The Christian and Muslim Perspectives on Palliative Care Conference – Day 2 AM Session

– I’d like to welcome
you all to the second day of this conference and the fourth panel which is entitled Medical Treatment Between Necessity and Futility. My name is Abdullah Al-Arian. I’m a professor of Middle
East history here in Qatar and I will be moderating
this fourth panel. I’ll begin by introducing our
special guests, our speakers. First, we have Professor
Baroness Ilora Finlay who’s a professor of palliative medicine from Cardiff University. Established the Diploma
MSc in palliative medicine for palliative care in
Wales in 2008 to 2017. President of Chartered
Society of Physiotherapy, the vice president of Hospice
UK and of Marie Curie Care, past president of the BMA, the RSM and Association for Palliative Medicine, also the chair of the
National Mental Capacity Forum for Ministry of Justice and
the Department of Health. The chair of the Board of Governors of Cardiff Metropolitan University, named a life peer in 2001
served on the Select Committee on Assisted Dying for the Terminally Ill and co-chairs the think-tank
Living and Dying Well and as a deputy speaker
in the House of Lords who’s also named Welsh
Woman of the Year 1996-97 and has held visiting professorships in the Netherlands and Australia, in 2008 was named Women Peer of the Year, in 2007, the Parliamentary
Charity Champion and in 2014, Welsh Livery Guild Lifetime, recipient of the Lifetime
Achievement Award. Also joining us is Dr. Ayman Shabana, an associate research professor here Georgetown University in Qatar. He received his PhD from
the University of California in Los Angeles, his MA
from Leiden University in the Netherlands and his BA from Al-Azhar
University in Egypt. His teaching and research interests include Islamic legal
and intellectual history, Islamic law and ethics,
human rights and bioethics and he’s the director of the
Islamic Bioethics Project which has been supported
by three consecutive grants from the Qatar National Research Fund National Priorities Research Program. In 2012, he received the
Research Excellence Award of the Qatar Annual Research Forum and during the academic year 2013-2014, he was a visiting research fellow at the Islamic Legal Studies
Program at Harvard Law School. He is author of Custom in
Islamic Law and Legal Theory in addition to several
academic journal articles which appeared in Islamic Law and Society, Oxford Journal of Islamic Studies, Journal of Religion and Science, Hawwa, the Journal of
Women of the Middle East and the Islamic World, Religion Compass, and Medicine Health Care and Philosophy. So each speaker will have
roughly 25 to 30 minutes to speak and afterwards, we’ll open
it up to a discussion. So, please, Baroness, thank you. – I was asked to speak
on medical treatment and going between necessity and. (speaking off mic) I think it’s important when you are gonna make each decision about is it necessary? Is it futile? Oh, I’m sorry, I mustn’t wander around. I beg your pardon. Not wired for sound, okay. When you think about any
decision that you’re gonna make, I think there are a few things. You have to say is it necessary? Have to do it? Or would it be wiser to not do something? Masterly inactivity. Is what you’re going do proportionate to the problem that you’re dealing with and how does it match
with that person’s wishes, values and feelings. Not those of yourself, the
institution but that person but most importantly, any decision actually at the end of the day has to be. Whoops, sorry. The person’s decision, not your decision and to take a decision, they
must have the mental capacity to take that decision at that time. So, I’m gonna try and
address those aspects during the next few minutes. I think it’s also important to remember that people die of different
things around the world. So it’s very easy from our
highly Westernized areas to think about deaths
from cancer but actually, in some parts of the world, the pattern of death and dying is really very different indeed and these are the just with two WHO maps for cancer and HIV. Yet, what we do and the way that we behave has to have a moral
and ethical consistency has to be internally
consistent around the world although what we may be dealing with and the resources we
have will be different. Cicely Saunders who is really the founder of the modern hospice movement said how people die remains in the memory of those who live on and indeed, John yesterday spoke about the experience 20, 30, 40 years ago of somebody which completely influences the way that they approach dying today. So I think it’s important
to think about what happens before the dying starts in that period when the light is beginning to fade. Think about how people
die and what is available because what is available in
many countries in the world is far removed from the luxury
of the developed countries where we’re able to prescribe
morphine as we want and so on but sometimes, we resort to
morphine more than we ought to and we forget about being the person. The doctor is a medicine,
the doctor’s the drug, the nurse as the demonstration
of care and so on and remembering that those
legacy of memories get handed on. So I just want you to think for a moment about your own experience. How many of you have been with more than 20, 30
people who are dying? Right, about half the people in the room. Okay. Has anyone here not been
with one or two people who are dying? Okay, so for you, this is a kind of completely new experience. It’s worth, for the rest of you, thinking about your own
experience how you reacted at the time and particularly
in the time before. In ethics, we talked about autonomy as if somehow, autonomy is a new god in our secular societies. As if we worship autonomy
rather than anything else. The self becomes important and yet, people don’t recognize it is relational. Onora O’Neill wrote a very good paper about the relational nature of autonomy and I put this photo in because this man has
got end stage malignancy and the decision making
for him was to go home and the most important thing for him was to be able to hold his grandson. And I think the
interconnectedness of two people and what is handed on and I’m sure as that little boy grows up, that photograph will epitomize
his loving grandfather and will probably hugely
influence his life. So what about treatment
decisions as we take them while we weigh up in
that sort of scale pan that we all have in our heads clinically? We weigh up the risks and the
burdens against the benefits, and that has to be across a large scale. And it is not one big decision, it’s lots and lots of decisions every day. It’s even down to the decision about do we turn somebody now? I don’t know how many of
you have had the experience. I had once thinking though we
really must turn this patient. So I went to help a
couple of the nurses turn a rather large patient and
that was a bad decision because actually, what happened was that all his secretions shifted and his breathing went from
being quite nice and peaceful to becoming quite stertorous. He died shortly afterwards. Now, he was gonna die anyway. We didn’t kill him by turning him but every decision, it isn’t
big treatment decisions, it can be what feel like little decisions make a difference to what happens. And when we talk about
the decision outcome, we’re thinking about the
quality and the quantity of life about how things will be and of course we’re guessing
because we don’t know. Cicely Saunders spoke about total pain and I would have to say in all the years that I must have looked after, at least 20,000 people who are dying, I have never seen somebody
with overwhelming pain who did not have a physical
cause to their pain, but I’ve seen people where
people had missed the diagnosis and not realized what
the physical cause was, so been treating the wrong thing. But I have seen countless people where that physical experience
was dramatically increased because they had distress
that was emotional, social or spiritual. The person in conflict who internally doesn’t understand why me? What did I do to deserve this? Why is God killing me now
leaving my small children? And so on, so it is those domains that you have
to look at as well and listen, otherwise, you won’t manage their pain. Just a very brief anecdote but once, some years ago, I admitted a lady because she was on more than
one gram of morphine a day and still appeared to be in great pain. And all we did was listen and listen to what had been happening. It turned out, yes, she had breast cancer, yes, she’d got bone metastases
but she had been abused by her husband for many years
and felt completely trapped. And when we spent time listening to that emotional and social pain and her spiritual distress
’cause she felt abandoned, she’d been brought up in
quite a religious household and felt abandoned. She went home on 30 milligrams of morphine twice a day
with good pain control. We didn’t change her medication other than to bring it right down, what we did was we just
listened in those domains. And indeed, listening is
our main therapeutic tool and this is the Chinese
symbol for listening and I think it kind of says it all because you don’t just
listen with your ears, you listen with who you are. People tell you things because
of your professional status. I have been told things many times where people say I’ve never
told anyone this before but, and you know that’s crucially important. You also listen with your eyes, you look for all those nonverbal cues. Over 80% of communication is nonverbal but above all, you listen
with undivided attention and you listen from the heart. All know the person when
you’re talking to them who isn’t listening with
undivided attention. They’re scribbling, they’re computing, they’re doing goodness knows what and you know when they’re
not listening from the heart because the person who’s
listening from the heart, you feel emotionally that
they are empathizing. So what are we trying to do with all these difficult decisions we take and when we decide whether to do something or not do something? Based on, oops. Oh. Has a wonderful habit of
coming and going, it’s great. We’re trying to improve
reality to make today a little bit better and to make tomorrow a little bit better than today but you can only do that
if you help people reset their hopes and aspirations
to be realistic. It may be completely unrealistic to plan something six months
so why not bring it forward and do it in six days? The fastest I’ve ever arranged a wedding was 2 1/2 hours, start to finish. And it was great. Lady had six children,
she wanted to legitimize the children before she died. So one of the nurses went
down to a local store and bought six matching
dresses in different sizes. It’s quite a cheap store but
they were quite nice dresses. Another nurse ran home and
brought in her wedding dress because we thought it would probably fit. Our local chaplain came and
did all the official paperwork, special license and everything. We found some flowers
from somebody else’s room and brought them round. We found a bottle of sherry because we want to have
a bit of a celebration and somebody in the kitchen
didn’t have time to bake a cake so ran out, bought one but
then decorated especially and then we had to get
her brother out of prison. That was the challenge. So yeah, yeah. We did, he was accompanied
by prison officer but that was fine. So, going back to that scale pan deciding what is necessary
and proportionate and how it matches someone’s values. We need to think about that
early, not in that blue box which is when somebody’s
dying, dying, dying. You’re too late. Right at the beginning
when people are stable, that’s the time to have the conversations about we’re doing this
but have you thought what you would want if
things don’t work out as we hope they will? Have you thought what you would want if your disease progresses faster and we all hope that we’re
putting it on hold for a bit? That’s the time to
explore people’s values. When you’re in a crisis
when something is sudden, unexpected, as perhaps, a
spinal cord compression, it’s much more difficult
to have conversations then. And then you get that
period where people decline and I’m sure those of you that have seen several people dying know, you think it could all go on and it’s fine and then they sort of slide down a slope and they look a bit sweaty and a bit pale and you think something ain’t right, you can’t put a finger on it. You need to have a background about what type of person
they are and what they want. But throughout all of that
phase through this long journey, the whole time, I think
it’s worth remembering that you matter because you are you and you matter to the
last moment of your life and we will do all we can, not only to help you die peacefully but to live until you die. This isn’t waiting for death,
this is about actively living. Every moment. Great 2 1/2 hours that girl had and actually, she died a few days later. But nobody should underestimate
the power of the doctor. How many of you ride bicycles? How many of you’ve been on a tandem? Yeah, okay. so you know the person
who holds the handlebars is the person in control. Yeah, my husband always
makes me go on the back. But I put myself on the
front for this cartoon because actually, the doctor has control in the consultation. The way that you steer
that decision making, you will influence whether
you go down the necessary and proportionate road
or whether you go down the road of futility, and actually, you’re probably
shorten your patient’s life if you go down futility because you do all kinds
of unnecessary things and they’ll get
complications and they die. But I think it’s also worth remembering, this isn’t about adults and old people and people with dementia. 6% of the world’s children are dying and in amongst the adult population, there are a lot of young adults dying leaving children orphaned
particularly in Africa, the whole parental generation
stripped out by HIV, AIDS. So, even when you’re
dealing with children, you need to let the family, the whole unit have a degree of control
over how they do things what they want. This book I would recommend to you if you’re looking after children at all because it was written by
mum about Sacha, the boy who was dying of a brain tumor and she describes how she struggled against all of the
well-meaning professionals to do what Sacha wanted and everybody knew that
Sacha was gonna be dead soon, so why not let him live to the full and the family lived to the full? But the other thing about children is to remember that legacy
that lives on in them. And looking at schoolchildren in Wales, we did a study and found
that 10% of school children have suffered a serious bereavement and I think that is a low number compared to most other parts of the world where children have lost
a parent, a sibling, somebody close to them,
a classmate, a teacher and actually, they need
attention and bereavement care needs to come in then too because it gave you
influence the next generation because how they make
decisions later in life is based on their
experience and their memory and how they feel about something. The person who is phobic
about going to hospital is gonna be much harder to treat than somebody who’s happy to
have a conversation with you. But don’t forget that you as
clinicians also are influenced, but I saw somebody like this before and it didn’t work out
as the guidelines say. That’s a huge influence on
the way you behave as well, how you steer that handlebars. Kath Mannix and referring to
Claude who she worked with has written a book and I think that in our more Western world where we don’t see death
at home so readily, it’s locked away, people taken to hospital when they deteriorate, he
was rushed to hospital. I’d never heard of anyone
being slowly taken to hospital. They’re always rushed
and then they always die. Well, of course, they die in hospital because hospitals full of
people who terribly sick anyway. But actually, for most people, dying is not the sudden presence of death but a gentle absence of life. Life slips away if dying is well-managed. And Kath Mannix has
written a book of stories and I really would recommend this to you, it is beautifully written, a
fantastic tool for teaching. Little vignettes of patients
and she’s put challenges and things to think about afterwards. She’s had amazing reviews being put up for book awards and so on. She’s a consultant in Newcastle in the UK and she describes too what
happens when a person dies. They become weaker and
frailer and slip into a coma. No, they do not go to sleep. You tell a child mummy will go to sleep, that child will be
frightened of going to sleep. No, they slip into a coma
and their breathing slows. There’s nothing sudden and
then people suddenly notice they’re not breathing
anymore, there’s no heart rate and then you see those
changes and they’ve died. And I think if you are with somebody and you go a few hours later, they’ve changed significantly and I also wonder whether
that’s actually the soul has now left the body. There’s something different,
they look different. But let’s think of for a moment about all those difficult decisions as you steer that tandem down
the road of patient care. Does somebody have capacity
to make a decision? Because you can’t dump
decisions on people. I’ve seen now more and
more people say well, you have a choice, you could
do this so you could do that or you could do the
other, what do you want? And then the patient
says well if you were me, what would you want? And perhaps the conversation, a phrase I quite often use is look, if you were my brother or my sister or you were my aunt or
my uncle or whatever, I think I’d probably veer
