Canadian Nurse

https://www.infirmiere-canadienne.com/blogs/ic-contenu/2020/09/21/qualite-et-quantite-de-vie-un-equilibre-difficile

Sep 21, 2020, By: Laura Braun

A year ago, I came back into a management role after a five-year hiatus working as a nurse consultant for a national pharmacy. I was excited to be back in the saddle again administrating the day-to-day operations for a lovely, medium-sized long-term care facility on Vancouver Island, B.C.

I’ve had a number of administrator roles in my diverse nursing career, and for that I feel very fortunate. In the past, I’ve been in charge of homes with over 250 beds. As you can imagine, it’s virtually impossible to know all staff, residents, and their families. It didn’t surprise me that such environments could lead to professional disenchantment and burnout.

But this time, things were different.

A positive and caring environment

Before I start, I need you to know that the organizational culture in this care community is blessed with the most loyal and committed staff I’ve ever known. The residents’ families are very supportive. Every day, residents remind me of just how important our role is as caregivers. Because this care community is small, I’m able to make relationships and foster a positive and caring environment. I am proud to say that there truly is love here and a genuine desire to focus on our residents’ quality of life for the remainder of their time left here on earth.

But in early February 2020, I knew COVID was going to pose major problems.

As my son was studying abroad, this was a chaotic time for me personally. And then the doors to our care home closed to visitors. In the days leading up to the closing, I was already playing out scenarios in my mind as to what to do. I’ve navigated a few outbreaks in my career and, as always, I took time to consider and plan my next steps. Thinking about all the “what if” scenarios was second nature to me.

But in all my sleepless nights, I had no idea what would unfold next. Who would predict that in a few short days, much of the world would simply shut down? Not even major acts of terrorism have resulted in anything on this scale.

Panic, nausea, and sheer exhaustion

On the first night of our lockdown, I put three notes on the wall at the front door where the staff would see them. They read “YOU ARE LOVED.” I walked out, got into my car, started to drive, and then “ugly cried” all the way home.

Why are we cutting off the love and family support these elderly folks depend on?

My life in those first few days, weeks, and now months has been dedicated to keeping the operations of my care home going. Checking in on my staff, residents, and their families and worrying day and night about “what will it look like” when our facility is hit. What if we are the first on the Island? Will staff show up? Will the simulations we’ve practised prepare us for what is to come? And if COVID were to arise in our care home, how would I not be left feeling that I had somehow failed them? Many of these days I ricochet from panic to nausea, to sheer exhaustion on an hourly basis.

Yes, closing the door gave us some reprieve, but I knew very well that life as we knew it had changed forever. The residents’ quality of life would be significantly affected. In the early days, they seemed quite accepting, and their families were incredibly supportive. But we knew that the long-term effects of the visiting restrictions imposed by the province could be devastating for our seniors, their families, and our staff. Even now, we are all still grieving.

Quality over quantity

But truthfully, I struggle with the process: why are we cutting off the love and family support these elderly folks depend on? Why, at this late stage of their lives, are we locking them up? It is ironic that we have fought all these years to dispel the stigma that seniors’ care homes are like prisons. Yet isn’t that what we have now created? Should we not have prioritized “quality” over “quantity” when navigating through this? And why was my input not solicited as an administrator?

The provincial health officer’s order holds me responsible and accountable to enforce visitation restrictions. I must decide who is an essential visitor, but parameters are vague. And where was the family input in all this? Most importantly, where was the resident’s voice in weighing the risks? How does locking them up in this way respect their personhood, their dignity, and their right to self-determination?

Please don’t get me wrong. I’m not saying we should have reversed our restrictions entirely and thrown our residents to the wolves. But I am saying that we could have done a better job of including all the stakeholders earlier in the game. The number of infections in this province is low, compared to other parts of Canada and the world, and I am thankful for that. Long-term care largely dispenses end-of-life care: we should strive to maximize well-being without sacrificing quality measures. We ought to be trying to maximize the time our residents have left rather than diminish their quality of life just because we didn’t have the PPE to support it.

I have the highest regard for Dr. Bonnie Henry. She has no doubt had many sleepless nights, and her own share of anguish. But now days have turned into weeks, and weeks into months. It’s no wonder health care has long been accused of causing iatrogenic loneliness. The moral distress of our staff will now add to this unfortunate situation.

Moral distress

Last week I had a general staff meeting — via Zoom. As in previous meetings, I discussed with staff how we, as care professionals, need to continue to be vigilant in the “outside world” as the pandemic evolves. I shared with my staff the moral distress I feel as an administrator (and gatekeeper of essential visitors). I am very aware of the implications this situation has on my behaviour within the community. How can I go to restaurants, gatherings, and shops and then come back to work and don a mask, while denying a diligent family member a visit to their loved one?

As the weeks dragged on into months, it became more apparent how heartbreaking this was for many of them, not to mention their loved ones who could no longer visit.

How do I tell the family of a mentally spry 96-year-old that she is no longer allowed visits because she doesn’t fit the “imminently palliative” criteria? Well, not everyone gives us warning of their departure schedule. I have frequently anguished over the possibility of missed opportunities, and if a resident should die without saying goodbye to their loved ones, I will wear that heaviness for a lifetime.

Initially, I noted that our more engaged residents seem to take things in stride. Staff did an excellent job of trying to minimize their concerns. As I reflect back, I’m left to wonder if the residents were initially okay because even though the change was negative, it was change, and something new to focus on. But as the weeks dragged on into months, it became more apparent how heartbreaking this was for many of them, not to mention their loved ones who could no longer visit.

A balance between safety and quality of life

In my role as an administrator I’ve always tried to advocate for care delivery and services based on my own expectations, treating residents as I would my own parents. I am still amazed, and deeply honoured, by the trust that the families awarded us during this time, especially when other care homes were devastated by contagion. I say “us” because this would not have been possible if the families didn’t know and trust our staff. The support from our families has been, and is, incredible. When we started an “inspiration wall,” they sent their own messages of praise and gratitude to keep us going.

Moving forward, I hope that we take an opportunity to reflect on these past few months to evaluate with purpose, not in judgment.

In the coming weeks and months as we navigate the uncertain waters of this predicted second wave, I hope that we are able to keep the essential visits that are now taking place and recognize our families as essential partners rather than visitors. Surely there is a balance to be found between safety and quality of life.

I wonder how many of our residents in care — if asked — would choose to live another year in isolation from their families. Maybe we should ask them.

Laura Braun, RN, BScN, GNC(C), CAPP, CRT, is the administrator of Qualicum Manor, a long-term care facility in Qualicum Beach, Vancouver Island, B.C.