#69 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

This is the second in a series of seven podcasts about End of Life Care, specifically towards the last days of life and when someone wishes to die at home. Rachel kindly agreed to make these with me and recreate some of the conversations I have had over so many years about dying at home, what you need to know and how to be prepared.

In this episode we talk about what support is available when a person is dying at home. We talk about Fast Track Continuing Health Care as well as agencies and organisations that can help fill the “space around the edges” of formal care.

Dying at home, what you need to know and how to be prepared

1.Recognising when someone might be approaching the last stages of life and why this matter

2. What support is available to help look after a person who is dying at home

3. What equipment might be needed to help look after a person who is dying at home

4. Symptom control and medication as someone approaches the end of life at home

5.What changes are there as someone approaches the end of life?

6. What we need to do after a person has died at home

7. Changing plans, anticipatory grief and being prepared

Key messages

•  We begin by acknowledging this can be a difficult subject to think about

• Not about giving up but acknowledging and accommodating this stage of life

• Both Rachel and I have experience of being carers for family members

• Fast Track Continuing Health Care is available for people approaching the End of Life in any setting

• Fast Track funding can support a person at home or in 24-hour care. It can be agreed as fast as two hours

• The “space around the edges” must be filled by family, and other agencies

• You will need to coordinate the different agencies, they often do not communicate between themselves

Episode takeaways

• Someone is eligible for fast Track Continuing Healthcare Funding if they have a rapidly deteriorating condition with no potential for recovery or rehabilitation

• Ask, “is my loved one eligible for fast Track?”

• Services vary across the country

• Don’t assume agencies talk to each other

• Accept any help offered to help

Resource

• Being Mortal Read Being Mortal by Atul Gawande 

• Access Clare’s reflections on being a carer in the British Journal of Community End-of-life care: perspective of a relative rather than a professional

• Find out more about Fast Track CHC Guidance:  NHS continuing healthcare fast-track pathway tool 

• Marie Curie: Help dying people get home explains Fast Track CHC in more detail and why it is so important

• Marie Curie No Time to wait. The state of Fast Track Continuing Healthcare in England discusses the most recent findings and highlights the postcode lottery

• Access Jo Armstrong’s episode Fast Track CHC: Accessing Care to support Advance Care Planning with Jo Armstrong.

• Find local hospice here 

•  Access Marie Curie information

• Access Macmillan information  

• Access Age UK support 

• Access Red Cross support 

• Access Crossroads (Kent based support)

Bio:

Rachel Lankester, founder of Magnificent Midlife

Rachel Lankester is the founder of Magnificent Midlife, an online hub celebrating and empowering women 40+. She's the author of Magnificent Midlife: Transform Your Middle Years, Menopause and Beyond and host of the Magnificent Midlife podcast. After a shocking early menopause diagnosis at 41, she scratched her own itch and created what she wasn't able to find to help herself. This includes 1-1 and group mentoring, courses and educational resources to help women vibrantly transition through the sometimes messy middle of life. She's also the founder of MenoClarity, an online information hub about menopause.

Clare Fuller, Advance Care Planning Advocate, Educator & Coach

Clare is a Registered Nurse with 30 years’ experience in End-of-Life Care (EoLC). Clare is an advocate for Advance Care Planning and founded www.speakforme.co.uk to help organisations to improve EoLC, provide professional education and raise public awareness about Advance Care Planning. Clare campaigns for proactive Advance Care Planning, hosts the podcast Conversations about Advance Care Planning  and is a Lasting Power of Attorney Consultant.