Camille Castelyn
Hello and welcome to Voices in Bioethics Podcast. I’m Camille Castelyn And today it is my great pleasure to welcome Professor Sarosh Saleem, who is currently the founding head of the bioethics department at Shalimar Medical and Dental College in Lahore, Pakistan. Welcome Sarosh.
Sarosh Saleem
Thank you so much, Camille, it’s so wonderful to be with you.
Camille Castelyn 0:29
Okay, so today we are talking about the unique context of Pakistan and how religion, cultural views and traditional gender roles influence organ donation and the consequent clinical ethics consultations in Pakistan. So Sarosh last time, we talked, you said that the law currently states that a donor should not be less than 18 years of age, and that it should be voluntary act. And that donation should be permissible, but it’s only to a living person who is genetically and legally related, which is, in essence, a close blood relative. So maybe you can tell us more about the organ donation law that was passed in 2010. And who usually donates to who and why.
Sarosh Saleem 1:19
Yes, as you said, so the law clearly states that it has to be a close blood relative, which basically means either a sibling or a parent or a child, or a spouse. If you look at the data in last few years, so most of the donors have been females, if we take the cases of spouse donors, we see that more than 70, or 80% of donors are female. So the wives have donated the organs to a kidneys to the husbands. And the law does say that there is a provision in law that if a person does not have any living relative who can be a match for organ donation, then somebody else can voluntarily donate the organ. But then there is an extensive process that they have to go through to ensure that the process is voluntary. But I talked to a few people in Punjab Human Organ Transplant Authority. And they told me that in last two or three years, there hasn’t been any instance, where a non-relative was an organ donor. So they didn’t receive any such application. So technically, it is very difficult for non-relatives to be organ donors. And according to law, and I think the main issue that I wanted to talk about was that in our society, it’s more females who are donating organs as relatives, to their family members.
Camille Castelyn 2:51
Okay, that’s very interesting. So women are the organ donors traditionally. And then the inverse might also be true that they often they are not able to get organs when they need them. What would you say is the reason behind that you sketched a scenario about a fictional character called Hina, who also needed a organ, but then you said that it wouldn’t be possible for her to get an organ? Maybe you can take us through the family dynamics regarding that.
Sarosh Saleem 3:22
Yeah, so in Pakistan, the decisions are made as a family as not as individuals. So when we talk about individual’s autonomy, it’s not as it is perceived in the West. So that is one of the things and I think the traditionally women are brought up in a society in a culture where they are sort of givers and they end up compromising. And I think it might not be happening that all the time explicitly, they are the only ones who are asked to donate their organs, I think even culturally, it will be that they would be the ones to step forward to do that, just because that they live in a society and they grow up there. And they think that they are the ones who should be making the sacrifices all the time. And it might, you know, seem that it’s a voluntary decision. But there are so many social and cultural aspects in the background that play a major role. As you said that yes at they at the receiving end, they also have difficulty in receiving organs because it is perceived in this society that men have to earn for the family and they have to go out of the house and bring the food and they are the caretakers for everybody. So they must be healthy. And if they donated a kidney, they might not be as well to perform all the work and duties and therefore, it’s pretty much possible that women are probably in not a good position to either receive an organ, and they are more vulnerable when it’s about giving an organ as a donor to another family member. Then there are other social factors like young women who are in childbearing age, they might have some social pressures from their family, from their spouses or their in-laws about not donating an organ to another family member. So decisions are sometimes not made by them, per se. And it’s usually a family decision that they are just following.
Sarosh Saleem 5:33
Okay, well, that’s very interesting. And as you say, they’re actually in a very vulnerable position, because of some of these traditional gender roles as well. How do you deal with that, during a clinical ethics consult? How do you determine whether this is the woman’s voluntary decision? Or is it coercion? Or is it a finer line between just the cultural context which is expected out of them?
