Dr Eric Wasylenko | A Catholic Response to MAID

By | September 4, 2019


So good evening, everyone and welcome to
our episode in our continued series on Medical Assistance in Dying, and today
this evening, we will hear a pastoral response by Dr. Eric Wasylenko. And Dr.
Eric Wasylenko is a Palliative Care Physician and Clinical Ethicist. He
speaks widely on topics around Care at At the End of Life and has supported
education for pastoral volunteers for many years. So let us welcome Dr. Eric
Wasylenko. Thank you, Michael, and thank you for having me here. I understand, and
I’ve heard the great talks that you’ve received from Father Cristino and
Bishop McGrattan and really wonderful learning and lessons for all of us about
the deep mysteries of the Catholic faith, and how we respond as human beings in
this really difficult time around medical assistance and dying. And I
wanted to say at the start, I’ve had the real great fortune to work with and to
be part of the teams that provide care to people at the end of life. And the
pastoral volunteers that you are and that many of your colleagues are, are
critically important people in the journey. And we’ll talk a little bit
about that as we get into Notions of Accompaniment for All End-of-Life Care,
not just for people who may have requested medical assistance in dying.
I’m going to start with a little reflection from Laurence Freeman who is an OSB and wrote a book a number of years ago called, “The Short Span of Days”,
and it’s a reflection for people, caregivers, and patients, and family
members for those who are dying. And he says, “At death’s door, only one person
can go through at a time, but it makes a great difference to know that on this
side of the door, there is a loving presence to accompany you and to prepare
you for the presence that welcomes you on the other side. That seems to me the
real mission of the care giver in this field, to be that loving presence as fully and as humanely as possible. And I think that
quote really sums up much of the work that you do and that your colleagues do
in service for others. I’m going to start showing you a few slides, and I have to
always start at the start of my presentations because of my university
affiliations and other work; just a declaration of my of my conflicts of
interests or or positions. And I have no conflicts to declare. I do have
academic affiliations with the University of Calgary, the University of
Alberta, and have contractual affiliations with the Health Quality
Council of Alberta, and Alberta Health Services in end of life work, also in the
Program Development for Medical Assistance in Dying that’s been
generated in our province in Alberta. And I will speak about Alberta specifically
even though I know that some people that will see these series will be from other
provinces and may or may not know with what’s actually happening within their
own jurisdiction. I’m also an advisor to the National Vulnerable Persons Standard,
which is an effort nationally for people to really put some teeth to the language
of vulnerability and what we’re meant to be addressing and thinking about for
people who are uniquely vulnerable as they’re thinking about the end of their
lives and may contemplate or be convinced of the the rightness of
various modes of dying. I am speaking today on my own behalf and not on behalf
of any of these organizations. So just moving on, I’ll say I’m also here not to
take a side or to convince you about any particular point of view nor to debate
the merits and pitfalls of the various laws and regulations that we now have in
Canada and each provincial and territorial jurisdiction. But I do want
to assist people that are pastoral volunteers and working with those at the
end of life to navigate the new circumstances the new conversations that
you may be having with the patients and family members that you’re helping along
this journey. This is important work you do as Catholic pastoral
volunteers and even non-Catholic pastoral volunteers your colleagues who
are doing this work out of service for their fellow man. It’s really important
that we understand in the new ways that the the law has
changed and how that impacts the care that we provide in the way that
we speak with our with our patients. So, there’s some key messages that I’d like
to address today. I want to make sure that people are aware of the permissible
actions within the law as you’re doing this important pastoral work. We want to
talk a little bit about what’s changed and what hasn’t changed in the law
because there’s lots of misunderstanding out there about those specifics. I want
to address some notions of withdrawing and withholding interventions. We often
hear in the media the fact that we’ve been doing this end-of-life care and a
euthanasia type approach for many, many years because of our withdrawal or
withholding of particular medical interventions. The result being that a
person dies. I want to just make the distinction between that from a moral
and legal point of view from what we’re talking about with euthanasia or medical
assistance in dying. I want to address the notion of
supporting dignity and you heard some very clear language from the bishop and
from Father Cristino about what dignity is and talk a little bit more about
compassionate accompaniment that is the important part of the work that you do.
