35:30in a similar way kind of attend to
35:32these experiences of caregivers.
35:34I would really love to hear those.
35:39OK. So this is kind of the final big summary
35:43slide where I just want to offer you,
35:46I hope, some very practical suggestions
35:49and thoughts on how to respond to the
35:52experience of hearing someone else or even
35:55in you yourself wanting to make a claim
35:58about a patient that is suffering that
36:01you believe is suffering in your care.
36:05So first and really this actually should
36:07be at the top, it's not at the top.
36:09Well, it is at the top.
36:10I'm sorry, it's at the top of
36:12the the very top box there.
36:13If at all possible,
36:14we should do our very best to actually
36:16hear directly from the patient.
36:18You know, in the case that I
36:19described to you, Annie is an infant.
36:21It's very hard to sort of communicate
36:23at any real direct way with Annie,
36:25although certainly we can use some
36:27cues for her body and behavior.
36:29But in many other cases in Pediatrics,
36:31actually we can talk to our patients,
36:33we can in very creative ways.
36:36Utilize the resources around us like
36:39child life specialists or play therapists
36:41or psychologists to help us learn
36:43how to communicate more effectively
36:45with children and more importantly,
36:47to listen and really try to understand
36:50the experience that they're having.
36:52And this is perhaps,
36:53you know,
36:54the first thing we should think of is
36:56can we actually get a report directly
36:58from the patient about their experience.
37:00So beyond that,
37:01though,
37:01we will still have many cases where
37:03there are claims of patient suffering
37:05and the patient really can't give us.
37:06Any direct insight into that experience?
37:08So in these cases,
37:10the first thing to do is to get specific.
37:14We should ask follow up questions.
37:15What do you mean by suffering?
37:17What specifically indicates to you
37:19that this patient is suffering
37:21or what concerns you the most
37:23about this patients experience?
37:25Then we sort of moved down to this,
37:27you know,
37:27down down an arrow in our
37:29little graphic here.
37:30Then we should respond to
37:31those specific concerns.
37:32We should do our best to mitigate
37:34the experiences that are distressing
37:36or troublesome pain and symptom
37:38management should be deployed and
37:39as you know as sophisticated,
37:41as sophisticated away as we are able.
37:43Should call in specialists.
37:45Palliative care obviously can be a real
37:49help and resource in these situations.
37:52How how ought to we to respond though?
37:54So this is sort of focused more
37:56on the pain aspect of suffering,
37:57the physical symptom aspect
37:59aspect of suffering.
38:00But what should we do where we suspect that a
38:02child is experiencing existential suffering?
38:05And again,
38:06as a reminder,
38:06many of you really related definitions
38:08to us today that had a little
38:10more to do with the psychological,
38:12emotional or existential component
38:14of this concept.
38:16And we worry about that that
38:18sort of experience on behalf of
38:19the children that we hear for.
38:21And this is very difficult.
38:22Perhaps one of the hardest parts
38:24of our jobs is
38:25knowing how to respond to the possible
38:28existential suffering of our patients.
38:30What I'll suggest to you as potentially
38:33a powerful response is also perhaps
38:36the simplest response that you'll hear,
38:38which is we respond to suffering
38:40by being present with the sufferer.
38:43So I draw here from the
38:45work of Stanley Howard Wass,
38:47who's a Christian theologian who's written
38:49extensively on responses to suffering,
38:51and the term he offers is
38:54deemed suffering presence.
38:55So this is for him a wise and
38:58possible response.
38:59He urges us, with this concept,
39:01not to fall prey to the desire
39:03to prevent all suffering.
39:05We we simply can't do that,
39:06and that impulse would be mistaken.
39:09And as deeply and necessarily
39:12interdependent creatures,
39:13existential suffering calls us not only
39:16to Rage Against the suffering itself,
39:18but instead,
39:19and indeed in addition to draw
39:21close to the sufferer.
39:23He says that by attributing our own
39:25suffering to the patients we care for,
39:27in some cases we lack imagination,
39:29and in trying to avoid the
39:31boundaries of our compassion and
39:33perhaps again our own suffering,
39:35we might avoid the presence
39:37of those patients.
39:38So we respond to claims of.
39:40Residential suffering of
39:42children first by ourselves,
39:44drawing near to those children.
39:46We spend more time with them, not less.
39:48When they tolerate and respond to our touch,
39:51our embrace, we touch and we embrace.
39:53When our touch and or embrace
39:55seems to only agitate them,
39:57which it sometimes does.
39:58We sit nearby, we speak to them,
40:00sing to them, we stay near,
40:02and 2nd we encourage parents to do the same.
40:06Parents are often very deeply
40:08troubled by their powerlessness.
40:10To prevent or remove their
40:12children suffering.
40:13This is perhaps one of the most
40:15profound threats that a parent will
40:18experience during the hospitalization
40:19or illness of their child is a threat
40:21to really what they consider to be one
40:23of their primary roles as a parent,
40:25which is to protect their
40:26child from suffering.
40:27So providing parents with opportunities
40:30for active caregiving reaffirms
40:32this role as parent and in many
40:35cases can actually help alleviate
40:37some of their own distress.
40:39And then finally up here we have
40:42the suggestion that we should
40:44care better for our caregivers.
40:45When we do see evidence of
40:48caregiver suffering or distress,
40:51we should attend to that.
40:52Again,
40:53the the opportunities available to us
40:55here are largely conversation based.
