Full transcript
0:18Hello everyone. I welcome you once again
0:20to my NPTEL course introduction to
0:22medical humanities. And today we are
0:24going to talk about future scope of
0:26medical humanities.
0:28Clearly indicating what does the future
0:31hold for
0:33us as a medical humanities scholar.
0:36Before I begin, a quick overview of what
0:39I'm going to talk about.
0:41Now, in a course of eight weeks not all
0:44issues are possible.
0:46And that's the reason uh even in in
0:50in terms of future scope, I have chosen
0:53three areas for discussion.
0:56Care and caregiving.
0:59Chatbots and teleconsultation.
1:02These three aspects and discuss the
1:05changing landscape of healthcare in
1:08India with respect to these three
1:11issues.
1:13When we discuss uh the changing
1:16landscape of healthcare in India,
1:19broadly
1:22apart from everything else,
1:25the
1:26intervention of AI or intervention of
1:29technology is
1:32something that we have to place on the
1:34top.
1:37If you analyze say 25 years back,
1:40how consultations happened
1:42to how they are taking up now.
1:45And possibly
1:47five to 10 years down the line, how
1:49things will be.
1:51We don't know how rapidly they will
1:54change.
1:55And therefore,
1:57amidst this hullabaloo of technology,
2:02it becomes all the more pertinent
2:05to reflect on
2:09academic discussions like this, where
2:12human experience of illness is at the
2:16center.
2:18So, while other aspects
2:21do
2:22navigate,
2:24do complement
2:26the human aspect of
2:29health and illness and disease,
2:33that is never compromised.
2:36And that is the reason that despite
2:42so much of data,
2:44statistics
2:45suggesting the growth,
2:49academicians are taking or health care
2:52professionals are still taking a moment
2:55to pause and reflect on the need for
3:00human beings being not compromised under
3:03any circumstances.
3:07Therefore, a course like medical
3:09humanities,
3:11this bridges the gap between science and
3:13lived experience, where we move beyond
3:16clinical practice,
3:18a clinic which is going to be infused
3:21with more technology, more AI,
3:24more fragmentation,
3:26and more scientific knowledge.
3:30So, in such a scenario, how do you
3:33retain the individual, the cultural,
3:37ethical, and emotional dimensions of the
3:40experience a patient
3:44feels?
3:47In the area of caregiving,
3:50in health care chatbots and
3:52teleconsultation, I am going to
3:55quickly touch upon
3:57very, very briefly.
4:00So, what is caregiving?
4:02When
4:03there is some kind of ailment and
4:05disease or
4:06any family member or a person dependent
4:10on you requires care in terms of their
4:13physical vulnerability or mental
4:16vulnerability with respect to disease or
4:18otherwise,
4:20caregiving is done.
4:22I have also emphasized
4:25through various researches that
4:27caregiving process is
4:31not singular though practiced
4:33singularly, but it's a system of
4:36networks
4:37where not only people, but also the
4:39system comes in support of caregiving.
4:43But in India, in the absence of
4:46structured care, we find that home is
4:50the center of caregiving. When home is
4:53the center of caregiving
4:56and home is a patriarchal setup,
4:58automatically,
5:00the primary caregivers become the women
5:03of the family. Unlike attaching
5:06uh
5:07economic aspect to that labor,
5:11it becomes an extension of family
5:15responsibility.
5:18And because it is not leading to any
5:20economic aspect,
5:22this becomes
5:25unacknowledged
5:27and considered to be
5:30just your responsibility and
5:33no otherwise question is asked.
5:37I take up a quote by Goyal and Hanover,
5:40which says, "In a country where poverty
5:43and disability perpetuate each other to
5:45create a vicious cycle.
5:47Families of disabled patients cannot
5:50afford nursing homes or professional
5:52nurses, and hence the duty of caregiving
5:56falls on one or a few family members.
6:01And this is not just the case in one
6:03family. This is
6:05so many families where caregiving
6:09becomes home-centric
6:13and women-centric.
6:15And this may lead
6:17to physical and emotional exhaustion
6:21if it is done for long time.
6:24So, we came up with a term called
6:26caregiver fatigue on your screen.
6:29Fatigue is tired, and caregiver is the
6:32person who's giving care.
6:34Now,
6:36this long-term care
6:39can lead to many challenges, and that is
6:41what
6:42we have mentioned here.
6:44In the caregiver fatigue,
6:47these are things that we take into
6:50consideration. Now, it's a very new
6:52discussion, I must say.
6:55Uh earlier, sometime ago,
6:58people were talking about caregiving,
7:00indeed.
7:02But it was so embedded within the system
7:04that we live,
7:06which is community-based,
7:08that it was never even thought of as
7:10labor
7:11unless
7:13there were researchers which started
7:15focusing on the aspect of fatigue
7:19in caregiving, and they said,
7:22"Long-term care challenges
7:25for caregivers can lead
7:28to what kind of challenges?"
7:31Alzheimer's or dementia patients'
7:33changing needs.
