I am a learning disability student nurse and I attended the death, dying and learning disability conference in Cardiff last night. Going into the conference I think I had a preconceived idea about what it would cover and how I would feel leaving there. In all honesty I thought it was going to be a depressing evening but in actual fact I left feeling positive, excited and more importantly it made me think and question the concept of death, its process and its impact.
When asked whether I think you should or should not tell someone they are dying I have always answered yes instantly with out question. When asked whether someone with a learning disability should or should not be told they are dying I would still say yes but there is a small part of me that would say no. This made me question why? What is the difference? Statistics were shown to suggest that a high percentage of people would say no they wouldn't tell someone with a learning disability that they were dying, this was for several reasons. One reason was because they wouldn't understand the information or because it would be too upsetting. All these things made me question who's responsibility is it to help people with learning disabilities understand this information.
An interesting point raised was that we should be more concerned with why we would or would not tell someone with a learning disability that they are dying, rather than should or shouldn't we? We need to think about how we break bad news, and how do we support these individuals after the disclosure? This has made me think about the training we receive as nurses, doctors or support workers and whether we are prepared enough to disclose that information and offer appropriate support... This then caused me to think who's responsibility should it be to deliver the bad news?? It was implied that in cases of people with learning disabilities that were dying it was often left to the support worker or family member and I wonder if that is always fair? The conversation made me question how people around someone who is dying are supported? And is there enough support for people who are bereaved for people with and without learning disabilties.
Overall, I feel like there is a want to shield people with learning disabilties from things that are perceived to be to upsetting or beyond their understanding, be it the death of someone they know or the fact that they are dying themselves. I have learnt from personal experience that acknowledging death but not talking openly about it can be detrimental to all involved. It can leave people feeling isolated, confused, lost and upset. Not speaking about Death or dying does not prelong someone's life it mearly avoids the inevitable and robs someone of the opportunity to express how they feel and access the support they need.
I have been left with lots of things to think about and I am inspired to learn more about Death, Dying
and it's processes in relation to people with learning disabilities. Over all a very interesting conference. Thank you.
Carly Davies - student learning disability nurse at USW
You can train to become a Learning Disability Nurse at University of South Wales, you can find more information on the USW website: https://www.southwales.ac.uk/courses/bachelor-of-nursing-honslearning-disabilities/
You can also contact Rachel Morgan (Specialist Lead) via email: firstname.lastname@example.org