How do we talk about it?

Hello, it's Sam here. Over the past two years at Spark the Difference, it's been a privilege to listen to people talk about what matters to them about giving and receiving care.

Without prompting, many of these conversations have turned to dying and death. People have shared what happens when people they care about, or for, die - and how this can have such a profound impact for years to come.

I've noticed that these conversations tend to be about what happened and people's reactions to this. The focus was often on what went wrong and what people wished was different. For one of the greatest certainties in life, it seems that we can be quite uncertain about how we would like things to be, before they happen.


Overall, I've heard two things:

1. People don't know how to talk about 'it'. We don't have an accessible ‘death vocabulary’. We can be uncomfortable, embarrassed or fearful of saying the wrong thing.

2. People often leave these conversations too late. Many wished they had spoken with loved ones over a cup of tea in the kitchen, rather than in an emergency room with a hospital consultant standing by, explaining what decisions need to be made.

If they could change one thing, it was to start a conversation sooner. Yes, the conversation will still be emotional and at times, may be difficult - but it wouldn't be urgent.


100 conversations

To help us understand how people talk about dying and death, our plan is to speak with 100 people about how they talk about it.

People who use care, give care and/or plan care services. Patients, families, clinicians, front-line staff, managers, policy makers, academics, religious leaders, lawyers - and more. 

What will we talk about?

We'll be talking about what people have seen and experienced; what they think and feel about death and dying. How do they talk about dying and death to themselves? To others? Does it depend who the 'other' is?

It could be about their own death; that of a loved one; and/or if they provide or plan care, that of a patient or a group of patients.


Why are we doing this?

Our mission is to help bring humanity back into every interaction in care over the next 20 years.

Our goal for this project is to understand how people talk about dying and death. The assumption that we currently hold - and want to test through these conversations - is that having earlier conversations about death and dying may help reduce some of the distress people can experience when their loved ones die.

We'll share insights about the unfolding conversation on our website.


Intrigued? You can:

1. Join the conversation

Interested in sharing your experience or thoughts? Please reach out, I'd love to hear from you and find time to speak.

We can talk over a coffee, by phone, by Skype/Zoom or by email. Send me an email and we can arrange a time.

2. Share good stuff

Know a good book, podcast, article, conference, leader or organisation that we should check out?

Please share it with us. With your permission, we'll add it to our resource list to share with others.

3. Follow the conversation

We'll send a weekly email with what we're hearing, thinking and feeling as the conversation grows.

Sign up to follow the first to the hundredth conversation, and beyond.