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Shared Humanity, Better Care: Solidarity in Oncology · Health Ethics Podcast

0:09
Speaker 1: Welcome to Health Ethics, a series of conversations with leading
0:13
Speaker 1: experts about ethical considerations associated with health and healthcare, both
0:17
Speaker 1: locally and globally. I am Brian Pilkington, Professor of Bioethics
0:21
Speaker 1: in the Department of Medical Sciences at the Hackensack Meridian
0:24
Speaker 1: School of Medicine. This series, like its predecessor, which focused
0:29
Speaker 1: on the COVID-19 pandemic, relies on the idea that challenging
0:32
Speaker 1: ethical issues are best addressed by folks from diverse backgrounds
0:37
Speaker 1: practically reasoning together. and complements the Health Ethics Series with
0:42
Speaker 1: its panel of leading experts from medicine, nursing, politics, economics, philosophy,
0:47
Speaker 1: and the law. Thank you, and enjoy the episode. Welcome
0:59
Speaker 1: to the Health Ethics Podcast. I am Brian Pilkington, and
1:02
Speaker 1: it is my great pleasure today to be speaking with Dr.
1:05
Speaker 1: Nico Norti. who is associate vice president at the University
1:09
Speaker 1: of Texas MD Anderson Cancer Center in Houston, Texas, where
1:13
Speaker 1: he leads both the Center for Clinical Ethics in Cancer
1:16
Speaker 1: Care and the Center for Goal Concordant Care. He also
1:21
Speaker 1: serves as an associate professor in the Department of Critical
1:24
Speaker 1: Care Medicine. He holds a PhD in applied ethics and
1:27
Speaker 1: a master's degree in psychology, in addition to his appointments
1:31
Speaker 1: at MD Anderson. He also holds honorary academic appointments at
1:35
Speaker 1: Lakehead University in Canada, the Western Cape in South Africa,
1:39
Speaker 1: and Harvard University in the U.S. As a scholar, he
1:43
Speaker 1: has authored more than 90 peer-reviewed publications, serves as a
1:46
Speaker 1: section editor for two international journals, and has co-edited four
1:50
Speaker 1: academic books. His research focuses on advancing goal-concordant care, enhancing
1:55
Speaker 1: goals of care conversations, and strengthening communication skills among healthcare professionals.
2:00
Speaker 1: He's particularly interested in understanding the factors that influence decision-making
2:05
Speaker 1: by patients and families facing serious illness and end-of-life care.
2:10
Speaker 1: centered on cancer and cancer care, his work to improve
2:13
Speaker 1: the lived experiences of patients and their loved ones through
2:16
Speaker 1: the application of ethical principles, compassionate communication, and patient-centered decision-making.
2:21
Speaker 2: Cancer is, or better, cancers are something which touches so
2:24
Speaker 2: many lives, and I can think of no one better
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Speaker 2: to discuss bioethical issues around medicine and research practices than Nico.
2:33
Speaker 2: So thank you so much for joining me, Nico. I
2:34
Speaker 2: appreciate it.
2:35
Speaker 3: I appreciate the opportunity and always happy to talk about it.
2:39
Speaker 3: Thanks for the invite, Brian.
2:41
Speaker 2: Of course, of course. And before we jump into discussions
2:44
Speaker 2: of bioethics and do some of the sort of real
2:47
Speaker 2: academic heavy lifting, give us a minute on how you
2:51
Speaker 2: got interested in bioethics and ultimately became involved in ethical
2:55
Speaker 2: considerations around cancer.
2:58
Speaker 3: I think as with many of us, my road didn't
3:02
Speaker 3: start in or I didn't start in ethics per se,
3:04
Speaker 3: but I started my career as a psychologist. And I
3:08
Speaker 3: worked in the field of grief and bereavement with a
3:12
Speaker 3: specific focus on pediatrics. And simultaneously, I was very much
3:17
Speaker 3: involved in hospice care as well in South Africa. And
3:22
Speaker 3: I saw firsthand all the suffering that patients and families
3:25
Speaker 3: went through at end of life because of uncertainties of
3:29
Speaker 3: choices they had or decisions they could make. And I
3:34
Speaker 3: really had to question what the healthcare environment is doing
3:39
Speaker 3: and where the moral and the social contract that we
3:43
Speaker 3: need to have with patients, where that lies. So consequently,
3:49
Speaker 3: from our psychology, I branched into clinical ethics, did my
3:54
Speaker 3: doctorate studies. And then a few years later, I got
3:58
Speaker 3: recruited to the University of Texas MD Anderson Cancer Center
4:02
Speaker 3: here in the USA. And I've been here ever since.
4:05
Speaker 3: And My focus is around very much end-of-life care in
4:10
Speaker 3: the ICU setting, but also communication. How do we communicate
4:14
Speaker 3: better with our patients and families and care teams as well?
4:21
Speaker 1: Really helpful background. And we'll do this throughout, but sort
4:23
Speaker 1: of remind our usual listeners of other conversations we've had
4:27
Speaker 1: that sort of tie in. And the mention of the
4:30
Speaker 1: social contract is really, really helpful. And we've had a
4:32
Speaker 1: few folks on. Tom Naska talked about the social contract.
