Giving people the care they want at at the end of their lives

For people approaching the end of life to receive high-quality care, it is important for them to have the opportunity to talk through their preferences about treatment and care with the staff looking after them. While there is NICE guidance available for this, professionals still need help to instigate these conversations. Thiscovery worked with NICE and THIS Institute to explore what was holding professionals back, and to support better and more consistent uptake of these important conversations.

Participants

636 people: health and care staff, people approaching end of life and their carers, and stakeholders from related third sector organisations.

Methods

Online surveys, interviews and consensus-building techniques. The work on Thiscovery was complemented by offline work with two advisory groups.

Impact

This project generated evidence-based recommendations which could improve the experience of people planning treatment and care at the end of their lives.

Delivered on behalf of:

What we did

Engaged with 636 people including health and care professionals, people approaching end of life and their carers, and stakeholders from related third sector organisations.
Interviewed participants using Thiscovery’s online interviewing system.
Built a survey with a variety of different ‘routes’ – allowing the team to ask different participants a different set of questions depending on their background, their experience and their answers to questions earlier in the survey.
Held a concluding consensus-building exercise, letting participants with a range of different backgrounds, experiences and professional roles come together to design new approaches.

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Key insights

The methods described above allowed the team to engage with a diverse group of people, all with personal or professional experience of end-of-life care. Through their insights the team could identify some fundamental principles to guide high-quality conversations about end-of-life care preferences, including:

1

The fact that conversations about end-of-life treatment need to be initiated sooner than they often are, even if the circumstances aren’t perfect.

2

A recognition that these conversations are complex and should cover a wide range of issues.

3

A collective agreement on what the issues are, and an agreed set of topics that might be drawn on in these conversations and in standardised documentation.

4

The need for a way to communicate someone’s preferences between all the people who may care for that person at the end of their life.

5

The need for further training and support for certain groups.

Improvement in action

This project has identified ways to tangibly improve end-of-life treatment and care, generating recommendations on how to approach conversations about planning end-of-life treatment and care and suggestions on what these conversations should cover.

The work also resulted in the development and testing of an approach for NICE to use when exploring other guidelines where implementation is patchy or inconsistent.

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