40:58Again,
40:58I'd love to explore any solutions
41:00or sort of creative fora in which
41:03you've invited caregivers to
41:05discuss their own experiences of
41:07potential suffering or distress.
41:09But we acknowledge this suffering and we
41:12provide avenues to express and discuss it,
41:14often through things like
41:16interdisciplinary conversation,
41:16debriefings, counseling,
41:17peer-to-peer support groups, etcetera.
41:21So in conclusion,
41:22just sort of to to share with you
41:25maybe some take away thoughts.
41:26I'd like to argue that all claims of
41:29patient suffering do deserve our attention,
41:32but they perhaps do not require
41:35the dramatic decision making
41:36response that we think they do.
41:38Suffering should be specified and
41:40situated in the larger context
41:43of the decision making process
41:45and instead when secondhand
41:46claims of patient suffering occur,
41:48what they require us require
41:50of us is to investigate.
41:52To listen, to, engage and draw ever
41:55nearer to those who are suffering.
41:58And that is my presentation and I'm
42:02very eager to hear your thoughts,
42:04comments or questions and I will stop
42:07my screen share and let that happen.
42:11That's fantastic.
42:12Thank you so much Erica.
42:14That was a very interesting and
42:17thought provoking conversation.
42:21Well, again, I invite everyone
42:23to submit any questions or
42:24comments through the Q&amp;A function,
42:26and I'll be reading them to Doctor Salter.
42:28In the meantime, I, you know,
42:30this is a place near and dear to my heart.
42:33First, I just. I just.
42:35I think in in the in the Ben
42:37Wilfong's chapter on trisomy 18 and
42:40that I think part of his point was
42:42and I think part of your point was
42:45also that perhaps the clinician in
42:47that scenario was overselling it
42:48a bit over selling it in terms of
42:50the lethality of the condition of
42:52trisomy 18 because of course we'll
42:54find has written about how we use
42:56the well known about lethal lethal
43:00language that we have to be very
43:02careful what we call lethal which is
43:03a bit of a self fulfilling prophecy.
43:05Just when we then don't,
43:06then don't treat people with these disorders,
43:10but that we use suffering.
43:13You know, there are certain buzzwords.
43:14It strikes me.
43:16And, and now for me,
43:17after hearing you talk,
43:18I I fear that suffering is
43:20on my list of buzzwords,
43:22which are words people use not to
43:24open up conversation, but to close it.
43:27And I mean another well known one or
43:30as is is a futile futility, right?
43:32And another I think is heroic.
43:34Just as you said that suffering
43:35is used often to stop therapy
43:37as opposed to to do something,
43:38it says to stop doing things.
43:40I find that people refer to a treatment
43:43as heroic only when they don't want to do it.
43:45And for perhaps for justifiable reasons,
43:48perhaps not.
43:48But but in like fashion,
43:50I worry that we do use the suffering.
43:52So a quick question before I then
43:53start looking at these questions.
43:55So would Cassells say?
43:57That and this I ask you,
43:59this is a neonatologist because I
44:01don't equate newborns with animals
44:03but there are some similarities
44:04in terms of cognition etcetera.
44:06So with Cassells say based on
44:08his definition it's impossible
44:09for an animal to suffer
44:11I believe. So I believe it's sort of,
44:13I mean even though I think he would
44:15acknowledge that there are many animals,
44:16primates for for example,
44:18that do have sort of some
44:19sophisticated cognitive abilities.
44:21But for him it is about this sort of
44:24narrative construction of ones life.
44:26So I mean I it's actually an interesting.
44:29Because zoological question,
44:29I don't actually know if we can sort
44:32of understand how, for example,
44:33like a chimpanzee sort of understands
44:35their existence in the world.
44:36So for him, he hinges it on that type
44:39of understanding of an experience,
44:41so a threat to one's kind of
44:43narrative intactness and perhaps
44:45some animals could fulfill that.
44:47But I think in general he
44:48would argue that they can't.
44:50And Mark,
44:50thanks so much for bringing up a sort of
44:53Ben Ben Wilson's position on this topic.
44:55I agree.
44:56I think he would largely agree with us.
44:59And what you've said today and what
45:00I've said today is the case that
45:02they used in that chapter I think is
45:04to illustrate some of the problems
45:05with this sort of decision making.
45:07And and he would very much as you
45:09mentioned advocate for a a sort of
45:11more careful look at what actually is
45:13going on in a trisomy 13 or 18 case.
45:18Could you help me out a little bit with
45:23a term that gets used often and I
45:24wonder if we all have different
45:26understandings or understandings,
45:27existential suffering or existential pain?
45:32Yeah. No, that's a great question.
45:34So what we're dealing here with
45:36is sort of a a dimensions,
45:39kind of a combination dimension
45:41of emotional and psychological,
45:43like having to do with our specific
45:45identity in the world and what
45:47that means for our existence.
45:49I mean, I think probably
45:50there are many other,
45:50there's many definitions of existential,
45:53but it sort of is kind of, again,
45:54we're kind of moving up levels
45:56of experience here from maybe
45:58physical to psychological,
45:59emotional to spiritual to existential.
46:04The, the, the, the baby doe
46:07rules that you referenced.
46:09So they, they the, the the regulations
46:11again that's the baby doe.
46:13As I understand this is not law
46:16but rather federal regulation and
46:17it's so we can't use suffering as
46:20a justification to withhold life
46:23sustaining medical treatment right?
46:25So if if that's.
