Welcome to a new season of podcasts. I am delighted to welcome back Dani Ayre, explore words and bust myths associated with palliative and end of life care. Over the course of this season, we will focus on a word a week and challenge commonly held beliefs. Why? Because words matter - you will hear the impact of myths around words.

In episode one we talk about End-of-Life Care, what it is, societal and professional taboos and offer useful tools for identification. Listen in and share the conversations.

Key messages

• The episode opens with an introduction to conversations about Advance Care Planning and its significance.

• We start by sharing our backgrounds and why this series is so important to us both. 

• Discussion centres on the confusion and stigma surrounding the terminology of "end-of-life care" among both the public and healthcare professionals.

• There is a common misconception that end-of-life care refers only to the last days or hours, rather than the broader context of the last year of life.

• The importance of open conversations about Advance Care Planning is highlighted, aiming to empower patients and families to make informed choices.

• Several tools and frameworks are discussed, such as the Gold Standards Framework (GSF), SPICT, and the Karnofsky Performance Status Scale, for identifying patients nearing end-of-life.

• Barriers for healthcare professionals in recognising and discussing end-of-life care are explored, including a sense of failure and societal taboos around death.

• Dani and I advocate for reframing end-of-life care as a positive and proactive approach that enables planning rather than reacting and autonomy.

• We close with key messages encouraging healthcare professionals and the public to initiate these important conversations.

Resource

• NICE Guidance:  End of life care for adults QS13

• NHS resource: End of life care at home 

• NHSinformation: What to expect from end-of-life-care  

• The General Medical Council: Treatment and care towards the end of life: good practice in decision making 

• Dr Jared Rubenstein video: Palliative Care PSA - We’re the fire department, not the fire. 

Identification Tools

• Proactive Identification Guidance (PIG)​ 

• The Supportive and Palliative Care Indicators Tool 

• Comparing the ECOG Performance Status and the Karnofsky Performance Status Scales 

For information about Advance Care Planning, see the  Advance Care Planning Explained resource on my website

Bio

Dani Ayre

Dani is Matron and Lead Nurse for Palliative Care currently working at Norfolk and Norwich University Hospital. She has over 15 years’ experience in Palliative and End-of-Life Care (PEoLC). She previously worked in Gibraltar for over 8 years, implementing and leading a Hospice Outreach Service for the community of Gibraltar. She has also worked in the community in Palliative care and Long Term conditions and briefly in the acute sector. 

Dani has furthered her knowledge throughout her career by achieving a Distinction in her PG Certificate at Masters level in Palliative Medicine and completed 2 further Masters modules in leadership and education in Palliative care. She is passionate about raising awareness and educating on Palliative care and the importance of Advance care Planning  not only to Health care professionals and the general public.

Clare Fuller

Clare is a Registered General Nurse and has focused her career in Palliative and End of Life Care (EoLC) working clinically in hospices, providing clinical support and education in the acute setting and nationally to deliver the Gold Standards Framework Acute and Primary Care programme. Clare holds an MSc in Specialist and Advanced Health Care and in 2025 was proud to be part of the Parliamentary Palliative and End of Life Care Commission.

Clare has worked strategically in a CCG focusing on delivering the Workforce element of the General Practice Forward View and as a CQC End of Life Care Specialist Advisor.

In 2019 Clare founded Speak For Me which provides Advance Care Planning Education, Lasting Power of Attorney Consultation and support for people facing a life changing illness. Clare advocates for proactive Advance Care Planning and is host of the podcast Conversations About Advance Care Planning.