towards such-and-such and they’ll say, great, thank you doctor, that’s what we’ll do. They want somebody to guide
them who’s seen all this before because they haven’t seen it before. Now, what do you need
to make any decision? While you need accurate information, you need the capacity
to take that decision and it must be voluntary. And that is any decision
whether it’s buying a car or washing machine,
consenting to a treatment and if you are going to
decide to end your life through physician assisted
suicide or euthanasia, you couldn’t take a bigger decision so you need these big time. Let me just run over some of the issues. Well, in assessing capacity for start, people have to be able to
absorb the information, retain it, think about the implications for self and others, so weigh it up and then communicate their decision. I’ve been reading the case
reports from the Netherlands, official reports from their
euthanasia select committee and have been alarmed at people
with learning difficulties who have had euthanasia. People with psychiatric
illness and depression, that has been the reason
they have had euthanasia. I really worry that the
capacity assessments have been inadequate. What about the patients on medication? Steroids alter the way people think, morphine alters the way people think, amitriptyline alters the way people think, metabolic disturbance
does and so on and so on. I think paracetamol probably, there isn’t much evidence of
it altering capacity, hugely and the nonsteroidals
probably not too much but taking antiemetic like cyclizine, there’s evidence that
that will actually alter your mental capacity. Now, capacity looks simple but actually to assess it properly, it’s complicated. People with motor neurone disease or what, so, most of you will call it ALS. 30% of them have actually got
impaired cognitive ability if you test it properly and then the other things when people are thinking about requests for death is hopelessness and depression
are mutually reinforcing. Major depression, of course. Demoralization in the clinician results in demoralization in the patient. So, we are infective, the way that we behave
influences the patient’s mood. And what about information? Well, don’t anybody believe
that we get diagnoses right because we don’t. Post mortem evidence, the
Royal College of Pathologists gave evidence to our select committee and told us one in 20 post-mortem
showed the person died has something different to whatever they were being treated for. We are not very good at
getting accurate diagnosis. And asked for prognosis, well, toss a coin is no more accurate than that. It’s a guess. My biggest prognostic error
was somebody who in 1991, I and three other senior clinicians thought would be dead in three months. Fast forward, he is still alive today. In fact, he was texting me a few days ago because he’s under threat
of losing his benefits but in the meantime, he
didn’t die but his wife did unexpectedly and he has brought
up the three children alone and he says, what would
have happened to my kids? They would have gone into care. And they’re delightful kids and his son actually does our garden. He set up a gardening business, so I’m still in touch with
them as a whole family. But you know, even when you think someone is dying, dying, dying and
you set the family down and you say, I really think
you should stay overnight and you should call your son
and daughter in, et cetera, well, 3% of those improve. You go round in the ward round, the patient’s sitting up
in bed having breakfast and the family are completely wrung out. But the difficult one in all
of that is the voluntariness because I know, as a doctor,
I cannot detect coercion. I cannot detect the person whose family through subtle conversations
have made them realize that they’re becoming a burden, that their financial costs of care are draining the inheritance
from the next generation. And I’m afraid not all
families are loving families. Most are but I’ve been taken in big time and I think I’m quite cynical, but I really have. And what about the influence
of the demoralized doctor? That is a pressure,
that’s a, you know, oh. Oh, I’m sorry, there’s
nothing more that we can do. What a damning statement. I’ll abandon you, it says. And the doctor judge voluntariness? No. You see we can’t go and say,
can I see your bank account? Can I see your will and
when you changed it? We can’t cross-examine or interrogate what’s going on in a
household which a judge can. So, we will never know that the money is leaking
out the bank account, that the will is recently been changed to leave it all to
somebody else and so on. And then yesterday, and I put this in because it came up in discussion yesterday about best interest decisions. And I think it’s really dangerous. People don’t understand best
interest decision making. It is not about your interests or the interests of your service, it is what is in the best
interests of the person in front of you. Their wishes, their
feelings, their values. It’s that weighing up. And so even if somebody appears confused, you must still encourage participation. Identify everything that’s relevant and find out all you can about them, what type of person were they. And have they made an advance
decision to refuse treatment? So have they made a do not attempt cardiopulmonary resuscitation order? I hope nobody will go away from today talking about do not resuscitate
because it is rubbish. Everything you do is resuscitative. You give a dehydrated patients fluids, you’re resuscitating them. An insulin to a diabetic,
sugar to somebody who’s hypo, antibiotics to somebody who’s
bordering going into sepsis, those are all resuscitation. Even catheterizing somebody
who’s in severe retention, actually, is a form of
resuscitation because if you don’t, the outcome would be absolutely terrible. So, it’s very specific. If you’re not gonna do something, what is it you’re not gonna do and why are you not gonna do it? And actually in people who
are dying, dying, dying, CPR is not gonna do anything anyway. So, what’s the point of
running down the corridor disrupting everybody? Why not let people sit there
peacefully holding a hand by the bedside, having a cup of tea. So much better than a zap and
the body jumping on the bed and you know that they’re dead anyway. But the other thing is,
actually, can things be improved? So if you took the dose of steroids down with their head clear, if
they have a little bit less analgesia so they got rid
of those fuzzy side effects but still maintain the analgesia, would they think more clearly? Would that be better? Make a decision. And it’s really important to
remember and it is in UK law in the Mental Capacity
Act that your decision, the best interest decision
must not be motivated to bring about the person’s death. And the reason, of course,
is you have no interests when you’re a corpse. When you’re a corpse, you’re a corpse and it is the duty of
somebody else to dispose of that mass of dead cells. You have no interest even if you. Will you hand it over property, you’ve transferred those
interest to somebody else, they’re no longer yours
but whilst you’re alive, you have interests and you can still, even if it’s a minimal
level, have cognition and I worry about people who
get labeled as things like prolonged disorders of consciousness who actually have locked-in syndrome, about 48% of people
with locked-in syndrome are not diagnosed properly and they actually have a
huge degree of awareness that people have never realized. So, what about refusing treatment? Well, if you’re refusing treatment, you can’t be treated without consent and you can refuse something
even if it’s life prolonging but it must be the
patient’s decision to refuse or you’re not even instigating or you’re withdrawing because it’s futile and you are not killing the patient. Take someone on a ventilator, they would have already died
from their disease previously, the ventilators kept them alive, you take them off the
ventilator for whatever reason, you care for them using
the guidance we have, they died peacefully on
average within 35 minutes. Not distressing, not
breathless, you managed that. That is completely different to euthanasia where you give them an
overdose of drugs deliberately to bring their death forward in time and they would have lived for
days, weeks, months or years, you do not know. I hope that’s clear. When you’re stopping or
withdrawing treatment, they’re dying of their disease. Funnily enough, there is a 100% mortality associated with life, so
they’re gonna die at some point of their disease. You haven’t killed them. In around the world, of course there are
different bits of legislation and just to clarify and
if I may take two minutes and I’m praying indulgence here, so please bear with me. And if you want me to shut
up, just go like that now. Okay, nobody’s cut my
head off, that’s fine. And this is not about a
little bit more morphine, this is not about putting
up a syringe driver because they can’t swallow any more. For assisted suicide,
they take nine or 10 grams of barbiturate. The most that you would ever
use therapeutically today would be 200 milligrams to control fitting which you can’t control
by any other means. So just do the sums, 200 into 10, 200 milligrams, 10 grams,
okay, it is a massive overdose. What do you do for euthanasia? Well, you inject a
short-acting anesthetic agent, sometimes, followed up by
a curare like substance or sometimes, mixed now in
Belgium because apparently, they got the syringes the wrong
way round a couple of times and the person is totally
paralyzed, can’t move a muscle, they die of asphyxia. Okay? That is this wonderful peaceful death that people talk about. Nobody has any idea if they’ve
regained consciousness or not because it’s not monitored
and when you look at them, they look as if they’re peaceful because they’re totally paralyzed. So, what’s happening? Well, it does seem to take
off a bit, doesn’t it? The blue line is the
number of prescriptions written in Oregon and the orange line is the number of deaths in Oregon. Oregon is a very small state, 3.8 million, it’s only a tiny bit bigger than Wales but their numbers are going up. What about completely
different socio-economic and cultural area? Well, Oregon’s been held up
as a model to many places but actually, it’s been
described as being no better than a leaky boat, because one of the criteria is that people must have
a six-month prognosis. Well, you can’t tell
that anyway but in fact, that six months is based
on what would happen if their condition wasn’t treated. So every insulin-dependent
diabetic is immediately eligible because if you don’t give
insulin to a diabetic, they will die. In the pre-insulin era, one
of our relatives aged 23 died of diabetes. Died quite rapidly because he
had no insulin, no nothing. So, it’s really not as
watertight as people claim and in the Netherlands
where they have euthanasia, they can also have a
physician assisted suicide but once you’ve got euthanasia,
it hardly ever happens. That’s the numbers, going up year-on-year. About one in 23, one in 24
of all deaths, all causes are now by euthanasia. In Belgium, it’s higher than that. It’s probably about one in 22 and in Belgium, they probably only know about half of the deaths
that there are by euthanasia. It becomes really
normalized across society. And what are the problems? I think the big problem
is that we’re actually living with uncertainty all the time and we don’t recognize it. We kid ourselves that there’s certainty. We kid ourselves that
we can make decisions and what we decide will happen. No, it won’t. Life is not like that. I hope every one of you gets home safely but the chances are that on the way home, something will happen to some of you. If all is that you lose your
luggage, then that’s great, God has been good to us
all but it may be somebody has a nasty fall, gets a head injury, heaven forbid the plane
falls out the sky, who knows? We don’t know and yet we pretend that we can control things and we can’t. So, thank you for listening
and indulging the time. – So one of the central of questions in Islamic bioethical discourses revolves around the moral
status of medical treatment. Islamic scriptural
sources include references that emphasize both physical. Quran is described as an
important source of healing and one of the divine
names and attributes. But, of course. While some references
underline the power of faith. Ritual as well as physical ailment, other references don’t call out the utility of medical treatment. Some references also emphasize the religious significance of illness and its role in the
explanation of one’s sins. They indicate that the
proper attitude of a believer in such circumstances, with genuine faith and
trust in God’s will. These different scriptural sources inspired extensive discussions
in the Islamic tradition on the ethical, legal
status of medical treatment. But beyond mere permissibility
or impermissibility, this normative discourses revealed particular views on
important logical questions such as the efficacy of causes by knowledge and human. This multi-layered discussions have also inspired and
formed important trends within Islamic philosophy and mysticism. Just to illustrate this,
I would like to give you sampling of the texts
that I was referring to. Some already went over some. So, it would be useful. You know, some examples
of the main references in the foundational texts
that basically address. Medical treatment or at
least that are often invoked in discussions. So, in the Quran, the Quran
itself is described as a source of spiritual healing, of course, but also it includes references
to some means and methods of physical healing. So, in the one hand, we have this passage, chapter 17:82. Down of the Quran that which is healing and a mercy to those who believe. Reference to spiritual to
physical means of treatment or cures include this famous
reference in chapter 16 about honey, for example as a. Ultimately God is
described and this is in. Abraham, Ibrahim put it in chapter 26:18. All sick. It is he who heals me. This one instead. So, similarly in the Son of the Prophet, we have also several passages, actually more references
in the Sunnah, indeed. And one of the most important differences is actually this Hadith that indicates that
each ailment has a cure. (speaking in foreign language) God did not send down a disease without sending down its cure. So, what is interesting and
also intriguing about this particular report is
that it has been narrated in different Hadith
collections differently. So, there are different
narrations, if you will. In one narration, for example, some exceptions were
made or were indicated and this include (speaking
in foreign language) which is all age so each
disease, each ailment has a cure except old age. In another narration,
the exception is death. (speaking in foreign language) So, this Hadith has always been used in order to encourage this
continuous search for cure, for an effective treatment. And that includes all types of diseases. For example, according to one commentary that is in
(speaking in foreign language) by Evan Haja, for example, he said that includes
terminal illness as well because after all, from a
theological perspective, nothing is impossible for God. So, he says it includes terminal illness that the most skilled of physicians have recognized as
incurable and they admitted their inability to deal with it. So, in Arabic. (speaking in foreign language) So even in cases of terminal illness, there should be hope and
there should be an effort to be made in order to
do what is appropriate. Along with this basic Hadith or report and Hadith similar to
other similar Ahadith also generated over time impressive
number of commentary in the books of Hadith
but more importantly as I will explain later, also
in in the legal tradition and that has been
demonstrated in the various juristic legal opinions in
the various legal schools. Another interesting and
also rather intriguing prophetic report is the one that indicates that contagion is not effective. So, the text of the
Hadith is no contagion, no bad omen from birds, no hama, no bad omen in the month of Safar and one should flee from the leper as one would flee from a lion. Oh, what’s interesting about this report is that it somehow tries to address some pre-Islamic Arabian practices to put an end to these kind of beliefs, right? Wrong beliefs from an Islamic perspective that the Arabs used to
to harbor and to believe. But what is interesting
here is that the Hadith seems, on the face of it, to indicate different things, even oppositions or some would say even contradiction. So, on the one hand, it negates contagion but on the other, it ends with an advice or piece of advice to flee
from the one who has leper which is a contagious disease. And of course, in the commentary, there are all types of explanations and efforts made actually, heroic efforts, speaking of palliative
care and end of life issues to try to reconcile these
two elements of the Hadith. Another slightly different
narration of the Hadith includes also indicates that no contagion, no bad omen in the month of Safar, no hama and this particular narration captures or speaks about an incident that happened at the time of the prophet in which one Bedouin
said, oh, prophet of God, camels are usually
healthy but when a mangy comes close to them, they
contract the disease. Upon which of the prophet then said, who or what brought the
disease to the first? (speaking in foreign language) So here, the prophet, if you will, is rolling people’s attention
to the original cause or the prime cause, if
you will, which is God is behind these apparent causes. Again, there are some other
reports indicating that the sick should not transmit the
disease to the healthy. So, while there is no contagion but still people need
