Full transcript
0:04[music]
0:09[music]
0:17Hello everyone. I welcome you to my NPTL
0:20course introduction to medical
0:21humanities. We are at lecture 37 and in
0:25this lecture I am going to kind of talk
0:28about something which I have already
0:31discussed many times but in this I am
0:34going to explain that in a little more
0:38detail.
0:40There are quite a few reasons for why
0:43I'm doing this. One is that it works as
0:48an underlying
0:50theory to understand the entire
0:54discourse of medical humanities and
0:57that's why
0:59when you think of bioeththics and
1:02cultural intersections that I am talking
1:05they are very central to the medical
1:08humanities field.
1:11I thought it was a good idea to
1:16take it up in week eight all over again
1:19in with descriptions because
1:24then through this lens you will be able
1:27to
1:29godge all the literary texts or all the
1:33cinematic and graphic and other
1:35narratives that we have dealt in the
1:37past few weeks
1:39and recalibrate the analysis all over
1:42again.
1:44On that note, let me uh go ahead and
1:47introduce you to the title and map the
1:50overview of what I will be discussing
1:53today in this lecture. The title of my
1:56lecture today is medical ethics and
1:59cultural intersections. Both of them
2:02very loaded words when you try to
2:05dissect. We go ahead with what is
2:08bioeththics.
2:10Talk about its early emergence,
2:13medical technology and the rise of
2:15ethical dilemmas, limits and treatment
2:18of end of life decisions. Four
2:21principles of biomedical ethics,
2:24ethical reflection in medical
2:26humanities, contemporary ethical
2:29challenges in healthcare, responding to
2:32ethical challenges in healthcare and
2:34finally the growing focus of bioeththics
2:39in India. Now
2:42clearly you can see that we begin with
2:46the concept.
2:48We take up the trajectory and we come to
2:52the Indian context.
2:54And as I promised you in the
2:57introductory lecture that at all point
2:59of time what I want to do in this course
3:03and how I am trying to differentiate my
3:06course from other medical humanities
3:08course is that I want to keep it
3:12interdisciplinary and I want to not
3:14compromise on the familiar spaces we
3:18have treaded on which is the Indian
3:20space. So what is bioeththics?
3:24Bioeththics is the study of ethical
3:27questions that arise from medicine,
3:31healthcare and biological sciences. So a
3:35quick search on Google will tell you
3:39about many bioethical quiz you can take
3:44of situations simulated and sometimes
3:48but
3:50in all those
3:52narratives you find that they are
3:55questioning
3:57a clinical situation
4:00beyond the clinical aspect of it they
4:04are
4:06intermediating
4:10many other ethical contours through the
4:14narratives that focus on the biology.
4:19Therefore, these ethical decisions when
4:23we think about them in the bioeththics,
4:28they look at the body beyond what it
4:33means as physical or clinical.
4:36Therefore, when we think of bioeththics,
4:41it is not just physical but also social,
4:46cultural, economical, political,
4:49personal,
4:51many ideas fused into one. Now,
4:55bioeththics as a theoretical paradigm
4:58emerged in the late 20th century. And
5:03these theoretical debates centered
5:06around the idea that medical decisions
5:09will involve moral judgment.
5:12And that's why we will come back to
5:15culture a little later. That is why
5:19emphasis on the cultural contexts and
5:24the social contexts from which the
5:27person was coming, the patient was
5:28coming and also the familiarity of the
5:31person with whom
5:34that person was dealing became
5:38seminal to how bio bioeththics was
5:42promulgated and established.
5:44No doubt it says we have to look beyond
5:47the traditional medical ethics case.
5:50It's an interdicciplinary field just
5:52like life. When we think of morality,
5:55when we think of ethics, we cannot say
5:58it is a discipline of philosophy alone.