I’ll reflect a little bit on Alberta’s program for End-of-life Care and Medical
Assistance and Dying without going into those mechanics in detail because those
things can be looked up on the internet very easily, and I’ll show you how you
can do that. I’ll talk a little bit about some of the future issues that are being
contemplated that might extend or restrict potentially, but most likely
extend the eligibility criteria within our country. I’ll talk a little bit about
how I see the gifts that you bring playing out, and then also provide a few
resources for you for further contemplation and study. So what’s the
genesis of this idea of palliative or end-of-life care? There’s lots of terms
being bandied about, and I’ll talk about them a little bit, but really, this notion
of “Pall” or “PAL” is to cloak. So, you’re familiar with this notion. There’s a
picture there of some pallbearers, and that’s how we often will think about
this word “pall”, but the derivative of that word “pall” really is
to cloak. And so the pallbearer carries the pall, which is the cloak that covers
the body. We now have caskets, but many societies for years before did not
have a box or a casket to carry a person in, but would carry a person on a
slab and would cover over with this pall or with this cloak. So, this, through
the work of palliative care founders Dame Cicely Saunders primarily in the
late 40s and early 50s in Britain starting the modern hospice palliative
care movement, use that term to talk about this notion of covering or
cloaking and helping to relieve the suffering symptoms that people would
have as they approach the end-of-life. We now use it a little more broadly and
think about the concept of really this enveloping care as we try to help people
towards the time of their death, addressing their spiritual needs, their
psychological and emotional needs, their physical needs, their relationship needs,
and issues in preparation for their death and also to help reduce their
suffering, but to serve their function in a way that they can be as strong and as
good as they can be functionally so that they can meet the aims that they have in
the limited ways they might as their illness advances. People have a very, very
strong sense of important aims before they die in the limited time they have
left. And so when we help people relieve their suffering, it’s not only a good to
relieve suffering because suffering is noxious to the human condition, but it’s
also really important that we relieve suffering so that people have the energy
and the mental capacity and the wherewithal to actually complete those
important aims before they die. And some of those aims may be very simple
conversations with people that they need to complete before death. They may be
more complex tasks they have about managing their affairs or accomplishing
some last wish or some other thing, but each of those are really important to
the person. And so we want, through palliative care, to be able to address
those bits of both suffering and function to help people address this
really important time of their life. Palliative care really says also
that they will not hurry death along, and they will not hold
it back; that it’s really a mechanism to try to help people in their suffering.
There’s a current controversy in the country about how we actually language
this, and lots of people say, “Well, palliative care, it means such a bad
thing now because people are associating it with the end-of-life”. We talk lots
about late life care as well. So as people are approaching this last stage
or phase of their life, how we can care for them during that time when their
goals are so different than they would have been before. End-of-life care,
terminal care really talks about the very last stages of a person’s life, but
end-of-life care and palliative care now really embody a much broader sense. So,
we’re saying in in clinical practice that people who who might have a
terminal diagnosis or a diagnosis from which they may potentially die, but it’s
not certain that they would should have the benefit of good palliation or
palliative care right from the moment of diagnosis because if palliative care is
really meant to relieve bad symptoms from treatment or from the illness, and
if palliative care is really meant to help support people’s function so that
they can live as well as they can during that stage of their life, then we want to
be starting good palliative care very early in a diagnosis even in conjunction
with good interventional care that might be influencing the course of disease so
someone may have the opportunity for curative care. Or they may have the
opportunity to actually have maintenance of their health condition without a cure
but without a really near-term death from the illness. And so palliative care,
in this philosophy of palliative care, is really changing now to embody that
notion that we start good symptom management, we start good addressing of
psychological, emotional, spiritual, and physical needs and relationship needs
right from the moment of diagnosis, and not just when a person is about to die.
And that’s really important. So, I wanted to move on and talk a little bit about
medicine’s place, and one of my colleagues Dr. Bev Smith from Ontario had this
really nice reference in one of her talks about an
author called Timmermans and attributes to Freud this notion while questioning
that death is inevitable. Our modern sense and our ability are a way
to actually push death back adds anguish to this sense of inevitability of death
because we can secure these little small victories all the time over illness. We
keep pushing it back, and we’re really really good at that, and thankfully, we’re
good at that in science and in medicine, but it raises because we keep thinking
that there’s one more cure, one more way to push disease back, that the
insecurity of the finality of death, which we will all come to at some point,
about this ultimate demise that we’ve now become insecure about the
notion of death. We don’t have to think about it every day. It’s not so present
in our minds because we think we can be potentially mortal for a much longer
time when many societies previously would live and have that lived
experience throughout their entire lives. So I often like to say it’s really only
been two-and-a-half generations that people have not been born at home or
have died at home. And we’ve had this very good opportunity to actually help
people we think medically by creating hospital systems and and having people
somewhere else for those important events. But people tell us in national
surveys that they would rather be at home, and they really want that. Now,
that’s not the perfect choice for everybody, but for many people that is
exactly what they desire. And so our modern healthcare systems are really
trying hard to make sure that we have good palliative end-of-life care in all
environments including at people’s homes, in long-term care facilities, in
hospitals, and in hospices so that people can have some choice about where they
live as they’re approaching death and also that their
supports, their family members and others, can be supported in important ways also.
So, we now have this sense or at what I think is actually a need for many people
to have what I call “human control over death”. Is that an illusion? And is it
really actually a conceded illusion that we have as human being saying we can actually push death back? And we often do that in medicine and say as clinicians, nurses, and doctors, and researchers, you know, we’re just getting
really better at pushing out the boundaries. That’s not always what people
want, and in fact people will live longer, and we celebrate the notion that the
length of life for most people has advanced quite dramatically in our
society. Many people will live with multiple illnesses and a lot of frailty
for many years before they actually do die. And now, there’s creeping into the
medical literature in really strong ways this idea that we might actually help
people stay alive, but that may not be in their best interest, or they may not
desire that kind of life. And it’s actually in some really high tech
environments, it’s actually very hard to die or to become dead through the
through medical treatment. So moving on, I wanted to just talk about this
notion philosophically about how we die and where I think the battleground
really may be in this moral debate and society debate about euthanasia and medical assistance in dying. I think it really is between what I would call a moral or a
Western fascination with autonomy, and we hear that in the media all the time – this
idea of I want my ability to control my own destiny, my own fate, and I want control over my decisions. I want control over my life and now, I want control over the
way, the manner, and the timing of my death as well. So, that’s on one side, and on the
other side might be really what I’d call I guess a psycho, sociologic, and
spiritual narrative about experiencing and acquiescing to the full range of
life’s offering. So, we have this arc of existence that’s been given to us in our
Catholic tradition as grace from God and our life as it starts and as it ends as
just the physical embodiment of our souls and who we are. And the acceptance
and acquiescence of all that Life offers us the good and the bad is really the
other notion and why we might have from a moral theological point of view this
understanding that you’ve heard from Bishop McGrattan
and Father Cristino about the duty, the moral imperative and the
spiritual imperative to actually honor life in all its dimensions. So, I would
turn then to this notion of respect for autonomy, and that’s really the the right
language in sort of bioethics conversation. It’s not autonomy itself.