46:26I guess I would ask,
46:29do you agree with that and is
46:30that consistent with the practice
46:32at Cardinal Glennon?
46:35Yeah, this is a great question.
46:36You know, the sort of status
46:38of baby DOE regulations,
46:39my understanding is that so because
46:41they're tied to federal funding,
46:42so it's my understanding of the regulations
46:44is that if institutions are found to be
46:47violent in violation of the baby DOE rules,
46:50they would risk removal of federal
46:54funding through certain mechanisms.
46:57My understanding is this has actually
46:59never happened and and I think it's
47:01sort of interesting to to see the
47:04effects of that legislation.
47:05Today, I don't know that they
47:07are very widespread,
47:07but your question I think is more
47:09about whether it is suitable.
47:11Well, ask it again, Mark.
47:12Is it, is it,
47:13is it appropriate to set aside
47:14quality of life considerations when
47:16making treatment decisions for for
47:18so much quality of life.
47:19But of course quality of life and
47:21suffering are obviously these are
47:23overlapping ideas because oftentimes we
47:24say that it's justifiable to withhold
47:27or withdraw life sustaining medical
47:28treatment based on quality of life
47:31considerations that mean as as you know,
47:33I'm sure better than I do that.
47:35That that's that's dangerous territory
47:37when we start making judgment about
47:39the quality of someone else's life.
47:41When we do try to make an assessment
47:43about their suffering, however,
47:44it's not exactly the same thing.
47:46But as I understand that the that the baby
47:48doll regulation said specifically that we
47:50can't use suffering as that consideration.
47:53So, for example,
47:54the folks in the Netherlands
47:55would say that if it was,
47:57you know,
47:57severe and intractable suffering
47:59that that would be a justification
48:01potentially for youthanasia.
48:03We wouldn't say that here in the
48:05legal context yet.
48:05But we might say and and I'll go
48:07out on a limb and say that that I,
48:09I am quite sure that there are
48:11hospitals where this occurs when if
48:13we think that a child is in pain,
48:14in severe pain and there is little
48:17or no hope of of ever getting out of
48:21the hospital that we tend to give
48:23parents a fair amount of latitude.
48:24Yeah, yeah, absolutely.
48:25That is certainly the practice
48:27here at Glennon as well.
48:28It does deviate a little bit from the
48:30requirements of the baby DOE regulations,
48:31which is why I sort of question how,
48:33you know, how influential
48:34those regulations are.
48:35Today, because I think actual
48:38clinical decision making in pediatric
48:40institutions today more represents
48:41this sort of kind of an empowered
48:44parent approach to to make a more
48:46holistic decision about what is
48:48helpful or hurtful to their child.
48:50The point of the baby don't
48:51regulations is mainly about making
48:53decisions about disability.
48:54It was you know they were they
48:55came out of a couple cases
48:57of babies with Down syndrome,
48:59Down syndrome with very easily correctable,
49:01surgically correctable like a
49:03tracheal esophageal fistula,
49:05which actually was.
49:06One of the features of the case that
49:08we discussed today and and the idea is
49:10that we shouldn't deny that sort of Umm,
49:13surgical intervention based on the
49:15idea that their disability affects
49:17their life in such a way as to
49:19make it unbearable or low cost,
49:21low quality of life.
49:23So yeah, I think it's a,
49:25it's an interesting question to ask,
49:27you know how much those specific
49:28regulations do actually affect
49:29our decision making.
49:30I suspect not very much,
49:32although some of the some of the
49:34kind of philosophical content.
49:36There I think has. Existed.
49:40Yeah, I think that that I mean in my
49:43experience there's been you know,
49:44over the years there was a great
49:46deal of unhappiness on the part
49:48of the of the Pediatrics world
49:49with the baby DOE regulations.
49:51And yet looking back at the notion that
49:53that one shouldn't try to save a child,
49:55which drives me 21,
49:56they look back and say that what at
49:58least where those regulations came
50:00from seemed like a reasonable place.
50:02But where they go,
50:03where they take us may not be reasonable
50:04and they made too restricting in terms
50:06of latitude that we like to give parents.
50:09Yeah, absolutely. Yeah.
50:10Let me, let me read.
50:11I've got a couple of questions here.
50:13Thank you for this really excellent talk.
50:15I'm a nurse scientist with a
50:17pick you background and my work
50:19focuses on parental bereavement.
50:21We see time and time again that
50:23bereaved parents perceive a lot of
50:25suffering at the end of a child's life.
50:27How do you think about second hand
50:29accounts of suffering in the context
50:31of end of life care and grief?
50:35Oh goodness.
50:36I mean, so I would say first this,
50:39as this commenter mentions,
50:40I think this is a very common experience.
50:44I mean, it's it, I think.
50:46If we think phenomenologically
50:47about the experience of of
50:49having to watch your child die,
50:51it's a very unnatural experience.
50:52Again, it in many ways subverts
50:55many of the roles that a parent
50:57feels as being kind of closest
50:59to their identity as a parent.
51:02And the death of one child,
51:04or it's just experiencing what happens
51:06at the end of life of one child again,
51:09can can cause a lot of
51:12suffering in the parents.
51:13I think many of the same sort
51:15of conclusions would hold here.
51:17And my guess is that this commenter
51:19would agree that we need to do an
51:21even better job supporting bereaved
51:23parents and recognize that again,
51:25their child may be suffering,
51:27may or may not be suffering,
51:28but it's almost certain that they are.
