Research can help us do what’s best for people in their last days and months of life
Nick Tracey, whose mother had terminal cancer, tells us why he volunteers for Marie Curie’s Research Expert Voices Group, and why he thinks research is important to help us improve palliative and end of life care.
"I’ve been a member of the Research Expert Voices Group for the last three years. We volunteer our time because we’re keen to have a say in making things better for people living with a terminal illness and their loved ones through research projects funded by Marie Curie.
"We’ve all had an experience of looking after someone close to us who had a terminal illness. We want to be part of something bigger that can help us to use our experience in a positive way, so we can help others to have better care and support towards the end of their lives."
What my experience taught me
"When my mother was dying, going through the whole process made me wonder if more could have been done to make her experience, and the experience of those around her, better.
"I’ve always had an interest in research and the value it has in improving people’s lives. I studied physics at university, so I understand the importance of testing, and not just assuming, the right way of doing things.
"Towards the end of my mother’s life, I didn’t understand what she was going through, how much pain she was in, or if she was getting the right support and treatment. I didn’t have the reassurance that she was having the best treatment and experience she could possibly have, and I wondered if we even know what that would look like."
Knowledge through research
"By using research – asking the right questions and testing things out – we can learn what works best for people in their last days and months of life.
"Through my work with Marie Curie’s research team, I’ve realised that there’s still a big gap in research-based knowledge on palliative and end of life care. There’s still a lot we don’t know about caring for someone with a terminal illness. That’s why more research is needed to help us understand how we can improve care for people with different terminal diagnoses, and at different stages of their illness.
"I’ve had a rewarding time being involved in various research projects with Marie Curie, including the Priority Setting Partnership which identified key issues of importance to patients, carers and clinicians that would benefit from more research.
"Most recently, I was involved in selecting research abstracts for the poster exhibition at this year’s Annual Marie Curie Palliative Care Research Conference. The conference theme, Round the clock: making 24/7 palliative care a reality, really resonated with me. My mother had to be admitted to a hospice towards the end of her life because the extra care she needed couldn’t be provided in her home, any time, any day of the week. So I’m pleased to be attending the conference this year to find out what new research is being done to help address this vital area of care."
This year’s Annual Marie Curie Palliative Care Research Conference is held on 19 October. Read more about Marie Curie's research work.