It’s respect for it, and it really embodies this notion of choice for
ourselves. Autonomous really talks about self-rule from the derivative root
of the word. But it does not exist, this notion of ourselves and our ability to
control our fate and our destiny in some limited ways in a vacuum. And the notion
of relationality that we exist and live as human beings i n concert, in community
is an absolutely vital concept to remember. So, I would say that the nature
of self and the nature of being a human by its very self, the existence
of being human invokes the idea of the other who was with us as we travel
through this arc of life. And so I come to the idea of accompaniment in this end
of life work that you do and that I do and that many others are. I wanted to
read from Jean Vanier’s book “Becoming Human”. And many of you would know deeply of the work of Jean Vanier. So I’ve got a little bit. I’m skipping some quotes from
through one of his chapters, but I’ll just read it to you. “For this
discovery, people often need help from somebody who walks with them, an
accompanier. One of the most important factors for inner liberation is how we
are accompanied. We must ask ourselves who is walking with me? Accompaniment is necessary at every stage of our lives but particularly in moments of crisis
when we feel lost, engulfed in grief, or in feelings of inadequacy. The accompanier is there to give support, to reassure, to confirm, and to open new doors. The
accompanier is not there to judge us or to tell us what to do but to reveal
what is most beautiful and valuable in us as well as to point towards the
meaning of our inner pain. In this way, an accompanier helps us advance to greater
freedom by helping us to be reconciled to our past and to accept ourselves
as we are with our gifts and our limits.” He goes on to say, “The word “accompaniment”
like the word “companion” comes from the Latin words “cum pani” which means “with
bread”. It implies sharing together, eating together, nourishing each other, walking
together. The one who accompanies is like a midwife helping us come to life, to
live more fully, but the accompanier receives life also. And as people open up
to each other, a communion of hearts develops between them. They do not clutch onto each other but give life to one another and call each other to greater
freedom.” And I think that’s the core essence of the work that you’re doing. We’ve medicalized suffering. This is just
a picture of an ICU. It’s just a stock picture and just to remind us that we’ve
got a lot of technology around us now as we’re caring for people, trying in a
beneficent way through the gifts that God’s given us of intellect and science
and advancement to keep people alive. And it’s really good that we have these
things for us. And so, I say that we can do amazing things, but there are limits
technically. There’s social limits, and there’s moral limits to what we can do.
So, we’ve altered the way that people die and what people encounter in their lives
as they approach death, and that’s really important to remember. So, people say in
the common conversations throughout the country, “Why can’t we stop suffering in medicine?” Medicine was never meant to stop
suffering. It can make a big, big difference for many people in the ways
that they do suffering, but suffering is more than physical symptoms. It’s about
internal pain as well. When we’re frustrated as palliative care providers
and teams, when we can’t really seem to make an individual patient we’re working
with feel better and safer, more relaxed, comfortable, and prepared, we come to this notion even though we’ve given them very exemplary palliative care and their
physical symptoms may be primarily abated that the internal symptom of
suffering, of fear, of uncertainty about the future that people come to us with, medicine is not prepared actually and
able to abate. And so that’s often why people will come to you with the request
or to me with the request to say, “I want to think about this other these
other ideas about how how I may die and what are the options or the
opportunities I have in the mode that I want to die”. And people have been asking
be even well before the law changed they’ve been expressing this idea,
this need to be dead, but that doesn’t always mean for the person that they’re
saying, “But I want some action taken to cause me to become dead,” but it’s an
expression of the suffering and the loss that they’re experiencing as they
advance in their illness towards this future where they will not be in physical
existence any longer. We always all of us have questions about
what will that be like, the process of becoming dead and what will it be like
after we’re dead for our loved ones and for us. We just don’t know. That’s one of
the great mysteries of life. So when we medicalize suffering and the
resolution of suffering, there could be a problem. So, here’s what society’s asked
us to do because they recognize, society recognizes, that through the medical
system, there probably would be the greatest chance to help abolish, if you
could use that word, or minimize the suffering that people would have. When we can’t do that relief of internal suffering, somebody, society says, should
be given the authority to help a person to become dead. So society asks us to
provide relief, comfort, dignity, and support a person to their best
functioning so that they can achieve their important aims. And that’s really an
encapsulation of the comment I said about what society asked palliative care
to do. Newly, now, they say, “Provide an option for an early demise, and with this
option do three things: assure conscience rights of providers
are harmonized, protect vulnerable persons, and make sure access is fair and
reasonable.” Those three things in concert, not one more important than the other.