to care for each other and need to also consider
these apparent causes because at the end of the day, these are the causes
that have been instituted in the universe and God,
with his infinite powers, he is beyond these causes but as far as human, human kind is concerned,
they need to address, they need to factor in and we
need to respect these causes. Also some Ahadith, especially those that talk about prayer
during times of illness always invoke the name
of God as the healer or (speaking in foreign language). A very interesting group of reports talk about the notion of reliance on God and this has always also been discussed in relationship to these other reports and scores of Hadith and Fiqh, of course, particularly within people who have some
sort of Sufi orientation always wanted to
reconcile these dimensions of these references. How on the one hand, you are supposed when you get sick to take
medication but at the same time, you trust in God and with the. Elements kind of go hand in hand or whether they contradict each other. So, what all that means is that there has to be some
sort of interpretation or reconciliation of these different or disparate references. So there is a need for
an interpretive framework and that interpretive framework
would include elucidation or explanation of important
methodological issues that the Usulis or legal theorists have addressed and talked
about like distinguishing between the different
roles of the prophet, the different roles that
he served in his life as a communicator of divine revelation, as a judge, as a ruler or as a human being when it comes to the prophets action whether these actions are
meant for legislative purposes or whether these are
habitual kind of actions. Also, in classifying these
different prophetic reports, attention should be given
to two main consideration which is origin or origination, (speaking in foreign
language) and signification which is (speaking in foreign language). And finally, and ultimately
and perhaps most importantly, you need to factor in this
kind of theological lens through which you look at these references and of course, that reminds us in, traditions and theological tradition, we have these various theological schools who had their own particular understanding and these interpretation
of all these different prophetic reports. So, my point is it would be inaccurate to approach these
various prophetic reports or even Quranic references
in an atomistic way that you just capitalize one
relevant or one pertinent or one single report or reference in a kind of an opportunistic way in order to make the point
that this or that point or this or that view is the most important or the most relevant or the most. So, this presentation which
is part of a larger study on the issue of medical treatment examines the main contours
of these discussions with a view to investigate the extent to which pre-modern discussions on medical treatment shape
Islamic bioethical discourses. In the modern period,
contemporary religious debates on a wide spectrum of bioethical issues ranging from vaccinations,
medical testing, also for the purpose of this conference, palliative care and end-of-life
issues including euthanasia show the importance of
these pre-modern discussions on the question of medical treatment. Examining the relevance of this issue to contemporary bioethical discourses, the presentation will analyze the juristic deliberations on this theme that we’re hosted by the
International Islamic Academy of the Organisation of Islamic Cooperation during its seventh session in 1992. So, considering the comprehensive scope of the Islamic and legal corpus which includes ethical legal assessment of the acts undertaken by
legally competent individuals pertaining to all aspects of their lives, one would expect to find jurisdictions on a wide range of questions that fall under the scope of
medical ethics or bioethics. Despite occasional
reservations and skepticism on the validity, utility
or efficacy of medicine, it was held in high esteem
in the Islamic tradition and medical practice was
considered a collective duty. (speaking in foreign language) Due to the great need for it both at the individual
and societal levels. More particularly, it was deemed essential for the preservation of life which is considered one of
the five necessary values constituting the higher
objectives of Sharia together with religion,
intellect, progeny and property. Analogies were often made
between medicine and Sharia. Professor already quoted
Residib Abdul Salam and this also comes from him. While the former aims to ensure
the well-being of the body, the latter aims to ensure
the spiritual being of the believer both in this
life and in the hereafter. Arabic terms for illness and
healing occurred in the Quran both in the physical as
well as the spiritual sense. And the Quran itself as indicated earlier is referred to as a source of healing. Similarly, the prophetic Sunnah includes numerous
references to medical issues to the extent that standard
collections of Hadith reports include chapters dedicated to medicine. (speaking in foreign language) As well as endorsement of
specific therapeutic practices. (speaking in foreign language) These scriptural references
came to form the substance of a sizable body of literature
known as prophetic medicine. (speaking in foreign
language), which also reflects pre-Islamic Arabian healing practices, (speaking in foreign language) indicated. Together with this
prophetic medical tradition, another philosophical medical tradition developed after the
Classical Greek tradition. These two parallel traditions
have existed side by side and their interaction is often highlighted in connection with the
concept of Islamic medicine. A pre-modern juristic
debate on the permissibility of pursuing medical treatment can be traced to early scholarly efforts to reconcile scriptural references which seem to point at
different directions. While some prophetic
reports including those recording prophetic precedents
indicate the permissibility and even necessity of
seeking medical treatment, others emphasize the
importance of trusting God or trusting in God and putting
one’s faith in his ability to heal diseases without
any intervening causes. For example, reports advocating the pursuit of medical treatment include God did not send a disease
except that he sent along with it a suitable cure. On the other hand,
other reports advocating total reliance on God may imply avoidance of medical treatment. In light of these references,
five main juristic views were developed concerning the
question of medical treatment and these are recommendation,
obligation, permissibility, permissibility with preference for avoiding medical treatment and finally, impermissibility. The first view which is
recommendation of medical treatment is adopted by the majority of Shafi’is and some Hanbalis on the basis
of several prophetic reports indicating importance of
seeking medical treatment and also on the basis of actual precedence showing the prophets use
of medical treatment. In support of this view,
the Hanbali jurors, (speaking in foreign language) argues that seeking
medical treatment confirms the connection between causes
and their ensuing effects which does not necessarily conflict with putting one’s faith in God. Believe in divine omnipotence
calls for respecting rather than neglecting
the causes the God linked to certain effects. A second view which is
obligation of medical treatment is adopted by some
Hanafis and some Hanbalis especially if the efficacy of treatment could be ascertained. In this case, according to this view, neglecting medical treatment amounts to intentionally
harming or even killing oneself which is explicitly
prohibited in the Quran. The third view is adopted
by the majority of Hanafis, the Malikis and some Hanbalis,
according to this view, seeking medical treatment is permissible as long as one believes that healing can only be caused by God. A fourth view is adopted
by the majority of Hanbalis and some Shafi’is. According to this view,
seeking medical treatment is permissible but avoiding
it may be preferable because such attitude
demonstrates one’s faith in God’s healing power. For example the 11th
century Ash’ari theologian and Shafi’i jurist Al-Ghazali
listed some situations in which he argued
avoiding medical treatment could be preferable and these are, if the person believes on the
basis of gnostic knowledge, (speaking in foreign
language) that his life term has come to an end and that
medical treatment is of no use. If the person is so occupied
by his spiritual condition and concerned for
salvation in the hereafter that he cannot attend
to his physical ailment which makes him less
responsive to the instructions of the treating physician. If the person suffers
from a chronic disease with no known or certain cure. If the person intends illness as a means to increase his record of good
deeds or expiate past sins. Finally, if the person fears
that treating his illness would affect his self-consciousness and increase the level of distraction. The fifth attitude advocates the impermissibility of medical treatment if it involves some form
of prohibited treatment such as use of religiously
prohibited material or practice. Which, of course, should be evaluated on a case by case basis in case. This attitude is also
attributed to some mystics who argue that seeking medical treatment conflicts with one’s faith
in God and his healing power. As noted above, contemporary
Islamic bioethical discourses draw on these pre-modern discussions in the Islamic normative
tradition as a resource to address the new questions
that modern biomedicine raises. Examples include, although not limited to, the permissibility of organ donation as well as the possibility of withdrawing or withholding medical treatment
at end of life situations. A 1992 OIC Fiqh Academy deliberations were based on four papers. Two by physicians and
two by legal experts. That’s Mohammed Ali Albar
and Mohammed Alani Sakal, the physicians and
Mohammed Yusuf Mohammedi and Abdullah Mohammed
Abdullah, the jurists. In general, physicians presentations attended to highlight the
role of clinical practice in determining the need or the necessity of medical treatment. Adjusting that such assessment should be tied to tangible indicators such as the nature of the
illness and also potential impact on the patient’s life as
well as that of others. For example, Albar notes
that medical treatment should be obligatory
in two main situations. The first includes dangerous
communicable diseases particularly in the case of epidemics which may, if necessary,
justify the enforcement of quarantine and placing
indicated limitations to the freedom of affected
individuals or regions. These cases, the responsibility
to enforce medical treatment or other appropriate measures
falls upon the government through ministries of public health and other similar entities. Second situation is not limited
to communicable diseases but it includes diseases for
which medications are available and recovery is certain or near certain. Treatment in this case
would enable the individual to regain his health and avoid
being dependent on others, thereby benefiting not only himself but also the larger society. Although treatment in this
case should be obligatory that comes second in
order after the first case of communicable diseases. Ultimate responsibility to
pursue treatment in this case hold upon the individual as long as they are competent adults. In the case of minors
or incompetent adults, other measures of
surrogate decision-making should be put in place. According to Albar,
foregoing medical treatment can be an option in certain cases which include diseases with
no available medications or with medications which
involve harmful consequences or side effects. They may also include conditions in which recovery is merely
probable or even less likely. These cases, medication may end up adding to the suffering of the patient
and to his family as well. On the other hand, presentations
and comments by the jurors tended to reiterate the
pre-modern juristic opinions, and while some jurors shows the views indicating that medical
treatment should be mandatory or at least recommended, particularly in the case
of curable diseases, others insisted that in general, medical treatment should remain at the level of permissibility. According to the former opinion, the totality of scriptural evidence as well as the personal
example of the prophet are in favor of seeking medical treatment. Moreover, according to this opinion, the views discouraging medical treatment could be explained in light of contemporary medical knowledge and lack of effective cures that’s at the time of the prophet. Two main issues were highlighted
in these deliberations hosted by the Fiqh Academy. These are medical treatment
in the case of incurable or terminal illness and the
role of the patient’s consent. These two issues on the
issue of medical treatment in terminal cases, participants
drew on three main sources to formulate an opinion. Even if a tentative one and
these are scriptural references de-emphasizing the need or the necessity of medical treatment often involving precedence
going back to the prophet and other exemplary figures in
the early Muslim generations. In modern scholarly views, downplaying the importance
of medical treatment at least in certain cases
and modern medical indicators on the futility of medical treatment in the case of terminal
or incurable diseases. Similarly, on the issue
of patients consent, participants found support
in scriptural sources involving certain precedents
going back to the prophet and also in pre-modern discussions particularly on the issue
of medical liability. These modern deliberations also reveal the larger theological underpinnings of certain legal discussions
pertaining to medical issues such as the religious
significance of illness, the connection between illness
and believe in destiny, the proper attitude of the patient and the true meaning of reliance on God. For example, some of the participants
involved or reiterated the view expressed by Al-Ghazali, again, who divided the causal connection between treatment and healing
into three main types. First is definitive or
speculative or imaginary. (speaking in foreign language) A meaning of reliance on God differs for each of these times. For example, the first type is illustrated by the occurrence of
satiation after eating, eating bread, for
example, and in this case, through reliance on God means observing, considering and fulfilling
this causal connection. So, regarding this connection
would be prohibited especially if it leads to death. The third type is
illustrated by cauterization. (speaking in foreign language) Because it’s curative
effect cannot be confirmed. In this case, reliance on God means disregarding this type of treatment. The second type covers a wide
range of medical procedures such as copying whose curative
effect is only speculative. This type occupies an intermediary stage between the first and the third types and a subject to the
discretion of the individual. Observing this type is not antithetical to true reliance on God as is
the case with the third type and disregarding it is not prohibited as is the case with the first type. The resolution that was issued at the end of the deliberation
indicates that in principle, seeking medical treatment is legitimate but the exact ruling may vary
for different individuals depending on different circumstances. For example, it can be obligatory if avoiding medical treatment
would result in one’s death, incapacity or failure of one’s organs or the vital organs. It would also be obligatory in case one’s disease would transmit
to others if left untreated as is the case with contagious diseases. If the disease would result
in mere weakness in the body rather than death or loss of organs, treatment in this case
would be recommended but not obligatory. Apart from these two cases, medical treatment would
be just permissible. Finally, medical treatment
would be reprehensible in case it leads to further complications or deterioration of one’s health. With regard to incurable diseases, the resolution indicated that
pursuit of medical treatment conforms to the causes that have been instituted in the universe but at the same time, it emphasized divine
omnipotence and healing power which is reminiscent of
some classical commentaries on some prophetic reports
particularly the one emphasizing the existence of a cure for every type of ailment. Regardless of the prognosis of any given disease or condition, treating physicians and family members should do their best to
raise the morale of patients and to alleviate their suffering. Ultimately, determination of
whether a particular disease is incurable should be made
by qualified physicians in light of available medical knowledge. Finally, with regard to patient consent, the resolution indicated
that consent by the patients is required in the case
of competent adults and of legal guardians
in the case of minors or incompetent adults. Governments may enforce
appropriate measures in certain cases such as
the outbreak of epidemics and also in other cases of emergency. Subsequent juristic bioethical discussions on medical treatment
particularly with reference to terminal illness and
end of life situations tend to reiterate the views expressed in these 1992 deliberations
including the questions that still remain open such as withdrawing withholding life-sustaining treatment as well as the use of artificial
nutrition and hydration, administration of pain
relieving medications, communication of distressing or bad news and surrogate decision making. For example, the IOMS
