My dear friend, Cathy, has done it again -- on Sunday she presented an amazing sermon at her United Church. And when she read it to me over the phone last Friday, all I could say was, "wow, that's just excellent, and it needs to be heard!" Her understanding -- that allowing death and dying to unfold naturally helps human beings learn about true dignity and grace -- needs to be shared with as many people as possible, simply because we don't hear this idea very often in media stories about the issue.
Cathy agreed to let me post this here, and I would encourage my readers to share it freely. Our culture is so afraid of death and dying, but in Cathy's experience, they are Holy Ground. Perhaps her sermon can help more people to see it that way...
Reflection
on Physician Assisted Dying
April 17,
2016
Cathy
Coulter, RN, BScN, Parish Nurse
Bill C-14 was tabled in the federal
parliament on Thursday for medical assistance in dying. Physician Assisted
Dying, Physician Assisted Suicide, Euthanasia… However we name it, the concept
is that someone can end their life at the time of their choosing with a lethal
dose of medication ordered, and in some cases administered, by someone legally
licenced to do so.
So today I’m going to give my thoughts
on Physician Assisted Dying. This is an issue fraught with strong emotions and
I have a lot to say on it. But first I’d like to tell you
a bit about my background and the paths I’ve travelled which inform my
opinions.
I’ll tell you right off the bat that I
am not in favour of physician assisted dying. I have seen it marching toward
becoming law these last many years, and that has saddened me, at times sickened
me, and challenged me. But in fact, I have moved from my more extreme “no”
position, to a “well, okay, maybe” position.
As a teenager I started working with
mentally disabled adults and children at Camp Easter Seal in Saskatchewan. This
followed a strong desire I had as a child that I can’t explain but just had.
It’s what led me into nursing but, not liking hospitals, I continued to work
with the disabled, including with L’Arche, a global organization for people with and without disabilities. I learned from experience that the vulnerable and the disabled lead us to God and our own
humanity and to think we are helping them is actually backwards, as we, the
helpers, have the most to learn. I
look back on that pull I felt as a 12 year old as a spiritual one.
In nursing, I worked in Long Term Care
– nursing homes – with the aged, people with chronic illness such as Multiple
Sclerosis, and people with dementia. I eventually moved into Palliative Care
and have worked in Palliative Care for over ten years. I love my palliative
care work. It’s an astonishing body of knowledge that relieves so much suffering
and it is a rich mine of spiritual wealth which informs another passion of
mine, spiritual care. My role as Parish Nurse is an attempt to integrate
spiritual care into health care and that is an area where there is so much to
learn, as much from ancient sources as from modern ones.
There are several things that bother
me in reading arguments for Physician Assisted Dying. One is that people often
mention excruciating pain and other distressing symptoms. These things can be
treated and there is nothing more satisfying than to see the relief provided
with the right tools and knowledge. I’ve seen it hundreds of times. But this is
where I think Palliative Care has failed. It needs to be accessible, health
care professionals need to use it, and the public needs to be aware of the help
that is available.
For me, there is no excuse for anyone
to endure distressing pain or other physical symptoms. But pain and suffering
are not simply physical. Emotional, psychological and spiritual pain are all
wrapped up in physical pain and suffering. And one of the greatest areas of
pain and suffering is over our loss of independence and identity.
We, in our
culture, are so invested in our independence that many people think they would
rather be dead than to lose it. Dignity has come to mean the ability to be
independent and in control of your body, but I see dignity differently. Perhaps
this is a surprise to you that I should even question this. But spend some time
where I have in the company of a severely disabled person, whose body is
contorted, who cannot walk or talk, in whose presence you are taught what it
truly means to be human, and I’ll show you dignity. Or try caring for people who
have their faces or bodies changed by cancer in the most shocking ways who demonstrate
the most mind-blowing courage and peace. That is dignity.
When a sorrowing
family witnesses, in the last hours and days before death, their mother, who has
slipped into that mysterious place of unresponsiveness or coma, the family cry,
“This is not dignified!” What I see is a woman whose face seems peaceful,
surrounded by love and care, and experiencing who knows what internal processes
in her spirit, perhaps something beautiful and healing and amazing at the
threshold of death. I think I could fall on my knees in the presence of such
dignity and grace, but because Mother isn’t able to be in control and is
completely vulnerable, those who love her are undone and call it undignified.
