Marking Hospice UK’s Dying Matters Awareness Week Liz Pryor from the Anne Robson Trust talks frankly about dying and death; an essential conversation that is often avoided until it is too late. The Anne Robson Trust provides advice, training and companionship, working alongside partner healthcare organisations, bringing support, comfort and compassion to those nearing the end of life, and those closest to them.
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A Good Death
Age & Stage – Episode 10 Show Notes
This time, it’s a difficult topic as we mark Dying Matters Week.
Liz Pryor:
Do you mind what happens to you as you come towards the end of your life? Would you like to decide what care you have, where you die, who looks after you and who doesn’t? It’s important to talk about that, especially if you feel strongly.
The Anne Robson Trust is a charity I set up nearly seven years ago in memory of my mum. We help people be supported as they die—to have as good a death as possible. We have three main areas of work: providing online resources around death and dying, running ‘Simple Wisdom’ workshops, and partnering with healthcare organisations like NHS hospitals, hospices, and care homes. Recently, we’ve started working in primary care, enabling volunteers to support people dying at home.
When should we start talking about death?
Now. Yesterday. A year ago. Before it hits you or you’re in the eye of the storm. Talking about death doesn’t make it happen—it’s like saying talking about babies makes you pregnant.
What should we be talking about?
It’s personal. Do you care where you die or who’s around you? Some people do; others don’t. That’s fine too, but if nothing is recorded, loved ones are left guessing, and disagreements can follow.
Before worrying about DNRs or advanced care plans, it’s useful to have a will and jot down your preferences. Our free “My Wishes” checklist helps guide this. It includes everything from your funeral wishes to where to find your Netflix password. You can fill it in digitally and store it securely.
Talking about the moment of death can be hard.
It’s very final, but understanding what’s normal helps reduce fear. During our workshops, we explain what actively dying means. Many people don’t realise it’s a clinical term. It involves stages—like becoming sleepier, drifting into unconsciousness, changes in breathing like Cheyne-Stokes, and colder extremities as blood is redirected to vital organs.
We also talk about “terminal agitation,” which can often be managed with “just in case” medications—a pack of drugs sent home for symptom management during end-of-life care.
Is there a timeline for these signs?
There’s no set timeframe. Just like labour can take hours or days, so can dying. Some people hang on longer than expected, driven by will or waiting for a loved one to arrive.
If the medical team isn’t clearly communicating, what should families do?
Ask directly: “Would you be surprised if my parent died in the next 12 months?” Use the D word—die or death—once, to be clear. People often use euphemisms, but clarity is key.
Common mistakes?
Not having these conversations early. Chatting about funeral music over a glass of wine is far easier than making decisions in the middle of a crisis. That’s when confusion and trauma set in.
Key documents and concepts:
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Advanced care plan: Also known as a living will, it outlines your preferences for end-of-life care.
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Respect form: A document clinicians use to record your wishes.
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Lasting Power of Attorney (LPA): Crucial if you want a loved one, not a clinician, to make decisions when you’re no longer able.
Hospices—how do they work?
Most are partially funded by the NHS, have limited inpatient beds, and offer day services or hospice-at-home support. Accessing one can depend on location, but you can start by speaking with your GP or calling the hospice directly.
What can families do to prepare?
Some families record a loved one’s memories. But there are practical things too—bringing a loved one’s favourite treat, or understanding they may no longer want food and water. Just offering presence is powerful.
Death Doulas—what do they do?
Also known as soul midwives, they support someone through their final year and may help the family after the death. They often offer more spiritual guidance, while our volunteers work closely with healthcare organisations in more structured roles.
We’re currently developing a community-based volunteer program to support people in the last three months of life—part of a wider shift away from hospital deaths toward supporting people at home, according to their preferences.
If you’ve been through this experience yourself, and feel ready, consider becoming a volunteer. Your insight could be invaluable to someone else.
For more information:
We have guidance, links to resources and a wealth of information regarding end of life and death on our website: End of Life and Death
Get in touch with Age & Stage
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