51:30The parent is suffering again.
51:32Because of the nature of
51:34this sort of experience and,
51:35you know,
51:36caring well for that patient
51:37might also include caring well for
51:39that parent in a more supportive
51:41fashion as they as they grieve
51:42the loss of their child.
51:45You know I was. I was.
51:48I was touched by the third
51:50of their three paintings.
51:51I think it was the Munch painting.
51:53We're in that painting.
51:54It struck me it was one that was inspired,
51:55I guess, by a death from tuberculosis.
51:57You had said that that,
51:59and I got a quick look at it only,
52:00but it didn't look to me
52:02like the child was suffering,
52:03but it looked like the
52:04parent was surely suffering.
52:05And that's that's so much of what we
52:07see in the intensive care setting
52:09is so much parental suffering
52:10and a lot of suffering, frankly,
52:12on the part of the staff, too.
52:14Yeah. Here's a question,
52:16and perhaps this is a phrase.
52:18That that you'll understand better than I do.
52:20But someone asks,
52:21and I encourage everyone else.
52:23If you have questions or comments,
52:25by all means send them in
52:28through the Q&amp;A portion.
52:29But here's a question.
52:31Where does the idea of total
52:33pain fit into this paradigm?
52:35The idea of total pain,
52:37yeah, that's a great question.
52:38This is sort of maybe a newer concept.
52:41My understanding is that the
52:42idea of total pain is that there
52:44are many dimensions to pain.
52:46There's sort of the physical aspect,
52:47but also. Perhaps spiritual pain,
52:50social pain, psychological pain
52:52and that these all are sort of
52:55interactive with one another.
52:56I think the idea of total pain
52:58actually captures quite well some
53:00of the suspicions that we might have
53:01about the phenomenon of pain and
53:03suffering like that these are sort
53:05of again not identical concepts,
53:07but often Co occurring experiences
53:10and they're interrelated.
53:11Again, you know,
53:12I gave some examples of ways in which,
53:15you know,
53:15we experience physical pain
53:16and that may or may not cause.
53:18Suffering or in the in the total pain model,
53:21a physical,
53:21physical pain may or may not
53:23cause or contribute to social
53:25pain or psychological pain.
53:26But in many cases it does.
53:28And I think a model like total
53:31pain allows us to attend in a more
53:33specific way to what the patient
53:36or person is actually experiencing.
53:38Because you know,
53:39what we deploy like our solutions
53:40to that problem might look different
53:42if what we're actually addressing
53:44is social pain.
53:45So, for example, like isolation,
53:48it may, you know.
53:49Maybe manifesting in a physical manner,
53:51but the physical symptoms alone may
53:53not describe the the full experience.
53:56So I don't know if that answers
53:58the the question that was asked,
54:00but it it's a it's a a good and sort
54:02of interesting more kind of holistic
54:05concept that's being utilized.
54:07And so the next question seems to
54:09follow on the heels of that a bit,
54:10which is how do you deal with the
54:13spiritual aspect of pain or suffering?
54:14For example, an older person
54:16offering up their pain on this
54:18is a phrase that's interesting,
54:19offering up something we were
54:21talking about before we went,
54:22went live here, offering up their
54:25pain for the interest of another.
54:27What would be considered an unacceptable
54:30life status to one person may be
54:33considered just how they live for another.
54:37So the spiritual aspect of pain and suffering
54:39is something you've touched on a bit,
54:41but could you talk perhaps a bit more about,
54:43about approaches to that?
54:45Yeah. No, it's a great question.
54:47And I think it's one that often is
54:49sort of mystifying for practitioners.
54:51It's not really the domain or the
54:53language that we're most familiar with,
54:55but it's good to remember that there
54:56are people in our institutions that
54:58for whom that is their primary domain,
55:00you know, chaplaincy or pastoral care.
55:03If a if a patient or family is sort of
55:08making claims about religious beliefs
55:09or spiritual beliefs that are really
55:12affecting their experience of the illness,
55:14I think it's very appropriate to
55:15look at possible ways of mediating
55:17some of that suffering,
55:19utilizing the resources not,
55:20you know, not medical resources,
55:23but chaplaincy resources or
55:24pastoral care resources,
55:25or, you know,
55:27psychology resources or even resources
55:28from the local community or perhaps
55:31their local place of worship.
55:33And I think just the acknowledgement
55:35that that might be happening is a step
55:37in the right direction that you know,
55:39there are there are experiences in
55:41front of us that can't necessarily be
55:43reduced down to just the physical and
55:46that those deserve attending to as well.
55:49And perhaps when we think about some of the.
55:53Some of the worst suffering
55:54that we do in our lives.
55:56I mean, there's certainly so many folks
55:58have suffered just horrible physical pain.
56:01But the suffering associated
56:02with the loss of a loved 1,
56:04the suffering associated with
56:07isolation and loneliness is colossal.
56:10And you know,
56:11you mentioned about the chaplains,
56:12etcetera, one thing that's always impressed
56:15me about my profession in general.
56:19Is that there is a sense that
56:21physicians in particular,
56:22and I don't know if nurses suffer
56:24from this same delusion as much
56:26as we physicians do this notion
56:27that we really are supposed to
56:29be able to do everything related
56:31to taking care of sick people.
56:33And and there's really not much else that
56:36someone else has to offer that I can't do.
56:38And I mean this, this comes to light
56:41with regard to ethics committees.