Whose suffering is it?
I get so mad when people say things
like they would rather be dead than incontinent, or like one man I cared for,
unable to bear the thought that his illness might cause him to drool. What does that say about those who do drool,
like my friend Ron, with cerebral palsy, who drools constantly and can’t speak
but communicates more jokes and prayer and taught me so much about slowing down
and noticing what is important?
Our sense
of normal and value is getting so limited that soon only movie-star-looks and
bodies, between the ages of twenty and thirty-five (unless you’re a man in which
case it’s older), will be considered worthwhile, and we might as well be dead
otherwise. I’m being facetious – but maybe not. I have fallen in love with so
many people whose bodies don’t look or work in ways that we think is normal.
How do they feel in this conversation of what is dignified and acceptable?
There is a reason organizations for
the disabled are speaking out against Physician Assisted Dying laws. They have
fought so long and so hard to have our culture recognize the value in every
life. A vibrant young man in a wheelchair who needed some surgery faced a
medical profession who wondered why he would bother, in an attitude that all
but said, “Why would you want to live if you couldn’t walk?”
Of course, experiencing the loss of
bodily control and independence is tough. It’s horrible. But the process of
going through such losses is absolutely part of our human condition and
necessary, I argue, to become fully human. Michael J. Fox, who lives with
Parkinson’s, knows this, which is why he titled his memoir Lucky Man. It was the disease and its losses that gave him a life
and a depth of personhood that he would never trade.
More and more we are bowing down and
worshiping the concept of “being independent”. This is a modern phenomenon,
being independent. We think it’s heroic and dignified and necessary to control
our own lives. But the universe, nature and Jesus teach us the opposite. That
we are interdependent, or to go further, absolutely dependent
on the forces and mysteries that give us life and the abundance of life.
To use
Christian language, it is God that sustains us. Losing bodily function so that
we can no longer be busy ‘doing’ is a crisis to our identity, for sure, but it teaches
us that we are more than this superficial identity of what we do. We are the
very breath and body of God in the world, and the grace that flows through us
is not something we accomplish but what we are.
When we
learn this, we don’t need anything else. There is the peace and joy that we
long for which gives to everyone around us. This is the place we stand on in
faith. This is the place we fall into, when we feel like we have lost
everything. This is where we are held, and like Jesus says in this morning’s reading,
nothing can snatch us from that place (John 10:28b).
Independence is not freedom, it is
limitation. It is a contracted, isolated place that cuts us off from accessing
all of the love and power and grace of the universe. I have seen people
fighting, fighting, fighting what is happening beyond their control until that
moment – and it can happen in the blink of an eye – when there is a surrender, where
the dying person stops struggling and goes with the flow, when the person is
given the grace to allow themselves to be carried by forces that we, the
undying, can only glimpse and guess at. In that moment, the room, which had
been filled with tension and pain, is flooded with peace and love. To be a
witness to that moment is to stand on holy ground. I don’t know how else to
explain it. But perhaps, if you have been attentive to someone’s dying, you
have experienced what I’m talking about.
We want so desperately to control
everything. What an illusion. And now we want to control our dying. What a
mistake. The people and groups so passionate about having very broad assisted
dying laws use terms like dignity and grace a lot. I don’t want their agenda to
define dignity and grace for me. I gave my grandmother and my mother bed baths
in their dying days three months apart. There was no indignity in their
vulnerability. Only tender intimacy and as much love and gratitude as I could
possibly feel. Giving either one of them an injection and suspending a process
that our bodies and spirits know how to do naturally, in our own wisdom and
rhythm and timing – that would feel undignified to me. Where indignity lies is
in the lack of care and the pain of social isolation, not in what a body can no
longer do.
