Why aren’t we talking about terminal illness, when it will affect so many of us?

For the 150th anniversary of Dr Marie Curie’s birth, we’re celebrating the women who embody her legacy – both through their connections to the charity that Dr Curie inspired, and their commitment to facing their own challenges.

Dr Emma Carduff is a Research Lead at the Marie Curie Hospice, Glasgow – and she believes the key to improving care at the end of life starts with a single conversation.

Discovery, reflection and progress: Dr Emma Carduff. Illustration by Lizzy Stewart.

“We urgently need to start talking about people’s goals and preferences for death, and to understand how we can create quality of life at the end of life and throughout terminal illness – not just the final few days. We need to allow those important conversations to be had earlier.”

The power of talking

“I’ve discovered through my work that there’s a lot of power in sharing our experiences in order to make sense of them. I was once on a train from Edinburgh to Glasgow when an elderly man spoke to me about how his son had recently died. It was a short yet intense conversation; we were both in tears. Later I realised that I’d been wearing my Marie Curie lanyard, which must have impacted his decision to speak to me.

That experience taught me that Marie Curie has a responsibility to not only care for people, but to help change the way we talk about death and dying. One of the things he said to me was, “I didn’t ever talk about it.” There’s a power in storytelling and in trying to make sense of what has happened.”

Asking questions

“I’ve always been interested in research, even during my undergraduate degree. After working as a nurse I eventually completed my PhD, which explored the dynamic experiences of people with cancer at the end of life, and the experiences of their carers too.

Part of my research involved asking people to tell me their stories in their own words. I wanted to know about what happened around the time of death to understand its emotional, psychological, and spiritual impact – I still do.”

A profound experience

“My first experience of Marie Curie actually occurred years ago, after my granddad died in their Glasgow hospice when I was 10. I was allowed to take my dogs with me to visit him there, which I think he enjoyed! It was a profound experience – different, but very positive.

My role within the charity today is quite broad – we oversee research and lead a number of projects through the hospice. I’ve recently helped research how we can better identify carers of people with terminal illness, and when the best time is to initiate a support plan for them. 

One of the challenges we face is that people who are looking after someone they love who has a terminal illness often don’t see themselves as carers, nor do they think of their needs as legitimate. This often results in a crisis in the caring situation. There needs to be a system in place so they know who to reach out to when they’re unable to cope.”

Support through relationships

“The work Marie Curie carries out addresses this need directly. I’m consistently inspired by my clinical colleagues at the hospice and out in the community, and what the care they deliver means to our patients and their families.

So many of the problems we’re facing can be tackled through the relationships they build with their patients. That’s what a hospice can offer – and that’s why we need your help to continue this vital work.”

Losing the battle?

“One of my PhD publications reported that in a group of cancer patients it was hard to ensure they had a good death, because for so long the focus was on prolonging life. The language we use to describe death as a society and can also be very damaging.  If someone dies from a terminal illness, have they truly 'lost their battle'?

It’s an area I’m hugely passionate about, given the ageing population. Have we focused too much on cure and lost the ability to think about what happens towards the end? It’s going to become a bigger and bigger issue.”

Today one in four people don’t get the care and support they need at the end of their lives. Please help support the care that Marie Cuire hospices provide and keep us in the communities where we’re urgently needed by donating today.