Welcome to the fourteenth edition of the This is the North podcast newsletter.

The Conversation We're Often Too Scared to Have

By Alison Dunn, with insights from Julian Prior, Dr. Elizabeth Woods and Karen Parry.

Photo by Aarón Blanco Tejedor courtesy of Unsplash

Recently, I sat down with three people transforming how we think about death: Julian Prior from Compassionate Gateshead, Dr. Elizabeth Woods, a palliative care consultant, and Karen Parry, an end of life doula.

One in 29 children and young people in school today have been bereaved of a parent or sibling, roughly one per classroom, carrying grief that most adults struggle to talk about. Meanwhile, in medical training, there's a belief that "as healthcare professionals, we all feel a profound sense of failure when one of our patients dies." Elizabeth notes. 

But here's what I learned from my conversation with Julian, Elizabeth, and Karen: we haven't lost the ability to talk about death. We've lost the permission and the spaces to do it.

When Compassion Becomes Loneliness

Julian's work with Compassionate Gateshead started with a personal experience. His mother-in-law's husband died four years ago, and despite being well-connected (lots of friends, active in social networks), she felt incredibly lonely and isolated. Not because people didn't care. Because they didn't know what to say.

"We don't like to talk about death," Julian told me. "We find it very difficult. If we don't talk about this, we end up being very reactive when we absolutely can't avoid it." And if we don't talk about it, we can't prepare for it.

Over the last hundred years, death moved from homes to hospitals. We handed it to professionals. In doing so, we lost the language, the confidence, and the community knowledge that once made dying, and grieving, something we did together.

“If we embrace the fact that we’re going to die, we can figure out how to live better.”
— Karen Perry

What We Lost

Elizabeth described reading the Lancet Report on the value of death, which talks about "bringing death back to life." It transformed how she sees her work.

"Over the last hundred years, death and dying have become over-medicalised," she explained. "We see people spending their final months in hospital, where you can do treatments that sometimes look at prolonging life but not improving the quality of life."

In our grandparents' time, death happened in the community. Everyone knew their role. People would support the family, bring food, look after children, and sit with the person who was dying. They recognised the signs. Karen's path to becoming an end of life doula came through work on premature death among people with learning disabilities. An end of life doula supports someone to prepare and plan for their death, brings calm and confidence to families uncertain if they can cope, and provides holistic support (emotional, practical, and spiritual), as someone dies, doing what communities once did naturally.

"When everybody would've died at home, people in the community would've acted as an end of life doula to their neighbours," Karen explained. "There would've been people on the street who were skilled and intuitive."

Karen's goal: normalise conversations about death, develop the skills and vocabulary we've lost. Where we get comfortable with real words like "died" instead of "passed away" because when we can't say the word, we can't have the conversation. But getting there requires understanding what we're actually afraid of.

What We Fear (And What We Actually Need)

"People fear suffering. They fear pain. And I think it's connected because we've seen less death, so we're not as familiar with what a normal natural death looks like." Karen said.

Television and film don't help. We never see a real death. It's all dramatic, violent, sudden. We build it up in our minds as something much more difficult than it often is.

There's fear on both sides. 

The person dying may have wishes about where and how they want to die but worry it might be problematic. And for families: can we do this? Will I cope?

"Part of the doula role is to be alongside and bring that calm and confidence," Karen noted. "With a bit of reassurance, it can feel like a real gift to care for the person in your life in their last weeks and days." We've lost the skills and the confidence. But dying is a shared reality. We will all die. It's a normal part of life.

When Karen said "we will all die," I felt my body give a physical reaction. I don't know what a natural death looks like because the only experience I have of it is from the media. Which is why what Elizabeth does (explaining what normal dying actually looks like), matters so much.

What Dying Actually Looks Like

Most people who are dying can be kept comfortable with the right support.

"If someone is very frightened of dying, if their family is very distressed by it, managing that dying process is always going to be very tricky," she explained. "Medication's going to struggle to control what fear is doing."

So Elizabeth walks people through what normal dying looks like:

As people are dying, they spend more time asleep. In deep unconsciousness, they can't cough and clear their throat. Secretions build up, making breathing sound noisy. That's normal, and often more distressing to those listening than to the person dying.

People will have alterations in their breathing, pauses between breaths. That's a normal part of dying. It doesn't mean they're in pain, but it tells us time is now quite short.

People look different as they die. Their faces change. Their hands and feet become cool. These are normal signs.

"When you can talk to people about what to expect, often families will say, I've seen that and that makes sense now," Elizabeth said. "If I have this conversation before it's happening, we'll get calls saying, we've noticed a change in their breathing, we think time might be short."

Families recognise dying again. They're not surprised because they see the changes. That knowledge used to be common. Now it has to be taught. Which is why spaces to practice these conversations matter.