An area of contention is that people
with dementia will not be able to access assisted dying, even if in their
previously competent state they say they want it when their condition reaches a
certain stage, for example when they no longer recognize their family. The
reason that this will not be allowed is because the person with dementia will
not have the capability to consent at that time in the future and will be in a
vulnerable position. Although I feel like I’m swimming against the tide of
public opinion, I agree with that. I do not want to belittle the emotional pain
of dementia for the one experiencing the mental losses or their loved ones, but
if we step back from the emotional pain, we see a loss of mental function comparable
to the loss of physical function that is more painful because we associate our
mental faculties with our very identity above all else.
But my
argument that we are more than our ability to ‘do’ applies here too, that we
are more than our ability to use our minds. A person with dementia has just as
much value and life and spirit of God as that person had before they got
dementia. We are challenged to see that and often it is easier for a
professional care staff than a family member who only sees what is no longer
there. There is a grace and, yes, dignity, and much to learn from being in the
presence of someone with dementia. There are surprises and laughs and amazing
stories. And there is grief and anger and doubt and challenge. But I believe
the spiritual life is just as active in a person with dementia right through
until death. Who am I to cut that life short?
Saying I’m against assisted dying does
not mean I’m for prolonging life as long as possible. We swing so far one way,
treating everyone with a view for them to live forever often to the point where
life becomes
unbearable at which point we swing all the way around and want instant
death. But I’ve also reached a point of acceptance that unless we really learn
how to provide the care that people enduring debilitating conditions need,
including spiritual care, the weariness of enduring such conditions may become
unbearable. At that point, who am I to judge? Providing release in the form of
assisted dying may be the right thing to do. I have faith that God will be
carrying that person body and soul, just the same.
In preparing for this talk I watched a
documentary filmed in Belgium where they have very expansive assisted dying
laws, including for those experiencing mental anguish. The documentary was
about a 24-year-old woman who had just been granted the right to assisted dying
after a two year process.
This young
woman, intelligent, educated, well connected, loved, physically top notch… did
I mention she was only 24?... experienced a lot of mental anguish in simply being alive. She described remembering being 3 years old and thinking she
didn’t want to be here. She described how it felt like there was something
inside her that made living unbearable, like a monster living inside her. She’d
cut herself so many times because the exterior pain of the cuts distracted her
from the interior pain. She was given every treatment modern medicine could
think of with no relief. Her doctors agreed to assisted death. Her mother
agreed, sadly. Her best friends agreed, sadly. They all wanted to support this
woman they loved. The documentary covered the two weeks before her death when
she was preparing to say good-bye to the world.
Watching the
program, I understood in a new way that assisted dying was the only option for
someone suffering as she was. I understood how an open death with a chance to
be surrounded by loving good-byes was a better option than a lonely suicide
attempt which is why this young woman fought so long and hard for an assisted
death. I felt for this girl’s pain. I admired her loved ones for standing by
her even in the midst of their own sadness of saying good-bye. The doctors who
journeyed with her said they too would be sad. They reminded her that at any
point in the process, she could change her mind and no one would think less of
her.
The documentary did not show the
actual death but rather talked about how things happened. The designated doctor
arrived at the appointed time and place with the lethal injection. The young
woman said at that moment, “I’ve changed my mind.”
I was so surprised. She did not die.
The documentary continued with her saying that in the previous two weeks, she’d
felt okay. Not like everything was better, but okay enough that that day it was
possible to say no to dying.
Perhaps in preparing for death, the
love she experienced healed something inside. Perhaps finally having an option
of a way out was enough. And perhaps that will be the benefit of an assisted
dying law: to help people relax, knowing that there can be a way out of their
worst fears, to relax enough to allow the process to unfold, to allow life and spirit
to unfold.
The best any of us can do is journey
through life as faithfully as possible.
At the centre of all Jesus’ teaching
was the assurance that God loves us and can be trusted to bring about healing
and wholeness within the worst circumstances. This assurance enabled Jesus to
remain faithful to the path he had chosen even when it meant death on a cross.
Such a deep trust in God’s care is what underlies the healing power of
resurrection faith. [from The Whole
People of God, United Church commentary]
Though we
walk through the valley of the shadow of death, we will not fear, for you, God,
are with us.
Amen.