4:35
Speaker 1: Fred Hafferty has discussed it. So we've had a couple
4:37
Speaker 1: of people sort of highlighting the importance of relationships between
4:41
Speaker 1: all those involved in this. in care and with society.
4:45
Speaker 1: So let's shift a bit.
4:47
Speaker 2: You and your colleagues have done work on culturally informed care,
4:51
Speaker 2: which is a hot topic these days.
4:52
Speaker 1: It's a buzzword of sorts.
4:54
Speaker 2: And I really, really enjoyed the article. So you frame
4:57
Speaker 2: this work in terms of three concepts. in terms of solidarity,
5:01
Speaker 2: in terms of cultural humility, and sort of the big
5:04
Speaker 2: field of medical ethics. And I was hoping you could
5:06
Speaker 2: say a bit about each. And in particular, I mean,
5:10
Speaker 2: folks who listen probably know a bit about medical ethics.
5:12
Speaker 2: If you could start with solidarity, and then we'll go
5:14
Speaker 2: and just think through cultural humility. How does that impact
5:18
Speaker 2: what you do? How does that impact care?
5:20
Speaker 3: Yeah, that's actually quite a fascinating experience writing it from
5:24
Speaker 3: a South African perspective, a Mexican perspective, and a Canadian
5:28
Speaker 3: perspective as well. And we found a lot of similarities
5:32
Speaker 3: between cultures and how they would approach medical decision-making. But
5:37
Speaker 3: specific to your question, I think solidarity and with solidarity,
5:42
Speaker 3: I mean the ethical concept of solidarity, not necessarily the
5:46
Speaker 3: political concept, but the ethical concept emphasizes on the shared
5:51
Speaker 3: humanity and standing with patients, particularly those facing structural inequities,
5:59
Speaker 3: to ensure that we give them just and compassionate care.
6:04
Speaker 3: The background shouldn't impact the kind of care, the level
6:07
Speaker 3: of care they get. We should always be there standing
6:10
Speaker 3: with our patients, regardless of whatever the cultural background is.
6:15
Speaker 3: And then specifically in cultural humility, and I think It
6:20
Speaker 3: is something I need to constantly be conscious of daily
6:23
Speaker 3: as well, because it involves a lifelong commitment to self-reflection
6:28
Speaker 3: and recognizing our own limitations and engaging patients as partners
6:34
Speaker 3: in understanding their values and beliefs. And I think healthcare,
6:39
Speaker 3: we're always in such a rush and it can be
6:41
Speaker 3: easy to, and not forget in the negative that we
6:47
Speaker 3: don't think it's important, but We have a zillion charts
6:50
Speaker 3: to do. We have a zillion tests to do. And
6:53
Speaker 3: it's easy to lose that out of perspective as well.
6:57
Speaker 3: And then, of course, solidarity and cultural humility, it all
7:01
Speaker 3: ties into medical ethics, which medical ethics brings that foundational
7:07
Speaker 3: principle guide in how to make decisions. And I think together,
7:12
Speaker 3: these concepts support more responsive, respectful, and equitable care by
7:19
Speaker 3: integrating ethical rigor with deep cultural awareness. And I think
7:25
Speaker 3: more so than ever, it's something we need to do
7:28
Speaker 3: because of the cultural migration and cultural shifts that we
7:33
Speaker 3: just see within our own country currently.
7:36
Speaker 2: Great point sort of situating this in the current social
7:39
Speaker 2: and political moment we were in. And thinking about the audience,
7:43
Speaker 2: we've got folks from all over the globe who listen
7:45
Speaker 2: to the podcast and send us notes and contribute and
7:48
Speaker 2: all that. But we always pay special attention to medical
7:51
Speaker 2: students because we've got a lot of future physicians and
7:53
Speaker 2: future healthcare practitioners really interested in this. And I think
7:56
Speaker 2: this is a point to flag with them. The shared
7:59
Speaker 2: humanity point, at least students at our university, my medical school,
8:01
Speaker 2: I teach at Hackensack Meridian School of Medicine, get a
8:04
Speaker 2: lot on dignity, because I'm very interested in the concept
8:07
Speaker 2: of dignity and as an approach that's different from autonomy.
8:11
Speaker 2: I think solidarity is just as, if not richer, and
8:14
Speaker 2: your points on shared humanity, I think are really well
8:17
Speaker 2: taken and so important now. And then the point about
8:20
Speaker 2: cultural humility, I suspect people picked up on it, but
8:24
Speaker 2: even the way that reflection on the concept of can
8:29
Speaker 2: change how persons interact, right?
8:30
Speaker 1: You didn't just give me a definition.
8:32
Speaker 2: You framed it in terms of your own kind of
8:34
Speaker 2: reflection and something you need to work at. And I
8:36
Speaker 2: just flagged that because I think that's something sort of sometimes,
8:40
Speaker 2: and you can jump in on this too as a
8:42
Speaker 2: fellow bioethicist, but sometimes, you know, we'll get students who
8:45
Speaker 2: show up, they take the ethics class, they take the
8:47
Speaker 2: exam and they're done. They're not changed by thinking through
8:52
Speaker 2: ethical challenges, but to take this cultural humility and shared
8:55
Speaker 2: humanity point seriously, it's going to change them.
