Rhetoric and Role of Suffering in Pediatric Decision-Making
December 08, 2022Information
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&A for the Q&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&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&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&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&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&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&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.