International Islamic Code for Medical Ethics on
the issue of euthanasia condemns any act that
is meant to put an end to the life of a terminally ill patient. It indicates that treatment
of incurable diseases is not obligatory. Moreover, it includes,
I think it indicates that withdrawing or
withholding curative procedures in these cases may be possible provided that the fundamental
fundamental rights to the patients such as
dehydration, nutrition, proper nursing care and pain
relief are made available. So in conclusion, while
these deliberations among Muslim jurors and
medical professionals on the religious moral
status of medical treatment highlight the role of religious
faith at times of illness especially in the case
of terminal diseases, they also emphasized the importance of seeking medical treatment especially when effective
cures are available. In general, these
contributions aim to reconcile Islamic discourses on medical treatment with modern medical values and ethics. For example, side by side
with Islamic concepts concerning illness cure and healing, one also sees modern ethical concepts such as informed consent within both clinical as
well as research settings. Contemporary discussions on
the topic of medical treatment serves as a significant
illustrative example of how contemporary Islamic
bioethical discourses grapple with two distinct traditions. They seek to address and accommodate modern questions and needs from within the extended
Islamic normative tradition. These needs and questions
however have largely emerged in response to modern that
is Western medical practice and technology. While the latter have
been adopted and utilized with little reservation, if any, Western medical ethics have at
least in part been contested. From this perspective
Islamic political discourses provide the necessary
process of legitimization that modern Western medical ethics require in a Muslim setting. With regard to the issue at hand, these contributions show
that the ethical legal status of medical treatment should be linked to proper categorization
of medical conditions along with anticipated outcomes and effectiveness of available cures. Ultimately, in the absence of
clear and binding legislation, this body of religious moral deliberations remains the main resource
for ethical decision making on issues related to medical treatment particularly in cases of terminal illness within the Muslim context. Thank you. – [Attendee] Common sense that we learn from Baroness lecture
that all of us will die, that is certain. – [Woman] Sorry. – [Attendee] And that we don’t really know when we are going to die
so these two are clear and so for us, as doctors, we should be careful of
what message that we give to the patient and I have many
stories like what you told about people living so many years when we told them they have
only weeks and months to live. Many, many years actually. But we have a little bit of
problem in our local region about child. Parents refusing to give permission for children to be treated and our children protection laws are not mature enough
as I saw them in Europe and all where the social
services take over and that’s one point and the other point, we are trying to win the
parents to be with us rather than against us, so we’re trying to convince rather than go against their decision, so how do you approach it? Maybe you could give both
perspectives from the two sides. – Thank you. I wasn’t aware that
your child’s protection, means that you have children
who are not being treated with treatable conditions, right. I mean it’s interesting because in the UK, we’ve just had a big case called, the child was called Charlie Gard where the physicians wouldn’t allow so-called experimental
treatment and actually, the physicians attitude to
the parents was terrible and there’s going to be
more coming out from that. So I wouldn’t want anyone
to think we’ve got it right in the UK because we haven’t. It swung too much the other way. I think as a kind of general rule, I would say if you give people information and you give it in terms that they realize that you understand their distress, then that can unlock a
block of communication and there are a couple of examples. There is a phrase I
sometimes use which is to say I realize that this is terrible for you and terribly distressing and
I am not here to make anything more difficult than it is already. And then may go on to say you
and I have a common enemy, this illness. Nobody wants it and the
question is can we together find a way to manage this illness but accept that we are
doing our best efforts. And then sometimes, leave
it at that for time. And sometimes, it takes quite a long time for people to realize you’re
not part of the disease. It is out there and you were with them, you’re wanting to work with them but I think there’s some very basic feelings in out there,
generally in society, irrespective of race, religion or anything that somehow, the association
of the doctor with disease, with hospital, with treatment, therefore you must be all
part of that bad thing and you have to extricate yourself in a way from that association. – [Attendee] Thank you
for both presentations. Dr. Shabana, you went in quite detail about the various law schools
and what they say and so on. Do you still think that
there is some traction for those kind of divisions
in the Sunni sphere and that opinions will be judged according if they are validated by Shafi’i or the Hambali or the
Maliki school and so on so I wonder if you had
some thoughts about that. Baroness Finlay, thank you very
much for your presentation. I was wondering if I
understood you correctly about do not resuscitate. So, I understood your various examples, you said that insulin
and all those other ways that we do resuscitate in that ways but the standard understanding, I’m not a physician, so
I’ll need your help here, what are you saying why should we not take do not resuscitate seriously? Maybe if you could repeat
what you said there or maybe I misunderstood that. Okay. – [Attendee] Thank you both, so anyway, I will try to put the
presentations together for a second to ask you to pontificate and think outside what you’ve presented. So, the Baroness made a point and I wanna take that
characterization of medicine what she said something to the extent and she can clarify. When you think about person with cancer, what we do medicine is
we’re trying to push off that cancer ultimately being the cause of death
by certain amount of years or days or months. What we’re doing is managing that disease. I mean anybody, if you take, I have it have family members and other people who have cancer, it’s always in the back of their
mind that they have cancer. They don’t say they’re cured. They’re always worried that
the next back pain they have is that cancer coming back, okay? So for the rest of their life, they have that disease whether
you think about it or not and when you look at that medical history, it’s on that chart. So my point is that’s medicine is, it’s management of chronic
symptoms of hypertension, kidney disease or
forestalling what we think is gonna come back and
be their cause of death. It is not this notion of
I’m gonna cure someone. And so the problem I have
and what I want you to, so forget about, I mean not forget about. We can talk to the person, move this thing about legal schools but whether the conceptualization of (speaking in foreign language) is actually accurate in
the way that the jurists are thinking about even in 1992 with premiere physicians
contemplating what to do in that status, right? That do they actually have a
conceptualization of medicine as a management system and all
those rulings even relevant to the physician and the
patient interaction today. I have my own views on that
but I want you to pontificate from what your research was. – [Attendee] Thank you. This is also for Baroness Finlay. I appreciate the distinction you made between removal of life-sustaining support and the conscientious intervention. Conscious intervention inducement that euthanasia is. Even to the examples that you gave, stopping insulin treatment
six months in advance. Whereas. Of hospitalized patient of life support is something that is really
prolonging life and that death would have be taking place. But could you comment on
why some of the highest teaching Catholic
authorities confuse this? Often happens and then it
becomes part of public debate and then the whole distinction, it’s terribly confused again. – Thank you very much for the
question, Professor Mussa. About tractions or traction for
these modern juristic views. Judging from these
deliberations in the modern view because these deliberations
are happening now, right? Or recently and actually. These express there with the
resolution or the decisions are not categorical but oftentimes, they are framed in a
kind of contingent way or something that is tentative. In other words, is open for, for amendments, depending on the advances in the medicine and biomedical
technology, et cetera. So judging from these deliberations, yes, these pre-modern
discussions and views are important and relevant and this why they are being invoked
over and over again. But I think, again, judging
from these deliberations, they are invoked as a resource, just for inspiration if you will or more views or opinions
that are appropriate for the present circumstances. And I think this ties with the
question that Assam brought which is the
conceptualization of medicine. To what extent the conceptualization that these pre-modern jurists had and how much it is relevant or similar to current understanding of medicine. This is your question, right? Yeah, yeah, yeah, yeah. But the question that I would push back and then there is another
question that said that conceptualization that
these pre-modern jurors or even jurors in 1992 had, what is the source of
that conceptualization? It’s coming in from medical
practice, I mean, of that time and from technical expertise, right? And what’s interesting to note
here is that these jurors, when they cite medicine
or scientific views, they often cite them on the
authority of experts, right? So, and then also, they are
often cited with the caveat that okay, depending on what
the experts say, right? So what goes in the pre-modern field, I guess would go for
the for the present time in the sense that testing or assessing or
evaluating this conceptualizing will be subject to verify the information in these respective fields, right? This is at least how I read it. – Okay, thank you. Good questions, thank you. I’m not dismissing somebody
who says do not resuscitate. What I’m saying is be precise. Do you want antibiotics? Do you want them by mouth
but not intravenously? Want to go back on the
ventilator the next time you’re in respiratory failure,
you might say no next time, I’ll just have oxygen by mask. What is the ceiling of care? Where’s the limit that’s
acceptable to you? But when people say
oh, do not resuscitate, sometimes that gets interpreted
as abandoning all care which is really dangerous. So, that’s to answer you and
thank you for asking that. I completely agree, we
cure nothing in medicine apart from meningitis with antibiotics and possibly a couple
of other sepsis things. And the problem we’ve got
with all of the scriptures all around the world,
they were all written before that wonderful little mold plate that Alexander Fleming
saw in the medical school that I went to but he was before
my time, I’m not that old. Okay, so all those scripture’s great basis but the science of today was not there. We did not even have, electricity was a concept
that none of them at hand. Even when my father was a child, they went to bed with a candle,
they have no electricity. Now, you know how old I am. So, I think that’s a
problem with taking things from previously and pretending that they’re completely applicable today. They are as a basis but antibiotics have, yeah, they’ve revolutionized care and so what are we doing now? We’re abusing them. And probably in 10, 20 years
we won’t have antibiotics and we will be back where people were, all those decades, centuries ago with people dying of infections, they, we can’t treat because we’ve abused what we’ve got in hand. So, we don’t cure things, no. We live with disease, we control disease. Sometimes, we do a really good job and we control it for years. Sometimes, we do a really bad job and we think we’ve controlled
it and it pops up again weeks or months later. Why do I think people get it confused? Well, two reasons. One is the reason I’ve said, I think these, you know, that you have
to look at modern science. The other problem is so-called experts. Who are experts? Experts of people who tell
you what you like hearing because it reinforces your view. If you are somebody who
rethinks and challenges, you are not an expert,
you are a maverick, okay? You are disruptor. You might even be a revolutionary although I may not like your tactics as a revolutionary or whatever but your, actually, we need to remember that as science moves on really fast, we have to adapt our
thinking and not be rigid and it is easier to stick and recite what other people have said before than it is to say actually, no, we’re now with a different situation and I think ventilation
is a good example of that. When I was at medical school, there was no non-invasive
positive pressure ventilation. You know, ventilator
with a mask on and so on, unheard of. The best you could hope
for would be a tracheostomy and a machine that wasn’t
as big as a car, really. I mean there were huge
great cape ventilators. Now, you can have a little
ventilator that is portable and a colleague of mine
in the House of Lords has non-invasive ventilation,
she has her mask on, nasal, she’s learnt to speak with
it, she could speeches and it’s on the back of her wheelchair. Okay? Unthinkable 10 years ago but
if that ventilator stops, she will be dead within
probably an hour or so. So, it is keeping her artificially alive. She’s the oldest living person in the UK with spinal muscular atrophy. I’ve known her from when she
was a child and when we were, when she was seven and 11, we thought she was gonna die then. You know, the problem is that the people who are iterating these phrases and saying you’re killing people, I have not kept up with
the reality of technology so we have a lot of people
who are living very well in a way that they could
not have lived before. They may have parenteral feeding, gastrostomy feeding
overnight, dialysis at night, transformed actually,
renal dialysis overnight, far better outcomes from
renal dialysis in the day. So, we’re changing medicine all the time to improve the quality of the lives, the way that people live, let them do more but we must be aware
they all would have died of their disease previously. And when they say enough is enough, when my gastrostomy tube falls out, I don’t want to replace
but please look after me. I’ve had enough, I just
want to stop my ventilation, please look after me. We’re not killing them,
they’re dying of the disease that they would have had before and that is fundamentally different to taking or giving patient effectively a massive dose of poison
because that’s what you’re doing with assisted suicide or euthanasia. The person would have lived,
could have lived well, you’re cutting life off. And I think that is deliberately
fudged by the campaigners. You want to dance on the head of a pin to say oh, but you’re really
killing your patients anyway. No, we’re not. We’re actually caring for them and we’re listening to what they need. – Good morning. I’m Patrick Laude, I’m on the faculty here at Georgetown in Qatar. And I have the pleasure to
introduce our two speakers for this session, for this panel on the Interface Between
Religion and Medicine at the End of Human Life. So, I’m gonna start with
a brief introduction of the two speakers and
then Dr. Suleman will speak, I guess for about 30, 40 minutes, right? And Fr. Sheehan would
be the second speaker and then we’ll have free
some time for discussion. So Dr. Mehrunisha Suleman is
a post doctoral researcher at the Centre of Islamic Studies at the University of Cambridge. Her research involves an ethical
analysis of the experiences of end-of-life care services
in the United Kingdom from the Muslim perspective. Is the sound good or it’s an echo? Yeah, there’s some kind
of echoing, I think. – [Man] Feedback. – Dr. Suleman holds a Doctorate in Population Health from the University of Oxford and a BA in Biomedical Science Tripos from the University of Cambridge. She also holds a medical degree
and an a Master of Science in Global Health Sciences
from the University of Oxford. She has worked with Sir Muir Gray on the Department of Health
QIPP Right Care program. She’s an expert for UNESCO’s
Ethics Teacher Training program and was also awarded the
2017 National Ibn Sina Muslim News Award for Health. She has an Alimiyyah Degree
in traditional Islamic studies which she was given under the supervision of Sheikh Akram Nadwi at
Al-Salam Institute in 2013. Our second speaker is Fr. Myles Sheehan who is an assistant for Senior Jesuits for the USA Northeast
and Maryland Provinces of the Society of Jesus. Fr. Sheehan joined the New
England Province of Jesuits on August 25, 1985 and
he made his novitiate at St. Andrew House in Boston then he was ordained to
the priesthood in 1994. In 2005, he professed solemn
vows in the Society of Jesus. Fr. Sheehan was born in Massachusetts and graduated from
Dartmouth College in 1978 and from Dartmouth Medical School in 1981. He trained in internal medicine at Boston’s Beth Israel
Hospital from 1981 to 1984 and he received further
training in geriatrics from the Harvard Geriatric
Fellowship Program from 1989 to 1991. From 1992 to 1995, Fr.