8:58
Speaker 3: Yeah, absolutely. And I think my little motto is always,
9:02
Speaker 3: I do the family test. What would I want a
9:04
Speaker 3: family member of mine to experience as well? And of course,
9:08
Speaker 3: from my accent, you know, I'm not from the US either,
9:11
Speaker 3: but I've got a European background, a South African background
9:15
Speaker 3: as well. And we look at things similarly, but we
9:18
Speaker 3: look at things differently. And I think it's that uniqueness
9:22
Speaker 3: that we bring to the table. But it's a, like
9:26
Speaker 3: I said, a lifelong journey. engagement with ourselves. And if,
9:32
Speaker 3: to use your term, if the suits don't self-engage and
9:37
Speaker 3: think about it, it's easy that ethics becomes the tick box,
9:41
Speaker 3: which I never think it should be. It should always
9:45
Speaker 3: be a reflective exercise in trying to get to the
9:49
Speaker 3: greater good.
9:51
Speaker 1: And the.
9:56
Speaker 3: It is within a cultural thriller of cultural humility that
10:01
Speaker 3: we'll get to different good.
10:05
Speaker 2: Yeah, and given your expertise in communication as well, right?
10:09
Speaker 2: I mean, this all ties in so nicely. And the paper, again,
10:12
Speaker 2: we have a show notes page. We'll link to the
10:15
Speaker 2: paper there. But thinking about different kinds of perspectives and
10:18
Speaker 2: cultures across the globe, I.
10:20
Speaker 1: Imagine the more.
10:21
Speaker 2: folks bump into, you know, folks of different cultures and perspectives,
10:25
Speaker 2: the more our students engage with patients of different perspectives,
10:29
Speaker 2: that can only help their own cultural awareness, widening their views,
10:33
Speaker 2: and then really, I mean, sort of, I think, leads
10:36
Speaker 2: to greater opportunities to exercise humility.
10:39
Speaker 1: So this is great. This is really, really helpful.
10:41
Speaker 3: I think that is why solidarity is such an important
10:44
Speaker 3: ethical concept, because we teach a lot of our students
10:47
Speaker 3: at medical schools here in the US about the the
10:49
Speaker 3: four ethical principles, autonomy, non-maleficence, justice, beneficence. Although important, I
10:56
Speaker 3: think it is very limited in interaction with patients of
11:00
Speaker 3: other cultures. And that's why solidarity, I want to argue,
11:05
Speaker 3: we need to get back to humanity. Why cultural humility,
11:09
Speaker 3: understanding from different perspectives is so important in understanding patients
11:14
Speaker 3: from different walks of life, maybe not even just backgrounds,
11:18
Speaker 3: just walks of life. American born patients as well. So
11:24
Speaker 3: I think, yeah, I'm excited about where the field may
11:28
Speaker 3: be going in this sense.
11:29
Speaker 1: It's great.
11:30
Speaker 2: And it's a, I think at least for me, I'm, uh,
11:33
Speaker 2: not the greatest advocate of just sticking with the four principles.
11:37
Speaker 2: So I think this is a welcome move. I think
11:38
Speaker 2: it's gonna do a lot of work. Let's keep moving
11:41
Speaker 2: in terms of considerations of communication. You and other colleagues,
11:45
Speaker 2: and we'll post this paper too, wrote a really nice
11:48
Speaker 2: paper and have done some work around challenging conversations that
11:51
Speaker 2: can take place, right? especially in complex cancer care. And
11:55
Speaker 2: I'm thinking in particular about your work on difficult conversations, right?
11:59
Speaker 1: That's the phrase. So can you say more, but research.
12:02
Speaker 2: Work, your clinical work as a leader at your institution,
12:05
Speaker 2: sort of helping form new clinical ethicists, can you say
12:09
Speaker 2: more about difficult conversations and your approach to them?
12:14
Speaker 3: Yeah, I think I want to first start by double-clicking
12:18
Speaker 3: on the whole concept of difficult conversations. I think it's
12:22
Speaker 3: in the eye of the beholder as well, no conversation
12:25
Speaker 3: ought to be difficult. Conversations may be emotionally challenging, but
12:30
Speaker 3: ultimately we need to be okay by not being okay.
12:34
Speaker 3: And that is also a good, um, uh, psychological principle.
12:38
Speaker 3: So let's not see it as difficult as there are barriers,
12:43
Speaker 3: but it's difficult because I need to learn something as well.
