ICON 2022 | Prolonging Life or Death? Aspects of Communication, Policies & Religio-Cultural Factors

Atufa Najib

Assalamualaikum, everyone. My name is Atufa Najib. And with me here is Dr. Nuzhat Irfan Malik. I'm part of the Pediatric Psychosocial Department, whereas Dr. Nuzhat is a consultant radiologist. Together, we are part of the Clinical Ethics Committee at the Indus Hospital. Initially, first, we welcome you all to our session that has been organized by the Clinical Ethics Committee on the theme of prolonging life or prolonging death. As healthcare teams, we are constantly involved in so many decisions. So many complex decision making situations come across us every single day. The dilemma of whether to continue life sustaining support or should we withdraw it? These are the questions that always come across to us. This dilemma and these decisions involve multiple stakeholders and multiple perspectives. Knowing how or when to make this determination is quite tricky.

Atufa Najib

In this session, we plan to address the concern and assist the healthcare providers in determining the best course of action for adult and pediatric patients. We will discuss about the aspects of communication, policies, and religio-cultural factors that are associated with these decisions. We will first begin our session with a talk, and then this will be followed by a parent discussion. For our talk, the first conversation that we will be having is about the aspects of communication which will be presented to us by dr john lantos dr dr john lantos is the professor of pediatrics at the university of missouri kansas tech city and director of the children's mercy hospital pediatric bioethics center he has published over 400 peer-reviewed papers and book chapters and 10 books He's the former president of the American Society of Bioethics and Humanities and currently serves on the American Academy of Pediatrics on Bioethics. Thank you so much. We will move on towards the presentation now.

Dr. John Lantos

John Lantos, it's great to be here with you, even virtually. I wish I could be there in person, but maybe next year we'll be looking back at COVID, let's hope. I'm going to talk today about some of the issues that come up in bioethics at our Children's Hospital-based Bioethics Center, particularly about communication both among professionals and between professionals and parents when there are controversial cases, especially cases that involve differences in fundamental belief systems like religion or cultural. factors i have no conflicts of interest to disclose for this talk let me start by telling you just a little bit about me i'm a general pediatrician i have a long-standing interest in taking care of children who have complex chronic disease these are children who some are ex-premies some have genetic diseases but they're often sort of on the edge of what's known scientifically or for which there are treatments with good evidence base. I also work as a bioethicist. I spent 20 years at a specialty hospital for kids with chronic disease in Chicago. You can see the little guy there on the right of the screen, happy

Dr. John Lantos

little toddler with a tracheostomy, probably from bronchopulmonary dysplasia. About 15 years ago, I moved from Chicago to Kansas City and now run a children's hospital-based bioethics center that also runs a teaching program, a certificate training program that many people from Pakistan have participated in. We have people from all over the world and so get to hear about a lot of different cultural practices, different practices in different countries. and to think about the implications of religion and culture, and particularly where we come from. One of the articles that I think best addresses this comes from a physician philosopher, Carl Eliot, who's at the University of Minnesota. This was published about 30 years ago, and he says in this paper, I myself refer to no systematic moral theories or doctrines in making moral judgments, but I have no illusions that these judgments are independent of the fact that I grew up as a Presbyterian in South Carolina. That is both religious roots, but also cultural roots, a particular part of the country, a particular culture, shaped his worldview as it does, I think, for all of us. And so some of the questions that I hope you'll think about today have to do with where our ethical values come from and what is the role of religion or culture or personal philosophies in our own values and the values of the patients and families for whom we provide care and to question whether these fundamental values the ones we grew up with are values that can change or ought to change and if so should they change because we've reasoned our way to a different conclusion Or do they change because circumstances, stories, cases, real life events lead us to feel things that create conflict between what we think of as the right thing to do and what feels like the right thing to do? Really, the question behind all of this is, when should we live out our

Dr. John Lantos

values we've grown up with? When do we stand firm? And when is it better to bend or compromise to perhaps change what we think of as the right thing to do in a particularly challenging circumstance? It's interesting that over the years, we've seen some changes in some places for many different reasons on a lot of fundamental moral issues. Slavery used to be legal in the United States. prohibited ideas about gender relationships and sexism have changed we've come up with new definitions for what it means to be dead the idea of brain death withdrawal of life support used to be considered homicide or manslaughter or euthanasia there are big debates about abortion and disability rights and the meaning of life with disabilities and of course informed consent is a relatively new concept That is not part of most ancient medical ethics systems, but has come to take a central place in most modern ethics systems. Again, these are ideas that forced people to change their fundamental views about what the right thing was to do in circumstances. So change is always hard. It raises questions about the nature of our deepest moral convictions.

Dr. John Lantos

It leaves people open to the charge of being moral relativists, of not holding firm to important and fundamental values. Flexibility can be seen as spinelessness or wishy-washy approaches to moral dilemmas. And so moral change induces deep and inchoate, it is hard to understand anxieties. but is sometimes necessary. So with that as background, what I want to do today is present a couple of cases that have come to our ethics consultation service and that force people to think about their own fundamental moral values and then talk about how we as communities of health professionals, as I would say moral communities, come to understand what's at stake in these cases. So these are cases from pediatrics. So for those of you who are not pediatricians, I'll try to

Dr. John Lantos

make some of the clinical facts clear. This was a case of hypoxic encephalopathy. A baby was born at full term. There was a cord prolapse that led to prolonged anoxia. And the baby's initial blood pH was 6.7. APGAR scores were 1, 1, and 1, indicating profound depression, physiologic depression, unresponsive to resuscitative efforts. But the baby was successfully resuscitated, was treated with hypothermia, as is the standard of care now for cerebral anoxia, and survived with a gag reflex, but no suck or swallow. In fact, the baby's only neurologic response was to withdraw from painful stimuli, although she was breathing on her own, so clearly not brain dead. The doctors sat down with the parents and recommended a do not resuscitate order. The parents agreed to that. The doctors then recommended a gastrostomy tube so that this baby who could not suck or swallow would be able to get adequate nutrition. And the parents disagreed and instead requested the discontinuation of any artificial fluid and nutrition. This was the first time in this hospital's experience, this group of practitioners' experience, that parents had requested stopping feeding. So they turned to sources of moral wisdom or professional standards. The American Academy of Pediatrics has a guidance about foregoing medically provided nutrition and hydration in children. And they describe cases similar to this one in which they say it's permissible if the burdens of treatment outweigh the benefits. And for a child who's thought to have

Dr. John Lantos

no hope of recovering consciousness or making any neurologic progress, the benefits of treatment according to the academy are minimal. The burdens on the family are enormous. And so it's permissible to stop. artificial fluid and nutrition other sources of moral wisdom like the catholic church say it is never permissible that we can only withdraw extraordinary treatments and fluid and nutrition should always be considered a basic necessity of life an ordinary treatment and it is always morally impermissible to withdraw those treatments those are the experts but they mirrored the sentiments of the people working on this case, and there was intra-professional moral disquiet or moral unease in this case. Doctors and nurses disagreed about what the appropriate response was to the parents' request. The staff was aware of the AAP's policy. Some quoted Catholic or other religious

Dr. John Lantos

but everybody seemed to have a strongly held opinion about what the right thing to do was in these circumstances. They just disagreed with each other. And in a sense, this case illustrates what it is that we talk about when we talk about ethics or clinical ethics or tough cases that raise ethical dilemmas. Here is a description of the key criteria for an ethics dilemma in clinical medicine today. All the choices are bad. All the options are legal. Fundamental principles conflict. Reasonable people disagree and a decision must be made. There's no non-decision option. Either this child will be fed or won't be fed. In theory, you wouldn't have to put in a G tube. You could continue in G feeds, but the parents didn't want that either.

Dr. John Lantos

So in this case, everybody agreed that all the choices

Dr. John Lantos

were bad. The baby would either die of starvation or live with no cognitive awareness. Everybody agreed that a choice must be made. The options were legal and reasonable. People disagreed. People made many defensible moral claims. Some people said parents have the right to make this decision. It's their baby. It's their life. They're the ones who have to live with the consequences, this decision. Properly belongs to them and our job as professionals is to counsel them guide them offer recommendations But ultimately go along with them other people said babies have a basic right to fluid and nutrition essentially the view of the Catholic Church that this is not a medical treatment This is a fundamental necessity of life and this should not be within the zone of parental discretion. It should not be something that parents are allowed to make a decision about it's simply not an option and in response to that people said artificial fluid and nutrition is or is not different from other medical treatments in other words is a g-tube and formula given through a g-tube more like giving a baby a bottle or the breast or is it more like giving a baby antibiotics or dialysis There were many powerful emotions. Somebody said, it's like taking away a blanket. We could leave a baby naked on the front steps. Somebody said, what made it so hard was that it took so long. When we stop a ventilator, babies die quickly. Other people thought that involving the health professionals at all was inappropriate. This was what the parents wanted. They should take the baby home and provide care of themselves that involving people who objected to this was itself morally problematic. Interestingly, studies show that health professionals have different attitudes about withdrawing mechanical ventilation than about withdrawing either TPN or enteral tube feedings. This is a complicated graph, but basically the darker the line, the more comfortable or in agreement people are. So at the top there with withdrawing mechanical ventilation, almost everybody surveyed here, and these were doctors and nurses working in NICUs, said it's permissible. They agree that it's sometimes acceptable to withdraw mechanical ventilation. But if you go down to tube feeding, you see there's much more disagreement. Many more people are very uncomfortable, strongly disagree that it's appropriate to. withdraw either enteral feeding or parenteral feeding. So the attitudes in this particular group mirrored findings in a broader survey of professionals. And this is a feature of many moral dilemmas. Alistair MacIntyre is a theologian who taught for many years at Notre Dame University. And in his book, After Virtue, he says the most striking feature of contemporary moral debates is their interminable character. They just go on and on. There seems to be no rational way of securing moral agreement when people have these fundamental disagreements. Or Stuart Hampshire, another philosopher, who wrote a book about conflict and justice, says there's normally in modern society a chaos of opinions and moral attitudes. A reasonable person hopes for a consensus, usually one in which their own attitudes and opinions are dominant. That can't always be the case. Somebody will have to compromise. Somebody will have to