That’s what society, through the laws of the land that we exist in, has asked us
to be able to provide. So I wanted to create a distinction in our minds as
well about this idea of withdrawing, withholding interventions. We talked
right from the get-go about this idea that some people say, “Well look, you
physicians and nurses have been doing this for generations. You’ve been not
providing CPR when someone says don’t provide CPR when you say you don’t think
you should do it You’ve been stopping interventions. You
stop the cancer chemotherapy. Or you might stop an ICU intervention, so you
withdraw someone from a ventilator. You might stop dialysis treatments, all those
kinds of things with the intent that the person is going to be dead because
you’re no longer intervening with their their physical illness in the ways that
you normally can. So what’s the difference? The outcomes the same,”
as people might argue. And here’s my response. Medical interventions are
really interventions that are trials of therapy that interfere with the body
processes that it might be affected by illness. At some point, a patient says, “In
my values, in the way I want to live, thank you for all you’ve done, but
I no longer want to have the benefits or the burdens,” it often is, “of the
treatments that you’re providing for me.” Or the clinician might say, “We think that
it’s time to consider a different path because we can no longer do things that
are unduly or that would not cause undue burden to you. And we don’t think
that we can actually help you as a person your body, your physiology in an
effective way that meets your goals. So, we should maybe start thinking
about stopping this particular intervention.” I always like to remind
people we never withdraw care. You’ll hear physicians and nurses and
yourselves maybe say this all the time, “we’re withdrawing care”. That’s not
the case. We will always provide care. We’re just withdrawing particular
interventions with the goal and with appropriate palliative care support so
that the person doesn’t suffer unduly with the goal that it is now time to, as
I had said earlier, acquiesce to what’s happening to my body
physiologically. So, it is now time for my body to be allowed to die and not to
have this medical intervention, that was an interruption of the process of
natural death, used any longer in service of my continued life, which was a
laudable goal and the correct goal for the patient and for the team because
they agreed to it before. So this, what I’d say a legitimate and carefully decided
withdrawal; so it’s not up to a physician or a team to say “we’re gonna just stop
this”. It’s not up to a patient to say automatically “we’re just going to stop
this”. It’s a conversation, and that’s a really important part of medical care
now that’s very distinct legally and morally
from the act of assisted death, which we call Medical Assistance in Dying
in Canada. Stephen Jenkinson wrote a terrific book called, “Die wise”. He was part of what he calls “the death trade. The palliative care world
for many years” as a pastoral guide and an emotional guide for many.
He’s quite critical of what he called “the death trade and palliative care”. But
it’s a really important book. He tries to explore what it is about our society
that’s so worried about death and so death-defying and afraid to have the
conversation about death. And he thinks because of that fear of ours to have the
conversations we’re reduced to two simple options.
They’re not simple in practice, but they’re simple thinking-wise. One, that we
have mastery over death. We control it. And the second, that we’re a victim to
death. And I would say that neither of those, and I think he might be arguing
the same thing. I’m not sure, but I would say that neither captures what I guess I’d
describe as the art of this stage of life or the responsibility to continue
to experience and grow through this difficult stage of life as well. So
because again, we’ve reduced the idea of dying to be either mastery over it. So
I want to be able to declare the time and the nature and the way that I will die
as if we have that ability always to do it. Or that I’m a victim to it. If I’m not
allowed to do that then I’m just a suffering victim to this experience of
death. We’ve lost the importance of this in
time of approach before death both for ourselves as patients and for those
around us who love us. So let’s talk a little bit more about the new law, and
I’m not going to go into details about what the law says and doesn’t say
because you’re probably well versed in that and it’s certainly available
everywhere to read. I wanted to clarify that the court and the law did not grant
a right to die, and you often see that headline in the newspapers. People have
always had the right to die. It’s a new notion of a person being declared by
our society to be legally allowed to create the conditions or to do the act
that will cause another person to become dead unnaturally. There is still a legal
prohibition against counselling for, aiding, and abetting suicide in Canada. So
the court and our new law only says for a certain designated kind of person that
the law has defined and a certain kind of health care provider who can
administer a death inducing substance, the law has changed. But outside of the
bounds of that particular kind of person and that particular kind of clinician,
there is still a criminal sanction against counselling for suicide or
aiding and abetting suicide. So it’s important to remember, and it’s really
important for you as pastoral volunteers because there are some considerations
for how you can have conversations or not. I’ll just revert now to a little bit
of information about future considerations for the law because the
whole story has not been completed yet, and there will be lots of dramatic
argument and debate within our culture and society about a number of things in
the next couple of years. There’s a lot of legal debate and moral
and ethical debate on this notion of reasonably foreseeable death, which is
one of the criteria in our law. There’s some current court cases going on right
now about that. People are asking and the government’s asking should mature miners
have access to this and studies underway about that. People are asking what impact
might mental health conditions have on the eligibility for a certain person to
have access to assisted death. Should mental health conditions have some
special considerations or not? Currently, the law says particular things, and there’s
debate right now about what the law is saying about that. And thirdly, can people
declare their wish in an advanced request. So lots of people are really
worried in our society about things like dementing illnesses. And they say, “I would
like to be able to declare now while I have my faculties about me how I want to
be treated if at some certain time in the future I’m no longer able to declare
my wishes, and write that down, and then have somebody be a proxy decision-maker
for me. And that’s a very common request. So lots of study going on about the
challenges around that legal, and moral challenges around that, and the practical
challenges as well as how that may or may not benefit some people. We’re asking
questions about are there special considerations for organ and tissue