12:46
Speaker 3: But I think, um, I've done a lot of work and, um,
12:50
Speaker 3: myself as well as colleagues, um, here at the University
12:54
Speaker 3: of Texas MD Anderson Cancer Center, as well as nationally
12:58
Speaker 3: and internationally on conversations in complex cancer care. And ultimately,
13:05
Speaker 3: we want to highlight the ethical and emotional depth, I think,
13:09
Speaker 3: of clinical communication. Again, clinical communication is very personal. It's
13:16
Speaker 3: very emotional, but there's a lot of ethics behind it
13:19
Speaker 3: as well. And we apply ethical principles, again, solidarity, cultural humility,
13:24
Speaker 3: those principles in how we have these conversations. And I
13:29
Speaker 3: think these discussions often involve the clinical communication. For it
13:36
Speaker 3: to be a good, solid piece of communication, we need
13:39
Speaker 3: to include things like prognosis, treatment possibilities, treatment limitations, end-of-life decisions,
13:48
Speaker 3: but we need or we require sensitivity and clarity. And
13:52
Speaker 3: I think oftentimes, and I see it here in the
13:57
Speaker 3: oncology space as well, a lot of our oncologists, and
14:00
Speaker 3: I'm not faulting anyone, but a lot of our oncologists
14:03
Speaker 3: have a long history with our patients. They've been the
14:06
Speaker 3: oncologists for five years. And they oftentimes talk about cure,
14:13
Speaker 3: how are we going to get to the end? How
14:14
Speaker 3: are we going to make things positive? And prognosis may
14:18
Speaker 3: be skewed, whereas all of a sudden there's a comorbidity.
14:23
Speaker 3: And then there's a, I call it sometimes denial, but
14:26
Speaker 3: respectfully used as well. It's hard for them to actually
14:30
Speaker 3: then start talking about limitations, what treatment can do and
14:34
Speaker 3: what treatment cannot do. And I think that is where
14:37
Speaker 3: a lot of our work is around. How do we
14:40
Speaker 3: make it easier for our providers, our physicians, our APPs
14:43
Speaker 3: to do it? So our approach is, emphasizes preparing our
14:47
Speaker 3: clinicians to navigate uncertainty. Because I think medicine, and especially
14:54
Speaker 3: in the era of personalized medicine, as well as the
14:59
Speaker 3: influence of AI in medicine, brings a lot of uncertainty.
15:03
Speaker 3: And we need to be okay with uncertainty. But how
15:06
Speaker 3: do we communicate uncertainty? I think that's important. How do
15:10
Speaker 3: we support our patients' values and address family dynamics as well?
15:15
Speaker 3: Because that's a real challenge. Not a challenge, but that's
15:19
Speaker 3: very real in the cancer world as well. Other bioethical
15:25
Speaker 3: consults oftentimes just focus on the patient. But in oncoethics,
15:30
Speaker 3: a term I like to use, and I think we
15:32
Speaker 3: need to start using more. In oncoethics, it is about
15:36
Speaker 3: the patient. but it's also very much about the family
15:40
Speaker 3: dynamics as well. Because a lot of patients don't want
15:44
Speaker 3: the proverbial give up for their loved ones because they've
15:48
Speaker 3: been on the journey for quite a while with them
15:51
Speaker 3: as well. So we need to incorporate that. And then
15:54
Speaker 3: I think ultimately ethical reflection is central to all of
15:59
Speaker 3: this to ensure we are honest, but that we preserve
16:03
Speaker 3: hope and not false hope, but redefining hope in the
16:08
Speaker 3: different stages of the treatment as well a lot of
16:14
Speaker 3: our work then revolve around the importance of timing as
16:19
Speaker 3: well and interdisciplinary collaboration but ultimately to create a space
16:25
Speaker 3: for patients for them to share their values timing i
16:29
Speaker 3: think That is vital. We need to be aware of
16:33
Speaker 3: when do we have what kind of conversation. Not all
16:37
Speaker 3: clinicians feel equipped enough. Therefore, why not involve clinical ethicists
16:43
Speaker 3: in help facilitate these conversations, as well as sometimes the
16:48
Speaker 3: best person to facilitate is perhaps a chaplain, because our
16:52
Speaker 3: patients really use a lot of spiritual grounding for their
16:57
Speaker 3: own decision making as well. So Ultimately, I think a
17:01
Speaker 3: lot of the work that we do, we want to
17:04
Speaker 3: help providers and patients to foster trust and to reduce
17:08
Speaker 3: moral distress and to promote compassionate, patient-centered care during some
17:15
Speaker 3: of the most challenging moments in a patient's life. I've
17:18
Speaker 3: said a lot, so basically summarizing it, I think our
17:22
Speaker 3: work revolves around how do we give skills or how
17:26
Speaker 3: do we help providers, oncologists, APPs, meet the patients where
17:32
Speaker 3: they are at and give them what they need a
17:36
Speaker 3: specific crossroad in their lives.
17:38
Speaker 2: Really, really helpful in thinking broadly about clinical ethics consultation
17:42
Speaker 2: and communication with patients about providers. And then I.
17:45
Speaker 1: Appreciate both the breadth of as you started.