Sheehan was the recipient of The Brookdale Foundation
Fellowship in Geriatrics and then a few years later, received a faculty fellowship from the Project on Death in America and developed the Recovering
Our Traditions curriculum, aimed at improved end-of-life care in the Catholic community. Finally, Fr. Sheehan was named
one of Chicago’s top doctors yearly from 2002 to 2010. In 2007, Fr. Sheehan was named a fellow of the American College of Physicians and he currently serves as a member of the board of directors of Bon Secours Mercy Health System. Please join me in
welcoming Dr. Suleman first as our speaker, thank you. – Good morning, everyone. So, the world is made for tall people. Being vertically challenged, I’m going to sort of stand to the side but I might annoy whoever
it is that’s responsible for the sound system so if I
start veering off this way, then just yeah, tell me to shove along. Yeah, exactly, exactly right. So, what I’m gonna do is
tell you a little bit about the research that I’ve
been doing in Cambridge over the past couple of years. I’m a clinician by training but I’ve been moonlighting
in the humanities for the past couple of years. So, any humanities scholars
I apologize from now. I’m a bit of a pretender. What I’ll do is I’ll give you
a little bit of a background about the demographics
of Muslims in the UK that will give you a
little bit of a flavor of how it is that my study is situated within the broader
narrative of the thinking about palliative and
end-of-life care in the UK. And what I’ll do in particular is tell you a little bit about the data related to trust-building when we think about Muslim
patients and families experiences of end-of-life care in the UK. So, a little bit of data. As somebody who spends her
spare time number-crunching, says something a little
bit about my mental state, I can’t but help share some data with you. The UK population is presented here particularly the Muslim population where almost 5% of the
population is Muslim. That’s almost one in 20. Of course, that varies depending
on the parts of the country that you go to so you’ll
bump into more of them in a city like Birmingham and very few in Southern parts of the country. In terms of the age
profile of the population, a significant number
aged under the age of 15. So, this may beg the question why on earth is she thinking about
palliative and end-of-life care from Muslim perspectives? I’ll get back to that in a second. But one of the things that
I’m particularly interested in is looking not just at
the faith perspectives of this population but also the underlying values and negotiations that are underpinned
by the ethnic diversity and that’s summarized
in the picture of there but will emerge from some of the data that I share with you shortly. Health inequity, health
inequality is something that is of particular relevance when we’re thinking about
ethics in healthcare and a very important finding
from the most recent census was that Muslim women in particular report a higher level of ill health than the national counterparts and that’s something
that’s very, very important when we’re thinking about
access to healthcare services and particularly palliative
and end-of-life care services and this is particularly
true of women and men over the age of 65 but particularly women. Thinking more deeply
about health inequalities related to this population, what we find is a significant proportion of the Muslim population
live in the most deprived local authorities in England and this relates to other
aspects of the social, and the social context
of health and illness in terms of education
level, access to employment, the types of housing
and all of these impinge on their experience of
health and their access to healthcare services. So here it is, as a number cruncher, the temptation of showing
you a population pyramid. So you can see that the
pyramid is bottom-heavy but what you see is there is a significant population of Muslims aged, aged in their 40s and 50s currently and you can see that the
population that will be 55 and 74 will more than double by 2021. And I think this is very, very important when we’re thinking about
planning for services that meets the needs of an increasingly diverse population in the UK. And particularly a population
that has experiences of low socio-economic influences. There have been a few
studies that have been done looking at palliative and
end-of-life care issues related to minority communities in the UK. These studies are a few and far between but I wanted to highlight the study done by Jonathan Kaufman and colleagues at King’s College London,
it’s a fabulous piece of work and one of the big things
that they point out where there’s very little study and there’s a need for more work is unmet needs and disparities related to palliative and end-of-life care particularly in relation to
religious and family issues and also how these
religious and family issues relate to end-of-life care decisions. But as a healthcare professional, one of the things that
the report highlights that was particularly pertinent and resonated with some of
the experiences that I’ve had and experiences that colleagues have had is when interacting with people
from minority communities in relation to palliative and
end-of-life care decisions, healthcare professionals often
face uncertainty and anxiety in that sort of setting. So, this got me thinking, how is it that we can address this issue? This issue of a minority
populations views, not necessarily being
captured within the data set but also that healthcare
professionals themselves face anxiety and uncertainty
when trying to meet the needs of the population that they serve. So, this led me on to the
last two years of work that I’ve been doing. And what I started with is started looking at the policy documentation
around end-of-life care. As most of you know and a lot of this was brought up yesterday,
the UK is a leader in palliative and end-of-life care. A lot of the strategic thinking
around this area of work began in 2008 with the national
strategy on end-of-life care and a lot of policy document
has followed on from that. One of which is the National Institute of Clinical Excellence as guidelines that were updated in 2013 and one of the things that
the guidelines point out is around diversity,
equality and language. And what the guideline
emphasizes is that the care and treatment that healthcare
professionals provide ought to be culturally appropriate but also the information
that they provide. So, this this result in
even more head-scratching, more thinking, how do healthcare
professionals do this? Or how can they do this? How ought they provide this
excellent standard of care? Rummage through the rest
of the NICE guidance, very little there, rummage
through the other 25 documents that seemed relevant from
Department of Health NICE Public Health England,
et cetera guidelines, very little documentation. One of the things that the
NICE guidance does point out is what is important within the palliative and end-of-life care framework
and what was reiterated over the past couple of
days is spiritual support. And for some people,
spirituality is conferred from organized religion. So when I started
looking at the literature around the influence
of organized religion, particularly Islam on
end-of-life care decisions, studies were few and far between. and that stimulated me to set
up this research but also that the Muslim population is
incredibly diverse demographically, it’s an aging population
and interestingly, there are intergenerational differences that reside within families, particularly when we’re thinking about palliative and end-of-life
care which is understudied. We think of populations as being defined with their languages, their
cultures, their religions and often think that family
units are aware of our studying one defined reflection of that, but what I found in the research and what other ethnographers discuss is that in a population like the UK which has migrants but also
first, second, third generations all living together or
living very close by, you have different value
systems coexisting. And when these interface
with the healthcare setting, particularly end-of-life care, this raises questions and moral challenges that can be very, very difficult for healthcare professionals. So one of the key things
that I’ve been looking at in my research is from the
perspective of patients and families, what are
their personal preferences? Are there religious values and beliefs that define those personal preferences? And from the perspective of
healthcare professionals, how do they ensure that treatment and care and information they provide is culturally appropriate? And are there barriers,
challenges and facilitators that they encounter? So, as any good researcher would do, sort of a tiered methodology to do this. Some of it was about looking
at the academic literature, the gray literature, but
what I’ve also been doing in my spare time, lots
of weekends and evenings, is looking at LexisNexis
and Bailey sort of case law. Anybody who’s interested,
please let me know. I won’t be summarizing the case law here but I have found at least 11
cases in the last two decades involving Muslim patients and families who’ve challenged healthcare professionals in making end-of-life care decisions. Unfortunately, in all of those cases, they’ve ended up in court because
they haven’t been resolved in that healthcare setting. Many of those were best
interest decisions, interestingly enough. One of those was about the distinction between a
minimally conscious state and a persistent vegetative state which was very interesting. But yeah, I said I won’t
talk about them but. Yeah, exactly, they are too interesting. But what I’ll tell you about is the qualitative part of the work, my conversations with
healthcare professionals, patients, families, chaplains, coroners, community imams, basically
anybody who’d speak to a nosy researcher
about their involvement in palliative and
end-of-life care decisions. I’ve been doing the
interviews primarily in London and Birmingham because
they have the highest Muslim population in the UK. Cambridge also because it
gives a good sort of contrast with a minority population. I’m also trying to save the university travel
costs on train tickets which seem to be getting more
and more pricey as days go by. I’ve done 74 interviews so far, just waiting to speak to
a couple more coroners. They seem to be an elusive bunch or avoiding me like the
plague so if you know anybody who’s a coroner in the UK
who’d be willing to talk to me then please let me know. Yeah, they are busy people. So, a lot of the themes
coming out from the data can’t really be summarized
in a PowerPoint, sparing you the 13 pages
of NVivo codes here by putting them down
into three main blocks. And when I’ve been speaking to lots of the different stakeholders, a lot of the issues can be summarized related to the medical interventions that become pertinent when thinking about end-of-life care and some of those have
been mentioned today in terms of DNACPR, withholding and withdrawal of treatment, as well as more nuanced issues around assessment of quality
of life and best interests. The other are values pertaining to end-of-life care decisions which I’m particularly interested in, especially this issue
of balancing commitments like life is sacred and
how it is that manifests within clinical settings
where patients and families are trying to hold on to hope
and acceptance concurrently and healthcare professionals
are really struggling with trying to provide
them with the information that they need in order to make decisions but at the same time, being aware that they don’t want to diminish the hope that patients and
families may be expressing or may be committed to. What I want to tell you
a little bit more about is the sorts of decision makers. The authority that
underlies the trust-building in end-of-life care decisions involving some patients and families. And those sorts of people include patients and families themselves, religious scholars,
chaplains who may be scholars but interface with the healthcare setting as experts negotiating
between patients and families and also the healthcare team. I know they’ve been
listed in an order there but that’s not intentional. So, when we’re thinking
about trust-building, hospice nurses in particular talk about how trust-building can be particularly challenging for them because they aren’t necessarily
the most important person in the patient’s life
and may not be throughout that end-of-life care journey. One of the hospice nurses in Birmingham talked about how she’s
found that Muslim families are more together as families. They often live locally
which is really supportive but she was explaining that we often think that we’re very important
at this stage of life but what we find is that
they may be getting advice from a lot of different places and we need to know that that’s happening. The result of that is
that nurses like herself find it very difficult to really know what it is that the patient wants. It’s often the family who is in charge and it’s often the family
who the patient relies on to make those sorts of decisions. Some of that is
complexified by interpreters or issues around English proficiency and what we found is that families who are having care at home often have a family member who
steps in to be an interpreter and usually hospice staff use
that as a proxy, initially, because it’s already become
very difficult for them to step into the home, having the trust to be able to enter
somebody’s private space and be able to provide
that care for the patient. So, they’re accepting of a family member being an interpreter but what nurses say is sort of another head-scratching moment. I spent two or three
minutes explaining something and the family member
transmits this information with a few words and so
they say either English is the most inefficient language or something is really being lost here in terms of transmission
of that information. And then it becomes very,
very difficult for them to then bring an external interpreter once a family member has
already stepped into that role. Negotiating that transition
can often be problematic, however, bringing in
an external interpreter as a first step can also be a challenge, so it’s not an easy one either way. The other is that when we think about a lot of the surrounding socio-economic context of these populations, their trust in institutions
other than the healthcare system is something that is
particularly pertinent. So, in London in particular, a lot of the chaplains, a
lot of the healthcare staff talk about Muslim families not really having trust
in the healthcare system. They say they just don’t
trust the medical system and I don’t think that’s just specific for the Muslim population. There is this paradoxical relationship of successes in medicine
having an inverse relationship with trust in the healthcare system. Onora O’Neill’s work on that
is particularly relevant. I’m sharing with you this very
sensitive and particular case but it’s often very helpful
for healthcare professionals who’ve encountered
difficulties with families to understand what may
have been going on here. One of the healthcare assistants in London talks about how providing
palliative and end-of-life care in particular is incredibly sensitive. It’s very personal, is emotionally wrought for the healthcare staff themselves as well as patients and families. And when Muslim families
take it upon themselves to care for their elderly,
care for their loved ones, care for their ill, they
find it very, very difficult to handover that care. There is a real tension, be that cultural, theological, moral or
simply a very personal one where they have a very
long-standing relationship with their loved one and it’s
very, very difficult for them to handover that care. And some of that tension
then may present itself in a dramatic way. So, what the healthcare was saying that this family in particular,
a lot of them were doctors, a lot of them were
healthcare professionals and because they were so worried, what they did was they set up cameras everywhere around the house. And this was very, very
difficult for the nursing staff and for the healthcare assistants. And it’s only after repeated
conversations with the GP and with the family that they
were really able to understand the underlying reason for that. And often when I present this quote to healthcare professionals
across the board, they sit back and sigh,
have the sigh of relief and they say you know
what, we’ve had this. And now that you mention it, maybe it was for the same reason. I know I mentioned this
issue of English proficiency. I want to say that translation
in this sort of setting doesn’t just involve
language in and of itself in terms of English being an issue. What I found is that religious
knowledge and language is particularly pertinent when
Muslim patients and families are negotiating end-of-life care decisions and what they need are
interpreters of a different sort. They need people who are
equipped in religious knowledge and religious language
to interpret for them, help them with meaning
making around end of life particularly when when
trying to make sense of religious values like life is sacred, and I’ll come on to that. Some of this, however, is also pertinent when we think about the
normative implications of best practice within
palliative and end-of-life care. So, hospice nurses talk
about advance care planning as being central to their role
in being able to understand what patients want at the end of life, know when it is that they’re providing the right sort of care and particularly once the patient dies for them to have that reassurance that they did everything possible to meet the needs and the
wishes of their patient. Advance care planning however is met with varied responses from
Muslim patients and families. And what hospice nurses say in particular is we often have these sorts
of conversations in parallel. The patient says to us very
respectfully that look, I understand you have a job to do but God will take me when he’s ready and I don’t really have to
think about these things, I don’t really want to
think about these things. And so the nurses say, sometimes, I have to step back and think, is this for me or is this for the patient? And so this got me thinking
