Full transcript
0:01[music]
0:06[music]
0:17Hello everyone. I welcome you once again
0:19to the course on introduction to medical
0:21humanities. Uh this is lecture four of
0:24week one and uh in this particular
0:27lecture we are going to discuss uh three
0:30major theorists who shaped the
0:34entire medical humanities discourse so
0:37to say. They are uh considered to be the
0:39foundational theorists of uh this
0:42particular field of study. In the
0:45earlier uh lecture we had discussed many
0:49key words that are associated with
0:51medical humanities and this particular
0:54unit uh introduces you to the broad
0:58theoretical aspect of medical
1:00humanities. Uh following which of course
1:03we will focus our uh entire shift to the
1:08Indian context. But for the time being
1:10uh let me go ahead and introduce you to
1:12these three theorists.
1:15uh we begin with uh Susan Sag
1:19and follow it up with Arthur Clinman and
1:22Rita Sharon. Now all these theorists
1:27what they have done is they have
1:29reinterpreted the the gaze of medicine
1:33and why do I say that? because they took
1:37many other considerations like social,
1:42like narrative competence, uh uh the
1:45kind of stigma that is associated with a
1:48particular disease, how does a person
1:50respond to a particular disease, all
1:52these aspects into the discourse of
1:55medical humanities. And therefore their
1:58theories became central to how in
2:01medical humanities we started analyzing
2:04the text that had actually depicted uh
2:07some of uh the diseases. We will begin
2:11then by Susan Sag illness as metaphor
2:15arthurman's the illness narrative and
2:18Rita Cheron narrative medicine honoring
2:21the stories of illness. In all these
2:24three texts there are there is probably
2:28one thing which is important that at all
2:32point of time we have to remember that
2:35sickness is not just a medical story or
2:38a medical narrative. It is a human story
2:42and therefore it has to be seen in
2:45totality of the experience and not just
2:48the disease alone. These texts have
2:51western origins like I said earlier but
2:54the implications are universal and thus
2:58relevant to Indian context as well. Let
3:01us begin with Susan Sag illness as
3:04metaphor which was published in 1978.
3:07Now for her the journey was very
3:11personal.
3:12She herself
3:14went through
3:17a lot of effect of what you can call a
3:20medical condition and uh therefore she
3:26used that opportunity that experience to
3:29discuss it in her book uh illness as
3:32metaphor. In fact, she suffered from
3:37breast cancer. And
3:40the moment we say cancer, it decodes
3:44different kind of meanings. When you ask
3:47a clinician or a surgeon or an
3:50oncologist to be very precise or an
3:53enkosurgeon,
3:55they will have different degrees of
3:58where they can demarcate a cancer. But
4:02in the narratives of Susan Sag
4:05she talks about how the fear of cancer
4:10or the word in itself is having a very
4:15fatal kind of repercussion.
4:19So in this particular book she tries to
4:23separate the metaphors of language used
4:27for illness.
4:29She says that societies impose punitive
4:33or sentimental fantasies upon certain
4:36diseases, transforming physiological
4:40conditions into moral allegorories. Her
4:43opening phrase, illness is the night
4:46side of life, a more honorous
4:49citizenship,
4:50highlights humanity's dual existence in
4:54the realms of health and sickness. The
4:57metaphors used for the illness
4:59stigmatize the patient and put burden of
5:03illness purely and on them.
5:07Susan also contends that extremes of
5:11romanticizing tuberculosis or demonizing
5:15cancer obscures the reality of the
5:18disease and demoralizes the patients
5:21with an interference with rational
5:23health care practices. To sum up Sark's
5:26thought in her own words, illness is not
5:30a metaphor and that the most truthful
5:33way of regarding illness and the
5:35healthiest way of being ill is one most
5:39purified of most resistant to metaphoric
5:43thinking. What does this mean? that
5:46there are several kinds of realities
5:50of diseases and metaphors just
5:54intensifies
5:55those repercussions.
5:58In fact, u in literary text too, Sontag
6:02observes that when dying came to be
6:06regarded in advanced industrial
6:08societies as shameful unnatural event.
6:12So the disease which is widely
6:14considered a synonym for death has come
6:17to be seen as shameful something to
6:20deny.
6:21This explains why despite the
6:23advancement in medical treatments of
6:26cancer the idea of cancer is often
6:29associated with death arousing fear of
6:32the disease. Historically tuberculosis
6:36exemplified romanticization during the
6:4019th century. authors used to get rid of
6:43the characters they no longer needed
6:46like little Eva in Uncle Tom's Cabin or
6:50Paul Dombi in Dombian and Sons. However,
6:54cancer does not get a poetic dissolution
6:57and gets painted as a shameful invasion
7:00of alien cells escalating like a demonic
7:04pregnancy in the illness metaphors.
