In coping with our changed reality, what can we learn from the worlds of palliative care and organisational change?
Lea McInerney writes:
Arriving home from the shops the other day, on the weekend before cafes stopped serving dine-in customers, it hit me that what I’m going through might be grief.
Pushing my trolley around the aisles at the supermarket, I’d kept my distance from other people in case one of us sneezed and set off a chain reaction of fear, or virus particles, or both. At the checkout, I barely smiled at the assistant, when normally we’d have a little chat. At the bulk foods shop, one of the staff asked me to wash my hands before I handled the glass jars full of spices and grains.
But outside on the street again, I walked past groups of people sitting outside cafes, talking and laughing and leaning into each other. I’m sure I raised my eyebrows and shook my head as I thought to myself, ‘Idiots. Don’t they realise?’
After I got home and unpacked the groceries, I sat on the couch, muted the news on the TV, and got angry with them all over again. How could they do that? They’re putting us all at risk. Surely they’ve seen the news reports? Then it occurred to me that maybe they’re in denial, a common response in people who are grieving a loss.
I flicked off the TV and stared into space, contemplating what’s rapidly changing for me: The part of my work that relies on face to face contact – gone. Visits to my elderly mum and family in other states – gone. My local library where I spend lots of time alone but with other people – gone. Cuddles with my neighbours’ new baby – gone.
I felt a run of thoughts and emotions. ‘This is not fair.’ A deep breath. ‘Nah, it’s okay, it’s not really happening.’ Another deep breath. ‘Stuff it, I’m going to ignore it all too.’ Then I took a long, deep breath and faced facts. It’s real. It’s happening.
And in doing that, I began to see that underneath these reactions of mine – angry one minute, ignoring it all the next – a deep sadness was welling up inside me. That’s when I knew this was grief. From experience I know crying runs its course, sometimes quickly, other times spread out over days or weeks or months, the tears coming and going in the spaces I can find for them. And over time I’ve come to trust that those salty tears will dissolve something inside me and carry it away, helping me let go of the old world as I knew it, and move towards the new.
The curve
In the 1990s I was a palliative care nurse specialist and learned that grief is a normal response to loss. Elisabeth Kubler-Ross’s pioneering work on the grief process anchored my understanding of the big and unsettling emotions that many of the dying people I nursed and their families were going through.
Most of us probably know some version of those stages of grief: there’s denial (it’s not happening), anger (how dare this happen), bargaining (if I do this or that or something else I might be able to get through this), sadness (it really is happening and I’m losing so much and it hurts), and acceptance (this is real, I need to commit to it and do it as well as I can).
In the early days of Kubler-Ross’s work being published, it was sometimes misinterpreted. Some thought she was saying that grieving people go through those five stages in an orderly and tidy way. In reality, as she knew, it’s often wilder than that.
The image that has worked best for me over the years is a U-shaped curve, the different stages of grief dotted along it. Picture a grieving person entering the curve from one side, and you see that they can be like a ball bouncing around inside it, hitting different stages randomly. One minute angry with their doctor or God or somebody, the next telling others there’s nothing wrong. Another time tearful, then calm, then angry again. All the while inching slowly towards relief and some sort of resolution on the other side of the curve.
A decade after my palliative care days, I changed careers and came across the grief curve again.
This time I was working in the public service on projects to reform systems. I saw that when big changes are being made to an employee’s work, they go through a similar grieving process to a person who’s dying. Kubler-Ross’s work turned up in text books again, adapted to this new context of management. Here the potential losses were often mundane, but just as real – loss of a familiar work role, or status, or a desk by the window, or of colleagues moving on.
With COVID-19, the world as we know it is sliding away from us. We don’t know if we’ll survive it, or if our families will, or if all the people we love will. We don’t know if it’s bringing permanent change to what seemed stable certainties. Loss, both actual and potential, is all around.
What helps?
What helps people move usefully through grief? This is some of what I learned from the different worlds of palliative care and organisational change.
- Honest information about the situation, given kindly and clearly.
- Clear, simple explanations about why things are happening the way they are.
- Being upfront about what is and isn’t known.
- Time to let things sink in.
- Information patiently repeated so it can be fully absorbed.
- Knowing what the next one or two steps are in dealing with the situation.
- Having an outline of the likely full course of the situation.
- Being able to express often-changing emotions in safe ways.
- To have our worries and concerns acknowledged by others as real for us.
- The chance to come up with ideas for what will help the situation now and ahead.
- Practical support.
- Enjoyable connections with others.
If our governments speak plainly and clearly to us about what we need to know and why, what we need to do and why, and how they’ll help us, we can get on with doing our part to survive this pandemic. Not just physically, but socially, emotionally, and even spiritually.
At each major stage, in the weeks and months ahead, I’d dearly love a few clear points from government leaders about what it’s most important for me to do right now – and why. And a few clear points about what I mustn’t do. I want to read them and see good graphics explaining them and I also want to hear them, on radio and TV and social media. (Good graphics and audio are essential for those among us with low literacy.)
I’d also love a clear and caring message – just one will do – about us, all of us, as a community. The New Zealand government did this early and it’s both comforting and practical. ‘Together we can slow the spread.’
I’m doing my bit, staying home as instructed, and spending more time than usual on the couch. I’m staying up to date on the news but rationing it too, for the sake of my sanity and my heart.
Like any model, the grief curve is a simplified version of reality. But as we humans make our way into whatever the new world might look like in a year or two or ten, I’m finding it helpful in understanding my own and others’ shifting emotions, and what might be needed moment to moment.
• Lea McInerney is a former palliative care nurse and health policy adviser, who now works as an organisation development consultant and a plain English specialist. She runs a small consulting business and also writes articles and creative nonfiction. Her work has been published in Griffith Review, Inside Story and literary magazines.
If you or anyone you know needs help, call Lifeline on 131114 or Beyond Blue on 1300224636.
I remember studying the stages for my counselling course and role as bereavement counsellor for The Co-operative Funeral Service. It was helpful then, and is again, whenever I suffer a loss myself. If psychology was used more widely to bridge the gap between people we would get much further forward as a society.