transplants both for the donor and the recipient surrounding medical assistants and dying, and also are there special
considerations for incarcerated persons. What are those special considerations
addressing the unique vulnerability of somebody who’s in an incarcerated
environment? All those are things that will be discussed and debated and are
currently being in many, many venues throughout the country. So, I wanted to
move on now to talk a little bit about Alberta’s response specifically. We’re
continuing, first of all, it’s important to say to address the need for increased
availability of palliative care in all setting. So lots of people have said, “Make sure that you have good access to palliative care for people before you’re
engaging in the conversations or a program around assisted death.” Both things, you know, we’re hoping that palliative care will
be advantaged in really new and important ways throughout the country. We have some excellent programs in Alberta already, and there’s lots more that can
be done and needs to be don. Beyond that, however, what we’ve tried to do is
recognize that people come at this thought or this question in their own minds
in very different ways. Some people will come to us and say, “You know, I’ve been
thinking about this for a long time”. They have a resolute desire. Now that the law
is in place, they say, “I know I want this”. And others come and say, “I really don’t
know what’s right for me, but I need to explore it with you,” and they might ask
you that as a pastoral volunteer. They certainly ask me that as a physician. And
you can feel this genuine desire to try to understand better what is the right
thing for that individual person to choose. Then there’s other ways
that people will come at this as well. Some will come out of it out of real fear or
a sense that they need to keep very private about this, and their family will
try to convince them otherwise, “so please don’t tell my family member, but I want
to engage you and ask you about it”. Some will say, “I just want to make sure that
I’m eligible so please provide the eligibility assessment so that I have, in
my back pocket, this opportunity to access assisted death even though I
don’t think I’m gonna take that option.” But they’re worried about what their
future suffering experience may be like, and they want to make sure they’ve kind
of bounded their sense of future suffering. So, I’m not saying good or
bad about any of these choices and the way people are coming at this. I’m just
offering sort of our perspective from our experience of how people might come
to the start of a conversation. So if somebody expresses a desire or wish to
die out of a sense of suffering whether it’s fear or physical suffering or
emotional suffering or just to desire not to be alive any longer, we try to
address what the motivations are for that person; why they’ve come to that
particular decision in a non-judgmental way as well as we can in the health
environment. So recognizing those stages of decision-making helps us to do
some really important programmatic things in the province so that we can
have and you can have conversations if it’s the right thing to do for your
particular patient, the person that you’re helping as they journey towards
death. We also allow, through this response, for people to adhere to their
moral commitments. And that’s a very important societal conversation around
faith-based and non-faith-based organizations who won’t allow assisted death to occur on the grounds of their
particular facilities as well as the people who work within those
environments. Alberta’s response, I think, importantly
has been also to provide what we call a “Care Coordination Service”, and that
small team of people doesn’t provide assisted death, but they coordinate the
eligibility assessments that are part of the legal compliance. They coordinate the
actual assessments for particular vulnerabilities. So they’re trained to
really think about and look for situations where a person might be being
coerced, or because of their inability to access, say, mental health care, or
palliative care, or chronic disease management care, they’re saying, “I don’t
have any other options but to relieve my suffering in this way”. They coordinate
the clinicians and the supplies for provision of assisted death if that’s
the way that the patient has decided. And if they’re eligible, they make sure that
there’s a mechanism for transferring location of the patient when that’s
necessary, and those people are accessed either via website or by calling
Health Link 811, which is a provincially available number that almost all
people know about. I think it’s accessed for all health services about 2 million
times in the province of Alberta in a year. So people really know about it, and
it’s a way that the the province has decided this will help there to be
equitable access so that people who might live in a more distant place where
there aren’t providers who are willing to provide assistive death could have
access to the conversations, the eligibility assessments, etc. So all those,
again I’m trying to speak as neutrally as I can, those are the mechanisms by
which our society in Alberta has decided people can be in compliance with the law,
both the providers and patients. They also work on reporting mechanisms, then
the evaluation of the experience as we go through this phase of the program. So
I wanted to address, then pastoral volunteers specifically. As part of a
healthcare team, you’re working with a patient who’s exploring this option
potentially, and many of your patients will trust you enough to ask you about
this option. It’s really important you remember that you have very limited
legal protections, and the extent of that protection is not always certain. It’s
very nuanced depending on your participation with the team and what the
patient’s asking of you. So it’s important to remember that as pastoral
volunteers, you do not have legal protection if your conversations with
the patient would ever be construed as counseling a person for
this form of suicide or aiding them or abetting them in any way. So, it’s not
your role, and it’s not your legal role, forgetting about the moral role right
now, to be giving access, providing access to the information for the patient. So
what do you do? How might you respond? Your first response should really be one
of openness and compassion to the suffering that the person, I think, is
experiencing and expressing through this request for information of you. Also, non-
judgment. So, when I’m often speaking with people, we sort of go through some
of the the actual language you might want to say if somebody asks you this
question because it comes at you in surprise. When I’m talking to medical
students and physicians and nurses, I sort of relay these common scenarios
that will suddenly hit you in the face as the medical provider, and you need to
be prepared for that because a patient, when at the moment that they bare their
soul to you and bring you into this very intimate circle of uncertainty and
request and desire, need to know that you will respond in a really human, loving
way to them. So, if your first response is shock or hold back or put up a barrier
or to stumble through the words, then they might interpret that as you’re not
a person that they can access for guidance about themselves as a person.