Dr. John Lantos

give up their strongly held moral opinions if we are to continue to work together as professionals in a moral community or as citizens in a pluralist society. So what should give and how should the process of getting to agreement take place? Let me leave that case for now,

Dr. John Lantos

present another case that illustrates similar issues. Another baby, in this case with bad bronchopulmonary dysplasia, the chronic lung disease that premature babies get, we'll call her Jasmine, who was born very prematurely at 24 weeks, 550 grams at a prolonged course in the neonatal intensive care unit and ended up with bad bronchopulmonary dysplasia. She was dependent on a ventilator, had high mean airway pressures, a sign of the severity of her disease. She required a tracheostomy to continue her mechanical ventilation, a G-tube for feeding. She was in constant pain. got continuous narcotics and was thought to have cognitive impairment although was so heavily sedated much of the time that it was difficult to determine her cognitive status the doctors sat down with the family recommended withdrawal of life support the mother agreed but the dad did not and so life support was continued after six months jasmine Gradually improved, she was still in high event settings, but she'd made some developmental progress. She smiled, she reached for toys, and interactive. She was interactive and seemed to be intermittently happy. The doctors still thought her lung disease was so bad that it was hard to know if she would ever go home, but everybody was pleased with the progress that she was making. She had weaned off her narcotics. and there was some hope at this point particularly among the nurses that the expert care that we were providing may lead to jasmine's survival and maybe even a good quality of life at that point dad requested withdrawal of life support as background the parents that had infertility problems this pregnancy had followed years of fertility treatments and multiple rounds of IVF. The parents had been trying and continued to try to adopt another baby. And as we later found out just before the request for withdrawal of life support, their long sought adoption was approved and they now have a new baby, a healthy baby at home. So how should the health professionals respond to the parents' request at this point to stop Jasmine's ventilator and let her die. The doctor's views, and it was pretty much unanimous in this case, Jasmine's terminally ill. She has severe lung disease. The treatment is very burdensome. The prognosis is bad. And the dad's request, actually the parents' request, since mom continued to agree, was quite reasonable. And the doctors were prepared to stop Jasmine's ventilators. The nurses in this case had a very different opinion. They cared for Jasmine. That's a typo. Instead of years, it should be months. And now she was getting better. To stop now would make all her pain and suffering and all the work that the nurses did to take care of her meaningless. Furthermore, the nurses suspected the parents' motives and thought they weren't doing what was necessarily in Jasmine's best interest. But Now that they had a new baby at home, they no longer wanted to put in the work necessary to take care of this damaged baby. We had some multidisciplinary conferences in the NICU. And as you might imagine, emotions ran high. There was anger, frustration, love, grief, suspicion, some disdain for the parents, some disdain for colleagues. These were not pleasant meetings. There was a lot of screaming. a lot of crying. And one of the things that surprised me was talking seemed to make things worse instead of better. The more we talked, the angrier people got. Nobody could convince anybody that their view ought to prevail. Instead, as we talked, everybody dug in to defend their own beliefs about what was right or what was wrong in this case.

Dr. John Lantos

The anger, the sadness, the tears raised this fundamental question about moral philosophy and moral convictions. What is the relationship between these powerful emotions that we feel in some ethically controversial or morally stressful, morally distressing situations? What is the relationship between those strong feelings and our philosophical ideas or theological ideas or spiritual convictions about what is the right thing to do? Should reason shape our emotions or is it the other way around? Should our strong feelings tell us what philosophies we need to adopt? Can we learn to respond differently to a particular action or situation by paying attention to the emotions that that

Dr. John Lantos

set of circumstances generates? Philosophers have looked at this and there are two models of moral philosophy that take very different views on how reason and emotion relate to one another. Maggie Little, Margaret Little is a philosopher at Georgetown University in Washington, DC, and she describes what she calls the traditional or bureaucratic model of morality, where moral agency involves a clear division of labor by which reason is responsible for coming to moral verdicts about what is right or wrong. It then passes its report on to the will, motivation, and emotions, which take their orders from reason. This is the traditional view of many moral philosophers by which logic prevails, by which we should try to eliminate mere emotional responses to situations, to try to cancel them out so that we can reason more clearly and in that way do the right thing. Professor Little contrasts this with an alternative model, she calls it a feminist model, where the possession of certain desires and emotions is crucial for seeing what morality requires. That is, moral judgments begin with a gut feeling. They begin with an emotion that is then passed on to reason to evaluate. Not all gut feelings are correct, but everything starts with those primal feelings. Martha Nussbaum's another philosopher who has looked carefully at this and agrees with little. She says human emotions are not simply blind surges of affect arise from our animal nature. They have a cognitive content and the correct perception of a practical situation requires emotional as well as intellectual activity. Emotions have a valuable informational role to play within the ethical life. And she talks about how people learn morality a child does not learn its society's conception of love or anger by sitting in an ethics class emotions are taught to us by our culture our religion by the stories by patterns of interaction between the child and others and by recreations of those patterns children are taught culture and values through stories we learn how to respond by hearing the stories of our people And the great moral teachers have always used stories to convey moral lessons. But stories are complicated. They don't converge on a point often in quite the way that logical arguments do. So figuring out how to evaluate stories, how to take moral lessons from stories is the work of the most subtle and sophisticated moral teachers. This process of learning from stories continues through adulthood, and in a sense, complex cases like the ones I presented today are the key stories for clinical ethics. The stories that I presented came from tertiary care children's hospitals in the United States, so they may not be the same stories that would arise in other situations, stories in Hospitals that care for adults are certainly different. And stories from hospitals in different parts of the world would certainly be different. But in my view, every place has stories that raise these complicated ethical conflicts that create moral disquiet among professionals. And we have to figure out what lessons to take from those particular stories. We develop an ethos, a collective

Dr. John Lantos

view of what morality requires through these shared collective experiences. The doctors and nurses go through a case like this together and then start to tell stories about those experiences. And through those stories, we work out answers to tough questions like, what does it mean to care for a child with severe brain damage? When does caring mean continued life supporting treatment? And when does it mean allowing death to take place, letting go? What do we owe one another as colleagues as we go through the process of caring for such children? What do we owe to families? How do we work together when we disagree? And are some beliefs, some disagreements so intolerable that people cannot continue to work together and the moral community will end up selecting people who share a set of values to be part of the community. And it will lead to a sort of moral pluralism within a culture where one hospital may take one approach and another hospital take a different approach. Philosophers have started to talk about this phenomenon as the development of what they call communities of practice. And this was a great article in the Journal of Medical Ethics just last year. about how people are developing communities of practice around the COVID pandemic, but they arise and develop in response to every sort of controversial case. There are four characteristics of a community of practice. It's a joint enterprise. People are working together with mutual engagement, a shared repertoire of both practices and beliefs, and eventually a sort of collective practical wisdom about how to respond to these difficult cases. Richard Kearney is a philosopher who's looked carefully at the role of stories in conveying moral wisdom and creating a community of practice. And he writes in his book called Stories, the community comes to know itself in the stories it tells about itself. It is the capacity of narrative imagination to constantly transcend the status quo of any given society toward possible alternatives. In other words, this process of moral change that I talked about in dealing with this process of dealing with new situations that challenge us to at least reevaluate if not overturn our fundamental beliefs is a process that requires the telling of stories and the understanding of each character's motivation, each character's goals. Stuart Hampshire, who I quoted before, wrote that people who work together share fragments of a common ethic in their working life and a kind of moral complicity in the choices that they make.