6:01It is more than that. And that's why
6:04bioeththics brings together philosophy,
6:08law, medicine, sociology and public
6:12policy
6:14to examine three questions that I put
6:16out here. But you can always ask more
6:19questions. What are they? The first
6:21thing is what counts as a good medical
6:24decision. So if some of you must have
6:26given
6:28exams where reasoning,
6:31simulation,
6:33inference, all these kind of questions
6:36come
6:37sometime you will come across this type
6:40of question as well. So what is a
6:43medical condition?
6:47Second, who should make decisions about
6:49treatment? the doctor or the patient or
6:51the family or economic status uh
6:54geographical positions. What
6:58this is important and how should
7:01biomedical technologies be regulated.
7:04Now we know how AI is penetrating in the
7:08healthcare something that I will also
7:11discuss in the next lecture. I think not
7:16next but next to next
7:19and something which is making human
7:22presence almost
7:25redundant or marginalized.
7:28So in that intervention,
7:33how do you regulate
7:35the human experience? How do you
7:37maintain bioeththics? How do you tell a
7:40machine algorithm that you have to be
7:44ethical? So bioeththics exactly talks
7:48about these questions. It raises these
7:50very compelling debates on how these
7:56navigations will take place.
7:59The human versus non-human, the machine
8:02versus emotion,
8:04nature versus culture,
8:06clinical versus ethical. Quickly, I will
8:10try to map the bioeththics emergence in
8:131960s. Like I said, late 20th century
8:16was the time when it emerged. The first
8:20theorist that we can think of is Joseph
8:23Fletcher whose book morals and medicine
8:27published in 1954 is considered to be
8:30the first modern text addressing
8:33critical issues in medicine. He
8:36established a term called situational
8:38ethics that emphasized on the importance
8:42of situation
8:45rather than set rules. And therefore you
8:49find that there are no fixed morals when
8:51you come to bioeththics. There is no
8:54nothing which can be said this is
8:56ethical and this is not ethical as a
9:01umbrella term for all situations.
9:05Ethical is something that has to be
9:07customized
9:09from episode to episode from person to
9:12person from narrative to narrative.
9:15And therefore
9:18the more interpretation and
9:20customization started happening the more
9:23relevant it became because the
9:26narratives that were coming from people
9:29were of different situation.
9:31And therefore
9:33when you talk about the relationship
9:36between the patient and the doctor and
9:39the
9:41agency of who holds the story,
9:46whose voice is being heard, who is at
9:49the margins
9:52in these negotiations,
9:55the context, the situation started
9:58becoming primary.
10:01Additionally, in the 1960s
10:05when the field developed, there were
10:07major social and political
10:10transformations that were happening.
10:13Important was civil rights movement,
10:16Vietnam war and Cuban missile crisis. in
10:21terms of political
10:23or historical rather
10:26these were events that were important
10:28and shaping the way bioeththics was
10:31thought.
10:34Additionally, there was the rise of
10:37feminism
10:39and they were raising
10:43issues around reproductive rights in
10:46which
10:47mainly contraceptive and safe abortions
10:50were the issues
10:52and
10:54put together. What is ethical and what
10:57is not ethical
11:00within the scope of medical where there
11:04were set guidelines
11:06given
11:08to decode
11:10a diagnosis
11:12that started this movement around
11:17conceptualizing bioeththics and its
11:20tenets became prominent.
11:24What it also led to the entire discourse
11:28was a shift in thinking and what was
11:30that? So in 1960s mainly Englishspeaking
11:35philosophers focused on analyzing the
11:39moral language.
11:42So it was very linguistic. It there was
11:44philosophy of language in ethics. But in
11:481970s
11:50they said
11:52not just around philosophy of language.
11:55We should concentrate on perhaps
11:57philosophy of life where you discuss
12:01practical ethical questions. And what
12:03were these? These were issues which
12:06people were living. issues such as
12:09abortion, euthanasia, war, capital
12:14punishment, allocation of scarce medical
12:16resources, animal rights, all these
12:20issues that Busha talk about. But there
12:22are more than that that we can discuss.
12:26So all these practical ethical questions
12:29were taken into consideration visav the
12:34philosophy of ethics within bioeththics.
