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34. Closeness, knowledge and stories: end-of-life care planning when we cannot speak for ourselves

Written by Andrea Bruun, Research Associate, Kingston University.

Why should we even do end-of-life care planning? We asked people that question in our focus group study. The reason we kept hearing was “you never know what’s around the corner”. People in our focus groups told us that in case unexpected events would happen, it was particularly important to have end-of-life care plans in place. This was to ensure that the person’s wishes and preferences were met and respected, especially if the person could not speak for themselves. This applies to every single person of the population; we want to make sure that we give people a death and a funeral that we know that they would have wanted. That is why we consider and discuss planning the end-of-life in the first place. However, people that do not communicate in formal ways, express what they want and like in different ways. This is often the case with people with severe and profound learning disabilities. So how do you do end-of-life care planning in these situations?

We asked our All Together Group that question, how to do end-of-life care planning with people with severe and profound learning disabilities, and introduced them to some academic research. Our group watched this webinar with researcher Jo Watson presenting some of her research (go to around 10 minutes into the video for Jo’s bit, it finishes around 23 minutes in):

Our scoping review identified this fascinating paper, also by Jo Watson and her colleagues – you can have a read here. Building on this work, here is another interesting paper on the topic. This piece of research is all about how close relations, knowledge, and stories about a person can be useful when making end-of-life care plans.

The authors share some beautiful stories about how people with severe and profound learning disabilities have their preferences and wishes met at the end-of-life. This is done by coming together and using the knowledge of the person. The research shows us how little cues about what a person enjoys in their daily life can be used in an end-of-life care plan. For example, how someone loved water and always sat by the water can be interpreted and used at the end-of-life by making sure the person is near water, has regular baths, and hears babbling brook sounds.

The research also presented stories involving important decisions about undergoing treatment. For example, not to undergo a tracheostomy which meant that the person died. Such a big decision was made by people who knew the person well, and they knew how undergoing this treatment would make life horrible and unbearable for the person. The people around the person discussed this video of the person having had a similar procedure in the past where they were really uncomfortable and unhappy. This video was a crucial cue and argument in the decision-making process. This story is similar to Victoria's story, one of the people this project is named after.

Our focus groups with both people with learning disabilities, families, support staff, service managers, healthcare professionals, and policy makers taught us a lot about end-of-life care planning. One of the important things we learned was that people with learning disabilities want to do end-of-life care planning with people who know them well and that they trust. These are key attributes of someone being involved in end-of-life care planning. If we cannot make our decisions ourselves, we want the ones who know us the best to make them for us or help us out.

The stories in Jo Watson and her colleagues’ research really moved me. The point about how little things, small cues, about us can be used in our end-of-life care was beautiful. It also reminded me that even when we think we do not know what someone would want, we can often make a good, qualified guess. Especially if we stick our heads together, share stories and talk about what we know about a person – two heads are better than one. It also made me aware of all the cues we give away to people every day, little signs to the ones who may one day make important decisions with or for us. It made me think about making sure to let people know what is important to me while I can. On the contrary, it also made me feel comfortable. I know I have some good people in my life who, if they stick their heads together and talk, would use and interpret all my cues just right.

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