17:47
Speaker 2: The answer and then sort of fine tuning it to
17:49
Speaker 2: what might specifically be needed in cancer related care. And
17:53
Speaker 2: so I'm not sure if this question is well posed,
17:55
Speaker 2: but I know that there are different approaches to clinical
17:58
Speaker 2: ethics conversations, to conversations around sort of challenges and And
18:02
Speaker 2: I want to get to language in a moment, and
18:04
Speaker 2: you touched on that, but some folks have a more
18:07
Speaker 2: activist kind of approach in terms of their consultation. Other
18:11
Speaker 2: folks seem to be a bit more like, I'm just
18:14
Speaker 2: facilitating and stepping back.
18:16
Speaker 1: And I'm curious if, not if there's a one-size-fits-all, but where....
18:21
Speaker 2: You fall if you're advising clinical ethic you know somebody
18:25
Speaker 2: interested in clinical ethics consultation where do you think folks
18:28
Speaker 2: should fall on that sort of moral commitment range is
18:31
Speaker 2: that well does that make i don't know if i've
18:33
Speaker 2: posed it well.
18:34
Speaker 3: No no no yeah yeah no no i understand what
18:36
Speaker 3: you um saying brian i think as i often say
18:41
Speaker 3: to our trainees and um and actually here at md
18:45
Speaker 3: anderson we're uh six clinical ethicists on faculty as well
18:49
Speaker 3: It really depends on personality. So from my perspective, and again,
18:55
Speaker 3: it comes from my training as a psychologist as well.
18:58
Speaker 3: It may differ from other people as well. So again,
19:00
Speaker 3: I agree. No one shoe fits all, but my approach
19:05
Speaker 3: falls between peer facilitation and strong activism. And I grounded
19:11
Speaker 3: again in solidarity, right? In my opinion, ethics consults, um,
19:16
Speaker 3: or consultants should not be neutral to injustice or suffering,
19:20
Speaker 3: but we should stand with patients and care teams in
19:23
Speaker 3: seeking ethically sound, compassionate outcomes. And sometimes it means I
19:28
Speaker 3: need to facilitate more and I need to ask questions
19:32
Speaker 3: more and I need to delve a little bit more.
19:36
Speaker 3: And sometimes it means I need to help the patient
19:40
Speaker 3: get their opinion or their voice across as well. So
19:43
Speaker 3: I think it's a good healthy balance in between and
19:47
Speaker 3: again like I said it's based in solidarity and here
19:52
Speaker 3: it means moral engagement so making sure we accompany our
19:57
Speaker 3: patients and our clinicians while remaining attentive to power dynamics
20:02
Speaker 3: and inequalities as well because the reality is any clinical
20:07
Speaker 3: encounter has a power dynamic and And we need to
20:10
Speaker 3: make sure that all parties are equal and that all
20:14
Speaker 3: voices are heard as well. So rather than imposing any conclusions,
20:19
Speaker 3: I think the balanced approach or my balanced approach in
20:24
Speaker 3: any way integrates clinical analysis with relational support. And I
20:29
Speaker 3: think that's the important thing and relational for our patients,
20:33
Speaker 3: but also for our care teams.
20:35
Speaker 2: Again, a great answer and ties into what you noted
20:37
Speaker 2: earlier about the importance of relationships and who the patients
20:41
Speaker 2: and members of the care team might have relationships with.
20:44
Speaker 2: And you mentioned there are certain context patients conversations where
20:48
Speaker 2: a chaplain is essential, right, for the kind of facilitation needed.
20:52
Speaker 2: For listeners using the podcast, we had Bob Glitzman on
20:58
Speaker 2: talking about sort of chaplains, and he had a new
21:00
Speaker 2: book at the point, it's probably a year ago or so,
21:02
Speaker 2: somebody can check now. And so we're sort of weaving
21:05
Speaker 2: together a couple threads here, which is great. So Nico,
21:08
Speaker 2: in my own work, I've thought a lot about dignity,
21:10
Speaker 2: and you know this, because we've chatted about it, and
21:12
Speaker 2: you and colleagues at MD Anderson were super helpful in
21:14
Speaker 2: sort of some of my newer thinking on dignity and cancer.
21:19
Speaker 1: When I was doing some research in.
21:21
Speaker 2: This space, I was struck with the Everybody who works
21:24
Speaker 2: in cancer ethics and oncoethics knows already, but I was
21:27
Speaker 2: struck by how important the language is and how much
21:30
Speaker 2: pushback there is to some of the militaristic, and I
21:34
Speaker 2: think that's the right framing, militaristic language and responses. So
21:38
Speaker 2: there's fighting cancer, there's beating cancer, there's not giving up,
21:41
Speaker 2: there's not succumbing. You almost think you're covering a 1950s
21:44
Speaker 2: boxing match or something, right? With the pugilists, not the patients.
21:48
Speaker 2: I know this is a hot topic. I know it's controversial.
21:50
Speaker 2: Different folks have views on language.
21:51
Speaker 1: Could you just sort of underscore.
21:53
Speaker 2: Wherever you fall on this, how important language is in
21:57
Speaker 2: oncoethics and in cancer care, both for patients and for
22:01
Speaker 2: clinicians and providers?