7:34So, people with
7:36Alzheimer or dementia,
7:39they
7:41forget certain things. they remember
7:43certain things. Their pattern of life
7:47because of the
7:50illness they have.
7:52It's very uh
7:56oscillating and that can be
8:00problematic.
8:03I remember
8:05there was a woman who was sharing we
8:06were doing some kind of small research
8:08on Alzheimer's
8:10and she said that uh
8:12many times her father-in-law would get
8:14up at night
8:1612:00, 1:00 a.m., 2:00 a.m.
8:20and say that why don't you give me
8:22lunch?
8:25She had fed him dinner.
8:28But he was asking for lunch at 2:00 a.m.
8:30at night.
8:32She He would go out sometime.
8:36So she lived in constant fear of
8:40him going out. So they closed
8:43all the doors of the house
8:45in particular the gate.
8:48So you know, when you deal with such
8:49situations, it's a challenge because
8:52there is no cognitive
8:54stability.
8:57The other aspect is daily
8:59responsibility. It's not something which
9:01you do today and it's ending.
9:03It's over. No. It's every day.
9:06Medicine management.
9:08Just one dose here and there and it can
9:10cause problems. So
9:12also being emotionally there.
9:15It's not just about caring. It's about
9:17saying that I care. Acknowledge the
9:20presence.
9:22The support. So
9:25and
9:26in that process
9:28you are consumed.
9:31So caregiver fatigue talks about all
9:33these aspects of people who are involved
9:37in long-term caregiving
9:40in the setup of home. Therefore, we come
9:42to the invisible nature of caregivers
9:45fatigue where you find that
9:48it's not as
9:50we say that, you know, there is also
9:52emotional side to it. But, you cannot
9:55put it into binaries. The person is
9:58tired. It's not like that.
10:00Tired, but still wants to do. So, it's a
10:02very mixed kind of a situation.
10:05It develops very slowly because there is
10:08no realization that I'm getting tired.
10:10You're doing it for your loved ones.
10:12You're doing it for your family.
10:15Formally, there was no recognition and
10:16that is why it is the future scope.
10:19Because caregivers can feel overwhelmed,
10:23isolated, and emotionally drained.
10:27They cannot express it. Why? Because
10:29they are not caring for profession. They
10:32are caring for their own family members.
10:35And
10:36therefore,
10:37what I said just now, there will always
10:40be an emotional paradox of love and
10:43burden.
10:44That you are tired, but you want to do.
10:47So, that is why we call it laid.
10:50And therefore,
10:52the effort of policy makers is
10:55to
10:57make the system so efficient
11:00that probably these caregivers also find
11:03a respite.
11:05And not remain invisible in the setup of
11:11caregiving. How does medical humanities
11:13play a role?
11:15By bringing up narratives in its
11:19very complex laid forms.
11:22Because we cannot just say it's bad, she
11:24doesn't want to do.
11:26It's not a good thing. We cannot do like
11:28that.
11:29And there is where, if you go back to
11:31films like Piku, if you go back back to
11:35clear light of the day, you find that
11:37these kind of literature, memoirs,
11:39films, and oral histories and
11:40ethnographic studies have concentrated
11:43on that. There is caregiving
11:46and within that it is suggested it's an
11:50emotional and ethical practice.
11:52But
11:54caregiver also
11:58become part of that care system and
12:00therefore their stories also have to be
12:03recognized and that's why when we find
12:08that somebody is involved in long-term
12:10caregiving we must have support groups,
12:13counseling services, policy recognition
12:16for emotional labor.
12:19So
12:21that is why when you go to in clinical
12:23setup now and if you are
12:26caring for any of these kind of
12:29chronic illness, which is long-term, you
12:32will find that the clinicians always
12:35like to meet the person
12:38who is giving care.
12:40And
12:42there is an informal way of also
12:45counseling them.
12:48So in future there will be possibly
12:52a
12:53formal way of supporting the caregiver
12:55fatigue
12:57because
12:58there is no medical condition
13:00but still uh
13:03support is required.
13:06And also policy recognition.
13:09So their emotional labor cannot be just
13:11taken for granted.
13:13So these are some of the transformative
13:15changes perhaps that will happen uh in
13:18due course of time is what medical
13:20humanities is kind of theorizing through
13:23the narratives.
13:25The other uh,
13:28intervention is that of chatbots and
13:31conversational AI. So, AI is also
13:34intervening in caregiving, uh, but
13:36especially, uh,
13:38related to giving medicine, what is to
13:41be done daily,
13:43and for minor illnesses,
13:45AI is working fine. The chatbots are
13:48working fine.
13:49But,
13:51in due course of time, in future, it's
13:54supposed to give instant information,
13:57medication reminders, symptom guidance,
14:01and basic emotional support.
14:04So,
14:05you find that even now, there are so
14:08many app trials that are happening. You
14:11must be getting notifications for period
14:13tracker is a good app, I believe, but
14:16there'll be more chatbots which will
14:18come into, uh, picture. Additionally,
14:21uh, they will provide mediated care. So,
14:24before you reach the clinician, before
14:26you find the human interaction, you will
14:29have technology to support you. How does
14:31that? When technology will shift the
14:35traditional doctor-patient interaction,
14:38and help
14:39in
14:42cultural differences and supportive role
14:44instead of replacing the human contact.
