Although this has been an ongoing lesson for quite some time, this week punched me in the gut and really challenged my thinking around what this means. I'll back up a little. For the past few months I have been caring for a middle-aged guy battling Lung Cancer living in an SRO hotel (single room occupancy). The cancer is winning, and he is angry about it. Rightfully so. The pain descriptor he uses every day that I see him is "enormous", regardless of how much we increase his pain medications. It's hard to see him in pain. He chooses not to have sheets on his bed, and refuses to allow anyone to clean his room for him. The laundry continues to pile up, alongside the overflowing garbage bucket. My shoes stick to the floor a little more each day, and my heart also breaks a little more each day. Some days he lets me tidy things up a little, and other days, he doesn't. Sometimes he lets me bring him some fruit and a National Geographic to read, and other days he tells me to "F$*% off".
I have spent the last few weeks trying to convince him to allow people to clean his room, go to hospice where he can receive 24/7 care, or just allow building staff to check on him, etc. Because, that is what makes a good palliative nurse right? That it looks good, that things are in order, the "way it should be", that pain/symptoms are managed. That someone passes away peacefully in hospice with people around them. If that happens, then I have done my job well it would seem and I can pat myself on the back.
Well, then currently I'm the worst palliative nurse, ever.
But that's the thing, it's not about me.
"Just let me do things my way" he said to me last week.
I thought I was doing that.
Busted.
Well, then currently I'm the worst palliative nurse, ever.
But that's the thing, it's not about me.
"Just let me do things my way" he said to me last week.
I thought I was doing that.
Busted.
I was praying about this situation, asking God how I can best provide care to this client who on the best of days is hostile, angry, and upset with us for asking how his pain is or if he wants sheets put on his bed. I felt God remind me that dignity is about honouring what people want for themselves, not what I want for them. I have also been thinking about compassion and what it is, and isn't. I'm starting to realize that perhaps it's not really compassion to be distressed with the situations I come across like this (over and over again) just because it doesn't look the way I think it should, nor is it my right that the client knows I'm struggling with their decisions or way of living.
Don't get me wrong. It's completely normal to feel distressed and struggle with the suffering we see. It's good to be aware of these feelings, but they shouldn't dictate or motivate our actions and words. A friend recently reminded me that compassion means "suffer with" in Latin.
I feel a complete paradigm shift in my thinking about all of this. In the last few weeks I have stopped trying to convince this client to make different decisions/change his mind about hospice, so that I can feel less distressed. I see him every day, and I ask questions about his pain and other symptoms, but our conversations are mostly about what I can do to help him get through the day, today. I make the calls to his physician about needing more pain medications, and I am just present with him because that is what he wants, even if only for a few minutes. He is fully aware of the supports and resources available to him, and our agreement now is that he will tell me if he wants any of it. I don't ask or push an agenda anymore.
A social worker recently said to me, "People often die the way they lived".
I would finish that statement with, "My job is to come alongside them and respect that".
I am not a failure because this man has no sheets on his bed or because his room is a mess. I am failing him if I don't allow him to tell me what dignity is for him. I need to allow him to tell me what he wants, instead of me telling him what he should want. I'm not being "moved with compassion" if I am just trying to get things done and in order because that's how it "should be" or that is what looks good/right according to the palliative care guidelines or, our consciences.
This is going to be a never-ending lesson, as I know there will be other clients like this that I will walk alongside. I only hope that I can continue to love better and provide dignified care in a way that respects who they are, their decisions, and how they have lived their lives. I am humbled on a regular basis by what my clients teach me in the DTES, and this was a large piece of humble pie to chew on. In fact, I'm still working on it.
Dignity is about validating, honouring and respecting a person's wishes regardless of what I think would be better for them.
Don't get me wrong. It's completely normal to feel distressed and struggle with the suffering we see. It's good to be aware of these feelings, but they shouldn't dictate or motivate our actions and words. A friend recently reminded me that compassion means "suffer with" in Latin.
I feel a complete paradigm shift in my thinking about all of this. In the last few weeks I have stopped trying to convince this client to make different decisions/change his mind about hospice, so that I can feel less distressed. I see him every day, and I ask questions about his pain and other symptoms, but our conversations are mostly about what I can do to help him get through the day, today. I make the calls to his physician about needing more pain medications, and I am just present with him because that is what he wants, even if only for a few minutes. He is fully aware of the supports and resources available to him, and our agreement now is that he will tell me if he wants any of it. I don't ask or push an agenda anymore.
A social worker recently said to me, "People often die the way they lived".
I would finish that statement with, "My job is to come alongside them and respect that".
I am not a failure because this man has no sheets on his bed or because his room is a mess. I am failing him if I don't allow him to tell me what dignity is for him. I need to allow him to tell me what he wants, instead of me telling him what he should want. I'm not being "moved with compassion" if I am just trying to get things done and in order because that's how it "should be" or that is what looks good/right according to the palliative care guidelines or, our consciences.
This is going to be a never-ending lesson, as I know there will be other clients like this that I will walk alongside. I only hope that I can continue to love better and provide dignified care in a way that respects who they are, their decisions, and how they have lived their lives. I am humbled on a regular basis by what my clients teach me in the DTES, and this was a large piece of humble pie to chew on. In fact, I'm still working on it.
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