Lynn Steele has provided intimate care to many clients at end of life. In this blog post, she writes about how the suffering she has seen has inspired her to become a vocal supporter of end-of-life choice, and how the obstacles one client faced when trying to access assisted dying led her to advocate for a person's right to die.
Being a personal support worker (PSW) and caring for someone at the end of life is very hard. In my opinion, end of life is the most crucial part of an individual’s life and care.
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Where it gets even harder is when we have a client at the end of life who is absolutely suffering. There is no relief for them and no painkiller to take away their pain, suffering, or agony. They and their families want relief, and answers to their questions. We try to stay impartial because we are there to do our job and provide the best care that we can, but being the compassionate caregivers that we are, we get attached, we sympathize, and we empathize. How can we not? We provide some of the most intimate care to our clients.
We are outsiders on the inside.
This can be a very precarious position to be in. Sometimes we have had a client/resident for many years before they reach the end-of-life stage, and sometimes we’ve had clients in our care for only a few weeks to a few months. However, no matter how much time we as PSWs spend with them before they pass, we easily become attached and form bonds with them, and more often than not, with their families as well.
We also, in some cases, become like a type of therapist for them. It’s incredible how many clients/residents and their families find it very easy to open up to us and tell us their life stories, their family dynamics, and sometimes, even their secrets.
We hear all their worries and fears, especially the ones who are so close to the end of life. We hold a very special place for them in our hearts. We do everything within our power to ease their minds, relieve their pain and discomfort, and listen to their thoughts, fears, and complaints.
Families will ask us thousands of questions about what’s next, what may or may not happen, what to possibly expect, what we've experienced, if this is normal, or that is normal. And the list goes on with every visit, and every day closer to the end than the last. We try to answer them to the best of our abilities, to the best of our experience, and to the best of our knowledge, but, truthfully, everyone’s last days are completely different. There is no standard, there is no “usual,” and there is no textbook answer. This makes it so much harder because we want to reassure them, we want to ease them, we want to soothe them, but we, too, are unsure.
The absolute hardest is when the person we are caring for can find no relief and can find no end to their pain and their suffering. It’s heartbreaking when we hear them say “I just want to die and end this. This is no way to live. I can’t take anymore.”
And they’re right.
I’ve had clients who have been in so much sheer agony that they have to be heavily medicated, but don’t want to be. They don’t like being so high or sedated, and so vulnerable and powerless.
One client of mine, who was terminal, was given only a few weeks to live, as she was declining very quickly with a rare respiratory disease that has no cure. She said to me once that she didn’t understand why the doctors and government wanted her to suffer so much.
She was 100 per cent in favour of medical assistance in dying (MAID), because she was literally dying a little more every day and suffering excruciatingly. She was resigned to the fact that she was going to die no matter what. She told me she was ok with dying and had come to terms with it, and that she was no longer afraid. But what she was afraid of was suffering more. She was afraid of more pain. She was afraid of being suffocated, literally. Her disease was taking her breath away more and more each day. Every day, she found herself struggling to breathe.
She said she was told by her doctor that she could have MAID, but it would be his decision when it would take place. She thought when she was approved that she would be able to pick a day, and that would be that. According to her doctor, though, that was apparently not the case.
She explained that she was told that he would monitor her closely, and when he felt that she was no longer able to breathe, no longer able to endure the pain of taking a breath, and no longer able to have a functioning life, or what he deemed as “quality of life,” then he would assist. It is my understanding now that this is not actually how assessments for assisted dying are supposed to work, and that the patients and their families are ultimately in control and decide when the time is right. Sadly, my client did not know this.
She was so disheartened by what her doctor told her because, as she said to me “How am I breathing now? How am I not in pain taking a breath now? How do I have a functioning life? What kind of quality of life is this barely being able to walk or breathe on my own without the assistance of a machine feeling like someone is crushing my chest? It’s cruel and unfair to make me suffer like this. They euthanize animals because it’s the humane thing to do when they are irreparably injured or terminally ill, but not humans? They can play God with animals but not humans? Aren’t we as humans supposed to be of higher intelligence?”
What could I say to this? How could I possibly respond? Her pleading for relief from her suffering was heart-wrenching. And there was nothing I could do to ease it.
Over time, I realized what she needed most from me. She needed an ear. She needed someone to listen — someone to make her feel like she was being heard. So, I just sat and listened to her painstakingly tell me her thoughts, her stories, her jokes (she had some doozies I can’t repeat here) and about the proudest moments of her life.
She has since passed away. I wasn’t there when it happened, so I don’t even know if it was on her terms or not. It’s very rare as caregivers that we find out what happened and when, or that we are given the chance to communicate with the families once our services are no longer needed. What I do know is that she touched my life in a way no other client has and made me view assisted dying as a method to humanely ease suffering by granting an individual the right to choose, on their own terms.
We live on our own terms. Why can’t we die on our own terms?
Lynn Steele is a Field PSW with more than 10 years of experience. She is also the Compliance Officer for The Ontario Personal Support Workers Association (OPSWA) and owner of S.C.R.U.B.S. CARE Private Home Care Services of York Region.