Dr. John Lantos

So the role for ethics, and I say ethicist in this slide, but I think everybody is an ethicist in this sense, the role for thinking about ethics is to facilitate an inherently social process of moral inquiry. To have a community of practice, values need to be explicitly stated and ultimately shared. That is, we have to work together. We have to identify norms and actions that evoke these shared and stable social commitments. So we move ethics from the realm of an individual or private judgment to the arena of discourse and communal review. These quotes come from a wonderful article published about 30 years ago in a journal called The Hastings Center Report by a philosopher named Margaret Urban Walker, who went on to say that the ethicist's special responsibility is to keep open, accessible, and active those moral reflective spaces in institutional life where sound and shared process of deliberation and negotiation can go on that is to have the sort of meetings where people can express their anger where people can cry and be heard listened to treated with respect and hope by facilitating this conversation we can get beyond the anger beyond the shouting and come to some shared understanding some moral reflective space where people can continue to work together. Stuart Hampshire again talks about this kind of moral complicity. Perhaps that's the best that we can hope for is this understanding that we are, for better or worse, in this together. We are dealing with situations that are very morally stressful and we need to help each other as we go through this and find ways to work together.

Dr. John Lantos

People might want to know the outcome of the cases, but in this particular talk, for this particular talk, the outcomes don't matter so much. The point is that different institutions might have resolved these cases differently. Some places might develop a community of practice in which withdrawal of artificial nutrition and hydration is acceptable. Other places might develop a shared understanding that, no, it's not acceptable. withdraw fluid and nutrition. That's an ordinary rather than extraordinary treatment. Similarly, with the long-term ventilation for jasmine, different institutions might respond in different ways. But the point is to develop a process within each institution whereby a community of practice can develop. So I look forward to discussion. Once again, thank you so much for inviting me. Thanks for your attention. And again, I wish I could be there to enjoy the discussion in person.

Atufa Najib

So for our panel discussion, we are joined by Professor Jamshed Akhtar. He is the visiting professor at NICH and JSMU. He is the Dean, Faculty of Pediatric Surgery, CPSP. He is also the member of National Bioethics

Nuzhat Irfan Malik

Committee.

Atufa Najib

He has served as a member of ethical review committees at Ziauddin University and JSMU. He's the chair of ERC at the Kidney Center Karachi and NICH. He's also teaching diploma on the health care ethics and professionalism at the Shalimar Medical College Lahore.

Atufa Najib

Joining him is our second panelist, Dr. Saroj Saleem, Dr. Sarosh is an assistant professor, and she heads the bioethics department at Shalimar Medical and Dental College, Lahore. She's also a graduate student of health care ethics at St. Louis University, USA. Dr. Sarosh is a physician biocist with trainings in pediatrics and bioethics. She is the co-director of diploma in health care and ethics professionalism at Shalimar Medical and Dental College, Lahore. and she's pursuing her doctorate in healthcare ethics. Thank you so much, all of you for joining us. Professor John Lantos has also joined us for this panel discussion. With me is Dr. Noorzad Irfan Malik, who will be leading this panel discussion. And we hope to see questions from our audience as well so that we can lead this discussion in a very smooth manner. Thank you.

Nuzhat Irfan Malik

Thank you, Atufa. Assalamualaikum and good morning to the US. and people so thank you dr john landers it was a wonderful experiences shared by you and also at the same time heart-wrenching and most of the time these are the things that we as ethicists face a lot of times and especially in jasmine case i could not relate to it that the parents are not agreeing So I would request our panelists to share, according to our social or our cultural context, how do you see this scenario in our cultural context?

Dr. Jamshed Akhtar

Thank you, Nazat and Tufa. And thank you, Dr. for your nice presentation.

Dr. Jamshed Akhtar

I wanted to share one case from my own hospital. and but you have asked questions so i would like to answer that question first um the dilemma that dr lentos has presented actually um in our own practices we see that in public sector hospital there are a number of patients are already there and those who should have been in intensive care or in the incubators and they are lying on the beds actually and being referred out from different tertiary care hospitals most of them are private hospitals where the patients either cannot afford treatment or they don't find place there and being a part of a public sector hospital we cannot refuse any patient we have to admit them because the government policies here that nobody can leave the public sector hospital keeping that scenario in mind and when the parents see so many people so many children and newborns lying on the bed rather than an incubator so this dilemma of whether to

Dr. Jamshed Akhtar

withheld the support or the nutrition becomes seems to be very i mean not quite relevant to our properties probably our setup at this point in time but yes over the period of time uh we know that when we interact with the parents and the families we can see their faces we can communicate even without saying anything to through their body language and to the looking into their eyes what pain and grief they are actually suffering from so that is always there but your specific question whether to go for nutrition or not go for nutrition probably I don't see this is, at this point in time, the issue with the public sector hospital where patients actually do not even have the basic needs available to us.

Nuzhat Irfan Malik

Thank you. Thank you, Dr. Jamshed. We have a question from one of the... In fact, it's a question from our side. that decisions between quality of life versus prolonging life is a true dilemma. So how can we as clinicians put our own beliefs aside and be more mindful?

Dr. Jamshed Akhtar

If you're asking me, I don't think Saroj has unmuted herself. So I think probably I'll be answering that as well. Quality of life, the scenario which I just told you, quality of life then becomes such a redundant word for the people who are not even receiving a primary treatment in our setup. You see, every day, only yesterday, 46 babies, patients were admitted out of emergency in a unit which has only 60 bed capacity. Just think of, I'm not talking of... The neurology and intensive care, these are the separate awards where admissions are also made. So in this context, quality of life becomes such a redundant word for the people. I would say in context of public sector hospitals, yes, that is an important issue. Quality of life, without quality of life, prolonging the treatment means that you may be, in a way, if you are a very... materialistic that you are wasting your resources on somebody who is not going to have very fruitful personal contribute to the society. Sarosh, if you want to comment on that.

Dr. Sarosh Saleem

Yes, thank you.

Dr. Sarosh Saleem

Thank you for having me here. And I've been listening to such wonderful opinions and comments. So yes, answering to that, I think this is true. I mean, we know that all children have fundamental rights and we all have as healthcare professionals, as parents, as society, we all have responsibility to protect these rights. But financial issues and economics, it's a very harsh reality in our part of the world. And a lot of decisions, as Dr. Jamshed has also mentioned, they are in our society, in our healthcare system and hospitals, they are most of the times they're they are based on uh finances of whoever is supporting for uh the child's health care or even you know who's for where wherever the money is coming from either it's like a set of like in this hospital where obviously there there is a pool of money and there is a limited resource available and as dr jameshade mentioned in a public sector hospital where have limited resources and you have to cater each and everybody. So, this is a harsh reality. I mean, I think to answer specifically to your question, I think as as even Dr. Lentos mentioned earlier that we we can't actually mean we can try to but we cannot put our emotions or beliefs aside. That's what makes who we are and you know, we work when we work together, we bring these things along. However, it is extremely important to put aside our own biases and try to understand as even both of these speakers said that try to understand what the patient and the families where they're coming from and what their issues and what their values and beliefs are. So in Pakistan, what we see mostly is a sort of a unilateral approach towards decision-making. And that's mostly based on, um clinical criteria and it that that's why sometimes it's it's very troubling and difficult for us to understand why a reasonable uh why some reasonable parents would refuse a treatment that we'd be offering so it's really important to find out that why why would they be doing that and to reach out to them so that is an extra responsibility and probably because in our setup we we know that decisions are made like

Dr. Sarosh Saleem

as as a community individuals not make decisions and even for a child, the whole family, even what we call distant relatives, they are often involved in whoever is financing who is who is financially invested. It's emotionally invested in the child's care. Uh they all are a part of decision making and so it's really important to understand what where where they're um opinions are coming from and why they would refuse and what is happening and it's this is an this is the responsibility of healthcare providers and i think that's what basically is is the crux of communication that we really need to understand we we do have our own beliefs and opinions that they shape our decision making but we need to also find out and i don't think we can emotionally separate us this is again a very This has been a part of our training. And I think in Pakistan, we emphasize a lot on this to compartmentalize everything and not be emotionally invested. But that is not practically possible. And that would not bring out our human aspect of being there for the patients and the families. Any comments from Dr. Lantos or Dr. Mshayib?

