Reflection by Rev. Diane Rollert, 24 September 2017
It was late April. Two years ago in the evening. I had every intention of getting home by 9:30 that night, but there I was in my office after a long meeting. There’s was a knock at the door. That night’s concierge popped her head in. “Your sister-in-law’s on the phone,” she said. It was really odd for any of us to have picked up the main church line at that hour. My mind couldn’t even register why one of my sisters-in-law would be calling.
I picked up the phone. It was my brother’s wife in California. My father was in the hospital. There was a large hemorrhage in his brain. They didn’t know if he would survive the night.
Within hours I’d booked a flight to LA. We’d grown up in Cleveland and Chicago, and my dad had briefly lived here in Montreal until Canadian immigration forced him to leave the country, and he moved to be close to my brother in LA. I left Montreal at 6 a.m. the next morning. While I was in the air, my brother was conferring with the doctors. My father was in a coma and was it likely that he was braindead. But they decided to keep him on life support because I was on my way.
When I arrived that afternoon, I held my father’s hand and I told him that I loved him. I told him it was OK to let go now. “We’re here, Dad. We won’t leave until you’ve gone.” He fingers fluttered and pressed against mine, as if he were responding to my words. Did I imagine this? Maybe. But the response of his hand changed over the course of the hours. It was my way of knowing if he was calm or stressed. His hand was flat, but when I held it, it would curl around mine. Sometimes it seemed as though he didn’t want to let it go. Was this a reflex? Muscle memory? If it was, then these are the things that serve us in our last hours.
I reminded myself again and again that it wouldn’t be long before I would never feel the warmth of his body again. It was a warmth I wanted to feel as long as I could, this final life force that I wanted to stay witness to.
There was no palliative care unit in this particular hospital. But they had recently instituted a new policy. Everyone, in every role in the hospital was trained in palliative care. The palliative care doctor and nurse came to visit us in my father’s room. They explained that we could request morphine injections whenever we felt my father was uncomfortable. “Don’t hesitate,” they said. “Our goal is to keep him as comfortable as possible.”
Death has its own time schedule. My father lived for another two days. During the last nightof his life, as I held his hand, I could feel his agitation. The charge nurse for the night shift came in. I told her that I thought my father needed more morphine. She took a quick glance at him. “He does not need morphine. He’s perfectly comfortable,” she said quite sternly. I tried to tell her that one of the other nurses had explained to me that a person in a coma can be in pain without showing overt signs. “I’m the charge nurse,” she snapped. “We are not doing active euthanasia here. Your father is comfortable. If he needed morphine, he’d be moaning or grimacing.”
I was shocked and bewildered. My father was in a coma. He couldn’t move his face at all. Why didn’t I have the courage to argue with her? She made me feel as if I was asking her to kill my father. I wanted to make sure that he was comfortable. But I gave in to the woman’s officiousness. There I was, experienced in palliative care, and I couldn’t advocate for my own loved one.
Hours later, I found another nurse who kindly and gently administered the morphine that my father needed. I explained what had happened with her colleague. In the morning the palliative care doctor and nurse, and the director of spiritual care, all came to personally apologize to me. The head of nursing also came to see me, telling me that the charge nurse had been totally out of line. He said that it was hospital policy to allow staff to opt out of a patient’s care if they felt uncomfortable administering palliative pain relief.
I’ve thought for a long time about that charge nurse and her stern reaction to my request. Maybe she thought I wanted to accelerate my father’s death. Maybe she felt she was being true to her faith. There was a part of me that wanted my father to go as quickly and painlessly as possible. I knew he would have wanted morphine and death over any discomfort. He and I had talked about this many times. He’d been clear in his directives. But there was also a part of me that never, ever wanted to let him go.
There’s a French writer, Anne Bert, who recently wrote a book, Le tout dernier été, about her decision to end her life. She’s a woman in her late fifties suffering from ALS, Lou Gehrig’s Disease (la maladie Charcot). As she says, it’s a disease that locks you into your body, into terrible pain and suffering. Since medically assisted dying is not an option in France, she has made arrangements to go to Belgium.
I’ve seen her in an interview, but I’ve only read excerpts from the book. She says, “I want to die in peace, before I’m tortured. I’m going to take the backroads, cross the border, so that I can escape the forbidden. To choose my death without renouncing my love of living.”
She writes of meeting the doctors who will assist her in ending her life. They are the passeurs, the ferrymen who will help her cross over into death when the time comes. She speaks of the gentle kindness of the doctor who has recognized that when she can no longer treat the body, she will treat the soul.