Sarosh Saleem 5:58
That is a very difficult thing to do, because it’s also about their worldview, how they see the world and what they think is the right thing to do. And most of them during the meetings, they are convincing, and certain that it’s their own decision. Because, as I said, it’s expected of them. And they also expect this from themselves. Because they grow up in a culture in a society where this is the norm, where the females are the women, they are the ones who are usually making most of the compromises. So it’s not easy, however, obviously meeting with the families and you know, making sure that there is no financial coercion involved, because sometimes families have inheritance issues and other things like that, because of which females or the young women are often in a pressure to make a decision. So what most people usually try to do is to have a multidisciplinary team and you know, talk to them and give them time and different people talk to them, and even some psychologists, and that’s what we are trying that every institution which has an organ donation centre, that they should have ethics committees and psychologists on board, so that they ensure that it’s actually a voluntary decision, and there’s no sort of coercion behind it.
Camille Castelyn 7:27
That’s very interesting. I think the law does serve a function in protecting them as well. So that’s good that you have that law to a degree. Would you agree? Or does the law actually make it more easier than for these females into donate if they don’t necessarily want to or have to?
Sarosh Saleem 7:45
I think the law needs to be looked into again. It requires some sort of revision. And also, because once you state that, it has to be close family relative, then you kind of limiting the options for people, especially for women. And although there is an option available, and there is one point in the law, which says that some non-relative can be a donor, but then, as I said that I talked to some authorities, and they told me that they have not seen even one case of non-relative donor in last few years. So it’s so discouraged generally, and people do not know. And I personally think that we need to talk more about and create more awareness about donating our organs after death because it has been discussed and debated a lot in Pakistan and outside of Pakistan in ethical and cultural and religious perspectives. And religions allow that and even Islam allows organ donation after death. So I think we need to move more towards non-living organ donation. You know, like after death, organ donation, and that should create more awareness about it in Pakistan.
Camille Castelyn 9:03
Okay, great. Yeah. So the clinical, the social and the legal should all come together. And what kind of ethical values would you identify? I’d say maybe compassion and justice also then for this vulnerable group of people. In these situations? Are there any specific steps that you are working to improve the situation?
Sarosh Saleem 9:25
Generally what I’m working mostly on its own clinical ethics consultation in hospitals in Pakistan and creating awareness about clinical ethics and involving doctors, non-doctors, nurses and other health care providers and even legal experts and religious experts in clinical ethics decision making. So I’ve been working more on clinical ethics consultations in healthcare system of Pakistan, mostly.
Camille Castelyn 9:55
So that’s really a holistic approach that you are trying to cultivate as well in the that context, and I think that’s a great way to go about it.
Sarosh Saleem 10:03
Yeah. So I mean ethics consultation, if we improve ethics consultation in general and create more awareness about clinical ethics among people, and they, you know, the patients know their rights. That is something I’m mostly working on. And it’s really important to involve other healthcare providers like psychologists and nurses and other healthcare providers in ethics consultations, which is not very common in Pakistan, because most of the decisions are made by physicians. And even if a few hospitals, they do have ethics committees, they’re mostly made up of physicians. So it’s really important to have the voices and perspectives of other health care providers who probably spend a lot of time and they have a very different time with patients, and they have a different sort of perspectives as compared to physicians.
Camille Castelyn 10:59
I think that’s really important in incorporating all those voices when you work in these clinical consultations. And I think everywhere in the world, there can be improvement of how clinical ethics consults take place. And I think getting to a holistic approach is really something that most of us are aiming for. But it’s not an easy task. The other thing that I wanted to talk about was that you are actually one of the first and only health professionals in Pakistan with a postgraduate fellowship in paediatric bioethics. And you’re a woman, and you’re the founder of the Pakistan’s only bioethics department, where you are involved in teaching and training. So what kind of challenges have you had to face? Has gender roles ever been part of it for you? Or Not really?
