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 founded by Jean Vanier. I learned from experience what I later read of Jean Vanier’s spirituality, 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 consider Jean Vanier a living saint and I look back on that pull I felt as a 12 year old as a spiritual one.

Back into 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. Spend some time where I have in the company of a severely disable 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 caring for people who have their faces or bodies changed by cancer in the most shocking ways, demonstrating 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 who’s 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 and 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 more 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 body, 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 said in the reading this morning, nothing can snatch us from that place.

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 and 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 simple 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. 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.