Hi, Clare here on the other side of the mic for once! I was honoured recently to be asked to talk with Ruth Germain for her brilliant podcast - so who cares anyway. Keep listening to hear our discussion….

Key messages

• Advance Care Planning is essential, relevant for everyone, and often addressed too late in health and care contexts.

• The majority of end-of-life care is provided by generalist teams, not just specialists; communication and recognition are recurring issues.

• Advance Care Planning is explained using the "house" metaphor (foundations: what matters most, windows: wishes/preferences, refusal of treatment, who speaks for you, legacy, end-of-life care).

• Planning ahead should not be left until it’s urgent; encourage early, open conversations.

• I founded "Speak for Me" to improve professional education, raise public awareness, and normalise discussions about planning ahead.

• There is a need for both systemic and public shifts—empowering the public to lead their own conversations, not just healthcare professionals.

• Challenges exist with language (e.g. "withdrawing care"), and misconceptions around treatment and decision-making.

• Legacy and digital legacy are significant aspects: writing letters, making arrangements, and ensuring digital assets are considered.

• We discuss the importance of normalising end-of-life and care planning conversations in daily life and media.

• Closing messages: for professionals—ask patients what matters most; for the public—share what matters most with loved ones.

Resource

• For more info on Advance Care PLanning & the “Getting YOur HOurse in Order” infographic: https://speakforme.co.uk/advance-care-planning-explained 

• So Who Cares Anyway” podcast (hosted by Ruth Germaine)

• Changing plans, anticipatory grief and planning ahead Listen and see show notes and resource.

• What we need to do after a person has died at home: Listen and see show notes and resource.

• What changes are there as someone approaches the end of life? Listen and see show notes and resource.

• Symptom control and medication as someone approaches the end of life at home Listen and see show notes and resource.

• What equipment might be needed to help look after a person who is dying at home Listen and see how notes and resource.

• Dying at home, what you need to know and how to be prepared - What support is available to help look after a person who is dying at home Listen and see show notes and resource.

• Dying at home, what you need to know and how to be prepared - Recognising when someone might be in the last stages of life Listen and see show notes and resource

• UK National Advanced Care Plan Day (organised by Clare, Danny, and James Norris)

• The Waiting Room Revolution (mentioned for "activated" public)

• House infographic on Advance Care Planning (visual resource created by Clare)Book: Reference to “With the End in Mind” by Dr. Kathryn Mannix 

• Podcast episode: Conversation with Dr. Jared Rubenstein about palliative care teams and language Mythbusting videos and changing conversations with Dr Jared Rubenstein 

• Podcast episode: Stopping chemotherapy: Treatment, hope and time with Louisa Nicoll, wife of John 

Bio

Clare is a Registered Nurse with 30 years’ experience in End-of-Life Care (EoLC). She has worked in hospices, the community, and acute sectors as a Clinical Nurse Specialist, and at a national level as a Consultant Nurse for the Gold Standards Framework. Clare is a CQC Specialist Advisor for EoLC and a Lasting Power of Attorney Consultant. Clare is also currently advising as a Commissioner for the Parliamentary Commission on Palliative and End of Life Care. Clare is the owner and director of Speak for Me which helps organisations to improve EoLC and provides professional and public education about Palliative and End of Life Care and Advance Care Planning. Clare campaigns for proactive Advance Care Planning and hosts the podcast Conversations about Advance Care Planning.