Dying Well: Wellbeing at the end of life

A summary of practitioner conversations from the What Works Centre for Wellbeing

The Big idea

Wellbeing matters for everyone at any stage of life, and the end of life is no exception. We wanted to understand what matters to people with terminal illness and how society can support their wellbeing for as long as possible. The evidence about what matters is spread across academia, policy and practice. We also intentionally sought the knowledge, insight and expertise from people living with a terminal diagnosis.

Together we shared learning and identified areas for future research and practice improvement.

In April and May 2021, the What Works Centre for Wellbeing brought together practitioners, academics and individuals to talk about what really matters to people with life-limiting or terminal illness, and how to develop support which puts their wellbeing, and that of their family and close relations, at its heart. Through these conversations we explored how we can support people to live well with a terminal illness, how to value the things that matter, and how to use evidence from across sectors to provide better services for wellbeing. This briefing provides a summary of three topics:

1. Wellbeing conversations at the end of life.
2. A good place to die.
3. Understanding and measuring wellbeing at the end of life.

Recommendations for practice

We found that more could be done to place advance care planning as part of more general life planning.

Often conversations about dying well occur too late to maximise an individual’s wellbeing. This is particularly problematic as an individual approaches the end of their life. Research and practice experience suggest this occurs because health professionals fail to explicitly identify individuals as being in their last year of life, lack confidence to ‘have the conversation’ and because a lack of system interoperability makes developing and delivering shared care packages, in partnership across a range of organisations and sectors, highly complex. If patients are not identified as nearing the end of their life, it is unlikely they will access palliative support and receive holistic care where there is a wider focus than survival.

Dying well conversations framed to reflect changing needs and preferences across the last 12 months of life, rather than the last few days of life, had the greatest potential to be wellbeing enhancing.

This was especially so, when consideration was given to maintaining purpose, for example where:

• Individuals were supported to continue working.
• Care looked at health beyond diagnosis, for example support with exercise, sleep and nutrition.
• Maintaining social support and connections was given priority.
• High quality end of life care was considered to have a focus on the fact that an individual was still living as much as it was on the fact that they were sick enough to die; and where metrics looked beyond survival.

Approaches that considered the wellbeing of partners, children, family and friends at different time points, as individuals moved towards the end of their life, were wellbeing enhancing.

We heard real world examples of how health professionals learn to have difficult conversations and how this can be enhanced with an understanding of conversation science. Research exploring how people use online platforms to talk about end of life shows they provide comfort, become a repository of collective knowledge, and community to share personal experiences.

The following six areas of research interest were identified to more fully understand what matters to people with terminal illness and how society can maximise their wellbeing for as long as possible.

Conceptual review

The evidence on dying well, palliative and end of life care, is scattered and tends to be focused on single population groups. There is a lack of clarity about definitions of dying well, wellbeing and related concepts of quality in care towards the end of life; and how it should be evaluated, measured and applied in policy and practice.

What does wellbeing at the end of life look like? What matters? For individuals? Family? Close partners?

What are the drivers of personal subjective wellbeing at the end of life? What drives differences in these?

What are the unique factors of context at the end of life?

Understanding wellbeing needs at the end of life: what would a wellbeing assessment look like at the end of life?

Measures

What are the best measures of wellbeing at the end of life?

What are the best measures for different groups for example individual, family, close relations, non-normative family structures, friends, community?

What are the best ways of collecting this data?

Can we identify standard measures and idiosyncratic measures that can be tailored to reflect an individual’s needs and preferences?

What would context specific measures look like, for example assessing the effectiveness of interventions that support someone with a terminal illness to continue in the workplace?

How could measures reflect equity, inequality and different experiences?

Cohort identification

What are the best ways to identify the cohort of people who are approaching the end of their life? Is this easier/more possible with some conditions rather than others?

How can we improve prognostication for health professionals and individuals?

Care

What are the best ways to embed wellbeing as a goal of end of life care?

What does good end of life care that maximises wellbeing, physical and mental health look like?

How does the implementation of standards for end of life care affect wellbeing?

How is wellbeing affected by palliative care interventions? What works to improve wellbeing in palliative care?

Would a more holistic, less medicalised model of palliative care have greater wellbeing benefits? What would change, for who and in what context?

How do we bring symptom management to the fore in treatment plans, and raise people’s expectations of working for wellness; not just minimising sickness?

What role does good record keeping/decision making/processes play in maximising wellbeing at the end of life i.e. doing the basics well? Can lessons be drawn from behavioural insight?

What works to maintain social connections and relations at the end of life?

What are the best ways a community can support someone to die? What are the networks that come into play?

How do we reshape public dialogue of what palliative care is? How can we build awareness that palliative care can be wellbeing enhancing and shift perceptions from end of life to symptom management and wellbeing?

Wider wellbeing impacts of death, grief and loss

If your life experience is different to that of your peers, for example, you are widowed at a young age, are there different wellbeing impacts?

What is the impact on wellbeing of the experience of loss: understanding acute dips in wellbeing. And what works to start to shift the dial?

Advance Care Planning

What’s the impact on wellbeing when Advance Care Planning and End of Life Care are decoupled?

What’s the impact on wellbeing when advance care plans are followed, and when they aren’t followed. What’s the impact of doing what matters/bespoke-by-default?

Read the conversations