56:43There was a, you know,
56:44there have been physician leaders in the
56:45past have said, you know what if you,
56:47if you get an ethics counsel that shows
56:49that you've basically failed as a physician.
56:51And I think that that in
56:52dealing with suffering,
56:53there's some of that too that we think,
56:55you know, what do you mean?
56:56I know how to do.
56:57I know the dose of morphine.
56:59That's it.
57:00I got that covered.
57:01There's so many aspects and
57:03there's so many people around us.
57:04And the Ethics Committee,
57:05I mean I'm impressed.
57:06I'm on the Ethics Committee here.
57:07I've been for many years.
57:09With with various members
57:10of that committee who are so
57:14insightful and so attentive and.
57:17And so sensitive to the suffering
57:19of of various people involved
57:20in the dramas that unfold here,
57:22but also the chaplains and
57:24and so many other folks,
57:25the folks on the palliative care
57:27service on the adult side and and
57:30and in the new one in our newborn
57:31here we're still in the process
57:33of really building as robust of
57:35palliative care services we want.
57:36But in the in the hospital now there
57:38are individuals and certainly in the
57:40newborn ICU there are individuals
57:42with a lot of insight and a lot of
57:44knowledge in these things and yet
57:45somehow we always have to kind of
57:47be nudged and reminded you know.
57:49Because what you're what are you
57:50saying that I'm an insensitive person?
57:51No, no, no one's saying that.
57:52We're saying that somebody else
57:54may have an angle on this that
57:55you haven't considered that could
57:57actually help somebody suffering
57:58that's beyond the dose of morphine.
58:00Yeah, absolutely. That's.
58:01Yeah, very well said, Mark.
58:03And it does, you know,
58:05invite me to consider even just
58:07sort of the professional impacts
58:08of some of these situations.
58:10I think in many ways, you know,
58:12we've come a long way in medical education,
58:14but as you mentioned,
58:14you already mentioned this word.
58:15I think it's appropriate in many ways.
58:17We see the death and
58:18suffering of our patients.
58:19As a failure, as a professional failure,
58:22you know, I have failed as a physician.
58:24I'm not a physician.
58:24But if I were a physician that's sort of,
58:26you know, how I would maybe
58:27think about that experience.
58:29And again,
58:29that experience in and of itself
58:32might actually cause some suffering
58:34because of its inability to be
58:37integrated with their understanding
58:39of themselves as a professional.
58:41So utilizing the resources
58:43that are available to us,
58:44as you mentioned,
58:45there are often far more resources
58:47than we remember available to us.
58:49Many people with expertise that
58:51go far beyond ours and also just
58:53acknowledging our own suffering,
58:55like sort of noticing when it is that we
58:58feel we feel overwhelmed or distressed,
59:01stressed out and reaching out for help,
59:05even for ourselves,
59:05when when that's appropriate.
59:08Thank you. Do you agree that the US
59:11government should have the right to directly
59:14intervene and set medical regulations
59:16such as the baby don't regulation?
59:18Or do you think that those decisions
59:20should be left to healthcare
59:21professionals or left up to each hospital?
59:25Wow, that's a big question.
59:27And yes, we are recording here.
59:31Be careful who we share this with.
59:34Yeah, I mean it's interesting.
59:35I think the the so in especially
59:37in the realm of Pediatrics,
59:39the government does have I think a
59:41more robust role because of what's
59:43known as the parents patriae doctrine.
59:45So this is a doctrine that it's
59:47essentially parent of the nation.
59:49The idea here is that the government itself
59:52or the states may need to serve a role
59:55to protect vulnerable patients or vote,
59:57excuse me, but vulnerable persons,
59:58vulnerable populations,
59:59there are certain populations that just sort
01:00:02of by virtue of their state in the world.
01:00:04Require extra protection and that
01:00:06perhaps it is the the government's job
01:00:09to step in and provide that protection.
01:00:10I think baby DOE regulations are an
01:00:13example perhaps of a way in which the
01:00:16federal government was envisioning
01:00:18sort of enacting a parents patria type
01:00:21of role for parents or for children,
01:00:24specifically children with disabilities.
01:00:25And certainly I mean just in
01:00:28general pediatric practice there
01:00:30are protections in place to.
01:00:34You know,
01:00:35in situations where parents might be
01:00:37making decisions that we consider to
01:00:39be unacceptably harmful to a child,
01:00:42typically we like to give parents
01:00:43the ability to make, you know,
01:00:45have pretty wide discretion and
01:00:46make kind of a wide latitude
01:00:48of decisions for their child.
01:00:49But there are limits to that.
01:00:51And I think,
01:00:52you know,
01:00:52the government has sort of depending
01:00:54on the state you're in,
01:00:55specified sort of what that might look like.
01:00:57That's often the role of judges or
01:00:59courts to make a decision about when
01:01:01those decisions are so harmful that we
01:01:03should step in and protect the child.
01:01:05So.
01:01:06My sort of answer or non answer is I
01:01:08do think there is some role for the
01:01:11government to protect vulnerable,
01:01:13vulnerable persons and populations.
01:01:14I think children qualify in that category.
01:01:17I think probably where we'd get into
01:01:20much more debate and controversy is
01:01:22like the exact nature of when it's
01:01:24appropriate to step in and intervene
01:01:26on parent decisions or even, you know,
01:01:29provider discretion or decisions.
01:01:32But that's a good hard question
01:01:35and I think that was a thoughtful answer.
