We recently held our first event in Dying Matters week, which was well received. Our event, Lets talk about Dying Well, welcomed 30 clients, staff and supporting organisations to engage in an afternoon of conversation, music, film and creative activities. Guests chatted to each other, talked to our stall holders and joined in a panel discussion to find out information about all aspects of death, dying and bereavement.
Death and dying is a topic it’s hard to talk about, but it doesn’t have to be that way. We had a dynamic panel discussion about the topic.
Dr Catherine Zollman – Clinical Director at Penny Brohn UK
Catherine spoke about meeting a young woman early on in her work with Penny Brohn UK, when it was still the Bristol Cancer Help Centre. This young woman was dying from cancer, and yet Catherine could see that even as her body declined something was growing in her; something that she didn’t recognise from medical training or witnessing deaths in hospital; something that was both beautiful and powerful. She spoke about “walking the tightrope” and finding the balance between hoping for the best on any given day, preparing for the worst, understanding what is the most likely and looking for small and simple things that may help make the best a little more likely day by day. She left us with the image of a tree covered with ivy that nonetheless blossoms as a metaphor for living well even with advanced cancer.
Janet Waldron – Nurse Specialist – Dorothy House Hospice. Janet Walton – Clinical Nurse Specialist – Dorothy House Hospice
Dorothy House is the Hospice that covers Bath and NE Somerset, half of Wiltshire and the Mendip area of Somerset.
Janet took us through a case study, describing the kind of work she does and how it helps. She talked about the first meeting, where a client might be very closed and resistant, thinking that a hospice nurse is going to talk about death. But what she actually talks about is what is most important to the client – what are they looking forward to, what are they hoping for, what matters most to them. That first conversation probably doesn’t mention death at all, and at the end of it, the client who was tense and resistant, is relaxed and communicative. It is important to help patients live until they are dying.
Janet spoke about an 81 year old patient with renal cell carcinoma who wanted to die at home but had a lot of symptoms alongside a longstanding history of anxiety. The patient and husband would each feed the others anxiety exacerbating the patients symptoms. She talked about ways of helping people manage anxiety by having more control. In this case, that patient’s anxiety was greatly eased when her husband had some medication he could give her. He felt more in control, so her anxiety did not frighten him so much. Janet also emphasised the importance of making our wishes for our death known. The patient was admitted to Dorothy house for symptom control and respite for her husband on the understanding she would come home to die as this was her wish. It is important where possible to talk about your wishes remembering for a lot of people this is completely new and unknown. It may not go to the initial plan for lots of reasons and the wider team will always have other options or ways of supporting patients and families as someone is nearing the end of their life.
Jennifer Noel – Compassion in Dying
Jennifer talked about the work Compassion in Dying does in policy and research, highlighting the gap between the number of people who want more control around their death and the number who have taken active steps to gain that control, such as writing an Advance Directive. She used a personal example to describe how having a family member who knows what you want and can advocate for you when, and if you no longer have capacity, can make the difference between spending the last weeks and months happily at home with family, and spending them travelling to and from hospital. She talked about the practicalities of planning ahead and the importance of open communication.
Jenny Evans – Penny Brohn UK Charity Champion
Jenny talked about her own experience of living with “incurable” cancer, and the realisation she came to that the only way for her to cope was to live each day as it comes. She also emphasised the importance of planning ahead, so that worries about the future interfere less with life each day. She challenged our tendency to judge a life by how long it goes on for, reminding us that our lives are more than the number of years stuck on the end of them and that the most important thing for her is that she goes on being able to contribute, even on her death bed. She stressed the importance of accepting death and learning how to die, wishing her legacy to her teenage son to be that he does not fear death.
The talks from the panellists were followed by questions and discussion from the floor. In particular these highlighted the difficulty of accepting early death, in particular when young children are involved, and the reality and the pain of grief for ourselves and for our loved ones. We discussed the idea that there is something in us that goes beyond the body and talked about control, and lack of control.
Our Therapists and Facilitators are available to provide support to talk about living well and dying well. Just call 0303 3000 118 for more information. You can also visit our library and read our book reviews.