22:03
Speaker 3: Yeah, it's something I hear daily as well from our patients,
22:07
Speaker 3: from our oncologists. And I think language is profoundly important
22:12
Speaker 3: in oncoethics because it shapes how patients understand the illness.
22:18
Speaker 3: It gives us an idea of their identity and their choices.
22:22
Speaker 3: And militaristic metaphors, like you said, fighting or beating cancer,
22:26
Speaker 3: I think for some patients, it can help motivate them.
22:30
Speaker 3: Whilst for others, it is a burden or maybe a
22:34
Speaker 3: sense of failure if outcomes are poor. I'm not convinced
22:38
Speaker 3: we should have one or the other. I would argue
22:41
Speaker 3: that we need to use language that aligns with patients'
22:44
Speaker 3: values and experiences rather than imposing a dominant narrative and
22:49
Speaker 3: a narrative that is very academic, that's very theoretical. And
22:53
Speaker 3: we should never be using it if that is what
22:56
Speaker 3: the patient uses to share part of the identity. I
23:00
Speaker 3: remember a few months ago, I had a patient and
23:06
Speaker 3: military background, and that was the language he wanted to use.
23:10
Speaker 3: And that is how he identified it. And I could
23:13
Speaker 3: have gone in and go, okay, yeah, let's talk about fighting.
23:16
Speaker 3: Let's talk about how we take care. It would have
23:20
Speaker 3: not been, I wouldn't have been in solidarity with him.
23:24
Speaker 3: And I think that is the main driver here. I
23:27
Speaker 3: think ethically attentive communication requires sensitivity, flexibility, and reflection on
23:35
Speaker 3: how words can influence meaning, hope, and dignity. And by
23:39
Speaker 3: choosing language carefully, I think clinicians can foster more authentic,
23:44
Speaker 3: compassionate conversations that respect diverse ways of making sense of
23:49
Speaker 3: illness and support truly patient-centered care. So I'm not one
23:55
Speaker 3: that will argue it needs to be this or that.
23:57
Speaker 3: I think, again, For me, it's all about being patient-centered.
24:02
Speaker 2: This is great because these are sort of a big question.
24:04
Speaker 2: And I appreciate both the ethical sort of grounding of
24:08
Speaker 2: solidarity and how that plays out in communication and sort
24:12
Speaker 2: of informs the malleability and flexibility given patient-centered care.
24:15
Speaker 1: Are there instances where.
24:18
Speaker 2: Clinicians, if you're coming in as a clinical ethicist, if
24:21
Speaker 2: you're working with patients and clinicians, right, and the clinicians
24:24
Speaker 2: are used to a certain kind of language or they
24:27
Speaker 2: themselves prefer a certain kind, and the patient prefers or
24:32
Speaker 2: needs a different.
24:32
Speaker 1: Kind, is there a way to join the two or
24:36
Speaker 1: merge it? I guess this is, I mean, it's a
24:37
Speaker 1: huge question, right? It's the solidarity question.
24:39
Speaker 2: What do you do when there's disagreement, given the sort
24:43
Speaker 2: of different perspectives, walks of life, right?
24:45
Speaker 1: And everybody, you know, you want everybody to get along.
24:48
Speaker 3: Okay, two levels of questions, two questions in one here.
24:52
Speaker 3: So the first one being, if patients and physicians have
24:56
Speaker 3: different words that they used, Again, and it's maybe my
25:00
Speaker 3: approach as well, any ethical consult I'll go on. I'll
25:04
Speaker 3: first go on a fact-finding mission, and I want to
25:07
Speaker 3: understand the reference and the context of our patients, what
25:12
Speaker 3: they understand, the language they use, the words they use
25:15
Speaker 3: as well. And then because I think solidarity applies to patients,
25:19
Speaker 3: but it also applies to our care providers as well.
25:22
Speaker 3: I don't think it's just patients. It needs to be both.
25:25
Speaker 3: And then I would actually have individual conversations with our providers.
25:30
Speaker 3: And where I see this play out specifically is in
25:33
Speaker 3: the euphemisms. And we've got an upcoming publication on euphemisms
25:38
Speaker 3: around death and the words we use around death as well.
25:43
Speaker 3: And some cultures really shy away from using the D word,
25:49
Speaker 3: the death word, dying. And for some of our patients
25:52
Speaker 3: and some cultures, they do not want that word to
25:55
Speaker 3: be used either. And then I think that is the
25:57
Speaker 3: role of the ethicist to be informed, never go in blindly,
26:01
Speaker 3: be informed of the patient and their perspective and wishes
26:05
Speaker 3: and language preference, that of the clinician, and then to
26:09
Speaker 3: really facilitate it accordingly as well. Again, to the second
26:14
Speaker 3: part of your question about Disagreement. I think disagreement in
26:20
Speaker 3: cancer care, I think it's expected and meaningful. Actually, it's
26:25
Speaker 3: a meaningful part of ethical complex situations. And rather than
26:30
Speaker 3: seeing it as something we need to eliminate quickly, it
26:34
Speaker 3: is an opportunity to understand the richness of the issue
26:39
Speaker 3: at hand as well. And again, if anyone tells me
26:43
Speaker 3: you can solve an ethical issue in 20 minutes, I
26:46
Speaker 3: would love to have your little framework around it because
26:50
Speaker 3: I do not think we can do it. We need
26:52
Speaker 3: to delve more into the richness of culture as well.