Sarosh Saleem 11:48
This is an interesting question, because when you asked me, I think about it. And I realized that some of the leading bioethicists in Pakistan are females. But it’s true that there are many challenges. So mostly not just because of being women, I think, but I think women are more resilient, especially in Pakistan. But I think it’s a sense, it’s a very new field, that certainly if you talk about bringing a change or a new thing, there’s always some resistance and people who, especially physicians, and healthcare providers, who are used to making decisions in a certain way, in a very paternalistic, authoritative way. And if we want to include other healthcare providers in decision making, and we want to bring in some humanistic approach in decision making, they find it difficult. So that has been one of the biggest challenges. And I think that yes, generally, in every step, being a woman kind of adds some additional resistance. I don’t know how to say it, but the way men manoeuvre in our system and society is a whole lot different from how we have to, you know, move around. So even communication has been a challenge. And so most of the people in authoritative positions, and in senior administrative positions, most of them are men, and it’s certainly difficult to challenge them. So we have to find and devise ways to not make them feel threatened, I guess. So yeah, that is one of the things and then, as I said that the way autonomy is perceived, and it is in our society is very different. And another thing is that how we bring in religion, because Pakistan is a Muslim majority country, and most of the people have one or another faith. And most of the people, they involve religion in their day to day lives, and all decision making. And so clinical decision making is another important aspect of life where religion has to play a role in Pakistan. And we do not have any policies and much of any normative discourse in this area of bioethics in Pakistan. So I think these have been the things that we’re trying to improve by developing more teaching and training resources in Pakistan.
Camille Castelyn 14:31
Okay, interesting. And you said that their religion also shapes the clinical ethics consults, and that is an important part. What is the current demographic of Pakistan’s population or most people religious or not? And you said that that does have an influence on how clinical ethics take place.
Sarosh Saleem 14:49
Yeah, so most of the people are religious, I believe more than nine to 95% are Muslims. And there are a very, very few who might not have any religion, but that will be maybe less than 1%. So we have Muslims and then in minorities, we have Christians and Hindus, it should play a major role. But interestingly, what I’ve observed lately is that in ethics consultation, there are hardly any consoles based on religious grounds. And it’s interesting, because I am trying to explore this further. But I personally think that because the decisions are very, sort of unilateral, because physicians are making decisions, they’re mostly very based on their clinical decision making, rather than a holistic approach of other things. So the decisions are mostly very hardcore, evidence based medicine sort of decisions, rather than incorporating culture, the religion, and even individual aspects of the patient and their families. So I believe that it should, but data shows that the religion has not been a major part of clinical ethics consultation so far in Pakistan. So I think this is one of the things that I’m trying to explore at moment as to why is this happening? And should we be talking more about religion with patients and their families? Or we don’t need to? So you know, this is something I’m trying to explore now.
Camille Castelyn 14:50
Yeah think I mean, religions influence decision making definitely. And as well as gender bias is definitely not something unique, necessarily to even the Pakistan context. I think it’s in the US clinical ethics consult, you find some of the same issues as well. You have experience of the US context as well. Would you say that there are some lessons to be learned from the Pakistan context to the US context?
Sarosh Saleem 17:00
Yeah, certainly, there’s so much to learn from each other. I believe most of the things that I haven’t most of the people in Pakistan have learned so far. I think these are from the US to how the bioethics has evolved and how ethics consultations over the years have evolved, and whether religion and culture should be part of these discussions or not. So this is extremely important. And I think the major challenge that we face in Pakistan is basically that the issue of autonomy, individuals do not make decisions there. It’s the families and even if some person is making their own decision, their decisions are mostly based on the interests of the family and they trained, they used to thinking in a way, not as individuals. So I think, yes, there’s a lot to learn from each other. I have certainly learned so much from the bioethics and ethics consultations in US about cultural sensitivity, and you know, so many other things. I think it’s mainly in Pakistan, we really need to understand our own culture, maybe explore it, both normatively, empirically understand our culture, and then try to adapt to the ethics consultation and other things that we are trying to. So I think the main issue has been that we have been just trying to implement all these things, without actually trying to explore our own realities first, and how we can adapt or maybe kind of mold these systems and policies in our culture and society.
Camille Castelyn 18:51
That’s fantastic. Yeah, I think my South African context is might be similar in terms of how the family also features a lot more in clinical ethics decision making processes. So I find that very interesting. And that is a whole different topic, I think, to unpack right there as well. So I think it’s like you said, just learning from the different contexts and seeing how we can incorporate it. So yeah, I thank you very much for your time Sarosh. I don’t know if there’s anything else that you’d like to add or share with us?
Sarosh Saleem 19:23
No, thank you so much for giving me this opportunity.
Camille Castelyn 19:27
Thanks Sarosh, it was really great having you with us.
Transcript by otter.ai