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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.

Love,

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:

Story of the Conversation Story of the Conversation Game 2019

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the Conversation Game

Expanding the Impact of Community Engagement

(November 2012) We’re pleased to be part of a ‘knowledge exchange’ with Lancaster Universtiy and to have held a stakeholder event of some who have initiated community engagement events around end of life conversations and care in the Northwest. Stay tuned for a resource to support other communities planned for the Spring!

Compassionate Communities Final Report July 2013

Delivering a public health initiative around end of life conversations and care (August 2012) In June 2012, Katherine Froggat, International Observatory of End of Life Care Lancaster University, Lancaster, presented Conversations for Life outcomes at the 7th World Research Congress of the European Association for Palliative Care (EAPC), in Trondheim, Norway.

View the poster ‘Conversatons for Life: Implementation of a pilot public awareness campaign about end of life issues’ here.

What’s Possible?  In July 2011 Conversations for Life Director Mary Matthiesen presented the attached presentation at the 2nd Annual International conference on Advance Care Planning and End of Life Care.  There is still a significant gap between what people hope for and achieve around end of life care. Yet what’s possible in communities if we work together around a common message and goal? This brief presentation offers her philosophy and approach, pilot project outcomes, a possible way forward, and an international invitation.  See also the 1 minute video clip below.

Link to the IACP website: http://acpelsociety.com/

This one minute film clip was also shared;

 

 

 

 

 

 

 

More good news…

The Conversations for Life programme is proving effective, inspiring and engaging the public, staff and communities in one of the most significant conversations of our time. Getting the care we want for our future depends on starting these conversations now.  How do we know….

Winter Greetings

Want some good news? We all want the best for our future care Although it doesn’t make the news, the public, staff, professionals, and commissioners all share this common goal. All care starts with conversations- between families, staff, systems, and communities.  As you reflect on your year, remembering those you care for, may you be reminded of precious moments shared and conversations that made a difference-but didn’t make the news.  Look who’s starting the conversations….

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