Advance and Future Care Planning

Advance or future care planning is an ongoing process of conversations about what matters most to you. It brings together individuals, the people who are important to them, and health and care professionals to explore future wishes, priorities, values, and preferences for care.

These conversations help people express what is important to them and, where appropriate, record their wishes. Research shows that when people have the opportunity to plan ahead, their choices are more likely to be understood, respected, and reflected in the care they receive.

Traditionally, advance and future care planning has taken place within healthcare settings, with conversations between individuals, clinicians, and family members that often lead to a written plan which is reviewed over time.

However, this approach does not work for everyone.

Many people are not connected to health or social care services, or face significant barriers that make these conversations difficult to access. Discrimination, poverty, social exclusion, structural disadvantage, and unequal access to services can all prevent people from having the opportunity to plan for the future.

At No Barriers Here, we believe advance and future care planning should not be limited to clinical settings. By working alongside communities, using inclusive and accessible approaches, we create safer spaces where people can explore what matters most in ways that are meaningful and centred on their lives.

No Barriers Here adopts a public health approach to palliative and end of life care by working alongside communities who are often living well but experience inequity throughout life, and at the end of life. Rather than waiting until people become seriously ill, we create safer, inclusive spaces within communities where people can begin thinking about what matters most to them and plan for the future.

Our workshops take place in familiar community settings and encourage people to explore their wishes, values, and priorities before a health crisis occurs. By moving conversations beyond clinical environments, we remove many of the barriers that traditional healthcare systems and paperwork can create. Through a series of facilitated workshops, participants have the opportunity to consider future care and discuss what is important to them.

Co-producing a Different Approach

The first phase of No Barriers Here was co-produced with people with learning disabilities to explore how creative, arts-based methods could support conversations about death, dying, and future care planning in ways that were less reliant on words.

Over three workshops, participants used artmaking and creative activities to express their thoughts, values, and preferences for end of life care. Rather than completing a traditional form, they created a personal, visual advance care plan that reflected what mattered most to them.

This work demonstrated that advance care planning can be inclusive, empowering, and accessible when people are supported to communicate in ways that suit them.

Challenging Inequity

The project also produced a short film that challenges common misconceptions about discussing death and dying with people with learning disabilities. It highlights the value of creative approaches in palliative care and raises awareness of the inequities that people with learning disabilities continue to experience in accessing advance care planning and end of life care.

A Collaborative Partnership

No Barriers Here was developed through a partnership between The Mary Stevens Hospice, Dudley Voices for Choice, and an Arts Psychotherapist. The project was funded by the Masonic Charitable Foundation and managed by Hospice UK.

Together, this collaboration laid the foundations for an approach that has since grown to work alongside a wide range of underserved communities, helping to make advance care planning more equitable, inclusive, and accessible for everyone.

‘Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.’

International Consensus Definition of Advance Care Planning (Sudore et al 2017)

‘My sister and support worker are important to me. I would want them to help me make decisions.’