A Modern End of Life Conversation

Modern technology, me, my parents, tea and biscuits (To view photos  and samples mentioned, see links at end of article.)

The hesitation to talk

This is my Mum and Dad; we Facetime every few days. Before each call, they get their tea and biscuits ready using cups I bought them to match mine that they loved so much. I arrive at the screen with my coffee. It’s “our time”, chatting over a nice pot of tea and chocolate biscuits.

Today was going to be different because I wanted to share some of what I wanted around my end of life care. I sent them a copy of everything I wrote up in advance. When they appeared on-screen, you can imagine – they had a bigger pile of biscuits than usual!

I explained I had used the Conversation Game in training, and that it had inspired me to start looking at what I wanted for my life care if anything should happen to me. I’d had the information in a file for a while and finally assembled it into a format that would be useful to those around me. I have several long-term conditions and wanted to tell my Mum and Dad about what I had been doing and why. I know as a family we all have different religious and spiritual beliefs, and I couldn’t think of anything worse than the arguments about my care if I was incapacitated.


“You know what I want!”


My Mum listened and leaned in but wasn’t up for a conversation about her own wishes. She said my Dad knew what she wanted as far as a funeral was concerned. I raised an eyebrow. “But what about your care before you die? What if you get ill, fall, or have a heart attack?”

As usual, she pulled a face. I talked to my Dad, who, in his 80s and an ex-accountant, is like many of my family members, not much into talking about anything he wants when it comes to end of life plans. They all just think it’s about setting up funeral arrangements and the service. What use is that to them when they’re dead?

A surprising response

To my surprise, my Dad was interested in some of what I told him and understood why I wanted him to know what I’d want if anything should happen. Both my parents thought I would know what they wanted if it were the reverse – I had no idea.

My mum didn’t want to look through the cards; she repeated that Dad would know what she wanted. I gave him a card pack and explained the basics of how they worked. He didn’t want to discuss it in person (which was mostly the point of the game for me). So, I asked him to find three to five cards that resonated most with him and three cards that he knew he didn’t want, just to get us started.

Being thorough and an accounts man, what he sent me following our Facetime chat, was an Excel spreadsheet listing all 36 cards, with a second column stating what each means to him. It was amazing!

His accompanying letter read:


“I sat down today and for two hours went through the cards you sent me. Next to each, I have put my immediate reactions to the cards. Hopefully, they will inform a more considered document.

Looking forward to discussing it with you.


Dad x”


A powerful outcome

I learned things I never knew. I had ideas and thoughts validated. Dad gave lists of who he’d like to do what. He talked about his funeral, his family, his friends, his care…all from his immediate reactions. He decided to turn it into a plan and sent my siblings and me each a copy. Some things still need more in-depth conversations in terms of what precisely that meant…but…wow!

That was an outcome, and totally in his own style.


to view photos or a sample of the Excel spreadsheet mentioned above, click below:

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Test Announcing Two New Resources

How do you start the conversation?

To read our latest newsletter online click here or see below.

There is much written about the need to start the conversation. For patients and families, the why matters most. “To get the care I want.” “To have a say in my care.” “To be treated with dignity.” Once people understand why the conversation is important to their future care, the what and how are easier.

“Whenever we use the Conversation Game within a session on ACP the trainees give positive feedback, often stating that it puts it into context and offers an opportunity for excellent interactive learning.” -GP Commissioner

What’s The Conversation Game?

The Conversation Game helps to facilitate exploring patient wishes and values.This deck of 36 cards provide an easy way to think and talk about what’s important if you were to become seriously ill. Each card has a single phrase on them in large print, based on research of patients and carers facing the end of life and the key things that would matter most to them.

Used now by thousands of health and social care professionals, educators and in each of our facilitated training and community engagement processes, the research based* Conversation Game is the one tool that assists the public, staff and communities to start the conversation. It is nearly impossible to see the phrases on the cards and not have an opinion, a reaction, a response-all of which are conversation starters.

