55. The need for relationships at the end of life

I have been thinking about this: How can we support people’s ongoing need for relationships as their lives draw to a close? This may be especially important for people with a learning disability. To be ‘seen’ and known as a person, they rely on the relationships, community and social structures that enable them to live their own life. 

Listening to people’s experiences

For the past year, four of our DAPPLE researchers have spent time with people with a learning disability who needed palliative care, some of whom were nearing the end of life and some of whom have now died. Andrea, Jonny, Ned and Frankie got to know them, listened to their families and carers, talked with their home managers and nurses – and went to several funerals. Why? Because we need to learn from the people who matter most in this study. We need to hear their stories. We need to understands what is changing in someone’s life as they get more ill or frail, what their needs and wishes are, and how those around them are managing to support them.

The four researchers shared this (anonymously) with the whole DAPPLE team, including our co-production group of eight people with a learning disability. We all followed the stories as they unfolded, we thought about them, we talked, we asked questions, we pondered. After a year, there’s a lot to process. A few weeks ago, nine of us spent two days together to try and make sense of it all. What are the common threads? What do we want to see more of, because it is really helping people? What is not working well? Here are some of these common threads.

Relationships as a protective factor

Here are some of my notes at the end of these two days of shared reflection:

“From all the stories, this shone out. The ‘protective factor’ provided by people’s continuing relationships with those that matter to them: family, support workers, friends. Support workers who know you well, who know how you communicate, and who see you as a person. Family who are part of the fabric of your life. These are the people who can advocate for you. They are also the people who know what matters to you, what makes you tick, and how you might continue to be yourself through this even if you are no longer able to do the things you liked to do before.

The importance of relationships does not seem to be recognised as a factor in palliative and end-of-life care provision. There is a lot of focus on ensuring people’s physical needs are met, their symptoms controlled, their care package designed to ensure people can be physically looked after. But is the need for relationships taken into account when making decisions around where and how people are supported?”

Focusing on physical needs risks neglecting other needs

There are new needs that must be met as people get older, more frail or ill. The most obvious new needs are the physical ones. People may need more help to eat or walk or wash. They may need different medication, treatment for infections, perhaps things that prompt hospitalisation. Where previously someone’s need was met by social care providers, now there are additional needs that are seen as a healthcare need, not a social care need.

Someone with Down syndrome who has lived in his home for many years, with mates he’s been friends with since childhood and support staff who have known him for decades – and who now has dementia and can no longer get out of bed, so there is talk of moving him to a nursing home. There is real fear among his family and the care home staff, because they remember how he was stripped of his personhood during a long spell in hospital, without the presence of the people who knew him and the social structures that made him who he was. He almost died then, but slowly revived once he was back home.

It is also possible to lose some of your personhood if your new frailty means that you can no longer go out and see people or do the activities you enjoyed. Your body may be cared for – good nutrition, medications on time, plenty of rest, no pressure sores – but to live your life fully until the very end of your life, you need more than that. You need people to help you stay connected. You need people to ‘see’ you and know you. 

In the stories we hear, we see home managers, support staff and families (especially families!) who are very good at this. They speak up for the person, they know what makes a good day, they care. Do I dare say the word: LOVE. This is what we need, all of us, because it makes us human: we need people who love us.

But it is too often something that families and carers have to fight for. They fear moves to hospitals or nursing homes. They fear that without the presence of familiar people, the person they love will stop being who they are. And how can you end of life well, if you lose your personhood?

We have also seen how easily someone’s personhood can disappear because their world has become too small as they got more ill or frail. Days spent at home with care staff who don’t know them well, or who don’t know how to help them live a good day, or who are too stretched or unsupported to be able to give good support. Not able to see friends at the day centre, but those friends do not visit either, because they too need support for that. Day-to-day staff not sharing in the deep knowledge of previous staff or far-away family. The loss of a life story can be poignant at someone’s funeral. 

The answer is not simple or straightforward. It is not a just a question of “where should this person be cared for?” There may be very good reasons why someone should move to another setting. I have written about this before, almost two decades ago now: “Features of a good place of care included being in safe surroundings with familiar people, being free from pain and anxiety, and having carers who were well supported.” 

These key words keep coming back to us: Familiar people. Well supported carers.

Ubuntu: “A person is a person through other people”

Perhaps we need to look beyond the world of western medicine and see what we can learn from other cultures. Last week, I spent a few days in Geneva with an international group of experts. We were thinking about how to make palliative care policies more inclusive and less ageist (my place at the table was thanks to what we’ve learned about inclusion from people with a learning disability). Coming straight out of the thinking-about-the-DAPPLE-stories days in London, I was hanging onto every word from our colleagues from the global south. Jaco Hoffman (professor of gerontology in South Africa) and Christian Ntzimira (palliative care physician in Rwanda) shared their knowledge about the concept of UBUNTU: “I am because we are”. 

Jaco put it like this: “It is about protecting the person by supporting the relationships that sustain care… How do we strengthen relational care without making families carry impossible burdens?”

Christian explained the foundation for end-of-life care in Rwanda: "When you are well, you belong to yourself but when you are sick, you belong to your family." I look forward to reading his book, The Safari Concept: An African framework for end of life care.

 We have much to learn. It’s one thing to look at problems, but quite another to look at possible ways to address them. How can we create end of life care policies and practices that truly meets people’s needs, all their needs, including their need to belong?

I’d love to hear your thoughts about this. Do let us know!

And do come to our webinar on 11th June, where Jonny and the co-production group will help us think about Alex, one of the people we’ve got to know in the DAPPLE project.

Written by Professor Irene Tuffrey-Wijne, Professor of Intellectual Disability and Palliative Care at Kingston University.