Dr. Jamshed Akhtar

I just would like to add a few more things into it. I think in Dr. Lento's practice, the patients, the families, the doctors, they're all thinking, talking in English probably. And the languages they speak and the values they have may be different in terms of... Because they are advanced nations, they may have more knowledge. But in Pakistan, we are faced with the dilemma that... Most of the patients with whom we communicate, we do not know their languages. Many of them are from the cultures that we are not very much used to. Living in Karachi especially, we find it's very hard to communicate with the different ethnic groups which are actually

Dr. Jamshed Akhtar

the number of... of diseases in those communities is much more because they are migrants from other parts of the country, and they basically are here for bread for their families. I just would like to share a case where I would like to emphasize that it's not only the patient and their families that go through dilemmas. It's even the medical communities, the doctors themselves. They are also very much affected with the women they are dealing with. patients who are terminally ill because emotions run high and they are also psychologically depressed and when they go home they take burden with them to their families and they are also affecting their lifestyle as well and which most of the time we are not actually talking about that i just would like to share that an 11 year old a very healthy child who met with an accident and underwent a surgery in after resuscitation because he was in a collapsed state and he was operated and we found that pancreas, duodenum, biliary apparatus, everything was perforated and ruptured. We tried to do our best to deal with the patient and the surgery went on for five to six hours and then he needed cardiac, they went to cardiac rest, they revived during procedure and then ultimately he went on to the ventilator and with special support. and during this day the patient developed two or three times he was operated again because of the different complications which he was having during the course of his admission in the hospital throughout the his stay in the ward we could we have been interacting with the parents and if we go by what is written in the science that these patients hardly survive very high mortality in this so if we go by just the evidence-based data we could have counseled with the parent that he's not going to survive but when we looked at the the parents and their face and the 11-year-old healthy child so it was difficult decision that's very important for the for the doctors just don't go by the evidence there what is there in the in the literature but is the parents as well so multiple times when we try to communicate with the parents but then we look at their face and their their expressions and their their hope so we actually did not communicate the same findings to them we were hiding the truth actually from them but that is i think the best decision that we were taking at that point in time and every time when we go there they used to ask us And multiple times during the day, in Pakistan, you can approach consultant anytime, anywhere, in the corridors, in their rooms. So it's not like somewhere where you have to take appointment. So every time, number of family members used to meet the team who was taking care of. And everybody from the team wanted to say something, but then they find the hope, then they used to actually shut down. But ultimately, it happens that because they were in the hospital for a long period of time, then they themselves actually started realizing that their child might not survive. I think this is the time when we started telling them, yes, there may be reason. We were not blunt to begin with. So when we read literature, you should be... truth telling should be there the parent should be informed and whatever you want to say that but that that is not practical bookish

Dr. Jamshed Akhtar

approach is different but every family and patient has to be individualized luckily this patient of even after going through dormant and so many sepsis septicemic shock and everything but finally he actually got better which was a surprise to all of us and that was the time when we were so shocked and then we said it's only the god is out there who's actually is going to save us and i think this was the main belief uh based upon which both the parents and the families and and we ourselves actually were relying heavily upon so i think religion plays a most important role in that and over the period of time because the family was there they develop is in pakistan it's very easy for them to say uncle auntie a type of relations which they develop with the with the doctors actually so it's not like a very client's type of a relation with them so they would say uncle will our child get better or not so i mean these are the type of relationship they have developed and And the surgeon actually primarily who operated upon that patient was also in a type of depression because the lady was thinking about what I could have done differently that the child could have survived. And she was also emotionally very much disturbed. But when she saw that the child is also improving, that we were all very happy, I think. the the communication that has been done verbally and non-verbally through the expressions and the beliefs that we carried together and the and the responses that we see i mean these stories actually tell you that every encounter is different so if you try to make some kind of a policy policies can be the black and white but on in the ground reality would be very different probably this is what my take on this thank you

Atufa Najib

Thank you so much, Dr. Chamshed Akhtar, for sharing this case with us. It was very insightful because a lot of times what we do is we go by the book and we decide that, you know, this person is going to survive or will not survive. And based on that decision, we might take a lot of other decisions that would not have been very helpful. On the same note, you talked about 11 year old child or like, you know, we have a child who's 13, 14 years of age. And my question is more about communication. It's related to... would it be okay to communicate with the child who we know is terminally ill about his prognosis? Or how can we lead that conversation? Because I think the practical aspects of leading that communication, not just with the adolescent, but also with the parents, becomes very difficult. So if Dr. John Lantoise or Sarvesh, you can share some insights on that. Because parental beliefs and parental attitudes related to prognostic communication, related to maybe end-of-life care decisions are very firm in our society, or we can say that they lead those discussions rather than the patients leading those discussions. So if you can just shed some light on that, please. Thank you.

Dr. John Lantos

Yeah, thanks. Great discussion. Thank you, everybody. A couple of comments to Dr. Octor's point about the US being more homogeneous, perhaps, and everybody speaking the same language. That's not true. Our hospital has patients who speak 63 different languages last year, and we have translators for all of them. And many of the ethical dilemmas arise because of people coming from different cultures, speaking different languages, and having those different understandings. So I think that's becoming a much more common problem all around the world, just because people travel and move. And in some ways, Pakistan seems more homogenous because Almost everybody shares the same religious background. That's not true in the United States as well. And my first case about the withdrawing food and nutrition was in part meant to highlight the role of religion and how different religious beliefs might lead to fundamental disagreements about what ought to be done. to Dr. Saleem's point about the impact on professionals and interprofessional disagreement. Again, the second case was meant to highlight that. And we bring our values. And again,

Dr. John Lantos

in the US, the health professionals also come from many different backgrounds, many different cultures. Many have different primary first languages and different religious beliefs. So that when we sit down as a professional community, and try to have these discussions. We can't draw on a common heritage, a common set of cultural or religious understanding. So that's part of what makes these cases so difficult and contentious. And then the two cases they brought up, one about communicating a dismal prognosis and the other about whether to discuss a terminal illness with an adolescent. are both examples, I think, of this kind of ethical framework being in transition. 30 years ago, these would not have been dilemmas in most places. Nobody was telling teenagers their prognosis. The parents were seen as people who made decisions. Or before that, nobody would have felt a need to include the parents in the decision-making process or let their hope guide treatment doctors would have been more autocratic, more paternalistic, and would have made the decision themselves. So this move towards shared decision making, this move towards including families is itself a fundamental moral shift in the way we think about who has authority to make these decisions. And it leads to these sorts of disagreements and these sorts of dilemmas. And just a final point. on the trauma case that Dr. Octor presented, I think it illustrates the need for great humility on our part, particularly around decisions to withdraw life support. We may think there is no hope for recovery. We may think the best thing to do is to redirect towards palliative care rather than continuing aggressive life support. But I think we've all had cases like the one you described where our prognosis is wrong. And

Dr. John Lantos

that should lead us to some humility when we go and give these prognostic estimates.

Atufa Najib

Thank you, Dr. Dhanjas. Dr. Suraj, please go on.

Dr. Sarosh Saleem

Yeah, thank you. So, yeah, just to kind of add to this and to answer what your question was, I think it's it's really important. Even though it's really important to consider how our culture deals with children and you know we have such a paternalistic attitude. But it's really important to understand that children have this growing autonomy and as they are growing it is really important to make them part of the decision making as well and for adolescent especially it's very important you know and. I personally believe that children who are terminally ill or chronically ill, they have a very different understanding of life because of their experiences. And so their opinions matter a lot. And I'm sure you know a lot better than me dealing with children, oncology patients. that they have a very different kind of perspective and you know understanding of what life means and what suffering means and how they vision life and so I think it's really important and not certainly it is certainly challenging however we really need to improve our communication and you know deal with children in a way that respect them as persons as well because

Dr. Sarosh Saleem

Most of the time what we see is a very unilateral sort of decision making. Either it's from healthcare providers or from parents because what we see a lot of times in Pakistan is children don't even know their diagnosis and don't even know what surgery or treatment they're going through. So for especially for teenagers growing children, it's it's really important and they actually we don't tell them but they obviously know what they're going through because they know the best what they're actually going through and the treatments they're getting and everything. So yes, I think it's it's we really need to work on that and I would just like to quickly the question you've posted about.

Dr. Sarosh Saleem

supplemental feeding and parental nutrition, etc. at the end of life. I think that's why I shared. in this paper. Working in Karachi and working with some of the biggest hospitals, tertiary care hospitals in Pakistan who are serving children, I found out that there are no policies. There are no policy standard procedures that everybody knows of. So decisions are made on a one-on-one basis for a case-to-case basis. It's really important that we make policies and introduce these policies in our hospitals so that we have to make decisions at the bedside certainly the dilemmas won't end and we will still be making deliberate ethical decisions but uh at least it will be helpful and we really need to do some normative work from what we want to um so because as we talked about religion it's such an important place such an important part uh in our

Dr. Sarosh Saleem

in Pakistan, everybody is especially when it comes to healthcare or illness or talking about death. Religion is one of the most important part that we talk about. So but in hospitals at end of life, we really do not explicitly talk about these things. So I think it it really needs to come out and we really need to discuss and deliberate on. where our decisions come from and where should they come from and how we should be able to make these decisions because this is such an important part, but all our decisions are made on clinical basis. And we just talked about how evidence-based medicine or prognostication can be so difficult in individual cases. So I think it's really important to do some normative work in our part of the world and do... figure out things that you know and on the basis of religion or Islam that we want to would like to develop and make policies for hospitals and we do not have any policies for clinical ethics and we do not have any systems in the hospital. So only very few hospitals are doing these things and very few hospitals have ethics committees and you know so I think it's really important that we develop our own literature and do some work.

Atufa Najib

thank you so much everybody for sharing your opinions this is such an important topic and i don't think we have even um been able to talk about the tip of the of this topic but i think the most important thing is accepting and realizing that there are challenges that we are all facing uh may it be financial may it be related to training or may it be related to our own beliefs and values but to just like dr john lantos mentioned in his talk it is important to have those spaces available where people can come and talk where people can come and think about what policies should be there what sort of communication patterns should we be following um as a parting note one can you all give one suggestion one practical suggestion or tip on how can have this culture this healthcare culture where religious uh cultural values um parental beliefs and the involvement of parents is made possible within our healthcare cultures and how can it be part of it rather than it being at the very back end i feel like you know it's not like at the front the front is always making clinical decisions but considering their values, their beliefs always comes very secondary or at times doesn't even come forward. So can you just share one practical tips on how we can make it

Nuzhat Irfan Malik

possible?