12:39With bioeththics also came the ethical
12:43dilemma
12:45because we were talking about resources.
12:48We were talking about who had the right
12:52to access the resources because now from
12:56the theoretical aspect of ethics we were
12:59going into the practical aspects of it
13:03and practical situations may vary from
13:07situation to situation, person to
13:09person, culture to culture.
13:13Therefore when technology started
13:15penetrating the social discourse
13:19quickly following up with the medical
13:22you find that they created new set of
13:24problems.
13:27If you remember, I was discussing the
13:30MTP act in India and how ultrasound in
13:34the Indian context became problematic
13:37because there was already the existence
13:40of male high preference in India.
13:45So much so that in 1994
13:48PCPNDT act which is preconception
13:52prenatal
13:53diagnostic test came into practice and
13:57was effectively
13:59implemented.
14:01But if you go back to the medical side
14:04of it,
14:06it was a innovation where nobody thought
14:09this could happen.
14:11So similarly when lifesaving
14:14technologies
14:15came they came with their own issues
14:22diialysis for example. Now what happened
14:25when diialysis came? So when the
14:27diialysis started happening it was very
14:30costly
14:32and naturally
14:35not everybody could get access to it and
14:40therefore the onus was on a committee a
14:43committee that decided
14:46who will get the diialysis done
14:49and what would be the criteria
14:53over a period of time it was observed
14:56Oberve that
14:59there was the decisions were made
15:03based on what that committee wanted and
15:07therefore the
15:10committee's name became God committee
15:14because they were deciding who had the
15:17right to live and who had to go go as in
15:22die
15:24and because it was people centric,
15:27committeecentric.
15:29There was bias towards people from
15:31similar social and ethnic background
15:34that one sees in some of the researchers
15:37Lee and Dwan talk about it.
15:40Even when heart transplantation
15:43came
15:44which was performed by Christian Bernard
15:46in 1967
15:50the development of respirators made it
15:52possible to keep the heart beating even
15:55when the brain function had stopped.
15:59Now
16:01this led to another kind of ethical
16:02debate which meant that if the heart is
16:06beating how can a person die?
16:09So
16:12technological innovations not only
16:15solved the issues but they created new
16:18kind of spaces in which more thought was
16:21required.
16:23Finally we talk about in this slide
16:26Harvard brain death committee. You must
16:28have heard brain dead. So many times you
16:31will hear of patients in ICU and CCU
16:35where they are on ventilator and they
16:37say that the brain is working. If I
16:40remember correctly at least a doctor has
16:43to wait for 48 hours or more before
16:45declaring dead if even if the person is
16:48on ventilator. I am not a doctor. I
16:51don't know much about it but I'm just
16:52kind of uh reiterating what I have read
16:56in some of the books.
16:58What did the committee say? It says that
17:02absence of all discernable central
17:04nervous system activity should be
17:06accepted as a new medical criteria for
17:08death. So what are the criterias
17:11that were earlier there and what new
17:14criterias became implemented?
17:17That is what was decided by brain death
17:20committee. Now there were limits of
17:24treatment and end of life decisions
17:29something like euthanasia and all you
17:31have you must have heard of. So let us
17:33come here. The new ethical question was
17:36how does advance in life support
17:38technologies force doctors and families
17:41to confront a difficult issue. Should
17:44life always be prolonged even when
17:46recovery is unlikely? If you remember, I
17:49had used a word vegetative state which
17:52clinically is rampantly used
17:57but can have different connotation in
18:00other context.
18:03So when life issues became
18:07difficult to decide whether they should
18:08be there or not, what decisions to be
18:10made,
18:12there were ethical dilemmas
18:14involving patients who could not express
18:17their wishes. Who are they?
18:22Small kids, infants,
18:26very elderly people. So they or people
18:30with who were who were in coma
18:34they could not speak for themselves.
