It’s Dying Matters Awareness Week, and the theme this year is ‘Dying Matters at Work’; this is a subject that particularly speaks to me based on my own experience nearly 20 years ago, and so I thought I would share my story.
To set the scene, I was a Mum of a four year old who had just started school and I was a community palliative care nurse, working in a small NHS team with a very supportive group of colleagues. We shared offices with the larger hospital palliative care team and so benefitted from a wider MDT including chaplaincy. It was early December and all-around people were preparing for Christmas. It’s one of my favourite times of year, and traditionally I would always meet my Mum in London for a shopping spree, followed by a late lunch joined by my Dad. This was planned for the Thursday that week, but on Wednesday lunchtime I got a call completely out of the blue to say that my Dad had died at the age of 63. We have a family history of cardiovascular disease and his own Dad had died at 61 of a heart attack, so in my Dad’s books, he had beaten him, despite in the end succumbing to a similar fate, as he’d always expected.
I was floored; I still can’t actually remember where I was when I got the call, or really much about the next 24 hours. I know I needed to get back to my Mum’s to be with family. I got in the car, made the journey north and stayed there for the best part of four weeks. I look back at this time and know how important it was to be there with my Mum as she struggled with what had happened. My Dad had been working away from home and had been found dead in his hotel room. She’s had that visit from the police we all dread; he was so far away, and we all had to visit the mortuary so we could believe he wasn’t coming home. We had to make the funeral arrangements surrounded by people enjoying Christmas parties and we still had the weight of the inquest to deal with. As the nurse in the family, the one who was ‘experienced’ with death and dying, perhaps others in my family expected me to be there, but regardless of their expectations, the weight of expectation on myself meant that I had to make myself available. I spent the weeks with my Mum and was joined by my husband and son at weekends; thankfully a four year old can provide quite a lot of light relief in difficult times.
I know how lucky I was to have a manager who made my time off possible, to have colleagues who checked in with me on a daily basis and to have the financial security that meant that if I took some time off, I would still be paid.
The funeral, Christmas and New Year passed, and I needed to get back to work, so into work I went. I had a gentle day or two catching up with colleagues (I know, another luxury) and then I set off to do some visits. I found myself really struggling, coming away from patients and their families feeling more and more cross; they knew they were dying, had seemingly all the time in the world, but were putting off the important conversations, focusing on trivial matters and I felt that I had had that privilege taken from me. In summary, my ability to empathise was just not there, and I worried that I would say the wrong thing, or not show compassion, when people all around me needed just that.
It was towards the end of my first week back I think when I came back to the office, working on my own, and Christiane, a quite eccentric French nun and member of the chaplaincy team, stuck her head through the door and asked how I was doing. I will always be indebted to her. I’m not someone with a significant faith, but she didn’t care, she was there for me unconditionally and she just listened. As a caregiver at work, I had also been a caregiver at home, and had certainly not begun to process my own grief, let alone understand how I was going to be surrounded by death and dying professionally once more. I remember sitting with her for what seemed like hours, and in that afternoon I realised that I wasn’t ready to get back into the clinical practice saddle for now. I’m not just indebted to Christiane, but to all of my colleagues, who created an environment which made it safe to be vulnerable and to say I was struggling. I learned some really important life lessons through this, but in the context of this year’s Dying Matters theme, I also learned important leadership lessons about why ‘Dying Matters at Work’. I know my experience is not that of everyone, I know some colleagues who have felt ok coming back to work, and who find they can swap hats in their job in a hospice. But that just wasn’t me, I wasn’t able to give 100% to my patients and that mattered.
So what made a difference?
Time: To talk, to deal with the practical matters and to breathe.
Space: To feel safe and to accept that being bereaved and dealing with death and dying on a daily basis were incompatible for me.
Kindness: The messages from my colleagues that expected no reply in return but simply said we’re thinking of you, the understanding that I would be off for a while but not reminding me that that would have implications on their own workloads and social arrangements.
Recognition of my grief: Talking about what happened, saying sorry and not pretending all was ok.
Security: Not worrying that I would be sacked if I stayed off that bit longer, and that I had the necessary salary coming in whilst I was off.
Understanding: That work was the last thing on my mind right now and recognition that everyone’s circumstances are different.
As I reflect on this time almost 20 years ago, I can see how my Dad’s death changed me personally and professionally and actually opened up a career path I never would have anticipated had I not had the experience. I hope that I have been able to carry what mattered with me throughout my career and embed that in my leadership practice to this day, and I hope that as an organisation that works with people who are dying and those facing grief every day, our hospice models best practice as a compassionate employer for everyone in our team and shows compassion to colleagues in partner organisations.