Atufa Najib

To all the panelists, please.

Dr. John Lantos

I mean, I think the piece of my talk that you picked up on is crucial. whether it's the role of somebody who's designated as an ethicist or just a recognition of the complexity of decision-making and the need for this somehow creating a safe moral space where these issues can be discussed so that we can get them out on the table, examine them and build stronger communities of practice where people understand both the reasons for conflict Are they religious differences? Are they cultural differences? Are they philosophical differences? Are they differences about our beliefs about the prognosis for a patient or what's appropriate? Do we have different attitudes about the role of different family members? Is it okay to talk to a teenager about end of life decisions? I mean, I think people have fundamentally different beliefs, but we need to work together and respect each other. So somehow to create a forum in which for these tough cases, people can speak freely and be listened to respectfully and try to hammer out a collective understanding of what we're going to do, not just in an individual case, but for cases like this type of

Dr. Jamshed Akhtar

case. I think one of the ways is that we are actually celebrating the world cancer day and so many days like this every year and many of the hospitals do use oncology patient to get more funds from the public i think that is one forum where when you are inviting families of the children who actually have survived actually but you do not invite those families who the children of whom actually direct so if those can be i mean you can bring them together and share their experiences the way they went through the decision making difficulties which they faced and how they could have been helped more while they were still in the hospital and with the communities of doctor who have been working with them and the social uh the people in the social uh set up working with the people and also the religious scholars they can sit together on such occasions and can develop policies for the hospitals

Dr. Sarosh Saleem

Yes, I'd say simply first explore more. I think most of the things that we do are based on our assumptions, basically. The study I shared with you, maybe you can share with the audience, whoever is interested. we realize that there's hardly any explicit conversations about religion or culture. It's all about clinical or sometimes about financial issues. So, you know, we really need to first explore what our problems are, how we can improve our communication with patients and their families. And to be honest, just like just be more open to. difference of opinion and just like we said i said earlier that when a patient or family or parents are making some decision that seems unreasonable that might seem unreasonable to us find and explore uh what the reasons are so obviously certainly finding ways as dr lento said to sit together uh explore uh normatively case through traces and stories and everything and so talk about more and you know, find better ways of communication and just as a community.

Nuzhat Irfan Malik

Thank you to Dr. Saroj, Dr. John Lantus and Dr. Jimshed Akhtar. Definitely, it's a very insightful talk and the time is definitely limited. And we have to go to the next section. And before that, I would say that just as Saroj said, that we have to make the things explicit and communicating these things are not easy especially when you are and at the situation you're handling these things so the basic rule that we practice is listen more and talk less and that usually settles many of the things in most of the dilemmas because god has given us two ears and one mouth so we should make better use of our ears and with that i'll hand over to atufa for our next session thank you very much um

Atufa Najib

just one thing uh please do fill in the feedback form uh to get the cmae certificate um so moving on we are um in the first section we talked about pediatrics we were able to discuss about parental beliefs and all of those aspects in terms of prolonging life or prolonging death. Now, moving on to the next section, where we'll be talking about adult patients. This section is similarly divided into a talk and then followed by the panel discussion. For our talk, we have invited Dr. Mohammad Atif Akkar, who is Assistant Professor and Founding Chief of the Section of Palliative Medicine in the Department of Oncology at Al Khan University. Dr. Atif Akar is board certified in internal medicine, hospice and palliative medicine and geriatric medicine with the American Board of International Medicine. He is the program director for the postgraduate palliative medicine fellowship at AKU. Dr. Atif Akar relocated to Pakistan and he began setting up the city's first multidisciplinary Palliative Care Service at Aga Khan University Hospital in Karachi, Pakistan. So we welcome you and we will move on towards his talk first. Thank you.

Dr. Muhammad Atif Waqar

My name is Atif Waqar. I'm a Palliative Care Physician and the Chief of Palliative Medicine Services at the Aga Khan University in Karachi. And I want to start off by thanking the organizing committee for ICON 2022.

Dr. Muhammad Atif Waqar

for dedicating a session on clinical ethics to this very important yet very neglected topic, which I personally believe is one of the shortcomings of our existing medical curriculum. And by that, what I mean is historically and traditionally, our medical curriculum has focused very heavily on teaching the students and the trainees how to cure diseases. And whenever a point is reached where cure is no longer possible, how to control the disease. We've not been doing a good job at teaching our students and our trainees how to approach the care of a patient who has a condition that is incurable. How do we transition from cure to care for our patients? And hopefully over the course of the next 20 minutes, we'll be able to dive into these very important discussions revolving ethical dilemmas that we encounter in the provision of care for end-of-life patients. Just a slide on my disclosures. I've got no conflicts of interest and I've got no relevant financial relationships to disclose. The learning objectives for my talk today What I'd like to do is particularly talk about the ethical challenges in terms of decision-making that we encounter on a day-to-day basis in our ICUs, in our wards, and when caring for patients who have terminal illnesses. And hopefully we'll be able to talk about some clinically appropriate ways on how to address such ethical dilemmas when they arise in our clinical practice. So I'd like to start off with this very profound quote by Jalal ad-Din Muhammad Rumi. And he said, every mortal will taste death, but only some will taste life. And I'm truly fascinated by how Rumi back in the 13th century was able to very

Dr. Muhammad Atif Waqar

clearly articulate what I do and my colleagues do on a day-to-day basis, which is focus on quality of life rather than quantity of life, trying to empower our patients to have the best possible symptom-free existence with minimal suffering for our patients. And that leads me to something that is very unique to healthcare providers who who exclusively deal with end-of-life patients.

Dr. Muhammad Atif Waqar

When we're caring for terminally ill patients, it's important to understand that certainty and clarity in the decision-making process, that is very challenging. It's very unpredictable. It's very fleeting. What is needed is our ability to accept this uncertainty and this constantly evolving condition of the patient as they're dealing with the deaths physically, emotionally, socially, and spiritually. And given the complexity of these decisions, I wish there was a set of ethical principles or decision-making guidelines that can magically reveal an unambiguous right choice, but unfortunately none exists. It's never black and white for us when we're caring for a patient who's dying. We're constantly dealt with shades of gray and we're trying to figure out how we can best serve our patients given this rapidly evolving condition, rapidly deteriorating condition where every hour, every minute, every second, their condition is changing. Our ethical obligation as healthcare providers caring for the dying is to choose the best interventions that meets our patient's requirements

Dr. Muhammad Atif Waqar

in certain situations. The outcome of the decision-making process, it's determined by the patient's unique needs, their values, and the goals of care that we explore with them. There is no formula that can guarantee an ethically correct decision in all situations. The decision-making guidelines that we do have, they can help to clarify the rights and the responsibilities of the patients, their family members, of the healthcare providers who are providing care, and it can also help to reassure society as a whole. that deliberate decisions are being made in accordance to the relevant medical facts and the accepted ethical values so with that i'd like to list the various ethical challenges and the ethical dilemmas that we encounter on a day-to-day basis in providing end-of-life care this list by no means is an exhaustive list but at least it highlights the very important and very common ethical dilemmas that we face. The first ethical dilemma is pertaining to autonomy,

Dr. Muhammad Atif Waqar

specifically talking about how autonomy is honored and respected in our society in Pakistan. Often, we see this on a day-to-day basis where patients are often kept in the dark. where diagnoses, specifically terminal diagnoses, are not communicated or shared with the patient. And we have family members who are acting on behalf of the patient, patients who still do have the capacity to make decisions for themselves. But before I dive into that, I think I'd like to share some very profound insight from my esteemed colleagues, Dr. Farhad Muazzam and Dr. Rubina Arshad Khan, and I'll be reading verbatim what they shared. Being a patriarchal society for centuries, adult male members are considered the head of the family. Diagnosis and prognosis of terminal diseases are shared with them rather than the patient. These facts are usually hidden from the patient to have a positive outlook. lives of extended family members are entwined in a way that nothing is considered confidential the concept of individual autonomy is overridden by familial or collective autonomy um this is something that we struggle with on a day-to-day basis i've had many of my colleagues come to me um in moral distress because um they they feel they owe it to their patients to share the diagnosis, particularly terminal diagnoses with the patient themselves and whenever their family members tell them not to disclose that diagnosis. I think we need to understand A, that individual autonomy in the true sense is a Western concept. And for us to try to transplant that Western concept of individual autonomy in our culture, in our society, with our values, with our beliefs is a disservice. We need to understand that we need to adapt that concept according to our values here in Pakistan. And it's not just medical decision making. It's pretty much all major decisions, whether it's relating to finances,

Dr. Muhammad Atif Waqar

purchasing of assets or land or

Dr. Muhammad Atif Waqar

deciding marital affairs, we've always done these decisions collectively as a family. And we've always turned to the older adults in our families who kind of dictate how decision-making happens in the family. So just keeping that in mind, of course, we don't want to blindside patients and the truth telling is equally important. I think the best approach in such circumstances is to approach the patient and ask them, are you the kind of person who would like to know the big picture? Or are you the kind of person who wants to be bothered with the minute details in regards to your treatment and the decisions regarding your treatment? And you'll get a good sense of where the patient actually wants sometimes the patient may say that they do want all of the details and they do not want to be kept in the dark. And in those circumstances, we owe it to our patients, it's our ethical obligation to share the diagnosis and the information in terms of the treatment and the management plan with the patient. Of course, having family members over there is always very reasonable because they can help to guide the conversation.