Developed originally by a group of hospice and palliative care organisations in the US, to assist people in starting (ACP) conversations.They have been reviewed and amended by the Lancaster University End of Life Care Observatory Peer Educators, and used in the nationally endorsed Conversations for Life public health pilot, and now are being used by staff across health and social care in the UK and abroad. Most recently, a study reported patient’s preferred the use of the Conversation Game Cards to a list approach of statements of wishes: J Clin Oncol 33, 2015 (suppl 29S; abstr 44)

You’ve spoken. We’ve listened. We hope to help as many educators, facilitators and staff add our approach and tools to your toolkit, as part of your own awareness, education or community engagement initiatives in 2016. With requests internationally about the Conversations for Life approach and materials, we have spent the last 6 months re-designing ways we can help support you to achieve the benefits we have seen facilitating more than 2000 staff, 8 communities and hundreds of members of the public to engage in the conversation.

“Years on, I’m still using the tools with patients and families.”-Admiral Nurse

Each newsletter, we will be launching a new product or pack with instructions for use by facilitators, staff or educators internationally.

This newsletter’s special: The Conversation Game “An FY2 reflected that he identified family was so important to him using the cards but he hardly acknowledged the family involvement of his patients in his work, he vowed to alter his practice to explore further with his patients how much to include family in information and decision making.”-GP Commissioner

“I attended a workshop for Chaplains and had terrific feedback from the use of the cards. Well done.”-PHINE Network It helped our patient who couldn’t speak have the conversation…

“A patient of ours was severely agitated, yet couldn’t speak due to a trach. Our team couldn’t find a way to help her communicate. I’d been on your course and had the cards with me. I told her that we knew something was bothering her, and we wanted to help her. I showed her the card pack and said, there were phrases on these cards that others found important-concerns, wishes. I left them with her and said if she felt like it, to take a look. No pressure. And they may not speak to her. Yet if any of these phrases were her concerns, to let us know.

The next day, her daughter was visiting-sitting on the bedside of her mother. There was a single card on the bed between them. “Not to be a burden on my family.” They both wept and hugged. It allowed them to express what they needed to. Her anxiety and agitation dropped significantly afterwards.” -Acute Trust RN

Compassionate communities? Three new ways to engage

If you or your organisation are looking for new ways to engage staff or the wider community in end of life conversations and care, here are three new opportunities that we hope may help you make a difference for your communities. 1) New stories engaging minority communities in end of life conversations and care

With thanks to our partner, The Greater Manchester, Lancashire and South Cumbria Strategic Clinical Network, and all those who shared their stories with us, we’ve nearly completed Through Our Eyes. This film based initiative shares stories from Afro-Caribbean; Hindu, Jewish and Muslim traditions to increase staff sensitivity and raise community awareness to improve care for all. To inform the launch, we facilitated a region-wide stakeholder summit of commissioners, care staff and community members on 1st April 2015. To view the film trailer now and request to be notified when the film and guides are available to order go to www.storiestochange.org

2) New Approaches Conversations for Life Train the Trainer

We are excited to offer a new training for experienced educator/facilitators who wish to add the CFL approach and materials to their ‘toolkit’ of offerings. CFL staff workshop: Simple Tools to Start the Conversation has now reached 2000 healthcare, hospice, social care, care home staff and those working with chronic conditions: memory clinics, cardiac and renal care across the UK.

If you or your organisation would like to share the success, reach and impact of this patient-centred approach and materials, email us at info@conversationsforlife.co.uk to receive an overview of the course, 3 -day training, and register to attend our upcoming session June 17-19 2015 or 8-10 July 2015.

3) New Communities Mapping Strengths: Community Convenor Facilitation

Engaging communities to come together in support of the ill, dying and bereaved has become a national and international priority. Pathfinder communities and the Compassionate Community Charter are paving the way. To learn more about how our community convener facilitation and process has supported organisations like yours to launch ‘living and dying well partnerships’, identify and engage the strengths and ‘assets’ across a community- including health, hospice, faith groups, voluntary sector, schools and more, see below for a free resource or contact us to discuss specific consulting or facilitation for your community. (BMJ Supportive & Palliative Care Journal, M. Matthiesen et.al., 2014) Care happens in communities. Knowing what already exists can help pave the way.