01:01:37I mean perhaps an analogy can be drawn
01:01:39if we say that that we think that parents
01:01:41should be in charge of their kids,
01:01:44but we as healthcare professionals recognize
01:01:46that in certain settings we've got an
01:01:49obligation to the child to seek to overrule.
01:01:52A parents choice doesn't happen often,
01:01:55but it may happen and that's that's
01:01:57based on our perception of the
01:01:58child's rights and of our obligation.
01:02:00And an analogy might be drawn to say
01:02:03that that perhaps the government should
01:02:05be giving parents and physicians.
01:02:07Wide latitude but not not complete control.
01:02:10One can imagine,
01:02:11again if you think of extreme cases,
01:02:13if a hospital decided we're going to
01:02:15make it legal to youthanize children
01:02:17born with trisomy 21.
01:02:19If a hospital said, you know,
01:02:20we're going to say this is acceptable,
01:02:22that it would no longer seem
01:02:24unreasonable to us to think, well,
01:02:25it's it's that it's OK for the
01:02:27government still to draw the bounds.
01:02:29That indeed we think that we're
01:02:30the ones who decide that we're
01:02:32going to enforce certain things.
01:02:34But really in the emergency
01:02:35setting we often do.
01:02:36But in a non-emergency setting.
01:02:38That actually falls to the government
01:02:39in the form of a probate judge,
01:02:40right, in certain settings and so that
01:02:43that I I think that your answer was
01:02:46thoughtful and reasonable that yeah.
01:02:48But the hard part gets down to the detail.
01:02:50Exactly.
01:02:51It always does, yeah.
01:02:53Well,
01:02:54and I do want to mention Mark,
01:02:55you just sort of mentioned kind of the
01:02:57parent role and then the clinician role.
01:02:58And I do want to sort of emphasize that
01:03:01clinicians do have play a very sort of
01:03:03robust role in the decision making process.
01:03:05I mean we sort of now are using
01:03:07words like shared decision making
01:03:09but of course physicians you know in
01:03:11deploying their own kind of competency
01:03:13and professional integrity do have
01:03:14some rights to kind of define the
01:03:17boundaries of what's offered to parents.
01:03:18You know that is a pretty robust
01:03:20right or obligation depending
01:03:21on how you see it that is that.
01:03:23That's given them,
01:03:24that's given to the medical profession.
01:03:26We don't let parents just sort
01:03:28of choose off of an infinite menu
01:03:31of options for their children.
01:03:33We usually sort of specify a
01:03:35reasonable reign of option,
01:03:36a range of options.
01:03:37But of course the, you know,
01:03:39the reason they're pediatric ethicists
01:03:40like you and me is because sometimes,
01:03:43you know, there are options on
01:03:44that list that shouldn't be,
01:03:45or sometimes there are options not
01:03:46on that list that perhaps should be.
01:03:48And there's some,
01:03:49you know,
01:03:49interesting conversation we could
01:03:50have about what what what does belong,
01:03:52what doesn't belong.
01:03:54Yeah. And I and I think that it it
01:03:56that obligation is is to my lights
01:03:58the right word that that we have not
01:04:00just the right but an obligation when
01:04:02parents making a choice that's clearly
01:04:04opposed to a child's best interest.
01:04:07I'm I'm among those who like to
01:04:08give parents wide latitude but not
01:04:10complete latitude and I I guess I
01:04:11would want the same from the state
01:04:13I would want them to give us wide
01:04:15latitude but can't think reasonably
01:04:16that they would give us complete
01:04:18latitude and how we manage these cases.
01:04:20Yeah that seems reasonable.
01:04:21Another question.
01:04:23OK, I'm going to this is all,
01:04:24this is a long one here.
01:04:25So let me let me read because
01:04:27this is not simple stuff.
01:04:29So what about when we,
01:04:31the speaker,
01:04:31are distressed because we fear the
01:04:33act of giving medical treatment
01:04:36is causing emotional suffering
01:04:37at the expense of addressing?
01:04:40Physical suffering, for example,
01:04:42providing quality and standard of care.
01:04:46Pain management during terminal illness.
01:04:48But it keeps the patients in the
01:04:49hospital and away from home where it
01:04:51seems they will be more comfortable
01:04:53and better surrounded by loved ones.
01:04:55For example,
01:04:55COVID policies during end of life.
01:04:58What if we're a student without power
01:05:00but have the luxury of time and can
01:05:02draw near to the patient and be more
01:05:05in tune with the emotional experience?
01:05:07In these cases,
01:05:08the physician is satisfied.
01:05:10With the addressing the physical suffering,
01:05:12but refuses to significantly weigh the
01:05:15possible emotional suffering because
01:05:17they lack the time to perceive it.
01:05:20Wow, yeah, that's a great question.
01:05:22I really appreciate the examples.
01:05:23Actually that was helpful to understand
01:05:25where this speaker is coming from.
01:05:27So the first case or example was you
01:05:30know whether we keep a patient in the
01:05:32hospital to provide certain maybe like
01:05:34the most advanced palliative care services
01:05:36that we can versus discharging a patient
01:05:39home where we think perhaps they'll
01:05:41be more comfortable or again maybe the
01:05:43home environment is more amenable to
01:05:46flourishing socially and relationally
01:05:47or maybe even just sort of comfort wise.
01:05:51I think it is,
01:05:52you know I'll use the word obligation
01:05:54again it is the obligation of care
01:05:56providers when presenting these sorts of.