And so, we always try to tell health care providers that having a response
prepared and practiced, and I say that medical practitioners develop your
response. Practice it in the mirror practice, practice it with colleagues so that the first words out of your mouth, your body language, your eye contact is one of
openness and acceptance rather than one of judgment and holding back. And then
you support, what I call, a therapeutic conversation. It can be anti-therapeutic,
or it can be therapeutic, and it needs to be one of non-judgment regardless or
irregardless of your particular moral stance on this issue. So, the next action
should be for you to suggest that the person talk with their physician. It is
not your role to direct them on to the resources that there might be or to
guide them or to make a call for them or anything like that. So, the best person to
address their specific questions is their physician. It might be a nurse
practitioner or another one of their nursing colleagues. And as a Catholic
pastoral volunteer, I think it’s very valid and important, depending on how you
know this person and their own faith, that you suggest that a conversation
with the person’s priest or spiritual guide would be really valuable. So that,
again, recognizes that a person is not a series of cells and organs. The
personhood reflects their spirituality and their bigger being as a created
being. And so addressing and recognizing that there is a spiritual component to
this request and to this person into their life is really important.
I wanted to turn really briefly to this idea of conscience protection, and you
heard some lovely words from Father Cristino and from Bishop
McGrattan about what conscience is, and I’m not going to go into any detail
around that, but in the sort of secular world, I talk about this a fair
amount. There’s this concept of objection for reasons of conscience is important
in our society, and we had that, you know, the first concepts of that we got from
conscientious objection around going to war. When we talk about a person, though
and their own behavior and their attitudes around conscience, I think we
need to change the language. So I don’t want those who are opposed to and will
not participate in assisted death to be called conscientious objectors. That
labels them in some way as maybe a bit offside or maybe a bit bad, and it might
be that…we’ll just take palliative care clinicians for an example. The
majority of that group in Canada feels they would not want to participate in
assisted death. And so, I’m part of that community, and I’m also both personally
as from a human point of view, as a professional from a physician point of
view, and from my moral and theological view, I’m opposed to assisted death. So I
will not participate. That is not because I’m a conscientious objector. It’s
because I’m adhering to my moral commitments as a human being, as a
physician, and as a companion of somebody who’s approaching death. So it’s a bit of language that I want to try to change the conversation a bit in our
society around that idea. So I wanted to address then what this notion is of the
pastoral mission of Medicine. It really is informed, as I think Father
Cristino has reminded us recently of the intersection between virtue and ethics
and what we do in our professions professing to do for another even at
risk of self-harm or not worrying about our own particular needs around
the caregiving. That’s what we’re actually doing when we’re professing. I
will commit to my patients in as deep a way as is humanly possible, and I’m
professing so that they can trust that I will put their needs above my own, and
that I will be there for them. And that’s really what we profess. And when that’s
supported by good virtue and appropriate moral and theologic ethics,
then I think we come to this pastoral mission of Medicine where really we’re
here as professionals to make a difference for a person who is suffering
and who is in need of that human and technological ability that we can
provide them. So the key context for end of life caring really, in my view, is the
provision of expert, dignified, human, compassionate, and loving care, and that
is accomplished by everyone who surrounds a person who’s experiencing an
end-of-life journey. It’s just as important the work you do in providing
through your mission the pastoral support and accompaniment as is the work
that I do assessing and providing a medication for someone to relieve their
particular suffering. It’s really a profound human endeavor, this notion of
health care provision, and we have to remember that. What do we bring as accompaniers? Well, there’s this interdependence as the quote from Jean
Vanier talked about. We’re giving and receiving in this idea when we accompany
another person. We give the gift of ourselves. We give our skills. We give our
biases and beliefs, and we need to acknowledge that that we have those
biases and beliefs. We give our own needs. We give the gift of our own past
experiences that can form the good work that you do. We give our own
emotions and our suffering and our hopes as being persons with this
other. And we give a commitment to our duties to this person who we’re caring
for and who’s put their trust in us to guide and help them. So a few final
thoughts. The gift of ourselves, both personal and professional, in journeying
with a fellow person who’s dying for some people is a way of following
Christ’s teaching and his example – to care for those who need that care. For
others, it might reflect their own religious tradition, and that’s fine, and
it also might sort of reflect a sense of pastoral duty or gift that they’re
bringing as human beings. And for others, it can be together with those things
I’ve just mentioned or solely a gift of human compassion that’s not part of a
religious tradition, and it might be a manifestation, simply a professional duty.