when we think about the broader implications of this in
terms of the training that healthcare professionals need, how it is at the policy level, we measure good palliative
and end-of-life care, what is the role of normative measures like advanced care plans
in these sorts of settings and do we need to adapt them and if so, how and to what extent? The other is it’s really,
really important for us to have to think about the
role of hospital chaplains, particularly chaplains who have a role in serving their community also. One of the chaplains in London talks about how families really don’t know what it is that the faith perspectives are in these sorts of situations. They often rely on him to tell them, well, is the DNACPR form, okay? This is what the doctors
said is that okay for us. And sometimes, it’s simply
about him reassuring them that that’s okay. It can be deeper than that which is him trying to interpret for them what life is sacred in these sorts of contexts. That it is okay for them
to accept the prognosis that they have been given
and that if that involves negotiating a ceiling of
treatment with the clinical team then that’s something
that they can accept. And the families rely on
him heavily to do that. So you can see that in
this sort of situation, the authority lies not
with the clinical team when the patients and
families are making decisions but with a chaplain
who’s very deeply rooted in the community also but
also has an understanding of the clinical context. Some of that however is
muddied by people who have an authoritative role but
primarily in the community. So, you have imams in the mosque, who when consulted would err
on the side of intervention. And this is where conflicts arise where if a family speaks
to a hospital chaplain, and they give them one
impression or one opinion, they go to the community-based imam who may say something else. And what hospital chaplains often say is they have this misinterpretations. Families see that they’ve
turned over to the dark side because they’re working
in that hospital setting. So, when thinking about
this question of authority, it’s not something that’s, it’s really is multifactorial
and needs to be unpaid. And it’s complicated further when we think about the
implications of this in relation to palliative and
end-of-life care decisions. This is a really sad story of a young family where the mum had a terminal illness and her family decided
that they wanted her to be for organ donation. And they negotiated this and they thought that this was the right thing to do. When a local imam came to the hospital because he was the one
who was going to be doing her funeral rites and burial, the family told him that this
is what they were going to do and the hospital was going
to organize it for them, he said, no, no, no, you can’t do this. You can’t donate her organs. And although the family had
thought about this before, they knew that there were
differences of opinions from within the Islamic tradition because this person was the gatekeeper in terms of the mosque
itself, the funeral rites and the burial rituals, they found it very difficult
to continue that decision and withdrew the permission and it was something that was
very, very difficult for them and this was something that, this is something that’s
that sparked conversation in multiple meetings because
it does raise the issue of where these sorts of
conversations should be happening. So, I want to bring some of this together and what I like to say at this stage is this isn’t half-baked, it
hasn’t even got in the oven yet so just bear with me. A lot of these sorts of issues around barriers and facilitators can be summarized in terms of how it is that we think about
expectations within healthcare. Baroness Finlay mentioned
her work this morning, Onora O’Neill’s work talks
about how autonomy and trust within bioethics is something
to do with mismatches between advances in medicine
and decline in trust due to the lack of education
and poor communication. So when we consider these barriers to accessing good palliative
and end-of-life care, is some of it about our
lack of understanding of what the aims of palliative and end-of-life care is? Maybe. Is some of it to do with us not knowing the limitations of intensive care particularly in the case
of those legal cases? Maybe. Is some of it to do
with poor communication? Yes, also. So can we then remedy
this by educating patients and families, giving doctors, sort of healthcare
professionals across the board communication skills? To a certain extent, I think
what O’Neill’s work points out and what Baroness Finlay was
talking about this morning is it’s deeper than that. It’s deeper than those
skills and that education. It’s is more about relationship building and that relationship building takes time. It points to how
end-of-life care decisions need to be happening much earlier on and we need to be thinking
about these sorts of things very practically in
that community setting. So some of that is also about
us understanding more deeply how it is that patients and
families and communities derive meaning making around end-of-life. They’re the ones that are experts in these values and perspectives. When we put all of these things together, the spaces within which
this trust building occurs is also very, very important
and maybe hospitals and even hospices may not
be the right place for that, particularly, in communities
where accessing those services is in and of itself challenging. Although the work itself is focused on Muslim patients and families, I think there are a lot of
lessons that we can derive in terms of other communities in the UK. What I’ve found is that chaplains
are particularly important in trust building and
maybe there might be a role for Muslim community chaplaincy, and what I’m doing is
starting conversations with an imam in London who has an outreach of 10,000 people. He runs two Friday sermons and those sermons are
attended by 5,000 people each. That’s an outreach of 10,000 people, thinking about how it
is that we can set up a Muslim chaplain, Muslim
community chaplaincy program where he can start having conversations with his mosque group about
palliative and end-of-life care much earlier on. And is there a role for
him working more closely with GPs in the area
and also the hospices, in his case, and St Christopher’s to try and promote these
sorts of conversations? This does beg the question that if we have different people being involved in these sorts of conversations, does it prevent direct trust-building between patients and families
and healthcare professionals? I’m just gonna put that
out there as a question because that’s something
I’m still mulling over. I feel like I’ve talked for a long time, so I’ll stop there, thank you. – Good afternoon. I’ve deliberately said medicine, religion at the end of life a Catholic perspective rather than Christian. Catholics are, of course,
part of Christianity but I’m going to be speaking
more personally, perhaps, than individuals had before and just to tell you a
little bit of my story. I was born in 1956, south of Boston. My family is of Irish heritage and I did not realize it at the time but I grew up in a very Catholic family. I thought everyone went to
church multiple times a week. I thought that it was common for everyone to be saying grace to do that. Now our Catholic identity
was also built up in a little bit of resistance
to the local Yankee culture for the people who had been
the establishment in the past and who we treated Irish
immigrants, perhaps, not so well. And so there were multiple
elements with the Catholicism. It identified who you were as a person, it provided a link to our
heritage back in Ireland with my great-grandfather
having come in 1882. It provided a way of distinguishing him particularly when John F.
Kennedy was elected president, the first and the only Catholic president of the United States. It was also a sense that you
could be fully in American and fully a Catholic in that position. Now, one of the things that I grew up with as a little Catholic boy, south of Boston and part of the Irish tradition was death was an everyday part of life. And so that to show you what I heard called as
my Catholic worry beads, is that one of the prayers we say, Hail Mary, full of grace,
the Lord is with thee. Blessed art thou amongst women and blessed is the
fruit of thy womb Jesus. Holy Mary, Mother of God
,pray for us sinners now at the hour of our death, amen. That was the first prayer I learned when I was probably
two or three years old. So, the idea that from
the beginning of life, you were preparing for death was something that was very big. That latched on to an older tradition within Christianity and Catholicism that could be called the Ars
moriendi, The Art of Dying. And one of the important
things that one did was to pray for the
grace of a happy death. How was a happy death defined? It was not defined in terms of doctors. It was not to find in
terms of hospital care. It was defined in terms
of having the priest available to have your confession, to receive the last
sacraments which we now call sacrament of the sick, but
perhaps more terrifying in the past was called extreme unction, unction meaning anointing. And that was a way in which
one viewed essentially the passage into heaven
was relatively assured. Once someone died, it was
crucial to have a funeral service that was often fairly elaborate
and then 30 days later and then every year, one would
remember a relative who died. So I still will say mass for
my grandmother who died in 1966 at the age of 85 and
perfectly good old lady death which I say, respect. But again, this idea that
there is a certain permeability between the realm of
the living and the dead and that we need to be conscious
of our transition to that is something I grew up with. When I had my medical training particularly when I began
my residency in Boston, I thought everyone was insane. I did not understand why very old people were being taken to
the intensive care unit and from my perspective, torture. I did not understand and I trained at the Beth Israel Hospital in Boston which is a Jewish Hospital
but many of the people and there was a couple different things. People from the Orthodox
Jewish perspective would have how you would say
very conservative positions and often insist on medical care in ways that perhaps one
could define as futile. This was very hard for me to accept. And I think my interests
both in geriatrics which I finally specialized in as well as caring for
people at the end-of-life came from my religious tradition as well as the experience
here that the idea of dying as something that is
natural, normal part of life and part of our story with God was something that was not
shared with other people. What I found as I went on and actually became an attending physician and part of the faculty at this hospital, many of the people what
conferences would say why do you want to have a Catholic priest at a Jewish hospital talk to
you about death and dying? They say your tradition is 2,000 years. When it gets a little
older, it might mature but we’d like to hear
where you are right now. With that in mind, as I went
through further training, I ended up at Loyola
University Medical Center which is a Jesuit Catholic center just outside the city of Chicago, whoops. And in time became in charge of education at the medical school
while having a practice. For my academic work, I
worked in looking at ways in which we could improve end-of-life care particularly within Catholic healthcare in the United States. Catholic hospitals constitute
about 17% of the hospital beds within the United States. So it’s the largest singly identifiable provider of healthcare. In the 1980s and ’90s, I would say end-of-life care was lousy in Catholic hospitals. And I think one of the original things was to begin to work with people so, getting people to use morphine instead of meperidine or Demerol, teaching people the
right medications to use, but also people who had no
real sense of the tradition and you might run into this, again, with Islam and Muslim societies where people would
often have it just wrong as to what the tradition is. And particularly, you would
find people who had been secular or who had left the faith often decided they had to be more Catholic than the pope when their mother was dying. When I would teach my medical students at Loyola Medical Center, I would always in the introductory ethics before I’d show them the slide, I would say true or false, life on Earth and the Catholic
tradition is absolute. And they’d all put, they’ll say it’s absolute. Well, they’re absolutely wrong because our life on Earth in the Catholic and
the Christian tradition is secondary to our larger
tradition of eternal life. As a little boy, I learned these questions from what we called the catechism. Who made you? God made you. Why did God make you? To know him, love him and to serve him and to enjoy eternity with
him in the next world. What is the purpose of our life? If you wanna be philosophical,
what is our telos? The purpose, the goal of our
life is eternal life with God. Therefore, to fuss too
much about the transition is problematic. And so what John Paul II wrote in an encyclical called Evangelium vitae, The Gospel of Life, and so man, humanity is called to a fullness of life which far exceeds the
dimensions of earthly existent be consists in sharing
the very life of God. The loftiness of the supernatural vocation reveals the greatness
and the inestimable value of human life even in its temporal phase. After all, life on
Earth is not an ultimate but a penultimate reality, in other words, right next to ultimate, even so it remains a sacred
reality entrusted to us. Now, what would happen in the
1990s when I would trot out to various Catholic groups
and I would say life in the Catholic tradition
is not an absolute value? If someone would get up and call murderer, heretic, liar. That’s why I would often show slides with authoritative quotes, who the grant I had from the
somewhat ominous sounding Project on Death in America, I was able to work fairly extensively in doing a lot of educational work and begin to work particularly
with the physicians in Catholic healthcare who
could be extraordinarily, the word conservative isn’t
right because conservative means you’re trying to conserve something. They were simply ignorant, they were holding on to
something that was wrong and implying it was right. A quote from John Paul II
I always found remarkable, both the artificial
extension of human life and the hazing of death, although they stem from
different principles conceal the same assumption. The conviction that life
and death are realities entrusted to be human beings
to be disposed of it will. It must be made clear
again that life is a gift to be responsibly led in God’s sight. Now, what I’ve heard
over the last two days from Muslim scholars
has been that would be, I believe completely. When here in Islam. In other words, that my life
did not come because I made it, my life came because God gave me life. And although there are details about how I will exit this life, the timing of that exit
is essentially up to God. But most importantly, this idea that life is a gift given to us is
profoundly countercultural within the United States
and probably Western Europe. What do you mean it’s a gift? I’m an autonomous individual. Autonomy is not the highest value in the Roman Catholic tradition. The highest value is living
a life of fidelity to God. That doesn’t mean that you
take other people’s rights away but it does mean that as I, an individual, realize that the most
important thing I can do, love God, serve God, know God and to hope for eternity
with him in the next. Now, I’m going to go through these quotes from a thing called the Ethical
and Religious Directives for Catholic Health Care
in the United States. One of the things that’s very different, I believe, from Islam
is that Catholicism has lots of central authority. And in some ways, it’s a blessing, there are other days it’s not so wonderful but that’s a whole other story. But the point with that
is that it is possible to give what is considered
authoritative teaching. Just to talk a little bit about how what are the sources
the Catholics respect. Respect scripture and tradition. What I’m doing today is talking to you mostly about tradition and
from scripture and tradition, authoritative teaching comes forth. There’s a word in Latin for it. It’s called the magisterium. It means the teaching
authority of the church. So these documents will be
part of the magisterium. The ethical and religious directives are those specifically
used in the United States, however, they were approved by the Congregation for the
Doctrine of the Faith in Rome and thus they have the blessing
from the central church. There are multiple sections in there but one of them is on care for the dying. And again, what I used to do and still do when I’m doing my little dog-and-pony show throughout the United States
at Catholic hospitals, is again, the biggest problem
I have, often, are physicians who were maybe trained
at a Catholic college and they have it absolutely wrong. That’s why I showed you from John Paul II about life as a gift to
avoid the two extremes between deliberate
killing and overtreatment, the constant refrain I heard
in the ’90s and early 2000s is we have to do
everything no matter what, otherwise, I’m killing the patient. What that quote from John Paul
helped people to understand, the people who do euthasia and
the people who do everything, they’re flip sides of the same coin. They are pretending that they have agency over life and death and they
are thus usurping God’s role and thus, not right. Now, what should a Catholic
healthcare institution be all like? Well, it’s meant to be
a witness to his faith and these are some of the two poles which the tension in Catholic teaching. Human dignity in the individual, the community and solidarity. the community should be
one that provides respect, love and support to patients and families as they face reality of death. And then it goes on to
talk about the difficulties that come with the end of life. But one of the primary
purpose is a medicine and caring for the dying
is the relief of pain and the suffering caused by it. It’s not avoidance of death,