01:05:58Decisions to patients,
01:06:00families and parents to think
01:06:02through not only the physical risks,
01:06:05benefits, burdens, but the emotional,
01:06:09psychological, relational risks,
01:06:10benefits and burdens.
01:06:12And I think the example that this questioner
01:06:14provided is a great example of where,
01:06:16you know,
01:06:17if we don't talk about the fact that
01:06:19this patient may be more comfortable
01:06:21in these other ways at home,
01:06:23maybe they're not actually making
01:06:24a real informed choice about
01:06:26staying in the hospital.
01:06:27So, you know, I think.
01:06:29I think the question was phrased as what
01:06:31what should we do when the speaker is
01:06:33perceiving this sort of discrepancy?
01:06:35And I would say,
01:06:36you know,
01:06:36I would acknowledge that.
01:06:38I would sort of articulate the concerns
01:06:40that you might have and again sort of
01:06:42present what you consider to be some
01:06:44of the maybe relevant but neglected risks,
01:06:47benefits and burdens that fall less
01:06:49on the physical side of things and
01:06:52more on the spiritual,
01:06:53emotional,
01:06:54relational side of things.
01:06:56And I've I've already forgotten the speaker
01:06:58asked another part of that question.
01:07:00That was with the student,
01:07:02right. So. So if a student
01:07:05used the phrase without power,
01:07:07but the luxury of time and can in
01:07:09quotes draw near to the patient,
01:07:11you're more in tune with
01:07:12the emotional experience.
01:07:13So the physician here, presumably.
01:07:15So we'll say that the attending
01:07:17is satisfied that we're taking
01:07:18care of the physical suffering,
01:07:20but refuses to significantly weigh
01:07:22the possible emotional suffering.
01:07:23So students are in a tough
01:07:25spot in this situation.
01:07:26And they see things that
01:07:28perhaps they are busier,
01:07:30more senior physicians don't see.
01:07:31Yeah, it does seem like a sort of cruel
01:07:33irony that the that the more authority
01:07:35one has in the medical profession,
01:07:37the less time they have to
01:07:39sort of enact that authority.
01:07:40So I do think it's that experience
01:07:43I don't think is uncommon.
01:07:46And I will also maybe add to the list
01:07:48the experiences of our nursing staff
01:07:50who are bedside with patients more
01:07:52regularly and I think what our obligation
01:07:55or duty is in these situations.
01:07:56Is to listen to these people who are
01:07:58able to spend more time with the patient.
01:08:00If our goal is to understand in a
01:08:02more robust and accurate way what our
01:08:05patients are actually experiencing
01:08:07and how we can, you know,
01:08:09solve any problems that exist there,
01:08:11then we have to sort of be willing
01:08:13to take information from all
01:08:14those sources and it's, you know,
01:08:17it's interesting like what counts
01:08:18is relevant information here.
01:08:19Many physicians might say like you know,
01:08:21I have everything I need with the I have
01:08:23the lab values, I have the monitors,
01:08:25I can see the patients vital signs.
01:08:27You know, right in front of me.
01:08:28That's all I need to know.
01:08:29But I think the claim of this,
01:08:30the person who asked this question is like,
01:08:32you know, no,
01:08:33there's other things we should add to
01:08:35the list that actually you haven't been
01:08:37able to see because you haven't been here.
01:08:39So I mean,
01:08:40it's an easy solution to say we
01:08:41should listen to the student.
01:08:42Of course,
01:08:43it's much harder to sort of
01:08:45culturally fold that practice
01:08:46into how we practice medicine.
01:08:50Sure. But, but I I would
01:08:51just add that if I could.
01:08:53I don't mean to paint on your
01:08:54painting please if this is a local
01:08:57situation to say to the student that.
01:09:01That to give the attendings
01:09:03the benefit of the doubt,
01:09:05which is to say that I can't speak
01:09:07for for every attending physician,
01:09:09but I'd be willing to bet that most
01:09:11attending physicians in the hospital
01:09:13actually want to do right by the patients.
01:09:15And so that that it takes and it's
01:09:17easy for an old guy who's not going
01:09:18to apply for any more jobs and not
01:09:20working for any more promotions.
01:09:22So it's easy for me to say it and it's
01:09:23harder for you as a student to do it.
01:09:25But I would encourage you to to
01:09:27bring this forward to the attending.
01:09:30Because the vast majority of attendings,
01:09:32even if at first they they get they,
01:09:35they are unhappy with the notion that
01:09:37they didn't keep their eye on everything.
01:09:39That in fact they'll appreciate
01:09:41the insight and you know,
01:09:42and if you really think that
01:09:44a patient's suffering is not.
01:09:45Being addressed and you really feel
01:09:47you can't take it to the attending
01:09:50physician then I would say you need to
01:09:52find someone else you trust who you
01:09:54can take it to and you know and and one
01:09:57possible example is the chief resident.
01:09:59But if if you really feel a patient
01:10:01suffering is not being properly addressed.
01:10:03I would hope that you could take it
01:10:04to the attending but I won't presume
01:10:07that that's always easy but I I think
01:10:09that it's takes a lot of courage more
01:10:10courage than I'm going to have to
01:10:11show because it's easy as I say it's
01:10:13easier once you're old and senior.
01:10:14Just say this. It takes some courage.
01:10:17But that's, you know,
01:10:18that's part of the job too.