4) Free Resource for Communities

FREE RESOURCE FOR INTERESTED COMMUNITIES to learn from the lived experience of some of the projects to engage communities in public health and palliative care, view sample templates, reports and project overviews go to: le templates, reports and project overviews go to: www.conversationsforlife/community-resource/

Does someone you know have a story that could help others?  

Families from black, Asian and minority ethnic communities (BAME) are being asked to share stories and help shape a new regional awareness initiative across Greater Manchester, South Cumbria and Lancashire. The project aims to raise awareness of some of the end of life care issues and needs in the BAME communities across the SCN footprint in order to enhance communication between patients, families and care professionals, including hospices and palliative care teams.

For more information, please download a leaflet here or register your interest to receive an information pack by contacting: Keith Swindell Quality Improvement Manager – Palliative and End of Life Care, NHS Strategic Clinical Network for Greater Manchester, Lancashire & South Cumbria, Preston Business Centre, Watling Street Road, Preston, Lancashire, PR2 8DY Tel: 0113 825 4826    Mob: 07825 422444 Email: k.swindell@nhs.net

Dying Matters Awareness Week, 12-17 May 2014

Download a calender for a week of events in Lancaster here or go to www.DyingMatters.org to find events in your area!

Our New Years BMJ Article: End of Life Conversations and Care: An Asset-based Model for Community Engagement

An asset-based approach to engaging communities around end of life conversations and care! After a shorter delay and fewer edits than anticipated, we have been notified that the article we submitted “End of Life Conversations and Care: An Asset-Based Model for Community Engagement” has been published as an educational paper with the BMJ Supportive and Palliative Care Journal. Many thanks to my co-authors and all of the organisations who were willing to participate in Cumbria and across the Northwest, and to John McKnight and the ABCD Institute for their inspiration for this work and approach. There’s much still to do and learn, yet I truly believe this approach is  a step towards a brighter future of compassionate communities for us all. http://spcare.bmj.com/cgi/content/abstract/bmjspcare-2013-000516.

New Resource for Communities Expanding The Impact Of Community Engagement Around Public Awareness Of End Of Life Issues: A Resource For Interested Communities

This e-newsletter has been developed as a resource for communities intending to undertake community engagement around public awareness and end of life issues (practitioners, strategic end of life leads and commissioners). Drawing upon a range of projects being undertaken in the north west of England this resource presents an overview including filmed video clips, PDF reports and resources of different projects, identifies the catalysts, what is working, challenges, lessons learned and suggests future steps. This resource has been funded by a Lancaster University, Faculty of Health and Medicine Knowledge exchange grant as a partnership between the International Observatory on End of Life Care and Stories to Change CIC.

This new report highlights the different approaches people and organisations have taken to developing Compassionate Communities across England to be diverse. The Conversations for Life programme is honored to be one of the initiatives included in this study.We hope you will find the report informative.

Compassionate Communities Final Report July 2013

2nd May in Liverpool – approaching communities about the last taboo

The Duncan Society are holding a Public Meeting on  Thursday 2nd May 2013 at 6pm at the Liverpool John Moores Student Union, Hague Building, Maryland Street, Liverpool.

The speaker is Mary Matthiesen from the Conversations for Life programme.

Title:    Conversations for Life: A Public Health Approach to Engaging Communities Around The Last Taboo.

Summary: The Conversations for Life approach and programme is proving effective in engaging communities (staff, public and community agencies) to overcome the fear of talking about death and dying now, in order to support more people to live their last days in the place of their choice in the future. As founding director of the Northwest based Conversations for Life programme and social enterprise Stories to Change, CIC, Mary Matthiesen will share elements of this programme and early evidence of success of partnership working with community-based Trusts, Public Health, Cancer Networks, Local Authority Care Homes and community voluntary agencies towards Regional and National goals including: increased staff confidence, enhanced partnership working between local community-based services and improved public access to local information and services. (www.conversationsforlife.co.uk)

Download a poster for the event here.

Download the slides from Mary’s talk here.

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