7:06Willham reach bioenergetic theories
7:09imply that the victim's repressed
7:11emotions cause this disease and you will
7:15see that when we discuss stigma, shame
7:18and silence, you can categorize
7:20different kind of diseases within these
7:23categories. But there are so many
7:26diseases that are not so impactful in
7:30terms of just their medicinal value or
7:32clinical value. But they there is so
7:35much of stigma and shame. So and pretty
7:38much hush- hush kind of a situation and
7:42therefore SAG made it a point to bring
7:44it to the forefront because she thought
7:47that it was an important discourse uh
7:50that was needed in terms of addressing.
7:56Then when we move on to Arthur Clinman,
7:59we find that his work, the illness
8:03narrative published in 1988
8:06uh is
8:08important because in this text he
8:11distinguishes between illness and
8:13disease.
8:14A medical practitioner needs more than a
8:17diagnosis to understand illness. They
8:20need to listen to the patients illness
8:22narratives. His journey began with a
8:267-year-old child who was being treated
8:28for severe burns and had to go through
8:30excruciating pain when burned flesh was
8:34stripped off her body. He could not
8:36distract her from that pain until and
8:40unless he made it a point to discuss
8:44that pain through her in her own words.
8:47when she started describing her pain. It
8:50was then that he realized how relevant
8:53listening to patients experience is in
8:56biio medicine. about that incident. He
8:59says and I am quoting,
9:02"She taught me a grand lesson in patient
9:04care that is
9:07possible to talk to patients even those
9:11who are most distressed about the actual
9:13experience of illness and that
9:16witnessing and helping to order that
9:18experience can be of therapeutic value.
9:20And if at any point of time you have
9:23seen anesthesia being given that is
9:27there where they begin. In fact if you
9:29also have happened to go to a clinic for
9:31an injection they will ask you simplest
9:34of questions. Where do you study? What
9:37is your favorite subject? Which is your
9:39favorite song? or maybe to know more
9:41about you but also to not just distract
9:45you from the pain is what I meant but
9:47primarily to take into other aspects of
9:50your narrative into what you can call
9:52the illness narrative as well. So
9:54Kleenman talked about it in the first go
9:57in 1988 and before discussing
10:01uh the illness narrative he
10:03distinguished between disease and
10:05illness and he says and I quote him
10:08disease is what practitioners have been
10:10trained to see through the theoretical
10:12lens of their particular form of
10:15practice.
10:16Whereas illness refers to how the sick
10:19person and members of the family or
10:21wider social network perceive, live with
10:24and respond to symptoms and disability.
10:27From the point of view of a health care
10:30professional, a disease represents an
10:33abnormal bodily alteration which is
10:36manageable through diagnosis and
10:38intervention of medicine. However,
10:41illness constitutes the patients deeply
10:43subjective and personal experience. It
10:46impacts an individual's personal,
10:48familial and cultural experiences and
10:51clin illustrates
10:53illness as culturally constructed and
10:55polymic. He says that beliefs, values
10:59and practices of a patient and their
11:01surroundings impact the healing and
11:04experiences of the disease.
11:06>> [snorts]
11:06>> The distinction becomes more
11:08consequential in the realm of chronic
11:11illness as acute diseases often lend
11:14themselves to cure but chronic
11:16conditions occupy a different temporal
11:19space. In that sense, chronic illness is
11:22not an episode but a condition of living
11:26and Clintman argues that nothing so
11:28concentrates human experience as serious
11:32illness. Further, Clintman also argued
11:36that the importance of medical history
11:40as told by patients is the way in which
11:47the doctor decodes or makes the
11:50diagnosis.
11:52Medical history as told by patients can
11:56be clumsy and poorly implemented.
12:01But even then it is a chance for
12:04clinician to understand or to make that
12:07particular diagnosis visav that patient.
12:11Listening to the patients actually or
12:14the narrative that the patients dis make
12:19helps the doctor to understand
12:22what is the experience of the patient.
12:25Clinman says that one should be worsted
12:27in deciphering the random stories and
12:30experiences shared by these patients.
12:33Someone who listening to those narrative
12:35should be able to assign meanings to the
12:37components of the story and convert it
12:40into an evaluative narrative that helps
12:42in better understanding of the patient.
