Dignity, defined

I have been thinking a lot about dignity and what it means to provide "dignified care" to my clients as a nurse in the DTES, particularly with palliative care.

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.

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. 

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.

Community is a wonderful place, it is life giving; but it is also 
a place of pain because it is a place of truth and of growth: 
the revelation of our pride, our fear, and our brokenness. 

- Jean Vanier

Loving Much

"A new command I give you: Love one another. As I have loved you, so you must love one another." John 13:34 (NIV)

I like to think I am good at loving people, but the reality is that I'm not. I'm very human and I make a lot of mistakes and don't "keep my love on" very well as Danny Silk talks about in his book titled just that. Sidenote: I'd highly recommend that book. Check it out here. 

Recently, I met a new client in my home care nursing job who was too intoxicated to talk to me the first handful of times I tried to visit him and do my initial visit and assessment. I had doubts about whether or not this would be successful, and admittedly caught myself passing a bit of judgement while thinking these thoughts. The third time I went to visit him was at a time he had decided would work best for him, and he even asked me to write him a reminder. I arrived at the appointed time to find him passed out, covered in his own vomit, stool, and coughing up blood. I stood there almost feeling unable to breathe between the smell of the room and my heart breaking for this man.

I called an ambulance for him, and a few weeks later he was discharged home. I went back to see him, unsure of how it would go. Much to my surprise, he remembered me, and was surprised to see me. "Why did you come back?" he said, a little sheepishly. I said, "Because I believe in lots of chances." The guy seemed even more surprised at this response, and then apologized in such a wholehearted way for how he had treated me at previous visits. I also apologized. It was a beautiful moment.

After this visit, I felt God remind me that that his heart for us as our Father.
That he is the giver of many chances. That he continually stops for the one, you and I, and forgives and loves us regardless of what we have or have not done. 

I have been reading in Luke 7 about the sinful woman who anointed Jesus' feet with perfume. Jesus' response to the pharisee in this story was "Therefore, I tell you, her many sins are forgiven -- as her great love has shown. But whoever has been forgiven little loves little" (verse 47).

God has really been speaking to me through this verse in my own struggle with sin, and being able to forgive myself, and receive his forgiveness. He also spoke to me about receiving his unconditional love and acceptance, and reminded me that yes, I have been forgiven much, but I can love much because of it. We are all that woman with the alabaster jar of perfume, with a lot of love to give.

Reflections on Lent

This year I decided to commit to reading Journey to the Cross as part of Lent, which is a 40-day season of preparation and repentance as we anticipate the death and resurrection of Jesus. During this time we may fast (various foods, TV, shopping, Facebook, negative attitudes...etc), and aim to understand the significance of the crucifixion in a deeper way through meditation, reflection, repentance, prayer, worship...

During the Lent season we give up and take up. This year I felt to give up/fast desserts & sugar. I also felt to give up having constant access to Facebook/social media because I find myself checking it quite frequently throughout the day when I'm bored, and I tend to waste a lot of time on there. The Facebook app is now deleted off my iPhone (perhaps permanently?), and I am working on checking it only once or twice a day.

So, what am I taking up?

I am taking up reading the Journey of the Cross daily, and spending more time reading the Word, praying, and being with God. I find this really hard amidst the distractions, the pulls, and pressures that come with each day. I find it hard not to reply to a text I receive because I hear my phone go off as I'm reading my Bible or listening to a message. Or I suddenly need to do my banking, or fold my laundry, right now. Everything but focusing on God comes easy for me at times. This is something that really should be a lifestyle for me as a Christian, and is something I desire amidst the busy-ness of life that so often gets in the way of that.

The Lord has been whispering to me, "Megan, be still".

The laundry can wait. The texting can wait. The dishes can wait. Be still.

Sit at Jesus' feet like Mary did (John 12, Luke 10).

So, I'm taking up having this time with the Lord being un-distracted. This means putting my phone in another room, or shutting off my computer, because who else is worthy of my undivided attention & devotion but God our Father? Who else deserves full access to me except him?

What joy is set before us as we prepare for Easter, as we walk through the wilderness or desert where God is with us even when it doesn't feel that way.

It's not too late to give up, take up, and enter into this season as Easter approaches.

May we desire and come "to know Christ and the power of his resurrection and the fellowship of sharing in his sufferings" (Philippians 3:10) through the renewing of our minds (Romans 12:2).