by Erik Nielsen
It’s 7:00 in the morning, and I am arriving at the hospice unit to begin another twelve-hour nursing shift. As I come in, I overhear one of the night nurses talking with another. “Hopefully things will change around here,” she says. “There will be three MAiDs happening before the end of the month.” When I first heard that comment, I was taken aback.
Is this what MAiD is doing to us? Is this how nurses are beginning to think about the deaths of the people entrusted to our care? But almost immediately, another thought comes: I understand exactly what she means. The unit is heavy. We have high-needs patients requiring significant amounts of physical and emotional care. The nurse who made the comment had just completed an exhausting twelve-hour night shift. She is not uncaring. In fact, I know her to be a compassionate and loving nurse. She has spent the night caring for people at their most vulnerable. She is tired.
That is partly why the comment stays with me. It would be easier if I could dismiss it as the words of someone callous. I cannot. Instead, it makes me wonder what happens to all of us when medically assisted death becomes part of the ordinary environment in which we work.
The reality is that MAiD has altered hospice care in Canada. It has introduced another way of thinking about suffering, dependence, dying, and what constitutes a good death. Inevitably, it also affects those of us who provide care. My own nursing mindset cannot help but be shaped by what is happening around me. That frightens me.
At present, nurses in our health authority can decline, on moral grounds, to participate in preparations for a medically assisted death. I do not have to review the drugs being administered. I do not have to flush the IV line through which they will be given. I do not have to be present in the room. One nurse I know has permission to leave the building when a MAiD procedure occurs and return afterward. My own practice has been to care for the patient and family right up until the time of MAiD. After the death, I will care for the grieving family. Whatever disagreement I may have with the choice, these are still people entrusted to my care.
Yet I sometimes wonder how long even these distinctions will remain possible. Will conscientious objection continue to be protected? Or will participation eventually be regarded simply as another expected part of nursing? These questions are no longer theoretical to me. They have faces and voices.
We as nurses hear things like this: “If I can no longer get to the washroom by myself with my walker, I’m pulling the plug. I don’t want my wife and kids to see me like this.” Another patient, distressed because a friend had failed to visit, suddenly said, “My friend didn’t come today. Get me the MAiD doctor. I want to do it today.” The doctor actually came to the unit. The patient ultimately changed his mind. Another patient said simply, “I feel ugly.” A week later, I returned to work and was surprised to learn that the patient had died. He had not appeared close to death and was not suffering significant physical pain. He had chosen MAiD.
Then there are the religious conversations. “I spoke to Jesus, and He said it was okay to choose MAiD.” Or the woman standing beside her dying sister: “This is my sister who is dying. I don’t want to end up like this. I will be choosing MAiD soon, as I have recently been diagnosed with stage-four cancer. I told my pastor about my choice, and he told me I am courageous.” Her sister lay peacefully in the hospice bed, showing no outward signs of pain.
I do not recount these stories because I think every person choosing MAiD has the same motivation. They do not. Nor do I pretend that suffering at the end of life is always easily controlled. It is not. Hospice nurses know better than most that dying can be difficult. What stays with me, however, is how often the fear underneath these conversations seems to involve something more than physical pain.
I don’t want my family to see me like this.
I don’t want to be dependent.
I don’t want to be ugly.
I don’t want to become a burden.
Those fears make sense to me. I actually share some of them.
I sometimes wonder what I will choose when my own death approaches. Will I choose a natural death, or will I choose MAiD? What if I require months or years of care? Will I begin to calculate the money being spent on keeping me comfortable? Will I wonder whether it is selfish to use taxpayers’ money simply so that other people can care for me until I die? And if euthanasia becomes increasingly normal in our society, will the expectations around me change? Will nurses care for me differently if I choose to die naturally? Will a doctor or nurse suggest MAiD—not maliciously, but because it has become one of the obvious solutions available? (That scenario happened to an Ontario hospital patient named Roger Foley, who caught on tape a doctor suggesting MAiD. It made national headlines.) Will my family feel obliged to reassure me that I am not a burden while privately becoming exhausted by my care? Will I begin to think that the loving thing to do is to “get it over with” so everyone else can return to normal life? I do not know. But I know that these questions reveal something important about how we understand ourselves.