12:45He says, and I quote, "When the patient
12:48under examination disroes to expose a
12:50body covered with ugly scars of eczema
12:53or with raw red flaking plakes of
12:56cerosis, the practitioner should
12:58recognize that shame, hurt, anger,
13:02despair, or other constellations of
13:05feeling probably present. Illness
13:08narratives are therefore not ornamental
13:11stories layered on top of biological
13:13facts but they are mechanisms of
13:16survival and therefore become both
13:18socially patterned and biographically
13:21distinctive. He also introduced uh the
13:25explanatory model of illness which
13:28initiates some crucial questions.
13:32the questions that you can see on your
13:35screen.
13:37What is the nature of the problem?
13:40Why has it affected me? What treatment
13:43do I desire? What do I most fear about
13:46this illness and its treatment? Now
13:50these questions are extremely important
13:54when you think about
13:58illness because when you ask the patient
14:02what caused them illness, what do they
14:04fear most and how it has affected their
14:07life, it opens up the possibility of
14:11interaction of different kind. Clintman
14:14argues that asking what the patient
14:17believes
14:19caused them the illness is what they
14:23fear most. The goal is not to abandon
14:27biomedical knowledge but to create a
14:30kind of a shared knowledge, a shared
14:33kind of understanding that is inclusive
14:36of both the practices that respects both
14:40the perspectives.
14:42We now move on to Rita Shahon and her
14:45book narrative medicine honoring the
14:48stories of illness is extremely
14:51important when it comes to medical
14:53humanities because she brought in the
14:57concept of narrative medicine
15:00and according to her definition
15:04it is defined as medicine practiced with
15:07the narrative competence to recognize
15:10absorb interpret and be moved by the
15:13stories of illness. Now, narrative
15:16competence in that sense means an
15:19ability to listen deeply and understand
15:22illness not just as human biology but as
15:26human experience. Sharon argues that
15:29contemporary medicine lacks singularity,
15:32humility, accountability, and empathy.
15:35And therefore by developing narrative
15:38competence, health care professionals
15:40can offer more individualized and
15:43ethically grounded care while fostering
15:46meaningful healing relationships. She
15:49further talks about what happens in the
15:52scope of narrative competence. Uh if you
15:55see uh this particular quote which
15:58broadly sums up why it is important for
16:01the clinicians to listen to the other
16:05domains of illness apart from just the
16:09illness that one is talking about. She
16:12says that listening that goes on in the
16:16clinical setting qualifies as a
16:19consequential reception of
16:21autobiography. So which means that if a
16:24person is narrating the
16:28illness that the person is suffering
16:30from and discussing different other
16:33aspects of its symptoms and reflections
16:37the listening is not just then clinical
16:41but it helps in the diagnosis.
16:46She also says that many times you come
16:49across a situation in which the
16:51narrative of illness gets reflected in
16:54the form of bodily symptoms absent in
16:57the stories of the patient. When these
17:00two messages are in conflict, it becomes
17:03difficult for the clinicians to choose
17:05which one to focus on. And this is where
17:08the narrative competence comes in. In
17:11fact, uh in some of uh the lectures that
17:14I take up later on where I discuss uh
17:17mental health, I will discuss this
17:20particular aspect of Retita Shaon in
17:23great detail because uh I I take up
17:27short stories or I take up cinematic
17:30narrative in which
17:33the patients are saying or expressing a
17:37physical symptom but It has nothing to
17:41do with the physical condition. In fact,
17:44it has to do with mental condition. Uh
17:47and that is what these short stories
17:49reflect to go beyond what can be said as
17:54symptoms and look into what has shaped
17:58or what has gone into the making of that
18:02symptom which may not be physical. So we
18:05we take up those uh uh uh narratives
18:07later on but for the time being it is
18:10important for you to understand that
18:12narrative competence is primarily about
18:17not just the narrative that is
18:19associated with the medical condition
18:21but more than that the a story is also
18:24associated with this and the clinicians
18:28ability to tap that narrative and
18:30negotiate with it. In fact, um Sharon
18:33also came up with the idea of close
18:35reading. Uh literature students must
18:38have uh read about this term in a very
18:42different context but in the context of
18:44medical humanities. Uh it it is similar
18:47but not same. Uh what is it then? So it
18:51in terms of Sharon, she aims to equip
18:54medical students with skills to open up
18:57the stories to their patients. And that
18:59is why she says that close reading,
19:02which is careful and sustained reading
19:05where the readers focus on the written
19:07text and other literary aspects attached
19:09to that text such as form, structure and
19:12syntax become important. She talks about
19:15five-fold approach to close reading.