One is not better or worse than the other, but together, those things can be
really powerful. But we always need to remember about this idea of humility. So
a picture of Mother Teresa carrying this child, we recognize our place as mere
intervenors in the person’s life journey. And there’s fancy medicines to be given
that it can intervene, and there’s loving, tender care as you see in the picture
that can be as powerful and important. Now, you know, my strong sense is that all
of them together make the difference. One is not better or worse than the other.
There’s times that you need this and there’s time that you need a really
fancy technology, and they’re all valid and important, but we need to have that
sense of humility. And I think having lost that is where we’ve come to in this
sort of autonomous and scientifically driven Society that says we’ve got a
technique to actually override a person’s life, let’s use it, when it
wasn’t really part of the natural course of the person’s illness. So that’s again
this idea of the difference between when… and somebody had asked the
question, and I think Father Cristino gave a beautiful response in
the previous segment about that difference between providing a
medication at the end of life that may actually help somebody become dead
sooner when the intention wasn’t that; it’s very different. This this notion of
assisted death really is taking what’s now a noxious substance, so it’s a drug,
but it’s now a chemical that’s meant to not heal or improve somebody’s
physiology and the organ function. It’s now meant to completely override it
because we’re using such high doses that it actually stops the particular organs
that are necessary for continuation of life. So even though the person is on a
trajectory to death, they’re not dying from their
illness, and they’re not dying even from the drugs that normally would be beneficially helpful for their palliative symptoms. They’re dying from
really an overdose of a very strong set of drugs that will override
physiology. So that’s why some of us would call it an unnatural means.
I’m going to just provide you with a few resources now at the end. This website
here, the www.ahs.ca/MAID website has all the background
information and the the legal stuff and the resources for how people can have
conversations with their patients. There’s also a website there for the
Vulnerable Persons Standard (www.vps.npv.ca), which is really an attempt, as I said earlier, to
put some meat to the bones of this concept of vulnerability – how we can
actually be pushed to make sure that we’ve addressed this. There is a very
strong call for people in our society to say because an autonomous agent who has agency, they’ve got their mind about them, and they can decide for themselves
what’s right, declares that this is what they want, and if, you know, the laws say
that this person is eligible that that’s where the question needs to stop. But we
need to be very reflective, deeply reflective because of the importance of
this particular act and the finality of the act. Have we made sure that we’ve
addressed all notions of vulnerability this person might face, and if they had
had those things fixed, would they have not chosen assisted death? There’s a few
books that I referred to today that are worth addressing. Stephen Jenkinson’s
book. Jean Vanier’s book, I think is a beautiful reflection. Lawrence
Freeman’s as well that I read a quote from. And Sister Nuala Kenny, who many of you would know, has recently written a book and published it called,
“Rediscovering the Art of Dying”. It’s a very good and a short read about
the notion of Christ’s suffering and his passion and death and how that relates
to our own experience as as we approach death. I’m going to end there, and thank
you for your attention, and I’m happy to answer some questions. Yes? What can I say or do if a patient asked me about medical assistance and dying, but also at the
same time expresses fear that their family member should not learn about
this request? First of all, what might be the actual words
that you feel comfortable you would say if a person says to you? You’ve been
ministering to me now for the last few weeks as I’m journeying towards yet
say I’m in a hospice or I’m at home or in the hospital and suddenly today I say
to you, “You know what? I’m thinking about this medical assistance in dying,” what
might you say? Any thoughts? I think you’d want to chime what the
fears are or the motivations to have the conversation. You know, go to that direction. Is it a shortcoming in the palliative care or pain management? Is it,
you know, some other concern about end-of-life, the journey they’re about to take? And addressing some of their reasons why someone came to this is a really important part of the overall
assessment that the whole healthcare team does need to make. So a good point.
Any other thoughts? First words out of your mouth. I would be concerned to maybe venture into why a person doesn’t want the family to know. See what’s happening there. So again, a very important thing, the health care team. This is part of that notion of vulnerability. Is there something in the story of this patient that would make
that request happen? And we’re always guiding people…in Alberta at least,
the death certificate would say how the person actually was made to become
dead and the illnesses that led them to that as well. The family will end
up knowing about the medical assistance in dying. So I would want to explore
without judging the patient or anything else or coercing them in some other way,
I’d want to explore what is there about that need for privacy that’s really
important, and is there anything else that we might want to address during
this time to potentially heal a fractured relationship? What would the
experience of bereavement be like for that family member who wouldn’t have
known this was the mode of death and might be very uncomfortable about it, or
who may have wanted to be able to support the person in some way either
acknowledging this was okay for them or that it wasn’t okay for them? And how how
sort of that person is left to live the rest of their lives might be really
important to the person; they hadn’t thought about that issue. For many people
who make that request, it really is out of a sense of fear that their family
won’t understand or they’ll try to talk them into it or try to talk them out of
it. And so helping sort of heal that bit of relational challenge I think is part
of the job of palliative care. Now, the patient may not want that, and we need to
acknowledge that. But at least we have to explore it. So just let’s return a little bit to the the very first words out of your mouth. Somebody asks
you even not the question about privacy, but I’m thinking about medical
assistance in dying. What are the first… I want you to think about what are
the words, the actual words, not the approach that you take. What would be
the words you might use? How do you feel about your contemplating this act? Or
getting them in touch with their own feeling about it. Or,
articulating how do they feel about it. What’s the core feeling that’s present?