In nursing, we spend significant amounts of energy helping people retain independence. That is good. Independence matters. Being able to wash yourself, feed yourself, walk to the bathroom, choose your clothes, and decide how you spend your day are genuine goods. But independence is not the same thing as human dignity. I have to remind myself that I entered this world completely dependent upon other people. I was born in weakness, and I will likely die in weakness. I was born powerless, and I will leave this world powerless. Other people fed me, washed me, carried me, cleaned me, and kept me alive. Dependence was not an indignity then. Why must it become one at the end?
When patients become embarrassed because I need to help with their personal care, I sometimes tell them, “Someday someone will be wiping my butt too. I’m just temporarily able-bodied.” Usually they laugh. The laughter matters. For a moment, the relationship changes. I am no longer the strong nurse helping the weak patient. We are simply two human beings at different points along the same road. Today I can stand beside the bed. Tomorrow I may be the person lying in it. The reality is that I am temporarily able-bodied. So are most of us. Perhaps one of the dangers of our culture is that we have mistaken a temporary condition—strength, health, independence—for what a human being is supposed to be. Then, when those things disappear, we feel that our dignity is disappearing with them. Hospice has taught me otherwise.
There can be dignity in allowing someone to wash you.
There can be dignity in accepting help to use the bathroom.
There can be dignity in needing someone to reposition you in bed.
There can even be dignity in allowing the people who love you to rearrange their lives for a time because you need them.
This is difficult because receiving care requires something from us. It requires us to surrender control. It requires us to admit that we need other people. Sometimes it even requires us to receive more than we can ever repay. Yet perhaps that is not only a burden. Perhaps it is also a gift. I am deeply thankful that members of my own family who have died allowed me to accompany them through natural deaths. They allowed me to care for them. They gave me the privilege of being present when they were weak and dependent. They allowed me to love them when there was nothing they could give me in return. I mourned with them. I cared for them. At times, strangely enough, I rejoiced with them. Those experiences cost me something. Love usually does. But I would not give them back.
And this is what I hope I can remember when my own time comes. I hope I will not measure my worth by how little trouble I cause. I hope I will not mistake dependence for indignity. I hope I will remember that needing care does not make me less human. I trust that I will choose a natural death. And perhaps, in doing so, my final days will contain one last gift I can give to the people who love me: the opportunity to accompany me, to care for me, to grieve with me, and to discover—as I have discovered at the bedsides of others—that sometimes being allowed to love someone in their weakness is itself a privilege.
One more question that I think we all have to ask ourselves is: “Which groups of devalued, dehumanized people are most at risk of being euthanized”? I believe it is people with mental handicaps. (Let us not forget the very real Eugenics movement that took place in the early 20th century.)
The irony of it all is that people with mental handicaps are the ones who have best revealed to me what it means to be truly human. Really! It wasn’t the so-called normal people, but people with mental handicaps, who challenged me to the deeper question of what it means just to “be.” To just be human, to just be little ol’ Erik, with all my strengths and weaknesses, pain and brokenness, love and hate, joy and sorrow. It was while I was living and working in L’Arche communities for six years (worldwide communities for people with mental handicaps focused on Christ’s Beatitudes) that the great work of healing in my life began. People with disabilities have a crack in their shell for the world to see, and they couldn’t care less if you were the Pope —all they ask is, “Can you just love me for myself?” And it took a long time for me to do just that, because I had seldom been loved for just “being me.” Their mysterious yet powerful gifts were inviting me to get real with myself and to be vulnerable and to accept my broken self and not to be afraid to be rejected even though it is painful. They were not rejecting me. Unfortunately, I had become an expert in rejecting myself, listening to all the lies the world tells me about who I should be.
So, when my death approaches and I may be in pain, I trust I will not choose MAiD, but remember all my friends with disabilities who taught me it is okay to be weak and vulnerable. That it is okay for friends and family to be inconvenienced at times with their love for me, and for nurses to have to sometimes spend more time caring for me—and even for society at large to spend money on me to die well and with full dignity maintained right to the end.
Erik Nielsen began his professional life as a credit manager in Vancouver before a change in direction led him to live and work in a L’Arche community for six years. He continued working with people with intellectual disabilities before becoming a licensed practical nurse, spending seventeen years in emergency care. He now works in two hospices in British Columbia. Erik and his wife, Marriane, have two sons. He is also an active member of the Sons of the Holy Cross, a contemplative Christian order in British Columbia’s Lower Mainland.