18:37So there were neonatal debates. In 1973,
18:41pediatricians Raymond Duff and the AGM
18:45Campbell published a study in the New
18:47England Journal of Medicine that
18:49described ethical challenges in neonatal
18:53intensive care, NICU which is called and
18:56reported that some infants died
18:58following decisions not to initiate
19:01lifep prolonging treatment
19:04because there was nobody who
19:08could decide that what is to be done in
19:11this case. Their article aimed to break
19:14what they called the public and
19:16professional silence around this
19:18decisions.
19:21So these gaps that were between who will
19:27narrate the story and what kind of
19:29decisions
19:31uh were taken in the clinician space.
19:35They were being questioned in this
19:36research.
19:38There is another case which is Karen and
19:40Kulan case which is about the persistent
19:44vegetative state. So
19:47Quinnland was entered as a vegetative
19:51state and kept alive by a respirator for
19:54a very long time and his family did
19:57request that life support be removed but
20:01they continued because doctors were not
20:03ready to do that.
20:05Finally, New Jersey Supreme Court ruled
20:07that withdrawing life support would not
20:10constitute unlawful homicide
20:14because otherwise this could result in
20:16homicide as well. So law said no, it's
20:19not like that. Uh the person has been on
20:22in this state for a very long time.
20:25Maybe they gave some statistics and
20:28that's how the
20:32life support was removed.
20:35There are four principles that we can
20:37talk about. I discussed this when I was
20:39discussing bio uh ethics in
20:43lecture three
20:46in the first week but I will expand it a
20:50little bit here. The first one that I
20:53had discussed is autonomy. Respect for
20:55autonomy is the first principle of
20:58biomedical ethics. At this point of
21:01time, I also want to emphasize that
21:04while I'm talking about these four
21:07principles of biomedical ethics,
21:10they cannot be looked as independent
21:13category. There is overlap, there is
21:17merger and there can be more. So when we
21:21talk about autonomy, it refers to a
21:24person's ability
21:27to take decisions freely and with
21:29adequate understanding.
21:31So in layman's language, informed
21:35decisions.
21:37That is what autonomy means.
21:40You know about the conditions and then
21:44you make informed choices.
21:48That is your autonomy.
21:51Joel Finnberg explains that autonomy
21:54requires both the capacity to deliberate
21:57an ability to act on one's decision. So
22:00you have the ability to think about what
22:03are the different options I can weigh
22:06and then also required resources and
22:10potential to act on those decisions.
22:18Now there are several questions around
22:21consent.
22:23I'm sure some of you must have gone to
22:26the hospital
22:29for a surgery or a major procedure.
22:34All those situations require consent.
22:40when the patient can give the consent.
22:42Yes, the patients give and sometimes the
22:45family members.
22:47So
22:49the
22:51value of consent is
22:55primary understanding of the biometrical
22:59ethics. And finally,
23:03when we think about
23:06the idea of respect for autonomy, the
23:09ethical challenges lie in
23:14the cases where
23:17you cannot have consent. Children,
23:20unconscious patients or individuals with
23:24limited decision-m capacity.
23:27So with them you don't know how
23:32ethical standards are to be maintained.
23:35Then we have beneficence.
23:38Now beneficence requires
23:41health care professionals to promote the
23:44welfare of the patients.
23:47You think about what is good for the
23:50patient and the doctor does exactly
23:52that. Busha and childress distinguish
23:55two dimension positive bene beneficence
23:58and utility. And in positive beneficence
24:02they talk about [snorts] actively
24:05providing benefit to others. But in
24:07utility they also weigh down their own
24:10benefit. And in current uh corporate
24:14space of medical discourse we usually
24:18come across uh utilitarianbased
24:22beneficence.
24:25In practice beneficence often requires
24:28risk benefit analysis. How much are you
24:31risking? What is your benefit outcome?