19:18Frame, form, time, plot, desire. Where
19:22frame is
19:24locating the space of the narrative,
19:26which means where it began. The form is
19:30about the genre, structure, narrator,
19:33metaphors, illusions, dictions, maybe
19:36other things like poetry form, literary
19:38form. The temporality is about
19:44comprehending plot or multiple story
19:47lines.
19:49The plot also is about what requires
19:54action while discussing narratives of
19:57illness. And finally, the close reading
20:01reveals the desire of the patient to the
20:04clinician. The unsaid wishes, goals or
20:07motivations that impact them. The
20:10understanding of the desire of the
20:12patients help in gaining clarity of
20:14their issues and a better framework for
20:16their treatment. In fact, all of us, I
20:20I'm sure with no exception, have gone to
20:23doctors at one point of time or other
20:25for something uh related to us or to our
20:29family members or to our friends. And we
20:32will realize that somebody who has just
20:37listened to us for a very brief period
20:39and not very carefully we do not find uh
20:45that particular clinician emotionally
20:48very satisfied. Maybe clinically yes but
20:51we feel that oh I wish the person had
20:53given me a little more time and somebody
20:56who listens to you uh carefully you make
20:59a repeated visit again again and again
21:01is what I can say. So close reading is
21:03something that she said and she said
21:05that when you discuss the patient doctor
21:09uh relationship and the narrative in
21:12between close reading is a method we can
21:14follow.
21:16Then uh she talks about these three
21:19concepts uh within the scope of uh how
21:24clinical practitioners
21:27should kind of go ahead and the
21:29narrative that is woven there. Uh the
21:31attention, representation and
21:34affiliation. Now these are important
21:37terms because in attention Sharon
21:39suggests a way of becoming a better
21:42receptive vessel for the narrative by
21:45emptying the self and accepting the
21:47patient's perspective and instances with
21:51narrative training.
21:53One can achieve this state of attention
21:56letting us both hear and answer the
21:58summons. In narrative medicine, a
22:02clinician needs to represent what they
22:04have witnessed because writing what has
22:07been observed sharpens perception and
22:10helps in discovering thoughts and
22:12feelings regarding the case.
22:15Sharon highlights that when health
22:17professionals write in whatever genre
22:20and diction they choose about clinical
22:21experiences, they as a matter of course
22:24discover aspects of experience that
22:27until the writing were not evident for
22:29them. The cycle of attention and
22:32representation creates a contact between
22:34the clinician and the patient and
22:36between clinicians themselves which
22:38leads to their affiliation. It creates a
22:41sense of empathy and connection between
22:43patient and doctor. Increases
22:45understanding amongst clinicians and
22:48builds a community of caregivers.
22:52To uh further explicate this idea of
22:56attention, representation and
22:58affiliation, she developed something
23:01that she refers to as parallel charts.
23:06So if you look at this particular
23:10parallel chart, she says that it came
23:12out as a teaching tool in 1993. But what
23:15does it do? It aims to recognize more
23:18fully what their patients endure and to
23:21examine explicitly their own journeys
23:25through medicine.
23:28So what she's saying that in parallel
23:32charts the non-technical language
23:36captures the personal and metaphysical
23:39dimensions of meaning for both the sick
23:42person and those caring for the sick
23:45person. So when you want to understand
23:49the suffering of the patient
23:51empathetically
23:53using the narratives of their illness,
23:56these parallel charts come handy and
23:59that is why she developed this concept
24:02of parallel charts and she began using
24:05it as a teaching tool.
24:08Finally, uh, all these three theorists
24:13shape what you can
24:16find in medical humanities as a
24:19foundational theoretical concept.
24:23When it comes to Susan Santag, we come
24:26across how the language surrounding
24:29disease reminds us of the power of
24:32metaphors and therefore calls for
24:35clarity and dignity in care.
24:38When you come to Arthur Clinman, the
24:41basic idea is the difference between
24:43disease and illness.
24:47It asks practitioners to listen deeply
24:49and recognize the suffering of the
24:51patient.
24:53And finally when it comes to Rita Sharon
24:56she talks about listening using the
24:59narrative competence.
25:01She gave us tools like close reading,
25:04parallel charts, the idea of attention,
25:07representation and affiliation
25:10in
25:11the way we reimagine medicine as a
25:14relational, interpretative and moral
25:18practice of not just storytelling but
25:22also way of knowing medicine.
25:26Here is where I will stop. In the next
25:29lecture, we will move our focus to
25:32Indian context and uh hopefully uh more
25:37familiar ground to tread on. Thank you
25:39so much.