Improving care

What patients need in the later stages of life

User research with those living with life-limiting conditions led us to identify user needs and a set of priorities.

What do people with life-limiting conditions need towards the end of life?

People with life-limiting conditions need to feel valued and heard.

When you are no longer able to be active in the way you once were, or continue with your work, you are already managing a shift in your identity. This can be exacerbated when you start to be seen as a "condition" or as one part of a body (for example, as a lung by a lung specialist). Adjusting to the changes in your life as you navigate through the new perceptions and labels given to you means that feeling valued and heard is so important. This is about power and visibility, about feeling listened to and understood.

Everybody seems to be an expert on what you should be doing yet I'm the expert in my condition.

- Sheila, living with COPD

Health isn't that my lungs aren't working today, it is also how I'm feeling.

- Mark, living with COPD

People with life-limiting conditions need administrative tools that have been designed from their perspective

This includes wanting to know what is coming up in terms of appointments, visits or treatment; better ways of recording important information that can get lost in panic; or taking the right medication at the right time. As one person said, "You can track an Amazon parcel, why can't we see when carers are going to turn up." This was in the context of his wife whom he had cared for at home and during the last year of her life and they'd had many different carers coming in and out. Coordinating this care coming into their home, with their own lives, had taken up far too much of his time. Tools to help with recording, planning, coordination and visibility would be useful.

I panic when I am listening and then I don't hear it all, so I need a better way to record conversations or make sure I remember to have someone with me.

- Amrit, living with heart failure and Parkinson's Disease

People with life-limiting conditions need to be able to record their preferences over time

If someone's got as far as doing an advanced care plan, that's great, however it is often done in one moment of the day, and can feel like what you commit at the time is set in stone. People need to feel that they can plan ahead or record their preferences in a way that reflects the reality of their day-to-day lives and their changing feelings and emotions. Whatever people use to express their preferences needs to be flexible and adaptable over time.

I have to live differently and adjust to things all the time which means what I want and what I don't want changes too.

- Duncan, living with COPD

People with life-limiting conditions need to be able to trust those involved in their care and feel reassured by them.

People don’t start off doubting the accuracy of their medical records or feeling unsure about sharing information or about what they are hearing but with greater fragmentation of services there is more need for tools that can build trust and give reassurance. Building trust and reassurance through people’s care starts with consistency and familiarity; the same people visiting over time and the rituals of familiarity, the chance to build up relationships and understanding, having confidence that one has been understood correctly, by repeating information back to people.

If you know the people who are coming, you’ve got a trust in them, you’ve built that trust and it’s those people you want to see coming through your door because you know they’re going to help.

- Priyah, living with heart disease

Being known is really important. It helps for people noticing patterns too. You loose that when they keep chopping and changing the care.

- Duncan, living with COPD

People with life-limiting conditions need to look after their wellbeing.

Being diagnosed with a life-limiting condition doesn’t mean that you start preparing for the end of your life but about how you find ways to keep living life. Ways to feel well is an important focus for people and tools that can support people to be in contact with others, to keep to a routine, to set goals and to feel a sense of purpose are all a part of this. It’s important that wellbeing is understood as both the physical aspects that enable someone to live life and enjoy what is possible, and related things like diet and sleep; but also the mental wellbeing, the need for a sense of self-worth and feeling that one can still do something.

It’s not just about tablets, it about self-worth... you get a bit of self-worth when you come here because you do stuff... You think, actually, I can still do something.

- Mark, living with COPD

People with life-limiting conditions need to know about themselves.

This overlaps a lot with the wellbeing theme above but this is more specifically about self-management and ways to feel in control: tracking, monitoring and recording to be able to share with others if they wish but more importantly as a feedback loop for themselves.

I’m always tired, not the kind of tired that sleep can do anything for. You have to push yourself.

- Sheila, living with COPD

It doesn’t stop you from doing the things you want to do; you just have to learn what you can do, and how you can do and learn the things you can’t, so that you don’t just give up.

- Priyah, living with heart disease

People with life-limiting conditions have specific but changing practical needs that can be met.

If people with life-limiting conditions are asked what is important to them now, on that day, in that week, it is often practical things to do with seeing family, feeling more comfortable, advice on adjusting to a new pain, a new level of exhaustion and more restriction in what they can now do . This needs the input of a physiotherapist, a GP, or a counsellor. Someone who can identify practical ways of removing barriers for them physically, who can arrange for more suitable equipment to be delivered and also someone who can listen and give emotional support.

There are things about their current life they want resolved more than thinking about the future. The family will get it right for them, it will be alright in terms of end of life planning, but it is the NOW, how the every day can be better. Things about today matter more.

- Mark, living with COPD

We have patients who are adjusting to changes in their life. They are becoming less mobile, less able to do the things they used to do. Those are the things that people struggle with. How they manage that, how they cope with knowing that it is going to go on for a long time. I think that aspect of it is probably one of the most difficult and how you best support them. You want people to be independent, so you talk to people about what they can and can’t do and unravel learnt habits of what they used to be able to do but clearly can’t anymore.

- Sue, palliative care nurse