24:34You must have heard of the phrase the
24:35more the risk the more the benefit. in
24:38medical discourse I don't think that is
24:40the case one thinks so it's a very
24:43calculated kind of risk one can take
24:46it's never more risk more gain so you
24:49try to differentiate also about how
24:52idioms and phrases can be used in
24:54different disciplines
24:56so when does the tension arise when the
24:58doctor's idea of the patient's good
25:01differs from the patient's own judgment
25:03when there is a conflict
25:06the beneficence is difficult to arrive
25:08at
25:09the third principle is non-maleficence
25:15and what is that?
25:18First do not harm. So instead of
25:22thinking about the benefit
25:25at all point of time the clinician
25:27should think of not harming the patient.
25:31What does it require? It requires health
25:33care professionals to avoid causing harm
25:36to patients and represent the risk side
25:39of medical decision making. What are the
25:42risks involved? That also is the
25:46responsibility of the health care
25:48professional to inform the patient.
25:50David Tomasma argues that beneficence
25:53and non-maleficence are closely
25:55connected because they almost work like
25:58the two sides of the same coin.
26:02So they are similar but not same. I
26:05think many of you must be using this
26:07phrase uh quite often in your
26:10conversations.
26:12And finally it talks about careful
26:15disclosure of potential risk because
26:20many of grave surgeries will have larger
26:24risks but the information has to be
26:26carefully imparted. And finally justice
26:30who gets the resource who gets to access
26:34the medical resource
26:36what not just the rights but how so
26:40fairness in the distribution of
26:41healthcare resources and respect for
26:44people's right and here I want to go
26:46back to something I said in I think week
26:50two where I mentioned that health
26:56is a fundamental right
27:00and therefore it's not one person right
27:05it's everybody's right and this is where
27:09the justice component come
27:12so whenever we talk about justice
27:15broadly remember in medical humanities
27:19whenever we talk about justice we talk
27:22about rights
27:24we talk about access and resources
27:28So
27:30the the availability of resources
27:34doesn't mean there is also access to
27:37those resources.
27:39So this can be an assumption that just
27:42because resources are there there is
27:44access. Access depends on many other
27:47aspects. That is what justice talks
27:49about in all aspects of medical
27:51humanities. Not just here. I I have used
27:54this uh word primarily in the case of
27:57reproductive justice but uh in general
28:00it's one of the principles of biomedical
28:02ethics which says that there has to be a
28:06kind of a balance between the resources
28:09and access and because health is a
28:14fundamental right of each individual the
28:18distribution of health care across
28:21geographies should be such where each
28:24person is able to access those
28:25resources. Two ethical debates uh
28:29distributive approaches,
28:30non-distributive approaches. What are
28:32distributive approaches? Those with
28:34greater need receive more resources and
28:37resources are distributed equally or on
28:40first come firsts serve basis. So two
28:44ways. So in distributive
28:46people who need it more will get the
28:49resources
28:50but in nondistributive it is equally
28:53dist distributed or whosoever comes
28:56first they get it need component takes a
28:59back seat. In medical humanities
29:02when we think of bioeththics
29:08several ways we find in
29:11which this gets reflected. not only
29:14issue based but also genre based. So
29:17when you refer these moral questions in
29:21healthcare
29:23some of them like care, responsibility,
29:26dignity, patient autonomy,
29:29you find that they can be reflected
29:31through literature, culture, philosophy
29:35and in total they foster empathy and uh
29:39ethical awareness in medical practice.
29:42You think of any text that we have
29:44discussed in the past four five weeks.
29:49All of them when they picked up the
29:53issue
29:55they were not very linear ways of
29:58reflection.
30:00They were complex and led oozing the
30:05socioultural spaces they came from.
30:09While the writer's positionality
30:13and the positionality of the characters
30:16present in those narratives was
30:18important but at the same time was also
30:21important
30:23the legal context
30:26that they adopted
30:29the gaps they pointed within the legal
30:32policies
30:34and the social implementation.
30:37The economic factors, the stigma
30:40associated
30:41with it, how does society construct
30:43meaning? All of it was reflected in the
30:46narratives we chose.
30:49What does it do? It gives us
30:53a lens to read more narratives,
30:57not just superficially,
31:00but through the underlying meaning of
31:02what it could represent.