26:57
Speaker 3: And so I always try and practice. And back to
27:00
Speaker 3: the first question, I try to structure space for dialogue
27:05
Speaker 3: where all parties feel heard. We carefully pay attention to
27:10
Speaker 3: underlying values, emotions, and again, the power imbalance as well.
27:16
Speaker 3: And I do it by slowing down the conversation. Again,
27:21
Speaker 3: I think if we start slowing down conversations, pausing, allow
27:26
Speaker 3: for silence, allow for reflection in the conversation as well,
27:31
Speaker 3: then we're going to get to value-based choices. And I
27:37
Speaker 3: think oftentimes, and it's something I do with my own
27:40
Speaker 3: team as well, We need to distinguish between what is
27:44
Speaker 3: factual and what is emotional and make sure we address
27:48
Speaker 3: the facts, not negating the emotional, but the facts that
27:52
Speaker 3: are important in decision-making as well. So I think rather
27:57
Speaker 3: than trying to force a consensus, the goal needs to
28:01
Speaker 3: be alignment and workable accommodations. And I think it's easier
28:09
Speaker 3: said than done. Because we have personalities and sometimes we
28:13
Speaker 3: have big personalities in these rooms as well. But we
28:17
Speaker 3: need to stay humble and cultural humility. We need to
28:21
Speaker 3: stay curious. listen deeply.
28:24
Speaker 2: Again, another full circle answer. And I threw a huge
28:26
Speaker 2: question at you, so I appreciate it. But to underscore
28:29
Speaker 2: one of the helpful points, I mean, for all, but
28:31
Speaker 2: especially for our future physicians. And I think this goes
28:34
Speaker 2: back to the conversations that I call difficult. I guess
28:36
Speaker 2: we probably don't call them difficult conversations anymore, but there's
28:39
Speaker 2: those conversations that can be challenging.
28:41
Speaker 1: Because we may not know enough.
28:43
Speaker 2: Is this point about disagreement and disagreement being, to use
28:47
Speaker 2: your phrase, meaningful, right? So It's not only that the
28:51
Speaker 2: ethics issue can't be addressed in 20 minutes by checking
28:54
Speaker 2: a couple boxes. It's also that sometimes we have to
28:57
Speaker 2: live in that uncomfortable space, live with that disagreement.
29:02
Speaker 1: You're doing work on this.
29:03
Speaker 2: There's a bunch of folks with Georgia Pazzi, who was
29:07
Speaker 2: on the podcast previously. Listeners will know who's thinking about
29:11
Speaker 2: AI and disagreement. I'll push on AI in a moment.
29:13
Speaker 2: Mike Parker at Ethox at Oxford has a ton. So
29:16
Speaker 2: there's a lot of bioethicists really thinking more about the
29:20
Speaker 2: fruitfulness of disagreement. I think you framed it really, really well.
29:24
Speaker 2: We're not just trying to, oh, let's resolve this quickly
29:26
Speaker 2: and move forward.
29:27
Speaker 1: It can be meaningful. And so that's really helpful.
29:31
Speaker 2: I want to jump to AI because you can't sort
29:33
Speaker 2: of talk about metaglassics now without some kind of gesture
29:36
Speaker 2: at AI. I'll give you AI and then I'll give
29:38
Speaker 2: you one to get you out on. AI is everywhere
29:40
Speaker 2: in medicine. How are you thinking about it in oncoethics?
29:43
Speaker 2: I mean, given the potential advances and benefits it could
29:47
Speaker 2: offer to patients and clinicians, think about its rollout application
29:50
Speaker 2: in cancer care.
29:51
Speaker 1: Are there.
29:52
Speaker 2: specific ethics issues for or specific issues in oncoethics around AI?
29:59
Speaker 2: Or is it just sort of the general concerns that
30:01
Speaker 2: lots of folks have in this space?
30:03
Speaker 3: Good question. And I think my own approach is AI
30:07
Speaker 3: in cancer care, I approach it with cautious optimism. Maybe
30:13
Speaker 3: that's the best way to frame it. I'm optimistic because
30:16
Speaker 3: I think it does hold a lot of potential good.
30:20
Speaker 3: And I recognize this potential for enhancing diagnosis, personalized treatments,
30:27
Speaker 3: and also support clinical decision-making. However, and this I need
30:32
Speaker 3: to underline, I think we need to be ethically vigilant.
30:37
Speaker 3: And key concerns that I currently have in the space
30:42
Speaker 3: of AI is the bias in algorithms, transparency in decision-making processes,
30:50
Speaker 3: And then, of course, the risk of undermining patient autonomy,
30:54
Speaker 3: especially if AI outputs are uncritically accepted. And I think
30:59
Speaker 3: that is where my biggest concern is that maybe clinicians,
31:04
Speaker 3: I haven't really seen it here at MD Anderson, but
31:07
Speaker 3: I can imagine in other places where you've got limited time,
31:11
Speaker 3: you need to see 20 more patients that the evaluation
31:16
Speaker 3: of the output is may not be critical. And that
31:19
Speaker 3: worries me, honestly. I'm also concerned about the depersonalization, the
31:25
Speaker 3: losing that human connection that is so central to oncology care.
