Learning to talk about death, dying and dementia

A guest post by Caroline Scates, our Admiral Nurse Professional & Practice Development Facilitator:

Death and dying are understandably difficult topics for many of us. Nevertheless, dying is a natural process and it is important that we offer people with dementia, their families and carers as much support as possible to consider End of Life choices.

Admiral Nurses recently selected Palliative and End of Life Care as one of their priority topic’s for professional development over the next twelve months. In order to explore some of the most important aspects of this type of care, Dementia UK worked with the University of Worcester to develop a Master Class in End of Life Care. This collaboration resulted in a planned development day for Admiral Nurses covering subjects such as recognising deterioration, identifying some physical and psychological aspects of end of life care, and how best to support families with their grief and loss. The day also covered the subject of Advanced Care Planning (ACP), a written statement or plan that sets out an individual’s  wishes, beliefs, values and preferences about their future care. The aim of an ACP is to guide healthcare professionals, family and carers to make decisions on end of life care should the person become too unwell to express those choices.

We felt it was important for Admiral Nurses to gain an appreciation and understanding of what it felt like to write an ACP, so the planned day included the opportunity to write one of their own. The results were quite thought provoking, leading to some interesting discussions on aspects such as where they would like to die, the people they considered to be the most important in their lives, and what they would most like to be remembered for.

To date we have run three of the six planned masterclasses, with 56 nurses attending. A further 70 nurses are booked on the remaining days. Feedback from those attending has been positive, with nurses feeling it was valuable to have the opportunity to discuss care surrounding end of life, resulting in them gaining more confidence in their discussions with the families they work with. Jane Gilby, Admiral Nurse from Basildon Hospital has already used some of the skills she picked up on the day saying, “The day helped me to reflect on some of the language that I use and I now feel more confident in having honest and true conversations”.

We live in a society that generally avoids thinking or talking about death and dying, and so initiating discussions about end of life can be difficult. Further developments for Admiral Nurses in this area include more in depth work with families on Advanced Care Planning and we’ve been gathering feedback on how we can best support Admiral Nurses in gaining confidence on this topic.  Our nurses have excellent skills in communication, and want to enhance their understanding further to be able to navigate such conversations around end of life care, to offer families the best possible support during what can be a difficult time. We hope this will help families have an unpressured conversation about fears and wishes connected with death and dying with their Admiral Nurse allowing families to have the opportunity to talk and make informed choices together.

If you’d like to read more on this subject you can download our leaflets on planning for the future here.