My name is Dr. Jane Youell, I graduated with my first degree from University of Northampton in 2009 and I was awarded a PhD at the ceremony on Valentine’s Day 2016, which was wholly appropriate because my work is all about love and relationships.
My research interest is around sexuality, intimacy and dementia but increasingly I have become much more interested in end of life. I am essentially interested in subjects which are largely seen as taboo – sex and death – not together, that would be illegal.
The one thing we all have in common is that we are going to experience death. We are all going to die and people we know and love are going to die in our lifetime. But despite the fact that we are all going to affected by it and we will all have to do it, we are very bad at talking about it.
This is my Dad. He died a year ago.
We knew he was going to die. He had been in hospital for a few weeks beforehand and we had received really good care, the nursing staff interacted with us every day but the closer Dad got to death the more they backed away. We had an ‘end of life care’ nurse, one designated death person, but she wasn’t always available and there was a sense that professionals weren’t really that comfortable being around us. They were sympathetic afterwards but a little distanced in the run up.
Dad died like he lived. It was on his terms, it was sad, dramatic, funny, poignant, caring, ridiculous. My Mum, brother and I were with him every step of the way, but afterwards we all confided in each other that we had doubted we would be able to stay with him, to watch his demise.
I think I found it easier in some ways, but I still had my doubts, I had worked on the ward that my father died on, I know lots of experienced nurses who all told me the physical changes to look for. I am an experienced dementia professional so I am passionate about advanced care planning. I was the Attorney for my father and had had long discussions with him about how he would like to die when the time came.
If only I’d had a social space to talk openly about death before I was having to support someone through it……
The death café movement was initiated by a Swiss sociologist and anthropologist Bernard Cretazz who wanted to break what he termed the ‘tyrannical secrecy about death’.
The death café is not a physical location, but is an event hosted at someone’s house, place of work or community centre. The official objective of a death café is to increase understanding of death while also creating a chance for health/care professionals to talk about death. The death café has about 15-25 people gathered in small groups discussing death related topics and usually lasts 2 hours. Tea and cake are one of the most important features to the event as they make it appear friendly and appealing. The concept has spread due to media attention and because of the topic evoking so many different people’s thoughts of what death means.
So, I found myself getting interested in death café’s because I had personal experience of death and felt that professionals could do a bit better. But also, because I have professional experience of working with clinical staff and people with dementia. People with dementia need to plan in advance before they lack capacity to make decisions. As professionals, we need to broach this subject early but we need to pitch it right if we mention it at point of diagnosis it’s too much to take on board so what I all too often see in practice, is end of life care either not being mentioned at all or being mentioned when it’s too late for the person to express their wishes. Frankly, that’s not good enough.
I am delighted to report that I have been successfully awarded funding from the University of Nothampton’s Give-It-A-Go fund which will enable us to host a death café at the University of Northampton to facilitate discussions around death. I would like to invite nursing students, social work students, paramedics, police recruits, counselling students, psychologists, CAMHS students any student who is likely to encounter death as part of their career to help host and facilitate a death café. The initial death café will be held on campus, hopefully in conjunction with the Student Union. I anticipate that this will be up and running early in the next academic year. The funding will also enable us to host pop up death cafes in two locations in the community.
This project is underpinned by enhancing student experience and creating good professional practice, but it is also about being ok to talk about death because usually that leads to talk about life which is a really good thing 🙂
(Special thanks to Alison Ward, University of Northampton, Sarah Hunt, Arts for Health, Annette Ward, University of Northampton & Willen Hospice and Stacey Ackerman, Milton Keynes University Hospital for all their support and encouragement with this project)