#148 Debunking Myths About Dying with Dani & Clare

Exploring words and busting myths associated with palliative and end of life care. Over the course of 10 podcasts I am delighted to talk with Dani Aye 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 and we’ll share valuable resource.

In episode three we talk about Care in the last days of life, we explore terminology, recognise the challenges of identifying this phase of life and share resource and information about Ordinary Dying.

Key messages

• Dani and I start the episode with discussion around terminology, distinction between end of life care (which may last months or years), palliative care, and “care in the last days of life.”

• We refer to NICE guidance for care of dying adults, highlighting the five priorities of care:

• Recognise

• Communicate

• Involve

• Support

• Plan & do

• We explore challenges in recognising and identifying when a person is actively dying and discuss the need for sensitive and honest conversations with patients and families.

• Exploration of “ordinary dying” as a natural process, not an acute or artificially extended event, and the importance of dispelling common myths about pain and symptoms at end of life is shared.

• The role of education, resources like Dr Kathryn Mannix’s video, and knowledge in reducing fear for patients and families.

• Dani & I refer to cultural and emotional significance of food and hydration, challenges in end stage illness, and ongoing research (e.g., the CHELsea II study) into hydration in the last days.

• The importance of person-centred, individualised care when supporting the dying and their families is discussed.

• Final messages stress the power of knowledge for better outcomes and healthier grief, and the encouragement to share key resources within care environments.

Resource

• NICE Care of dying adults in the last days of life  Quality standard Reference number: QS144 Published: 02 March 2017

• One Chance to Get it Right

• CHELsea II: Cluster randomised trial of clinically assisted hydration in patients in the last days of life. 

• Dr Kathryn Mannix Dying is not as bad as you think' | BBC Ideas  

• 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.