End of life care plans provide relief and healing
As professionals we always think of advance care planning as providing choice and control to patients while enabling us to deliver the best care at the end of life. The reality of working with someone on their advance care plan shows that the impact is even greater, writes Mireille Hayden, Senior Partner at Gentle Dusk.
Our Future Matters programme in Islington delivers over 100 consultations a year with 60 end of life care plans being put in place. But that’s just the numbers. There are some really heartfelt stories behind our work, stories of people being truly touched by writing their plans.
Caitlin is a lovely Irish lady with a warm and kind manner. She is so positive about putting her end of life care plans in place, she wants to tell the world. You can’t help but feel a hint of regret, though, when you hear her story; regret that families aren’t quite perfect or family members aren't always kind to each other and regret that you can’t make things better.
Caitlin lives in Islington and is married to John, 63. Like Caitlin, he is Irish, and when you talk to Caitlin you quickly realise her home country is a significant part of who she is and ultimately linked to a painful past.
Caitlin didn't know where to turn
Caitlin heard about Future Matters from a friend who attends an exercise class at Age UK Islington. Her main reason for coming to Future Matters was because she is 71 and her husband is 63 and they often think: “If something happens to one of us, what would the other one do? I wouldn’t know where to turn.” Before making her plans, it was all a real worry for Caitlin. She rang Future Matters Islington and made an appointment to see Maisy, one of the Age UK volunteers trained by Gentle Dusk. “I felt completely comfortable with Maisy," she said. "I didn’t feel judged or feel anything negative from her about my story. She was open-minded and took everything I said on board."
Caitlin and John are estranged from their families because, says Caitlin, the Irish still "don’t take too graciously to being married, divorced and then remarried". She continues: "I have bent over backwards trying to make amends for something that happened over 40 years ago. I am now in a situation where I have no contact with my children, grandchildren or anyone in my family.” Caitlin last tried to make contact two years ago to no avail. She feels her family is trying to punish her and has resigned herself to letting go of them. “I want it made clear that I don’t want any of them to come to my funeral. I want it written down: I don’t want them to be there when I’m dead if they cannot be here when I’m alive." There's no denying Caitlin's strength of feeling as she continues: “I know that sounds terrible but that’s where I’m at, at the moment, anyway."
"I feel like I'm finally being heard"
Caitlin has completed an Advance Care Plan with Maisy. She has written down where and how she wants to be cared for at the end of her life and key wishes around her funeral. This has helped her greatly in putting the past to rest. "I feel like I’m being heard with something I have had a problem with all my life; people just don’t take any notice in my family of what I say. I’m irrelevant. Now I’ve written this down and given a copy to my doctor."
Catlin was also able to finalise her will, having received free advice from the Age UK Islington team. “I was so pleased with doing all my plans that I sent my husband to write his Advance Care plan too. It’s a great relief to have it all done." The team at Gentle Dusk and Age UK Islington are really happy to have helped her, too.
For information about Future Matters and how you can implement the programme in your area, commission the training or join our train the trainer programme, contact firstname.lastname@example.org or visit www.gentledusk.org.uk.