#159 What we need to learn about neurodiversity in relation to Advance Care Planning with Dr Emma Clare

Dr Emma Clare is a Chartered Psychologist, End of Life Doula, and founder of Death Wired Differently, a platform providing resources, information, and training on neuro-affirming approaches to death, dying, caregiving, and grief support.

In our conversation, Emma shares why so many Advance Care Planning conversations just don’t work for neurodivergent people. Want to know what does work? Listen in to hear things we need to learn and how to access great new resource.

Key messages

• Emma introduces Death Wired Differently as a neuro-affirming resource on death, dying, caregiving and grief for neurodivergent people.

• Death Wired Differently provides resources, training, education and direct support for neurodivergent people, their supporters, and healthcare professionals.

• We discuss how Advance Care Planning often fails neurodivergent people (with issues such as time blindness, difficulty imagining a future self, motivation anchored in the present, executive dysfunction and task paralysis).

• We explore the emotional impact of late diagnosis - a mixture of grief and relief, and how this connects to struggles with planning ahead.

• Barriers in typical Advance Care Planning conversation can include: assumptions about likes/dislikes, alexithymia, proprioception difficulties, literal language, and problems with euphemisms around death.

• The importance of sensory environments (light, noise, touch) is highlighted.

• There are risks around capacity and consent when neurodivergent people say “yes” under pressure, and the need for clearly documented communication differences.

• Emerging tools and ideas include hospital “passports”, the potential use of video/VR to help people understand care settings, and better implementation of the Mental Capacity Act.

• Emma’s key closing message calls for us to move from “Have you done your advance planning?” to “Have we created the conditions for you to do this in a way that works for you?”

Resource

• Death Wired Differently

• Understanding death competency with Dr Emma Clare

• ACP Day Conference

• The Lancet: A new vision for death and dying | The Lancet Commission on the Value of Death

• Soul Paint enables people to express themselves when words are not enoughSoul Paint

Bio

Dr Emma Clare is a Chartered Psychologist, End of Life Doula, and founder of Death Wired Differently, a platform providing resources, information, and training on neuro-affirming approaches to death, dying, caregiving, and grief support. Her work explores how neurodivergence shapes the way people understand, receive, and provide end-of-life care including advance planning. Bringing together professional expertise and personal lived experience, she works with organisations and healthcare professionals to improve end-of-life care for neurodivergent people with a focus on accessibility, advocacy, and designing processes that genuinely work for how different neurotypes experience end-of-life care and planning.