The Connection Between Advance Care Conversations and You

What Brought You Here? Your Stories. Your Experiences. Your Care.

“How people die remains in the memory of those who live on.” Dame Cicely Saunders

What Brought Me Here… Mary Matthiesen, Director The Conversations for Life Programme Stories to Change, CIC

What is it? An Approach A Programme or Workshop An Integrated, Community Intervention

Conversations for Life are conversations that can help individuals, families and professionals explore and impact our quality of life care in the future. Why talk about the future now? –Most people have experiences that inform what they would want for their care, but they haven’t told anyone. –Medical treatments, our communities and our care needs have changed. –Legislation gives rights to the individual around choices for our care, and –Healthcare professionals are required to ‘act in our best interest’ …..

Yet, how can anyone act in our best interest if we haven’t explored what that might mean, haven’t learned what our options are, and haven’t told anyone what matters most to us? “It’s like you’re in a bubble and you need to make some of the most important decisions of your life.” -Mrs. B, Cumbria The worst time to begin these conversations is when they matter most …

Today is a ‘taster” –Introduction to the Conversations for Life programme –Explore your personal and professional beliefs around advanced care planning –Strengthen confidence in talking with patients or family members about their wishes –Break the taboo of talking about death and dying in order to influence end of life care. –Share outcomes of the pilot project in one community

There is no wrong way to do this. There is only your way. And your way is the right way for you

Your Experience …….Is……

What Brought You Here? A ‘good’ death.

Your Wishes. Your Preferences. Your Care. A practice in listening…...

“I know I’m going to die…. I just don’t want to be there when it happens!” Woody Allen American Comedian.

The Pilot Project Background & Outcomes.

The Pilot Project with NHS Cumbria ‘Promoting quality of life and independent living by increasing self-management of care and choice in end of life care as one if it’s 10 World Class commissioning priorities.” “Although most adults would prefer to die in their own home, 22% of Cumbrian’s currently do.”.

The Pilot Project Aims “To develop and offer the first phase of a Cumbria-wide, community based public and professional engagement campaign around end of life (advance care) conversations and care.” To increase awareness of the importance of advance care conversations. To raise awareness and access to resources available to support the public. To encourage/catalyze these conversations between individuals, family members and professionals is the focus of this project. Background & Outcomes.

A public awareness and education initiative around ‘end of life’ conversations and care Inspired by the stories of local people (in Cumbria) Supported by NHS Cumbria and partner organisations to: –Raise awareness of the importance of ‘advance care conversations’ for individuals, family members and communities –Help people to know what resources exist, and –Support people to learn how to begin these conversations to influence your care for the future. Includes –Cross sector steering group –Quotes and Short film of stories of people living in Cumbria –Designated Website –Community based events and workshops The Pilot Project

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Basic Premise We can’t honour someone’s wishes if we don’t know what they are. We can’t be truly open to talking with others about their wishes if we fear opening the conversation ourselves. We will all need to communicate our wishes if we want them to be honoured. A practice in listening…...

Pilot Project Outcomes & Lessons Learned In only 3 months since it’s launch *Website has had 3645 visitors with an average of 23 visitors per day. *Media (BBC Radio Cumbria and locality papers) are estimated to have reached more than 200,000 with positive stories. 93 members of the public attended 11 workshops in 6 localities across Cumbria. Participants included both public and professionals.

Workshop Evaluations indicate the project to date has been successful in achieving the outlined goals for the campaign. On a scale of 1-5 (5 being high) Did you feel you learned something useful about how to: a.Open these conversations b.Explore what matters most to you c.Make informed choices d.Let people know your wishes e.Access resources over time f.Begin to create a plan for your future care 83.6% responded with a 4 or 5 out of 5 How likely are you to implement your new knowledge? 89.5% responded to the following question with a 4 or 5 out of 5 And 97.5% would recommend the workshop to others..

There are many more options open to you than I was aware of. It made me realise how we will have to be strong and fight for what we want. To open a conversation with my mother and also with my husband. I think I'll be more bold. Talking to parents getting wishes shared with all children to if anything happens we are all on same page! Need to think about it now not later. How natural conversations for life could be if introduced in a casual / professional / personal choice way. To say what I like / dislike in case I cannot communicate to carers. This workshop has been inspirational. Thank you so much. Very useful. We need more information well presented like this. Practical and useful This course should be introduced specifically for professionals, as well as public, as I know many of my colleagues would have found this useful Hopefully more of these workshops could take place, to make people realise they have "choices".

In addition, The National End of Life Care Programme (DH) has endorsed the Cumbria Conversations for Life initiative with the following statement:

This is both a fantastically practical and poignant project which could help thousands of families in Cumbria and beyond. Talking about and planning the care we wish to receive in the final weeks and months of our life is a crucial first step towards the good death. Health and social care staff, backed by many selfless volunteers, provide care and support to those nearing the end of their lives and their families. The more that individuals and their families have talked about death, dying and how they wish to be cared for, the more that care can be matched to the individual’s wishes and needs. It will also help staff and volunteers provide bereaved relatives and friends with the support they need, as well as often improving the inner strength and resources which bereaved people can call on to cope with their loved one’s death. We know that many parts of our society have not yet hurdled the cultural barriers to talking about death and dying. This project is another – very welcome and innovative – leap in that process. Claire Henry, National Director National End of Life Care Programme

“How people die remains in the memory of those who live on.”. The Conversations for Life Programme provides a simple first step to overcome fears of talking about death and dying based on the real stories of local people… With tools for individuals, professionals and communities to start the conversation now.

The Conversations for Life Programme is now available for collaborations across the UK