it’s not aggressive matters. Effective management of
pain in all its forms is critical in the
appropriate care of the dying. What I used to do when working
with Catholic healthcare, there are other parts about the
ethical religious directives that deal with issues
in reproductive health. As you may or may not know, a form of sterilization
called tubal ligation is also forbidden in Catholic healthcare. I would ask the people, I go
do you allow tubal ligations at saint so and so hospital? They go, oh no, Father. And I go, well, how many people
on the floor in the hospital are in serious pain and
you’re not treating them? But what do you mean? I go that is as much as a
violation of church teaching as is the tying off of the fallopian tube. And that allowed some people
to perhaps begin to understand that caring for pain was important. The task of medicine is to
care even when it cannot cure. And again, here’s the thing that I hear happening in the Gulf states, certainly happens the United States, how do you deal with technology? Where’s the starting point? Human dignity? Reflecting on the innate
human dignity of human life, in all its dimensions and
the purpose of medical care avoids two extremes. The insistence on useless
to burdensome technology even when a patient can wish to forego it and the other hand, the
withdrawal of technology with the intention of causing death. In other words, here are the two extremes put in a specific way that the
pope was also talking about. Oh, I’m gonna put every
machine on this person no matter what or well, this isn’t going well and I want that person dead
so I’ll remove the treatment. Either at those extremes are possible. What is possible though
is to withhold treatment when the person has decided
that the burdens and benefits and those the language
that you will often hear in Catholic healthcare, the burdens are higher than the benefits. And burdens can consider pain, suffering, impact on the family or expense. About palliative care, I think the important thing here is again, sometimes, people would
get crazy in the hospital with folks who are dying and
they were receiving morphine. So, there would be the endless things, hold the morphine if the respiratory rate is less than a certain thing. So that people would end
up waking up in pain. The idea was to treat the pain, realize that there could be
some complications from that but to make sure that one was if not, your intention was not to kill the person, it was to treat the pain. Make sure you treat the pain and recognize when somebody is dying otherwise, that it is morally permissible. I used to give the medical
students this example. God forbid, I have
metastatic prostate cancer. It’s in my bones. I have pathologic fractures,
both my femurs break. I’ve been through
treatment, I am in agony. I hope someone will give
me morphine for that pain and if I’m still in pain and
the next dose of morphine suppresses the circulation and there’s some
pharmacological issues here that are not as straightforward
as we used to think but if in this situation, it end ups the next dose takes my life, okay, because there is a reasonable, there’s a reason to tolerate
the evil of my life ending. The difference is if, and
the students would like this, pretend I was skateboarding
and I did a flip and landed and broke both my femurs. To control the pain of two
broken femurs is tough. And you might not be able to
do that with a morphine drip without getting me into trouble. Would it be okay to kill me if I had two broken femurs
from my skateboarding? Well, one of the medical students raises and he goes we’ve suffered enough from you so we think that would be fine but the converse here is to say, yes, you can be aggressive with that. What about the key points,
medicines to care for the dying, effective pain control and
relief of suffering is crucial, technology must be
evaluated, not to use blindly and you avoid over treatment
and deliberate killing. I’m gonna just provide a couple
quotes from the pope’s now. And again, this is part of what I would do in the United States because I would say palliative care is important, all that and people say that’s not so. That’s not so. One of the things with
in Catholic healthcare is the question of who has the authority? So, even as a physician and as a priest, people go well, you’re saying something I’d like to hear is true but is it okay? Did the pope say it? Which is not exactly what
Catholic teaching is about, however, it does provide reassurance that what the church teaches
in these particular situations is quite reasonable. Benedict XVI spoke about
palliative care about 12 years ago talking about all the difficulties that can come with a
light threatening illness. And he talks about, despite
the advances of science, a cure cannot be found for every illness. So again, we have papal
recognition that everyone will die. So again, I hope that helps everyone. But the most important thing and damn it, this thing didn’t get put in there. Sorry, there is a third
slide they wanted to say where he talks about palliative care is an essential human right. And so I’m sorry that
slide didn’t get in here. Palliative care is an
essential human right and so that has been used in an authoritative
declaration by the pope, which is probably worth noting when one is advocating for palliative care within Catholic healthcare systems. – [Attendee] Is that in the same? – It is, it is. And Pope Francis, this is his Day of the Sick message for next month. He said the categorical imperative is to never abandon the sick. I don’t know what Immanuel
Kant would say about that but I think it’s worthwhile. The anguish associated with the conditions that bring us to the
threshold of human mortality and the difficulty of the
decision we have to make may tempt us to step
back from the patient. The point he’s making there is one, again, the importance of human
solidarity and community. One of the things, I was
speaking with Baroness Finlay about is people have this misguided idea that one of the goals of
medicine is to end suffering. That’s ridiculous. We cannot end suffering. We can do really well with physical pain, we can do okay with many symptoms, however, they’re still going
to be psychological distress, spiritual distress. That’s not within the
doctor’s ability to cure. The doctor, the nurse has
a therapeutic role to play by listening, by paying attention as does the whole healthcare team. The part that’s difficult about this, I think one of the reasons
why assisted suicide and euthanasia are
increasing in popularity is it’s very hard to be
with someone who’s dying. It’s not as if they’re jolly. And it can be difficult
to face their mortality and to listen, have to deal with your own. Having sat with my mother for
many days before she died, and it’s boring. She was asleep. I was saying prayers one day
and she got up and she goes, sat up and she goes, will you shut up? Those prayers are for you, not for me and then went back to sleep. It was one of those things that takes a lot out of an individual. Palliative care, you know,
the word comes from pallium which means a cloak or
a stole to protect you from the storm of illness. There is no magic of that
without human intervention and I’m hearing that clearly
from the Islamic tradition and it’s at the heart of
the Catholic tradition. This is where more than anything else we’re called to show love and solidarity, recognize the limit that we all share, that is that we’re gonna die, and showing our solidarity. Let each of us give life
by in his, her own way as a father, a mother, a son, a daughter, a brother, a sister, a
doctor, a nurse by give it. And I think this is one
of the things, underline, palliative care is not another technique. It is meant to show the
appropriate love and care, have for each other. The two great commands in Christianity, love your God, love your
neighbor as yourself. Palliative care is an instantiation and acting out of those two commandments. And he finishes, even if we cannot know that we cannot always
guarantee healing or a cure, we can and must always care for the living without ourselves shortening their life, but also without futilely
resisting their death. This approach is reflected
in palliative care which is proving most
important in our culture as it opposes what makes death most terrifying and unwelcome,
pain and loneliness. Now, it’s interesting. So what does the Pope Francis say the point of palliative care is? The treatment of pain and the
alleviation of loneliness. That’s a. It’s not to end all suffering, it’s not every kind of wizardry possible but it’s technical expertise
in the treatment of pain and it’s a human
commitment and loneliness. Just a couple of summary slides. So, probably the big point
that used to stun people is that medicine and
life-giving efforts are nice but the point of our life is
not an eternity in the ICU. The point of our life is
eternal life with God. Excessive treatment and
burdensome treatments are both to be avoided because they have a
fundamental misconception, the idea that life belongs in
human hands rather than God’s. Pain and symptom control
are essential parts of Catholic healthcare. Euthanasia is forbidden and
then I mentioned those sources, the Ethical and Religious Directives for Catholic Health Care. There are similar things in the Catechism of the Catholic Church and then statements from recent pope’s all affirm the essential
nature of palliative care in the Catholic tradition. So, thanks. – [Attendee] I’d like
to address a question to Dr. Suleman, please. I’m gonna preface it with living
in this part of the world, I find that I have a
cultural responsibility which means for any kind of
a crisis in the community which is not Muslim becomes mine, or other clergy because there
aren’t identifiable clergy for other cultural
traditions that exist here. Okay, I would challenge or at least posit an aspect of your presentation. I really, really do affirm your call for better trained chaplains and hospitals but I would reflect that
the training is needed is cultural, not religious because a Muslim from an Arab country is going to have a
different cultural issue about palliative care than a Muslim from an Indonesian country
or from Pakistan or whatever. And so, a greater diversity
of cultural training, also of course for a
Japanese or Korean patient. The issue is cultural,
not religious, in my view. Thank you. – [Attendee] Also for Mehrunisha. I was just wondering because
the Muslim population is as racially diverse as it is in the UK and to what extent do
you think the distrust that the community feels is actually got more of a racist basis than anti-religious bias or
is it a combination of both? – [Attendee] My question
or is on similar line. I want just to comment. When I, again, I’ll use
your Irish experience. When I came to Ireland in the late ’80s, people were shying away
from working in pharmacy because they were afraid of
dispensing oral contraceptives and then it moves to the
idea of the referendum, the first referendum I watched in Ireland was on the legitimization of abortion and so on so forth but now,
things are moving differently, so that’s the comment. But for Dr. Suleman, I think I agree with all the points that we are trying to and I observe this because
I’m trained outside my country that we are trying to bring the ideas and practices wherever we are trained and implement them in where
we are in a different area. And so you are on the opposite direction that you have people from diverse places, diverse even educational
backgrounds, diverse nationalities and we are trying to implement or practice practices that we are
using for that regional and I have spoken about this yesterday that we should have a suitably adjusted ways of dealing with these issues that suits the community. Even if we have to educate
their health providers for this specific area. – [Attendee] So, while
you write, Mehrunisha because I have a question for you but I want to first say to Myles. So, I wanted to kind of get a sense and I’ve heard this term several times, the notion of palliative
care being human right within the Catholic tradition or at least being advanced as such. If that language is strategically
deployed or is intrinsic, and I only know, so, I would say I’ve read
some stuff of Jack Machan and this issue of human rights. So, is this strategic
deployment or is it sort of how does it come about? How do you build that up? The rest of stuff, I
mean, we knew each other, I love all of the rest
your saying but that piece, how is it uncertain? And where’s the goodness and ground us with the Catholic tradition? Okay, Mehrunisha, so here, my question is taking
on from what they said. So you mentioned and you said education, the education, I mean, trust for help with trust building and you need I think you said religious interpreters. I get concerned in my own
empirical intervention work about us potentially doing it in unethically inappropriate way where we want to use religion
as instrumental vehicle for ends that are may not be religious. I mentioned that story
about persuasion, right? That we have this problem
with there being a, we want to have overlapping
religious and health ends but maybe the health end is
not one that’s religiously okay or maybe there’s multiplicity of views. So, if you’re going to
have a program of education in that modality and have
religious interpreters that are helping people,
where does the role go? Is it ethically appropriate
to instrumentalize religious vocabulary for a health end? And on that line, what’s
Muslim about this? In your presentation today,
what is the Muslim dimension? I grasp it because you
were trying to reference it as a strategic, they’re
all these minorities, all these cultural issues
but what was Muslim about what you tell? – The issue of rights talk
in the Catholic tradition is, and there are people who
know this much better than I, is a relatively new move that
probably started in the ’80s, I believe, where the church
would talk about rights. It was not opposed to rights before but it had another set of
language rooted in natural law which looked in terms of
what are the obligations that individuals had or the
community had to the individual. I think the rights talk
is meant to accommodate and provide a language
that is more attractive in the current world. Coming from the Aristotelian to mystic tradition of the church, rights are not the kind of thing that, it’s not the language that’s used, they’re there but it’s a
different set of language. I think the church is
simply using a strategic way to teach and make its point. I find it strategically useful so that if I’m dealing with
a Catholic health system that’s retrograde in terms
of their care for people at the end of life. I can say Pope Francis said it’s a right so you’re a bad person
and you have to do it, so. – Okay, so thank you so
much for all the questions. What I’ll do is I’ll go
through them one at a time to respect the fact that
they are distinct questions but there may be some overlap. So the first one in terms
of cultural training. Absolutely, we’re finding when we’re doing workshops
at hospices or hospitals or even out in the community working with the local community so they are part of that
training is very, very important. So those can be volunteers
who work at the hospice, the local imam who works
as a volunteer also and these are people who are
embedded in the community. They represent not only
the faith perspectives but also the cultural perspectives and that becomes a very important part of the training for the
healthcare professionals in that setting. So, you’re absolutely right. I mean the purpose of the research is to tether the conversation around the Muslim perspective in the UK but of course, I mean because
of the ethnic diversity, there will be within
the data set variations. I have a presentation on that. I mean, we can we can
talk more about this. There was only so much that I
could present in half an hour and of course, some of that
is connected to how it is that I wanted to link the conversation around religious knowledge and authority that came out of the
conversation yesterday. So, I hope that addresses the
first part of the question. That, your question about
racial diversity, absolutely. So, when I speak to particularly
younger groups in London. some of that is about their
experiences of racial prejudice. But when we think about
more broadly the experience of the Muslim population,
not just in the UK but in a lot of countries
in Europe and North America, some of that experience
is also closely tied with their Muslim identity. Now, it may be that the
perpetrator is being racist but they may well interpret it as something connected
to the Muslim identity and I think that’s something
very important to consider. If that’s their interpretation, then that’s just as important
as what’s being intended by whoever it is that’s hurling the abuse. So, when my friends get
called, oh, you Paki, it’s not just about them being Pakistani when they’re probably not
but they’re identifying it as them being Muslim. So, yeah. I’m not sure whether that directly sort of delineates what
it is you’re saying but it is a bit of both, yeah. A very important point
in terms of how we think about translocation of
practices in one sense and then translocation of
values in the other sense when we’re thinking about the UK context. Of course, education is central to that. The point that I was
trying to make at the end was beyond education. We need to really be
thinking about the spaces within which this education and these conversations are happening. And these spaces ought to
be spaces that are trusted by the people who are involved. And this is why doing
this work in the community may be more important than
doing this work in hospitals and in hospice settings. It’s a gauntlet I’m setting up for myself which is get out of your
own space, a safe space and really be out there speaking
to the people on the ground to find out how it is
that this will influence their day-to-day thinking
about this sort of thing. Okay, how long do you have? So, this is a deeper sort
of methodological question. As with most things, the
answer is yes and no. So, in some senses, it was easier reaching out to mosques in particular. Despite being female, the