01:10:20And,
01:10:21and I would say to find somebody you
01:10:22can trust to say that this is what
01:10:24I'm worried because it might just
01:10:26be the attendings actually seeing
01:10:27things that the student isn't.
01:10:29But no,
01:10:30we're not going to find any of that
01:10:31stuff out of the dialogue doesn't happen.
01:10:32So yeah.
01:10:34So I appreciate the question,
01:10:35appreciate the spirit of the student
01:10:36trying real hard to address.
01:10:37And I also don't want to assume that
01:10:39every attending always wants to do
01:10:41the right thing, no matter what.
01:10:43We get tired too.
01:10:45But I very much appreciate the question.
01:10:47And I have another question for you,
01:10:48my friend. Great.
01:10:50This is from a chaplain who knows.
01:10:52As a pediatric chaplain myself,
01:10:54I have to consistently and gently
01:10:56remind providers that chaplains
01:10:58are attuned to existential and
01:11:00spiritual concerns.
01:11:01Not only quote religious End Quote,
01:11:04we're skilled listeners who are often
01:11:06able to connect with patients and
01:11:08families on a deep level as persons,
01:11:10and who have done a lot of work to
01:11:13understand our own responses to suffering.
01:11:15And integrate them into our
01:11:17everyday practice.
01:11:18I think you're wonderful talk
01:11:20points of the importance of
01:11:22understanding ourselves as caregivers.
01:11:26Beautiful reflection and I'm I'm.
01:11:28I hope those skills are being valued
01:11:30for this particular chaplain and and
01:11:32all those in in our present site.
01:11:34It's it is there is a temptation.
01:11:36I worry at times for some of
01:11:38those quote UN quote soft skills,
01:11:40the more sort of interpersonal or
01:11:42communication based or sort of emotional
01:11:45skills to be devalued in favor of more
01:11:47sort of technical or medical skills.
01:11:50When in fact in many cases at least
01:11:51in I don't know about you mark
01:11:53but in the vast majority of ethics
01:11:55councils tonight that I'm involved in.
01:11:56Where things get really sticky,
01:11:58it's really the communication
01:12:00interpersonal skills that that are
01:12:02most central to the resolution
01:12:03of a case and that's when things
01:12:05go wrong on those fronts.
01:12:07It really doesn't matter how
01:12:08well you practice medicine.
01:12:09Things are just going to get hard.
01:12:11So yeah,
01:12:11beautifully said and I I hope that
01:12:13that Chaplain feels appreciated
01:12:15by their colleagues.
01:12:17I
01:12:17hope so too is I can tell you that this job,
01:12:19I don't say the names of the question
01:12:20is because we're being recorded.
01:12:22This particular chaplain is very skilled
01:12:24at this and is very much appreciated.
01:12:27I think that's it for questions.
01:12:29So I'm going to wrap this up in a minute.
01:12:32But before I do, Erica,
01:12:35based on the conversation that that
01:12:36we've had here in the many interesting
01:12:38questions and you're terrific talk,
01:12:40I wonder if you have any final thoughts or
01:12:43suggestions you'd like to leave us with?
01:12:45Yeah, you know, I mean this is a really
01:12:47nice offer to sort of get to close
01:12:49the session with some final thoughts.
01:12:50And I think actually my,
01:12:51my final thoughts are a little more
01:12:53general than the talk that I gave.
01:12:55You know, I, I'm an academic.
01:12:57I'm not a practitioner.
01:12:58I'm not a clinician.
01:12:59And so I have the sort of liberty and
01:13:03privilege to and luxury to sort of from,
01:13:06you know, my cozy academic office
01:13:07to think about these questions and
01:13:09sort of give advice to those of you
01:13:11on the ground doing the hard work.
01:13:13And I just want to acknowledge
01:13:14that the work is really hard work.
01:13:16You know, like the topic that we're
01:13:18engaging with today is what do you
01:13:20do when you're in the presence
01:13:21of a child who is suffering?
01:13:22And that's something you experience
01:13:24potentially on a daily basis.
01:13:26And I just want to affirm
01:13:29the importance of that work.
01:13:31I hope all of you that do this
01:13:33hard work do feel appreciated.
01:13:35I, and I also hope you,
01:13:37you have resources available to you
01:13:39and you can sort of self identify
01:13:40when you might need those additional
01:13:42resources to make sure that you're
01:13:44taking good care of yourself as well.
01:13:45I think COVID.
01:13:46Sort of expose this real deficit
01:13:51in good support models for medical
01:13:54nursing professions,
01:13:55other ancillary care professionals
01:13:56on the ground doing the hard work.
01:13:58So my final word is just thank you for
01:14:01the job that you do and you're appreciated.
01:14:06Erica, thank you so much for
01:14:08for the insightful talk and
01:14:10for the conversation for your,
01:14:11your responses to the question.
01:14:13This has been a wonderful evening.
01:14:16I look forward to hosting you in New
01:14:17Haven in person, somewhere down the road.
01:14:19In the meantime, there's a Yale baseball
01:14:22cap in your future and we will be in touch.
01:14:25And I thank you so much for coming here.
01:14:27I thank you folks very much.
01:14:29We'll be back in another week with our
01:14:32next seminar which we'll which you'll
01:14:34get a mailing about again tomorrow.
01:14:36But for tonight,
01:14:37this has been a terrific evening.
01:14:39Doctor Erica Salter,
01:14:40thank you very much and have a great
01:14:42evening. Thank you so much. Thanks folks.