In my last year of life, help me live well until I die.

Monday November 18, 2019

Understanding what matters, one conversation at a time

What’s important to you?

What does good support look like? 

Simple questions can be revealing.

We’ve been working in palliative care for over thirty years between us. Yet it’s only recently that we’ve started to use these questions, and have been impressed at how helpful they can be. It often takes moments for people to express what really matters to them.

Peter, living with metastatic cancer, had severe pain in his hip, which meant he could no longer walk more than a few steps. But what mattered most to him was how his wife would manage after he died. Understanding this didn’t mean we ignored the pain, but helped us to work with the family in a different way, supporting them to understand and appreciate each other’s coping styles.

Sheila was dying in the hospice. When we asked her what good support looked like from her point of view, she simply said that she was really enjoying reading at the the moment, and if she was reading at 2am, could she be left to it, rather than being offered something to help her sleep? A straightforward request to honour. 

Eva was increasingly breathless, frightened, and wished her life would end. When asked what was important to her, she replied “to be peaceful”. This led to a conversation about what she might expect as part of normal dying, which she found deeply reassuring, and how she might talk with her family about this.

Learning to have better conversations about “what matters”

Over the past few months, we’ve developed a tool which is helping us to focus on what matters, share what matters, reflect on the conversation, plan ahead and learn from each experience, all in a few minutes. 

Our initial focus was improving conversations with people and families we support, but we’ve also found it useful to reflect on conversations with colleagues. 

If you choose to give the reflective tool a try, we’d love to hear what you find. If you have ideas to improve it we’d love to hear from you to.

Some colleagues have been concerned that if we ask people what matters to them we will be inundated with fanciful requests that are impossible to achieve, and that trying to do so will be to the detriment of support for others. 

That’s not our experience. People are generally pretty reasonable and often what matters is stated simply.

“For my pain to be controlled.”

“To go for a walk on the quay.”

“Not to be a burden on my family.”

“A peaceful ending.”

This isn’t just about end of life care though. This is for all of us, our colleagues, our families, supporting each other to live our best lives. 

After all, why should we wait until the last months of our life before we find out and focus on what really matters to us and to each other?

Saskie Dorman is a consultant in palliative care and Andi Stone is clinical nurse specialist in palliative care now working with palliative care volunteers.

This work is part of Results through relationships, improving personalised care towards the end of life: Dorset Integrated Care System in association with NHS England Personalised Care Group, with Andy Brogan at Easier Inc acting as thinking partner. With thanks to all those involved in Results through relationships.