Dr. Muhammad Atif Waqar

very often what i've encountered especially with the elderly population the geriatric population in our society is they will delegate decision making they will tell us to to talk to their son to their daughter to their husband to their wife and the reason they do that is because they know that their loved one has the best of intentions at heart. And whatever decision that they're going to make is the decision that the patient will take solace into. So with that understanding, if the patient does delegate the decision-making to their loved ones, I think we can be reassured that that delegation is itself an autonomous act and we are honoring and respecting autonomy if the patient has delegated autonomy to their loved ones.

Dr. Muhammad Atif Waqar

The next and very important thing that I would like to discuss is medical futility. Often this medical futility is, this term is thrown around left and right without truly understanding what medical futility entails. um even in the medical community and the medical fraternity we struggle to define medical futility we don't have a clear-cut definition but what i can share with you is um for all intensive purposes whenever we we refer to medical futility basically where we're talking about a a condition uh a situation where the patient is irreversibly dying. And the patient has reached a stage where continued disease-directed treatments are likely not going to produce any kind of physiological benefit. And at that point, whether we decide to continue the treatment or forego the treatment or terminate the treatment,

Dr. Muhammad Atif Waqar

it truly becomes optional. So that would be the medically correct definition for medical futility. What we need to understand is appropriate medical treatments do not necessarily have to include every effort to prolong life, regardless of the quality. of life. In fact, we need to recognize and we need to understand as healthcare providers that what should be done for a patient who has an acute reversible medical condition might actually be burdensome and unnecessary for a patient who's got a terminal illness. And to make that a differentiation is very important for us so that we don't end up prolonging the suffering of our patients Rather, we focus on what's important, which is keeping them comfortable and providing good end-of-life care. And this goes back to what I shared with you at the beginning of my talk, which is

Dr. Muhammad Atif Waqar

the way that physicians equate cure of diseases with success. And if their patients cannot be cured of their ailments, they internalize these feelings because for them that is accepting defeat. And we as clinicians, we're a very stubborn bunch. We don't want to accept defeat, which is why we continue down this road of providing very aggressive and very invasive treatments one after the other. In the oncological realm, we continue to provide first-line chemotherapy, second-line, third-line, fourth-line. We just never know when to quit. And what that does is that provides unnecessary toxicity to our patients. And rather than improving their quality of life, it just causes more unnecessary suffering. So we need to focus on what we call a good death. And the best way to define a good death would be an unprotracted, painless death without any kind of suffering, both to the patient and the family member.

Dr. Muhammad Atif Waqar

The next very important concept and ethical dilemma that we share in the provision of end-of-life care is withholding and withdrawing life-sustaining treatments. So life-sustaining treatments, traditionally the way that it's been defined is CPR, elective intubation, mechanical ventilation, and then the utilization of artificial nutrition and hydration. whether it be parenterally or entrally. But we need to understand that life-sustaining treatments can actually include a lot of other interventions, for example, surgery, dialysis, antibiotics, medications, hospitalizations. All of these could be argued to be life-sustaining treatments. From an ethical standpoint, we need to understand that there is absolutely no difference between withholding a life sustaining treatment versus withdrawing a life sustaining treatment. And to give you an example, if a patient comes to your emergency department in extremis, in respiratory distress, and you identify that the patient is in need of mechanical ventilation, and you have a conversation with the patient and their family members and they elect not to be intubated and they elect to allow the disease to take its natural course, that is what we would consider withholding. intubation or withholding life-sustaining treatments versus the same patient presents to your emergency department, you intubate the patient, you give the patient a time-limited trial of aggressive treatment in the ICU at the conclusion of which the patient continues to deteriorate. And then finally, you, based on the poor prognosis and consulting with the family members, decide to withdraw the life-sustaining treatment. From a medical standpoint, of course, there's a huge burden, emotional burden, psychological burden that we as healthcare providers, the next of kin have to shoulder because it becomes very, very difficult for us to withdraw interventions once they have already been initiated versus it's easier for us to accept If a life-sustaining treatment is not initiated to begin with, so withholding, we can make our peace with it, withdrawing becomes very challenging for us.

Dr. Muhammad Atif Waqar

And that leads me to advanced care planning, which is a very important tool in providing good end-of-life care for our patients.

Dr. Muhammad Atif Waqar

By advanced care planning, what I'm trying to... talk about is understanding and exploring the goals of care for our patients what is important to them what is the kind of treatments that they would want and the kind of treatments that they would never want for themselves should they develop a terminal or life-limiting condition and they should lose the capacity to make their own decisions. So one of the advanced care planning tools that we use very commonly is called advanced directives, which is a legal document where a patient who still has decision making capacity can actually complete two components, a living will to identify the kind of treatments in terms of life sustaining support that they would want and the treatments that they would never want for themselves. And number two, completing a surrogate decision maker, a healthcare proxy. to identify who would make decisions on behalf of the patient when the patient can no longer make decisions for themselves. Other advanced care planning tools includes out-of-hospital do-not-resuscitate orders and the POLST, physician orders for life-sustaining treatments. All of these are very valuable and very important tools that we can utilize in order to empower our patients so that they can decide in advance the kind of treatments that they would want for themselves and forego life-sustaining treatments, especially in light of a terminal or life-limiting condition. And the last important concept that I would like to touch on is the doctrine of double effect. And by that, what I'm referring to is a single act which may have two foreseen effects, one good and one harmful. That is not always morally prohibited, provided the intention is to benefit the patient and harm is not intended. Usually, a very common example is the use of opioids and controlled substances. at the end of life. And often there's hesitancy to prescribe these medications because they may potentially shorten the lifespan by producing a respiratory depression. What I wanted to share with you that the doctrine of double effect actually protects the healthcare provider because it's the intention with which the medication the opioid is being prescribed and the intention is to relieve suffering and air hunger or pain in patients the intention is not to cause death and by virtue of that it allows us to ethically and morally prescribe such medications so with that i come to the conclusion of my talk and i would be glad to engage with the participants in our question and answer session at the end Thank you very

Atufa Najib

much. I would like to thank Dr. Atif Akar for such an interesting and insightful presentation. What I took from his presentation is that culture factors and all of the things that are Western cannot be directly put forward in our culture, in our settings. So with this, we'll move on. to our panel discussion. For the panel discussion, we have been joined by Dr. Farhad Mazum and Dr. Ayesha Malik. Dr. Farhad Mazum is the professor and founding chairperson of CBEC at SIUT Karachi, Pakistan. She has also previously served as the founding chairperson of the Department of Surgery and the first Associate Dean of Postgraduate Medical Education in AKUH. Joining her is Dr. Ayesha Malik. Dr. Ayesha Malik is Associate Tutor at University of Warwick. She also teaches as Bioethics at University of Oxford. She's an expert member um of the research ethics committee um health research authority she is a hematologist by profession um and her teaching commitments include medical ethics both clinical and research and islamic um medical ethics applied and bioethics i would give um the lead to dr nuzhat to conduct

Nuzhat Irfan Malik

the panel discussion assalamu alaikum thank you very much dr atif vakar we could really relate to the points that were raised in your talk and welcome dr aisha and dr farhat muazzam to as a panelist of this session and i would like dr aisha malik to throw light on the religio-cultural aspect of communications in these uh difficult times and how we can bring the religion and the cultural context in these scenarios.

Dr. Aisha Y. Malik

Can you hear me?

Nuzhat Irfan Malik

Yes, we can hear you, Dr. Ayesha.