Those words have really struck me: A doctor who believes that when she can no longer treat the body, she is called to treat the soul. To liberate the soul.
Here in Quebec, since the passage of Bill 52, physician assisted dying is legal in certain, specific circumstances. I know it gets complicated and I don’t want to go into the debates about the federal verses the provincial law. There are some good resources on the Dying with Dignity website if you want to know your rights. But the reality is, there are doctors and nurses who feel they cannot participate in the medically assisted dying of their patients. For some, it’s a matter of faith, for others they simply feel they have sworn an oath to support the living. They cannot imagine supporting death.
Several years ago, before the law was passed, and before my father died, the executive director of Dying with Dignity came to speak here. She was surprised when I told her that not everyone in this congregation was fully behind the bill. It was her assumption that Unitarians would be unambivalent supporters of the right to dying with dignity. After she spoke, there were some here who felt she was too militant in her approach, while others really appreciated her message and the work she was doing.
Back then, I spoke of the importance of palliative care, something that is seriously underfunded and not adequately available in our hospitals. Too often I had seen patients waiting for a bed in palliative care. Too often I had seen them arrive too late into the process of dying to really benefit from the gentle, personalized treatment that good palliative care can offer. I had spent five weeks of my life caring for my mother at home at the end of her life, just before coming to Montreal. We had amazing support from the hospice system in the US. I wondered if our fear of death caused us to look for easy solutions, easy ways out. But I remember afterwards, an elder who said me, “You have to understand. It would bring me such peace to simply know that I had the option to die on my own terms.”
I later realized that my position made some members feel that they couldn’t share with me their thoughts about their own desires for end-of-life care. Without realizing it, I had shut a door. I also remember someone else sharing their own experiences of working with people at the end-of-life. They worried that there was something lost when we avoided the beautiful process of death. They had witnessed amazing moments of clarity and reconciliation for patients and their families at the end of life. They feared that the option of euthanasia would erase all that.
In addition to writing her book, Anne Bert, has been an activist for dying with dignity. She writes in fury about the religious right in France that is impeding legislation for medically assisted dying. She says that she has received messages of love and respect from many religious people who have said they would support her right to an assisted death, even if it isn’t a choice they would make for themselves. But there is a small, but vocal conservative Catholic minority, she writes, that believes that God calls us to live the end of life in what they see as the joy and splendour of suffering.
These believers write to tell her that she’s afraid of suffering. They say that people like her are afraid of not being sufficiently accompanied or loved enough to the end. They tell her that she will miss out on the exchanges of forgiveness, of “I love yous” that can’t be there in the same way if the hour of her death is known.
This is intolerable, she says. These believers want to impose on others their religious value of magnifying pain. She asks how they can possibly justify a God who has chosen us to endure torture.
“I do not live in solitude nor fear of not being loved,” she writes. “I am bathed in love, love of family, friendship, fraternity. God does not have the monopoly on love,” she says. She tells her critics that she’s been spending months sharing in love and intimate dialogue as she walks her final path. All she wants, she says, is to be given the right to choose.
Then there’s the story of Charlie Gard in the UK, the infant born with a rare genetic brain disorder. It was the medical staff who could not bear to treat him as he was kept on life-support, because they knew his level of suffering. But his parents held onto hope that an experimental treatment would improve his condition. The British courts supported the hospital’s decision to take Charlie off life support. In the end, even the specialist who promised possible treatment had to agree that there was nothing they could do for the child.
The courts decision was a great irony. At the same time that it called for the end of Charlie’s life, British law denies adults who are suffering from painful, terminal illnesses the right to assisted dying.
There are those who criticized Charlie’s parents for not letting go sooner. But this is what it really comes down to, doesn’t it? How can a parent ever willingly give up hope for a child? We could say that it is selfish to prolong a life in those circumstances, but I completely understand how impossibly difficult it would be to make the decision to give up.
I still get angry that there isn’t more palliative care available here. I still believe that dying with dignity can mean receiving gentle, loving care over months. But my thinking has also shifted. I think of that doctor who sees herself liberating souls. You could say she was playing God. But I prefer to see her as someone who has the the courage to fulfill her medical oath with what may be the ultimate compassion.
Still, I know from my own experience that the process of letting go is never easy and rarely without doubts or questioning of your own motives. Those final days with my father were precious. The hours I sat at his bedside talking with my bother, holding my father’s hand were irreplaceable. The God of my understanding was present with us, weeping alongside us. But I would have willingly given anything to make sure that my father felt no pain. I would have willingly shortened his suffering by days, and yet I wanted to hold on forever.
This is what I know.
Amen. Blessed Be. Namaste.
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