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https://www.infirmiere-canadienne.com/blogs/ic-contenu/2019/07/22/comment-se-remettre

Jul 22, 2019, By: Jenna L. Vardy

I will withdraw life support for a teenage leukemia patient because we have nothing left to offer. All hope is gone for a meaningful recovery. Her parents have been fighting this cruel disease alongside her since her diagnosis 6 months ago. She has been in the ICU for weeks, sedated and ventilated, waiting and hoping the donated stem cells will engraft and she will achieve remission. Her body is defenceless, overcome with infection, and bleeding spontaneously. She has required several blood and platelet transfusions every shift for weeks.

Over the last few days it has become clear that the stem cell transplant has failed. Her organs are failing one by one. She is maxed on two vasopressors, requiring pressure-controlled ventilation and 100% oxygen. We have reached the end of the line. She no longer resembles the photos her father has affixed to the wall: a vibrant and happy girl surrounded by family and friends. Her body is bloated and bruised, and her skin is peeling away. The whites of her eyes are red with hemorrhage. The inside of her mouth is raw and bleeds continuously due to severe mucositis. Her suffering is palpable and undeniable.

Her family agrees with the medical team—it’s time to let her go. By the time I come on shift, the decision has been made. This isn’t the first time I have looked after her. I know her and her family, which makes it that much harder. Solemn family and friends slip in and out of the room for hours, saying their final goodbyes. I bring them chairs, tissues, and water. Everyone is devastated and exhausted. I have a front-row seat to their unabated and visceral grief. I witness her teenage friends, young and vital, trying to be brave for their friend, while perhaps realizing it could easily have been any one of them instead. One wears sunglasses, despite this being the night shift, to hide his tears. Her parents are managing to hold it together for her younger sister. She unravels, falls to the floor, and needs to be carried out. It’s all just too much.

After hours of deep breathing, holding tight to my tears, looking away, and leaving the room when I feel myself losing control, the parents approach me to give the word: “We are ready.” I inhale deeply, exhale slowly and try to relax my shoulders to focus on what I must do, for her and for them. My colleagues give me a knowing look of support. Only they know what this is really like. Their presence fills me with the strength to enter that room and do the unimaginable.

The respiratory therapist and I enter together as close family cocoon her bedside. As the therapist disconnects and shuts off the ventilator from the tracheostomy, I gently push the hydromorphone and midazolam to ensure she doesn’t experience pain, fear, or air hunger in her last moments. I slowly walk by the IV pumps and stealthily turn off the vasopressors, first norepinephrine, then vasopressin. I watch her closely for any signs of discomfort—there aren’t any. Her heart rate immediately slows, the QRS gets progressively wider, the ends spreading apart until there is only a flat line. Within minutes, she’s gone. Her parents say goodbye to their firstborn daughter for the last time. After a while, they stop to tell me they’re leaving, their eyes vacant, faces blotchy and swollen. Their hope is replaced with heartache—their world forever changed.

The resident pronounces death and starts the death certificate. I fasten a strip of asystole to my nurse’s notes and finish my charting. I gather a couple of helping hands to do the post-mortem care. We remove her central line, peripheral lines, Foley catheter, and rectal tube. We gently roll her into the white plastic shroud, attach the toe tag, and pull the zipper closed. I silently say my own goodbye and wish things could’ve been different. As I sit down for the first time in 7 hours, I realize I’m emotionally and physically spent. I have nothing left to give. I’m suddenly parched, starving, and desperate for sleep all at once.

Emotional and physical exhaustion

The tears I had been holding in so firmly didn’t come until the next day. She filled my thoughts for days and would reappear regularly for weeks; after a couple of months, only occasionally. Many people assume I feel guilty for ending the life of another. That isn’t the case. I understand why it’s necessary and ultimately kind. I experience the pain by virtue of being so close to it. The trying sadness that remains for me lies in the physical suffering being replaced by emotional loss and emptiness. Bearing witness to the epitome of human suffering can be an impossibly heavy burden to bear. You can never be prepared to watch parents lose their child.

I see myself in them. Her parents were my age. She was a teenager, struck down just as her life was taking off. They could’ve been my husband and me. She could’ve been my daughter. Their loss could be ours. They didn’t deserve this to be their story. Nurses don’t get the luxury of denial, the belief that these things happen only to someone else, somewhere else. I know their daughter’s suffering is over; however, theirs has just begun. Our lives are forever intertwined in this moment, having experienced something so tragic together. They walk slowly out of the unit, leaving their daughter behind. I never see them again, although they stay with me forever.

“Cope” is a four-letter word. How do I even begin to unpack this kind of experience? How do I go home to my family having done the unthinkable? My family and friends listen and offer words of support, but they can never really understand what I had to do. The multidisciplinary team offers a debrief session a few weeks later. There is an employee assistance program at the hospital. I don’t request any of it. This is something I need to work through on my own. I call in sick for my following night shift, and every one of my colleagues understands why. I don’t have it in me to care. My tank is empty. It’s taking everything I have left to be a wife and a mother at home, packing school lunches and helping with homework. It wouldn’t be fair to care for another patient until I’ve come back from this.

I need to fill myself up again, so that I can give again. I know from experience that the goal isn’t to get over it, push it down, or forget. I need time to really feel it, to think it all through. I need time alone to ugly-cry about the unfairness of disease and the limits of medicine. I need to identify what I’m really feeling under all the frustration and melancholy. I must unload all that sorrow and let it soak in for as long as it takes. I take it easy on myself. I indulge in things that I enjoy because she can’t. I take nothing for granted. I work through the feelings silently inside my head, until this experience makes sense. Only then can it be packed neatly away and placed on the shelf with the others. I take these emotions down every so often and experience them all over again, because coping isn’t forgetting, it’s acknowledging the excruciating chaos in what we do and accepting that it will become a part of us—for better or worse.

If you find yourself in a place where the feelings aren’t staying on the shelf, or your shelf is getting too crowded, reach out to someone you trust for help. Sometimes it’s too much, and we need professional help. Don’t get stuck in the suffering. Take the hand of someone willing to help you climb out, someone who can help you reorganize your shelf.

Over the years, you learn what works for you and what doesn’t. It’s different for everyone. It’s important to accept that the feelings will never leave you; they will just fade with time and acceptance. You must care as much for yourself as you have for them. Only in this way will you restore yourself enough to do it all over again.

The stories add up, and it never gets easier—you just get better at putting yourself back together.

Jenna Vardy has spent the last 11 years working as an ICU nurse in Halifax, Nova Scotia where she lives with her husband and two children.