Dr. Aisha Y. Malik

This was a very, very insightful talk by Dr. Waqar. And there are so many points that he made. If I could just make a couple of comments on what Dr. Waqar said. that you know certainty is indeed an elusive concept and in medical decision making and particularly when patients conditions are ever evolving and prescriptive guidelines in many instances do not work of course everybody wants to work in the best interest of the patient though they may have different views about that best interest here i would like to add that you know keeping in mind the goals of care we could use what i been working on is a frenetic uh framework a practical wisdom framework which i think dr bakar also alluded to and keeping in view that familial autonomy versus individual autonomy or relational autonomy is important and from our cultural point of view yes uh relational autonomy is important and as dr bakar said that it is not necessarily heteronymous, but autonomous if the patient wants somebody from the family to decide in there. And I think that goes in relation to the

Dr. Aisha Y. Malik

proxy decision making also, because if there is somebody I rely upon, I will ask that person to make decisions on my behalf without feeling that I'm being pushed into asking somebody. Although, of course, there are instances where one can be pushed and we have to be aware of that. Then keeping in view the fact that open communication is a very important aspect of a doctor-patient relationship. And the art of dying that I think, the good death Dr. Waqar mentioned, that relates to the Islamic... point of the art of dying, which was termed as the, you know, the, the good death, the art of dying. And what does that entail? That entails the acknowledgement of a dying state. Then one can decide their preferred place of death. What is it that they would like to leave as a legacy and charity behind? Then being able to communicate with your loved ones. And what are the rituals at the end of life, especially for Muslims, to be able to recite the Shahada, to be able to recite verses from the Quran and things to that effect, being turned towards the, especially the Qibla. Then

Dr. Aisha Y. Malik

these decisions should be preferably autonomous, even towards, especially towards the end of life, and that is the sunnah. Now, when it comes to

Dr. Aisha Y. Malik

death and how we perceive death, the important thing to remember is that in Islam, death is not the end. The life here transfers to the afterlife. And for a Muslim, that is the basic... basic concept that makes them go through so that this life is temporary and we are going to transfer to the afterlife which is permanent and our trials and tribulations in the form of well you know relationships or health are just that their trials and tribulations and we if we go through them then we will either receive you know the good life or bad life the important thing here is that all muslims who are practicing muslims and who have a belief in islam or who are mormon and who are mosin is that that our illness as well as getting better are dependent upon the will of allah so we will seek treatment with this thing in the background that If we get well, it is due to the will of Allah. So this tawakkul and related to it or attached to it is tawbah. So they are both related to each other when it comes to a Muslim's faith in getting cured, being cured or not being cured. And then, you know, going towards the end of life treatment.

Dr. Aisha Y. Malik

The important thing that Dr. Vakar mentioned, which I think is very, very useful, is this advanced directives. This, I mean, I think it probably is new, but it is something which should be brought out and discussed with the patients. Yes, we must be careful. We must be careful as to the, you know, each particular case, there's no one size fitting everything. Each case has to be on its own merits and each case has to be discussed with, you know, with the patient and their family if they want to. But it is important that each, like I said, with this Ars Moriandai or the art of dying, to be able to plan ahead what is it that they would like to have done, you know, in case of emergency treatment or in case things deteriorate. So from that point of view, I think the idea of introducing advanced care planning or what we have in the UK as the respect, the recommended summary plan for emergency care and treatment for either end of life or patients who are going on for palliation.

Nuzhat Irfan Malik

Thank you, Dr. Ayesha. You're very right in saying that the religious plays a really strong role in these end of life decisions. And especially in our part of the world, we've seen multiple cases that I can recall one case where a child was on the ventilator and the father just wanted to continue the ventilator for 48 hours because he was going to a healer and he believed that a miracle would happen. So we believe that each case is different and you just cannot see all the cases. You cannot put them under one umbrella. So what I was, I have been thinking while dealing with such cases, and I believe that most of our colleagues must have been through this. So we should have, Dr. Farhat, I would address to you that, do you think that we should have some sort of hospital guidelines, especially when there are multidisciplinary teams are included and they all have their own opinions and sometimes it's really difficult to bring them to a congruent point. So, Dr. Farid, would you please add on to this?

Atufa Najib

Dr. Farid, we are unable to hear you.

Atufa Najib

Dr. Farid, we

Dr. Sarosh Saleem

still

Nuzhat Irfan Malik

can't

Atufa Najib

at this moment. Just a second. Let us just check it out with our technical team.

Atufa Najib

Dr. Farid, can you try again without the video maybe?

Atufa Najib

Actually, I think we'll move to a question for Dr. Atif Akar at this moment, and then we can sort out how we can take Dr. Mazum on call or some way.

Atufa Najib

Dr. Aziz, I have a question for you. Going forward from the discussion that Dr. Ayesha did right now, advanced care planning is something that seems very promising, especially in terms of, like you spoke about, that a patient is intubated in the ER and then we see how futile that is and how difficult it is for the family to then accept the fact that we are withdrawing that sort of a treatment. So... in a resource-limited country like we have been talking about since the initial part of the session, how can we make sure that in our OPDs, we are able to see what sort of wishes does the family have? Sorry, what sort of wishes does the patient have? and are they in congruence with the family because a lot of times when the patient is not in a position to make a decision then the families come forward which is our culture the interconnectedness the collectivistic culture that we are part of um so how do you think we can make it part of our everyday conversations with our patients

Atufa Najib

Dr. Atif, we are unable to hear you as well. If it would be possible for you to maybe switch off the camera so that we can hear you properly.

Atufa Najib

Dr. Atif, can you... from a technical team they're saying can you move to a place where maybe the internet is a bit better because we can't hear you even without the

Nuzhat Irfan Malik

video

Atufa Najib

OK, so Dr. Atif is going to reconnect with us.

Nuzhat Irfan Malik

Dr. Farid Moazzam is

Atufa Najib

on call with us. So we'll ask her to share her views regarding the question that Dr. Nozad had posed towards us. Dr. Farid, you can please proceed.

Farhat Moazam

OK, can you hear me?

Nuzhat Irfan Malik

Yes.

Farhat Moazam

OK, so the question that was asked was essentially.. about the issue of religion. And I would like to answer that because the issue is when you talk of religion, there is and can out of that, can there be some guidelines or other things that are available that can be helpful to physicians.

Farhat Moazam

The issue with Islam is that there is no one particular particular madhab. There are several madhabs and there are differences of opinion that occurs even amongst the fukaha. So the issue therefore is that, as I said on the chat, you cannot in clinical medicine, it is impossible to come up with any specific policies, etc. So the issue is every patient is an individual patient. Every case is different. So I think you have to understand what a particular two Muslims will have different values. You can have who can give you guidelines, et cetera, but in the arena of the clinics, Each patient has to be dealt with, and as we have said, you need to talk to the patient, find out what their values are. Their values may be different from your values. You and the patient can be a Muslim, but the values are different. I would like to take up another point, which was, number one, I would like to thank Dr. Bakar, as usual. He gave a very, very lucid presentation. The point I would like to talk about is on advance directive. Now, advance directive is something that came into the United States back in the 1980s.

Farhat Moazam

But advance directive has not worked very well. And let me explain to you why. The problem is if I, at the age of 40 years, make an advanced directive, by the time I'm 65, I may have changed, essentially, the way I look at life. In the United States recently, an intensivist has written about it, that a patient with an advanced directive came in 10 years later and wanted everything done. So the point I'm making is, and I think Dr. Waqar alluded to it, the issue is to proxy decision-making. And in Pakistan, one of the things is that all of us, we don't like to talk about debt. Culturally, in Pakistan, nobody talks about debt. You cannot go to your father and say can you please tell me what you want me to do when you're dying it's not done so the cultural context is the education maybe not our grandparents but us people at our age and younger that we begin to make our wishes known to somebody who knows my values so that when i am not able to say what i want done the physicians have the proxy with who to work out the end of life care perhaps dr bakar can say something about this because this is important so what has come up is when we take bioethics from the west and this came up also in the first half of the sessions we tend to pick up things like autonomy now as dr bakar says in the united states people are beginning to understand that this is a very difficult concept but we in this part of the world pick up these terms and then we face problems with applications so the issue of it i don't think it's family autonomy I don't like the word autonomy. We live together. We rely on each other. We are very, very interdependent, which includes the economical issues. And therefore, the decision making has to bring in, whether we like it or not, the patient, but also the family. And each family is different. Working in Indus, for example, is different from working at the Arahant University, and it's different from SIUD, where our center is, because the situations are very different. So I would like Dr. Vattar, if he can join us, to tell us a little bit in his experience, this issue of advanced directive versus... the suitability in Pakistan because of the culture we have, going and pushing and understanding proxy decision making. So I know if Dr. Waqar can join us, we are having some

Farhat Moazam

problems with it, but I'll stop there. So when we talk about Islam, we have to be very careful what we are talking about. All of us sitting around here, know that we are Muslims and we have very different values. So I stopped it. Thank you.

Nuzhat Irfan Malik

Thank you, Dr. Farah.

Atufa Najib

Okay. We'd like to see if Dr. Atif Akar is able to join us and we're able to hear him or else we can take him on call as well if that's possible.

Dr. Aisha Y. Malik

Can I just make one comment here, Atufa?

Dr. Aisha Y. Malik

the thing is that advanced care plans or directives and and proxy decision making are not mutually exclusive you see even with the advanced care plans families or or the person you um are related to uh do sit around and make those plans and it's me like at least um the person who's at the center of the whole situation, is able to give some voice to what ought or ought not to be done. And I think they are quite related in that sense. So

Dr. Aisha Y. Malik

Dr. Mazum also talked about values. And so where evidence-based medicine and value-based medicine, that is also coming up as a as a form of practice isn't it that you give this look the evidence-based medicine says okay one two three these are the treatment options and the values of that patient come into play and you say well treatment one may be the best treatment from the clinical point of view it is not coherent with the the values of patient a or patient b so all this all this needs to be juggled around and then a decision made which is in the best interest of that patient's values, that coheres with that patient's values, as well as his medicine. So the two may not be, so when it comes to decision-making, yes, it is important to have a shared decision-making model. And in our culture, yes, relationships are important, but we must be aware also. We must be aware of, like we said earlier, and Dr. Bakar mentioned, each case, has to be decided and discussed as an individual case in itself and not given a prescription.