31:06And in that process
31:08deconstruct only to reconstruct a
31:12meaning that suits the contemporary
31:16context because
31:19meaning making process is dynamic. What
31:22is relevant today, what is progressive
31:24today,
31:26what you are thinking is ethical today
31:28may not be that ethical tomorrow.
31:31And hence the onus is on each one of us
31:35to interpret our meanings taking into
31:38account different aspects of
31:42how that narrative has got constructed
31:45and the familiarity in which we
31:48interpret
31:50the narratives that are given to us.
31:54So you find the medical discourse
31:56happening in
31:59literature where ethical questions are
32:02questioned through the narratives in
32:04philosophy where you discuss issues like
32:08autonomy, care, responsibility and
32:11meaning of illness and well-being.
32:14You have history
32:16where the practice and attitudes towards
32:20disease has evolved across time and
32:24societies. If you remember the short
32:27story that I discussed in the last week,
32:30Raati
32:32and Quarantine both of them had a
32:36significant historical point to make
32:41very poantly.
32:43Quarantine said that people did not die
32:46much of plague than the quarantine. What
32:50does it say? It signifies
32:53the time
32:55in which that plague happened more than
33:00what it did to people at that point of
33:02time. Anthropology
33:06very much seeped into cultural beliefs,
33:08traditions and social practices. And
33:10finally, sociology which takes into
33:13account
33:15many of the intersections in which
33:18society operates.
33:22This implies that
33:25each society is different and has to be
33:28taken for analysis or study differently.
33:35Uh in contemporary challenges quickly I
33:38will sum up the technological
33:40advancements where you find that
33:44technology
33:45is a boon but it in medical
33:50or in healthcare
33:52it it has to be humanized.
33:57Commercialization of healthcare is
33:59another aspect that we have dealt with
34:01where sometimes the patients autonomy
34:04gets compromised
34:07and the utilitarian perspective of the
34:10new health care setup
34:13takes the front seat.
34:15And in that process what does it do? It
34:18changes the doctor patient relationship
34:20because it is a direct
34:25attack on the quotient of empathy of
34:29trust and care that gets built in that
34:32diet of doctor patient relationship and
34:34finally
34:36uh complex medical decisions with tests
34:40technology and so many advanced
34:43treatment. What is best for us?
34:46What is best for you? What is best for
34:48me? What is best for anybody else? Those
34:51choices
34:53because there are abundance of choices
34:56that one choice which is best for us is
34:59becoming difficult.
35:03Therefore, one has to respond to these
35:05ethical challenges in health care by
35:08strengthening the medical ethics where
35:12you
35:14integrate ethical frameworks into
35:17healthcare and not just codify as
35:22structure
35:24one sizefits all. There has to be an
35:26interdisciplinary dialogue
35:28and that is why we are fusing a very
35:31clinical narrative with that of literary
35:34narratives and discussing a discipline
35:37like medical humanities.
35:39It has to go from being the doctor
35:42centered or the healthare professional
35:45centered to patentoriented.
35:47And finally the ethical training and
35:51awareness
35:54is
35:55to be encouraged for
35:58responsible medical practice to take
36:01place.
36:03We find that in India there is a growing
36:07focus. The first that I have come across
36:10in my
36:12literature review is the formation of
36:15the forum for medical ethics society in
36:181989
36:20followed by different other centers that
36:23expanded across the country. Medical
36:26curriculum also has increasingly used
36:29the ethics and communication training.
36:32It's called ATCOM. That's mandatory now.
36:36And this is a training in ethics and
36:40communication.
36:42And finally,
36:44like I said,
36:47it's a global village now, a phrase
36:50usually heard
36:53with the expansion of digital space,
36:56shrinking the world like never before.
36:59We also have UNESCO chair in bioeththics
37:01network in India which is mapping the
37:05Indian healthcare bioeththics growth
37:07with that of global scenario.
37:12Thank you so much. I I'll see you in the
37:15next lecture. Thank you.