imams have been very open, very converse and incredibly candid in sharing their experiences, the sorts of challenges that they face. The other side of the coin, I end up having conversations with people and because I use in-depth interviews, I need them to verbalize something that may seem to them very obvious so they say something and
I say look, I understand but would you be able to
tell me a little bit more? And then they sort of
look at me suspiciously and they think how can
she not know what this is? And I have to explain to them, well, look, because it’s research and it’s not just an
informal conversation. I need you to describe in your
own words what that means. So, yes and no. Dr. Allison, very important point. There is always that danger of overlooking what the negative
unintended consequences of any intervention. What I’ve been trying
to do to mitigate that is again, working more with the community in terms of what it is
that they already consider to be problems. So, when families themselves describe not having had these
conversations earlier, not having had someone to hand to have these conversations earlier, then that in and of itself is a need. If we can equip people to
facilitate these discussions, if we can train people
to be more comfortable to press these sorts of issues, then hopefully, we will be able to have communities where these
sorts of issues are something that are more open in the mosque setting and in the family setting. Healthcare professionals say
that they aren’t able to talk about end-of-life care preferences
with their own families and these are people who
are supposedly trained to have these sorts of conversations. Yeah, no, absolutely. I mean central to that
is relationship building as in it’s not going to
just be one conversation that has a very distinct end. It is about having those conversations that are robust, sufficient,
longitudinal enough so that it does become that
person’s decision in the end. Be that their own personal
decision or the decision of their entire family. At the moment what we
find is that people end up at a cliff edge in a very acute situation where they really haven’t had that the most precious
resource, that time, to think about these sorts of things. The other question, what
is Muslim about this? Again, how long do we have? We can sort of get into this discussion about the implications of empirical work in being able to derive what it is that we can normatively understand. In terms of the presentation I gave here, the underlying commitments
related to religious knowledge and religious authority is particular and is something that is
not very well understood. And is an aspect of the research that I was trying to bring out. Some of it has to be
considered within the context of the multicultural,
the multi-ethnic profile of the population but
there are particularities related to people’s faith commitments and how it is that they embody those, that is something that
needs to be represented in terms of the data analysis. – [Attendee] I thank you very much. How you deal with the question, the religious belief in destiny in faith? In Islam, what we call
(speaking in foreign language). Many people, they say well,
I’m not sure about Christianity but at least I’m talking about Islam, they believe in this date,
I’m going to die anyway because it’s been decided
when I was 40 days old earlier in life. So why should I worry
about medical treatment? Why should I worry about this, about that? So how you deal with situation like this? Maybe in Christianity
have something similar to this belief anyway, so. – [Attendee] I’ve been interested in the occasional references
to how healthy it is to have a narrative,
either, Assam mentioning the 15 elders talking about how we prepare for death
or Myles, you’re mentioning learning at two years old that there are ways to approach death. And mostly, our conversations here have been very enlightening
but they have been about a hard stop when death occurs and then we are separated from the family and the experience. People bring their own
narration or lack thereof, there are two things I’d like to know. One, what can we do to foster this healthy narrative about
understanding death so that it’s not so shocking? I mean the technology and foreignness is but other deaths occur around two things that are common to the human condition. One is massive natural disaster
that was mentioned yesterday and the other is war. And I have many emails
that end in the word peace and then a name but war has
been present for a long time and Drew Faust wrote a
very interesting book about the US Civil War,
The Republic of Suffering and she essentially talked about how there was a uniform culture of the (speaking in foreign language) that people needed to hear the last words of a soldier or someone
in a collateral damage. They needed to know something
about what had happened. And I find that people still want to know some of those things. Was there a signal that the dying person gave to communicate to the end? Or since I’ve moved to
the American Northeast, people seem to have various
rituals beyond funerals, they start nonprofit
organizations related to, in honor of a person or to fight
a disease or a circumstance but it does all center around
the narrative and the ritual that happens after death and
shapes the next experience that we will encounter with death. – [Ilora] Thank you both for very relevant and illuminating presentations. I wanted to ask you about
hospital chaplaincy services. In our university hospital, we have a multi-faith chaplaincy team and I have wondered
whether there are places where actually both the Muslim chaplain and the either Catholic or Christian, whichever denomination
chaplain should go together into situations such as
the organ transplant, one that you’re talking about because actually by going together, they demonstrate an understanding of what is really happening but they also, other demonstrate too that
they’re there to support everybody together, the clinicians, as well as
the patients and the family. Whereas if you only go for the patient, you’re kind of saying you need protection from these awful people in
healthcare who gonna do things. And linked to that is the
whole organ donation problem because I managed to get the UK government to pass a regulation where you can have preferential donation. It is not directed
donation but it means that, and it was designed to
try to up the nation from the different ethnic
minority communities so that somebody can say that my son’s organs are to be donated. we would like if possible
and the kidneys match to go to so and so who
was in the extended family who’s having dialysis is
on the transplant list. And then all other organs
can go into the pool, because I think there is a real concern, the whole organ donation
stuff can rebound. The Muslim community in particular often have diabetes,
renal failure need kidneys so their recipients but they’re not donors
into the pool, sometimes, and that is a real
problem and I think it’s, it would not make good
headlines on a newspaper and it will damage everybody because if the organ
donation pool goes down, nobody gets anything. And linked to that and
the concept of sharing, I also have a concern
that some medical schools are now subtly filtering
out prospective students who make it clear that they
will have an opposition to euthanasia and
physician assisted suicide. And that’s beginning to
happen in some medical schools in the Benelux countries and it’s happening in some
medical schools in Canada and I only know about it anecdotally and I think it would be something
that they would all deny but I do think the intake needs monitoring as to how many of the students are able to express views because we know the
same filtering goes on, beginning of life girls who want to go into
gynecology and obstetrics can find that they can’t
go on the training program. So they’re filtered out
before they even start. So there’s this this subtle move now which I think is also part of
a general anti-religion thing and which is why I said yesterday, I think that rather than
looking at all the differences between us all, I wish we would say, (speaking in foreign language),
have a faith which guides us versus (speaking in
foreign language), no faith because I think that (speaking
in foreign language) bit is going to emerge as
an increasing problem. – [Attendee] Thank you,
thank you very much for both presentations. I’ve been thinking
about the important work that Dr. Suleman is doing and bringing us and I think Dr. Assam also does some of this kind of empirical work and while we’ve had a lot of discussion from both historical
and normative physicians on questions of palliative care, what I’ve heard from the
representatives of WISH from Dr. Al Hindi from Oman of the various kinds of
attitudes people have that helps me identify
a gap in the literature at least when it comes to palliative care is that we need a lot
more medical anthropology. In other words we need to study how people are experiencing things. Why do people in certain
areas, for instance, say that we want to have this
kind of redemptive suffering? This is redemptive suffering
is important for us whereas in other
contexts, people would say give me some kind of pain relief, right? Or there’ll be different
kind of thresholds. So, this is largely directed at Dr. Dallal that he might have open up this gap here of having medical
anthropology of the region at his very good university but at large, I think there is a need to fill this gap of medical anthropology
but here’s the lacuna, not, sorry, is the kind of warning is that one must have this
work of doing the anthropology in conversation with people
who also know the tradition but the tradition doesn’t
have the last word. The tradition can also
learn from the experiences on the ground but oftentimes,
I find anthropologists do their own thing with
the stuff that they get and they paint a picture
that is not recognizable as to what it is that the people want. So, I mean, and that is
a larger conversation but I think it’s important in terms of our conversation here today. Thank you so much. – The gentleman in the back
who asked the first question regarding sort of a
deterministic point of well, it’s already been ordained when I will die so why should I bother with any planning? There’s a tension with that
certainly within Christianity. I could not talk about Islam. Do I say prayers? Do I read the Psalms and say indeed, you knew every one of my
days before I was born. There is always a tension though between what is predestined
and what our freewill is, and that’s an endless argument which I won’t get into at this point but there is the tradition
within Christianity is how do I choose to have
the best life possible in the light of what
God has revealed to me? And to choose to have that best life that would be most suitable to the end that God has called me to eternal life. How do I make my actions
correspond to that end? So thus I do have an advanced directive that says that if I am critically ill, I do not want my passing
to heaven delayed. Do I believe that
influences what God does? No. Do I believe that shows
how I am responding to God’s action in my life? Yes. So that I believe my
actions are part of the ways I respond to what God
has done in this world and that my making choices
are part of the ways in which I submit to what he
has taught me through things. So, with Betty’s question
about narratives, I hadn’t thought about
narratives of disaster or narratives or war within this context. One of the things I did
deliberately this morning was to talk about the narratives within a particular
culture that I grew up with where death is part of the tradition and we would talk about the
great wakes and funerals that people would have. There’s a thing within
the Catholic tradition, the Christian tradition called
the communion of saints. So, who is it that we live with? Well, that’s the people who are alive now. The people who are dead and we’re not quite sure where they are, this sort of indeterminant
category in Christianity or Catholicism called purgatory and then they’re people who are in heaven. And so that whole group is always sort of a group of witnesses that are visible to us at that time, again, within the narrative
structure that I grew up with. I think the problem with war or particularly the problem
with natural disaster, it’s easy to seek God’s
participation in the narrative with those three different groups. With something like a natural
disaster, with the tsunami, the number of questions with
the tsunami in Indonesia in what, 2005? Yeah, the number of
people who came up to see how could God permit this? Because it’s such a
narrative that’s interrupted that defies our reason. Again, it relates to the
questions of theodicy that aren’t gonna get into. The issues of war and narrative, I think those narratives get
built into deliberate things like patriotism, love of country within, I know that like within the traditions, say in the United States, particularly around the Second World War how important church stories were and religious motivations
for engaging against fascism. So that people felt that
they were obeying God’s will even as they knew Germans were
being told the same thing. But the natural disaster
usually is a narrative about evil and how do you deal with that. With the Baroness’s question which I think was mainly
directed towards you, the issue about what
goes on with applications to medical school and selection of people to make sure that there are
certain atheistic biases, in the United States,
it’s protected by law. You cannot ask medical school applicants about their positions on
abortion, for example, that’s specifically there. What happened when I
applied to medical school? The guy said I see that you say a lot about going Catholic church. Well, I do abortions and
what do you think about that? I said well I think you’re wrong. You could be a nice person. It turned out he was a radiologist,
he didn’t do abortions. He just wanted to see if I’d snivel and be nice to him so I
get into medical school. Again, you never quite
know what’s going on with these crazy examiners and I think that the bias has certainly get brought into that, so. – Thank you again for
all of the questions. The issue you mentioned about faith, sort of just build on
what Myles were saying which is it’s something
that I have encountered in my data set, both
in terms of what it is that patients and families described but also what healthcare
professionals encounter, so when they encounter
patients who express what they would describe as fatalism, they put it down to patients saying, well, if God’s ready
for me, then that’s fine and I don’t need anything. From the perspective of
scholars that I’ve spoken to the way they lay it out is similar to what Dr. Assam and Dr. Ayman have described in terms of the Islamic
perspective on this which is there are very few interventions that can be classified as curative and what that then leaves us with is a huge margin for decision making. It may be that from the perspective of healthcare professionals. It’s interpreted as fatalistic because they feel more
optimistic about the intervention but what the patient and
all the family are doing is they’re putting in perspective that other cycle of chemotherapy or the entire treatment regimen in the perspective of the
life that they want to have in that end of life period. So, it is something that I’ve
encountered in the data set. It probably is a much longer conversation in terms of what the underlying values are and how it is that fatalism
can appear as acceptance in a certain concept and something very
different in another context but it’s a very important question. Healthy narratives, really,
really important issue. I think Myles has provided a very, very important response to that. In terms of the UK setting, how do we encourage these
sorts of narratives? I’m the least popular
person at a dinner party. All my friends say don’t
ask her what she does or she’s gonna do her death talk and so everybody gets really intrigued so they’re like what do you do? And then all my friends
sort of hide under the table and they’re like we’re never
bringing you to dinner again but it’s that thing of how
do we have open conversations about something that is
incredibly difficult? I know I struggle with my own family and you know that sort of really putting the cards out on the table
when I find it so much easier with all of you. But it’s something that we do need to challenge within ourselves but yeah, it’s very, very important. Baroness Finlay, we could have
very, very lengthy discussion about the challenges
related to organ donation. I think your suggestion
of multi-faith chaplaincy or having other people involved in that conversation is critical. The challenges that often
in these situations, they’re very time-sensitive and usually, the people that you want around
the bedside aren’t available and that’s when things don’t go as planned but maybe by raising
this issue more often, we can start to have conversations about getting multiple
chaplains involved, for sure. In terms of what you
said about med school, I had a similar question
when I was interviewed about euthanasia, in particular and he pushed and pushed and pushed and I said, I’m sorry,
you can ask me again but my answer will be the same. I wasn’t aware of the implicit prejudice but that’s something
that maybe we should look into more formally. Prof Mussa, thank you so much. I feel like I should
hand over to Dean Dallal to answer the first part of your question. He’s shaking his head so I
won’t put him on the spot. Like I said, I’m moonlighting
in the humanities so I won’t sort of put
an anthropologist cap on. There is more work that needs to be done. I’m trying to recruit people
to do more of this work all the time if there are willing sort of participants in
the audience then please, please join us, there’s a lot
of work that needs to be done. You’re right, there are
methodological challenges and I think that’s something
that we do need to be more open about. It’s not something that’s resolved, it’s not something that’s
methodologically fixed and does end up being
sort of a feedback loop that can prevent other types of knowledge and other types of influences
being involved in that process but yeah, I know it’s
a very important point.

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