Atufa Najib

um thank you so much dr ayesha for sharing your thoughts um and this is true that advanced directives um focus on who the person is and then bring in the family to a discussion about what is important i would just like to share a little bit about what we practice in our um department as a whole what we started to do was we started to talk about death about our own deaths um we started to have conversations around the fact that if i die would i want um if i am towards that end of life would i want to opt for a ventilator um have i uh you know decided have i prepared for my own coffin and all of those sort of things which made us more comfortable discussing that with our pediatric patients as well um so we'll try and see if dr atif akar is available um and we can hear him or else i'll just take him on call um like doctor we did with dr farhat mausam

Atufa Najib

Sorry, we are still unable to hear Dr. Atif. If it's okay, can I call you on your phone so that we can hear your thoughts?

Atufa Najib

I'll just ask my participant.

Dr. Muhammad Atif Waqar

Yes, can everyone hear me now? Yes,

Atufa Najib

we're able to hear you now.

Dr. Muhammad Atif Waqar

OK, thank you. Thank you, Atif. I apologize for the issues with the microphone. I'm so done with all of the online and Zoom conferences. I'm just waiting for the fifth wave to go away. And we can go back to the glory days where ICON was done physically and all of us could meet in person. So once again, my esteemed colleagues, Dr. Fayyad Mazam and Dr. Aisha Malik, they articulated it so well and I couldn't have said it better. But in full disclosure, unlike my colleagues, I don't have a background in ethics. And by virtue of my specialty, I deal with such situations where experientially I've taught and trained myself. And what I'm sharing with you is my own personal experiences. Unfortunately, we don't have directives in Pakistan. And as Dr. Monson has shared, the... expected outcomes that we we wanted with advanced directives unfortunately the evidence didn't support it and it's embarrassing for me as a palliative care physician to admit this because i'm a huge proponent of advanced directive this is what i do for for for a living what we do know is uh that having a an informed discussion an inclusive discussion

Dr. Muhammad Atif Waqar

members present for that discussion it makes a huge difference and the reason being is um Often when the burden does fall on the family members, it's hard for them to make any kind of decision. But when they actually hear their loved ones say this, articulate this, verbalize this, it takes a huge burden off of their shoulders. And it makes it easier for them to understand where their loved one, their father, their mother is coming from, and then for them to honor and respect those wishes. irregardless of whether or not they agree with that wish because you know let's face it when it's our loved one we don't want to see them go and often we in the moment become very selfish and we try to hold on to them for as long as possible without any

Dr. Muhammad Atif Waqar

regard to the quality of life or the pain or suffering that they're going through but it but this does this discussion And we need to understand it's not just a singular discussion. It is a discussion in flux that continues to happen on repeated visits. Because as the patient and their medical condition changes, their goals and their values change as well. And we try to understand what is important to them. And we try to engender hope, which is really important.

Dr. Muhammad Atif Waqar

The patients, they do become hopeless and we don't want them to lose hope. Even in the face of a terminal illness, we want to engender hope, but we've got to be careful. What kind of hope are we talking about? And we're not talking about false hope for a cure. We're talking about hope in terms of finding new meaning in life. And now that you've been dealt with this serious and life-limiting condition, What are the things that are important to you? What are the milestones that you want to achieve? And once we, myself and my team, are able to hear that from the patient, our obligation and our responsibility is how do we make that happen? And then we try and we try to follow through on that and we honor and respect their wishes and their choices. So I hope that answers the question. Thank you.

Nuzhat Irfan Malik

Thank you, Dr. Makar. Dr. Waqar, there has been a few questions posed and there are like two questions that, what do you mean by a good death?

Dr. Muhammad Atif Waqar

So Dr. Nozad, again, Dr. Ayesha Malik answered that question so beautifully that I honestly don't have anything else to add to that. But she very, very appropriately was able to delineate and identify an outline what entails when we talk about a good death

Dr. Aisha Y. Malik

right thank you this this is something sorry can i come in here sir

Dr. Sarosh Saleem

yes yeah

Dr. Aisha Y. Malik

this is yeah

Dr. Sarosh Saleem

the

Dr. Aisha Y. Malik

the the the art of dying or the asthma in the eye that i was talking about if you look at prophet sallallahu alaihi wasallam's death you would be able to differentiate all these various points that i made from that And that is that the acknowledgement of the dying state and your preferred place of dying, where he wanted to go to the afterlife or transfer to the afterlife, communicated with his loved ones. And then what was the legacy that he left behind and the charity, whatever charity he left behind. So all these things are part of a religious process. the broad religious framework that Prophet Muhammad left. So this art of dying or the good death that Dr. Waqar alluded to is indeed, I think when Dr. Waqar was mentioning that they have these discussions and I think that is a good starting point for the ethics of end of life discussions.

Dr. Aisha Y. Malik

And I don't know, what do you think, Dr. Vakkar? Is that not, to have these discussions, like Dr. Lentos was saying earlier, to have these public spaces or spaces where you can talk about these things. It's important to make people talk about these things so that that fear, you know, that there's always this fear of the unknown and death is an unknown. To get to, you know, overcome this fear. We all have this fear. we have many, many fears. So it's always best to be able to overcome this by talking. And I think Dr. Lentos' talk earlier and then Dr. Mukar's, that to have this discussion or this conversation, not only with the patient, but amongst yourselves as clinicians and healthcare workers, nurses, clinicians, everywhere. Everyone, this would be a good beginning.

Dr. Aisha Y. Malik

You want to go?

Atufa Najib

OK. Thank you so much, everybody, for sharing your views on this very important topic. I think what we all take from this discussion is that these decisions can be very difficult. These conversations can be very difficult, but they are possible. It's not like that this is a box that needs to be covered all the time. This is a box that needs to be uncovered, that we need to... keep on going back and forward not just with the patients whether they are pediatric patients whether they are are adult patients whether they are parents but these conversations need to happen within the clinical teams as well so that we all are at least if not completely aware but a little bit more mindful um and we are able to see um where ethics comes in and where ethics plays its role which is very very very important with the population that we are dealing with um we are really sorry for the technical errors that we had in between um

Atufa Najib

In times of virtual conferences, this is something that we all struggle with. But thank you so much, everybody, for staying with us. I would now like to hand it over to Dr. Nuzhat to conclude the session. And we just thank all of you attendees as well as participants for being part of this.

Dr. Aisha Y. Malik

Thank you. Just one point. You know, the plurality of opinions in fatwas and plurality of opinions anywhere is a good thing, especially when it is said in fatwas, because then that gives you a broader leeway rather than being, you know, when you're getting the blinkers on the side and you just follow one, which is going to cause problems for everybody. So I'm sorry, I just... I got, okay.

Nuzhat Irfan Malik

Thank you, Dr. Ayesha. Before I conclude, there's a comment from Dr. Farhat Mazam. I would just like to read that, that advanced directors are legal documents, pragmatically not feasible for general population, but having a proxy who can communicate with the doctor is doable. If we can educate our public to begin to speak of what they want with their close family members.

Nuzhat Irfan Malik

so uh we have all the speakers okay with that i conclude the session and the take home is that creating awareness in healthcare workers is the key aspect and without creating these this awareness we cannot expect especially the young doctors to jump to conclusions and to decide on their own and learning the art of communication is part of it very important part of it i would say and one thing that i learned from today's uh whole of this the from the especially from dr wakar's was that going forward has no limit we as doctors we are obliged to save lives and we really want to progress to every limit cross every limit to prolong not only just to cure the patient, but prolonging life. And I have witnessed a patient who lived for eight years in a vegetative state because the family and the doctors, it was the family's wish that the patient should just be living with us, whatever is the condition. And I don't know what was the feeling of the patient in those eight years. He was just alive with rolling eye movements.

Nuzhat Irfan Malik

um it's also the uh art of learning where to stop we do not know where to stop and making this awareness that there is a limit and we have to stop at some point and especially um like the financial burdens are also uh along with these things um and in the end i would say that it's the quality of life which is more important than a quantity of life and this is what the take-home message would be uh you can add your views as well

Atufa Najib

i'll just add my views in terms of my experience working with periodic patients and a lot of oncology patients um is that these conversation are um for for a better for a choice of better but i would say magical Because to see a child dying with dignity that Dr. Ayesha Malik has mentioned in her chat, dying with dignity and living with dignity and quality of life is something that we all want. But what we want for us... we need to give that to our patients um i'm not very well aware of clinical terms clinical outcomes but because i'm a psychologist by profession but um working with clinicians working with healthcare teams i've come to realize everybody wants the best for patient um it's just that having these conversations again and again and again would help us all um perfect art or maybe not perfect art, but maybe better art of providing such amazing treatments. And thank you so much again, everybody. And we would really love to welcome you all in person to our hospital and to our CECs as well, so that you can enlighten us more

Nuzhat Irfan Malik

with your experiences and with your opinions and feedback. Thank you so much.

Atufa Najib

And just last thing that I would like to add, please do fill in the form for the certificate to get the CME certificate.