14:47So,
14:48like I said earlier, it will be an
14:50extension of how you will respond to the
14:55advancement of technology, and therefore
14:57inclusive digital tools will be through.
15:01What will they be? Which will have
15:03caregivers narratives, patient
15:05experience, and ethnographic studies.
15:08So, this is where the chatbots will
15:11mediate the care
15:13in terms of how they will
15:16take up the advancements, and medical
15:19humanities will help us understand the
15:23design, the model through its
15:26narratives. Now, teleconsultation, I
15:28think during COVID-19 pandemic, this was
15:31most on the rise. One particular uh
15:35platform, eSanjeevani, is national
15:37telemedicine service of India, where you
15:40find remote access via phone calls,
15:43video calls, and
15:45other related
15:47uh you know, uh messaging and all. So,
15:51the benefits of teleconsultation are
15:53many. I list out four here, but
15:55primarily you understand that
15:59the teleconsultation
16:01with
16:04cellular network just everywhere
16:07is primarily about access and resource.
16:10Like I said earlier,
16:13re- any kind of medical change
16:17or any kind of justice can happen
16:20when there is a
16:22strong
16:23alliance or strong meeting point between
16:27access and resources.
16:29And teleconsultation bridges that gap.
16:33It reduces the gap which is there
16:35between the resources and access.
16:38What does it do? It is helpful for care
16:41caregivers managing chronically ill
16:43elderly patients.
16:45It reduces need for their travel and
16:47reduces hospital cost. It is accessible
16:50to health care from the safety of home.
16:53And finally, it reduces anxiety and
16:56uncertainty during isolation. You know,
16:59I can I can reach out.
17:03Uh but there are challenges too. What
17:05are the challenges?
17:07The whole idea of empathy and trust we
17:09have been talking about, that is
17:11missing.
17:12In the absence of communication, you You
17:15you are not cared.
17:17You are not heard.
17:18Or you are not listened. Your stories
17:20remain within you. The non-verbal cues
17:24that we have been talking about in terms
17:26of competence,
17:28they go amiss.
17:30The distress around
17:32the disease
17:34is ignored.
17:35And
17:36everything becomes very mechanical
17:39because there is no personal connection.
17:41What does medical humanities do?
17:45Medical humanities observes impact of
17:47digital consultation on experience of
17:50illness,
17:51emotional needs of the patients and
17:53caregivers, and ethics of the medical
17:56decision-making. Hence,
17:59when you think of proper
18:01teleconsultation,
18:03it removes barriers to care. Further, it
18:05leads to the inclusivity and
18:08accessibility
18:09through teleconsultation because you
18:11don't have to
18:13travel, you don't have to spend money,
18:18you there are I mean the options are
18:21available in different languages, so
18:23there is uh that inclusion as well.
18:27So, when you think of all these aspects
18:31in the setting of India, you find that
18:33it is very accessible because
18:37we have remote areas,
18:39elderlies can travel with difficulty.
18:43The infrastructure required that's not
18:45there, so teleconsultation needs very
18:49less space
18:50and extends medical expertise beyond
18:53larger urban hospitals.
18:55So, it's not necessary to go to a city.
18:58You can just do it from anywhere.
19:00And therefore, with all these
19:03parameters, you transform the overall
19:06health care system.
19:08What is the role of medical humanities
19:10in digital care? That it focuses on
19:13patient narratives, caregivers
19:15experience, and also the cultural
19:17attitudes.
19:19So, when you talk about digital
19:20inclusion, it is through stories that
19:23you ensure the
19:25inclusion is taking place.
19:28And narratives are built around that. It
19:31ensures empathy, communication, and
19:34ethical responsibility in telemedicine.
19:37With robust
19:39policies, even telemedicine systems will
19:42increase its validation.
19:45Medical humanities ensures that there
19:48are critical interpretative framework
19:51that address these issues
19:53and take into account the
19:56vulnerabilities, exhaustion, resilience,
20:00and
20:01compassion in caregiving.
20:04So,
20:05in conclusion, we can say that the
20:08healthcare technology is changing
20:10rapidly, but it is also encouraging the
20:14interdisciplinary collaboration where
20:16one discipline doesn't stand tall and
20:18say, "I am everything."
20:21There is hand-holding of different other
20:25disciplines happening in the interest of
20:29the well-being of human being, and that
20:31is why we find medical humanities as an
20:34area very relevant because it asks
20:37questions that were otherwise ignored.
20:41Therefore, when we think of future, we
20:44think of technological advancement, yes,
20:47but
20:48we don't think it
20:50through
20:52the angle of missing humanities
20:55quotient.
20:57On that note, we end, and in next
20:59lecture, I will try to summarize all the
21:02lectures that I have taken till now.
21:04Thank you so much.