31:30
Speaker 3: Because again, oncology care or oncoethics is different to other
31:34
Speaker 3: kinds of ethics because of the longitudinal relationship we have
31:38
Speaker 3: with our patients. And AI cannot break it down. It
31:42
Speaker 3: needs to augment the not replace the care relationship between
31:49
Speaker 3: the provider and the patient. And I think AI can
31:55
Speaker 3: guide or can create frameworks for us, but it should
31:59
Speaker 3: never replace clinical decisions per se. And I think we
32:04
Speaker 3: need to keep ourselves, we need to keep our organizations
32:08
Speaker 3: accountable as well, and that we constantly respect personhood. to
32:14
Speaker 3: ensure we support compassionate care. I think that is the
32:17
Speaker 3: thing for me. All things equal, always we need to
32:20
Speaker 3: have compassionate care, but so much so within the oncology
32:25
Speaker 3: space as well.
32:26
Speaker 1: It fits really well.
32:27
Speaker 2: I mean, it I'm sure folks are trying to put
32:29
Speaker 2: sort of the consistency throughout, again, with that basis in solidarity.
32:33
Speaker 1: Nico, this was super helpful. Thank you for joining me.
32:35
Speaker 2: Before I let you go, for folks who really enjoyed
32:37
Speaker 2: the conversation, we'll post the articles in our show notes page.
32:41
Speaker 1: But what's next for you?
32:43
Speaker 2: Is there a big talk, a paper, something that you're
32:47
Speaker 2: excited that's coming out, some new work that we can
32:49
Speaker 2: point listeners to if they want to hear more from you?
32:51
Speaker 3: There isn't a book on the horizon, let me say that.
32:55
Speaker 3: But in my new role as Associate Vice President here
33:00
Speaker 3: at MD Anderson, a lot of my energy is going
33:03
Speaker 3: into systemic changes. And I'm also very active at a
33:08
Speaker 3: national level for advocating for better ethical care, especially within
33:14
Speaker 3: the rural setting of America as well. Because I think,
33:20
Speaker 3: and again, not that I'm arguing care in rural America
33:23
Speaker 3: isn't ethical, but But how can we help providers, clinicians
33:27
Speaker 3: develop that? So, yeah, like you say, a lot of
33:30
Speaker 3: my contributions currently are in the form of journal articles.
33:34
Speaker 3: And then I'm often invited by healthcare systems to help
33:39
Speaker 3: think through the critical importance of communication. Because sadly enough,
33:44
Speaker 3: the reality is, And it's actually staggering statistics that medical
33:49
Speaker 3: knowledge now doubles every 70 days. Consequently, our medical students
33:56
Speaker 3: are inundated on facts, facts, facts. And sometimes, thank goodness,
34:02
Speaker 3: we still have space in the curricula to teach them ethics.
34:06
Speaker 3: But communication skills are not always front of mind for
34:12
Speaker 3: a lot of these curricula either. And that is where
34:15
Speaker 3: I'm doing a lot of work with health care systems
34:18
Speaker 3: as well to help them think through how do we
34:21
Speaker 3: do it. And even at an undergrad level as well,
34:25
Speaker 3: because I think once a student enters medical school, there's
34:29
Speaker 3: a huge amount on their plate. We need to start
34:32
Speaker 3: in pre-med in developing these skills. And I'm excited that
34:37
Speaker 3: I'm actively involved in a few undergrad programs nationwide. in
34:43
Speaker 3: helping people think through this. So yeah, I think you
34:47
Speaker 3: follow me on LinkedIn and most of the things I do,
34:50
Speaker 3: I post there, but as always, anyone can reach out
34:54
Speaker 3: to me. I'm always happy to engage in conversations.
34:57
Speaker 1: Excellent. You really appreciate it.
34:59
Speaker 2: And we'll make sure we have, you know, the articles
35:01
Speaker 2: and other links to you. So folks can make sure
35:03
Speaker 2: they stay, stay involved. So again, thanks so much for
35:07
Speaker 2: joining me today. I really appreciate it.
35:08
Speaker 3: Appreciate the time, Brian, and keep up the good work.
35:11
Speaker 3: Appreciate you and all the good things you do as well.
35:15
Speaker 1: Many thanks. This series is a production of the Health
35:17
Speaker 1: Ethics Lab, and I am grateful to colleagues in the
35:20
Speaker 1: Department of Medical Sciences, the IHS Library, and the Hackensack
35:23
Speaker 1: Meridian School of Medicine for making this collaboration possible. To
35:27
Speaker 1: learn more about our work or to engage with the
35:29
Speaker 1: series' content, reach out to me, Brian Pilkington, at brian.pilkington
35:34
Speaker 1: at hmhn.org.