Sure. So you say, try to get in touch with how people might be feeling
about this and get them to describe more. And some people would say, “Well, what
brought you to this,” and that, you know, might be a good way to do it as well. But
really trying to understand what it is about the person and their desire. I always
like to have people think about the idea of first saying “thank you for trusting
me enough to ask me about this”. Or to say something like, “I understand
this must be a really difficult conversation or a thought for you. Can
you tell me more”. And both of those phrases, they come at it a different way,
but they express an openness. They tell the person who’s asking you about this,
who’s now declared some worry or concern or intention to you maybe; we don’t know
what it is yet, that you are open to some sort of a conversation, and that you’re
not judging them, and that you’re there in a sort of a therapeutic accompanying
manner that doesn’t express your moral stance for or against assisted death. And
that’s a really important thing especially as Catholic pastoral
volunteers to be careful about. You also can’t get into the discussion too deeply
as pastoral volunteers about, you know, sort of the advising because again,
you’re not in a place to be actually giving that particular guidance or
advice from a legal point of view and maybe not from a moral point of view
either. But just, if you’re the first person they’ve turned to you, just what
I would call a human Christ-like response would be one of enveloping in
trusted concern, and that’s okay. And so figure out some phrase that you feel
comfortable with that feels genuine to you so that the patient feels that
you’re open to supporting them not necessarily in this route or choice,
because that’s not your role, but as human beings asking
for you as another human being to reflect on this concern or request or
worry that they have. I think that’s really important to remember. It can be,
again as I say, an anti-therapeutic moment where they feel pushed away or
you’re uncertain or you’re fearful, or it can be a very therapeutic moment where
they know they can trust you with their deep inner feelings. And that goes back
to the sense of Jean Vanier’s accompaniment that you’re walking with a
person in your own uncertainty, in your own fear, in your own sense of what’s
right and wrong. They also have those, and you’re walking together with them. And there’s a whole team around you as well to help with the expertise
around those things in all the dimensions: the physical and the legal
and the moral and the ethical, the spiritual, all those dimensions, people are there to help. I just have a question. For medical doctors that object to being part of this euthanasia, if they have a patient that comes to them wanting a referral to somebody else because they’re not going to do it, how does the Alberta Health treat that? Are they obliged to refer them? Thanks for the question. So the question was about a physician; I mean, it would extend to a nurse practitioner as well or other health care providers, who does not
believe that this is the right thing to do from a moral point of view and to
participate, are they obliged to actually refer the patient? It’s a really vexing
question, and some clinicians in the country have said that a referral or any
other action that helps in any way to facilitate a patient obtaining medical
assistance in dying is the same thing as doing it yourself. So it is they are
as morally culpable, and that’s a stance that some take. Probably not a
huge number of people take that stance, but it all hinges on your definition of
what a referral is. And so, there’s been some really challenging conversations
legally and with regulators etc. in the country about what the notion of a
referral is and your involvement if you are referring someone. So for some, this
notion of the Care Coordination Service provides a bridge between the clinician
who says “I will not facilitate your access” and but not helping
the patient to carry on with their end-of-life care and concerns. So if the
patient is left to their own devices because I as somebody who is adhering to
my moral commands will not give the patient any inclusive information about
the options that are available or how to access that without me referring them
directly, then many people would say that might be actually falling below the
standard of care and professional duty that you have. So I can’t leave a patient
to their own devices. In Alberta, what we’ve done is say the patient can access
the 811 number and get access to the Care Coordination Service who can
then work through all the issues. And that removes the responsibility of a
physician to directly refer to somebody. Now, some people will say, “I will refer to
a clinician or a team who can from a range of choices deliberate on all the
end-of-life care options that there are, and if it turns out that the decision by
everybody is that medical assistance in dying is the right way to go, they can
provide that”. But it’s not a slam-dunk that they’re going to provide that
particular option. That, for many is very different than referring directly to a
person who as their main, and almost only option, will presume that assisted
death, medical assistance in dying is the route that’s going to be taken. So
there’s a distance between I guess the directness of referring or making
available access to various kinds of programs. So we think that’s helped, and in
our conversations with Covenant Health and with the bishops of the province and
Western Canada there is sort of a an agreement I think that that is the best
we can do to make it acceptable enough for a person to continue to stay
with their patients. So important for us when we’re teaching medical students and
other clinicians to say if a patient makes a decision, it might not be what
you think is right or might not be within the sort of the moral stance
that you think is appropriate, but we don’t want you to abandon your patient.
We want that trusted relationship to be able to be maintained. So you need to
hopefully through this mechanism of the Care Coordination Service who is distant
from you and distracted sort of from your direct line of sight or referral of
the patient for assisted death that you can still support the patient in the
trusted relationship that you had and can accompany and walk with the patient
for all their other needs because as they’re contemplating this option and
going through the process that the law requires, they still have important
physical and mental and emotional spiritual and relationship needs that we
can provide. So we want to make sure that we don’t cause an administrative sort of set of rules to force the clinician to abandon
their patient or absent themselves from that very important trusted relationship
at this key part of their life. Thanks very much for your attention and best of
wishes in your good care. Take care!

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