The Spaces Where We Can Talk

Karen runs monthly death cafes at Earthlings Healing Cafe in Newcastle. Twelve places, fully booked every month.

Parents who've had a health diagnosis and want to talk to their children about future wishes. People whose aging parents won't talk about theirs. And surprisingly, many young people in their twenties and thirties are exploring life and death. If we embrace the fact that we're going to die, can we figure out how to live better?

"We cut through the small talk very quickly," Karen said. "It's 'introduce yourself and tell us why you decided to come today.' In two hours, we get into very deep and meaningful conversations. People find they lack those in their life."

Julian went to one. "I went thinking, what on earth is this going to be like? But it didn't feel awkward once we got into it. Some of us laughed, we cried." His friend who was diagnosed with cancer and told he had three years to live had a change. He put off what he felt he had to do and focused on what really mattered.

"So much of us go through life and before you know it, you look back and think, what have I missed?" Julian said. But not everyone can access these conversations equally.

The Inequalities That Compound

In deprived areas, people die younger with worse experiences. Dying from chronic illness instead of cancer means far less specialist care. Language barriers multiply the difficulty. And the cost - £250 for a will, over £1,000 for lasting powers of attorney, thousands for funerals, arrives when families are already struggling.

Teachers and youth organisations need resources to support young people carrying grief, but those resources are scattered and hard to find.

Elizabeth sees people with chronic disease who have repeated hospital admissions, sick enough to die, treated, a little better, but never back to their previous level.

"I've met families who've been told their family member is going to die four, five, six times, but each time they've got better with treatment," Elizabeth said. "It feeds into the cycle that you can fix this."

Palliative care teams try to have conversations about what's your quality of life now? What matters most? Where do you want to be?

"When you have those conversations, people might say, " I don't like being in A&E. " I recognise I'm dying," Elizabeth explained. "Then we can have a conversation about what matters most and how we support you there."

In Bradford, a service called REACT shows what's possible. When someone in their final year arrives in A&E, they provide palliative care assessment and offer supported transition into community care. Hospital bed days dropped from 38 to 17 per person. More importantly, people got choice about their care - with family, with support, with dignity.

What's Being Built Back

Elizabeth found training in public health palliative care at just the right time. "So much of what we see is not medical. No medicine I can prescribe is going to help alleviate some of the suffering and inequality and loneliness we see." Which is what led her to Compassionate Gateshead.

She started spending time with the organisations in their network. "Often people would say, 'Oh, palliative care, dying, that's really uncomfortable.' And then two hours later you were still there because it resonates with everyone."

Compassionate Gateshead created a pilot: a social prescriber now works within the palliative care team.

"Her ability to navigate the system, to find someone to walk the dog, who can rehome the cat. Everything that really matters to people," Elizabeth said. The Our Gateshead website is now that single point. Whether you're a GP looking for bereavement support for a patient, a family needing funeral planning resources, or someone looking for grief circles. The network brings together organisations supporting asylum seekers, people with dementia, young people who've lost loved ones, workplaces trying to support bereaved employees.

This February, Compassionate Gateshead is organising the Festival of Compassion, a month of workshops, films, discussions, and lighthearted ways to engage with these topics.

Karen's death cafes fill up every month. Elizabeth's social prescriber helps people get the support they need. Julian's network connects organisations rebuilding what we gave away. Communities are remembering that dying isn't something we fear, it's something we face together.

It's about creating permission and space to talk. It's about one teacher knowing how to support that one child in every classroom. It's about recognising that with life comes loss, death, and the need for understanding and that facing these together makes them less frightening for everyone.

Karen said something that stayed with me: if we embrace the fact that we're going to die, we can figure out how to live better.

Death will happen to us all. The question is whether we'll face it alone, unprepared, fearful and silent or whether we'll face it together, with language, with confidence, with community.

The Festival of Compassion runs all February. Death cafes meet monthly. The entire conversation explores all of this in greater depth. 

Listen to the podcast to hear how death cafes actually unfold, what the Festival will offer, and how we're building a compassionate network across Gateshead. 

Until next time,

Alison Dunn

Read the Research

Listen to the full This is the North podcast:

> Spotify

> Apple Podcasts

If you enjoyed this newsletter, please like, share and subscribe. It takes less than 10 seconds and makes you part of something essential: a community of people who believe transformative conversations can become catalysts for positive change.

This Is The North is your source for transformative conversations that challenge systems holding back the North of England. Hosted by Alison Dunn, supported by Society Matters Foundation.

A deep dive into the archive…

This episode of This is the North with Julian, Karen and Lizzie wasn’t an easy one, and it reminded me of the terrible events surrounding the death of my friend’s husband, and all that unfolded for her as she grappled with the sudden change in her circumstances. The obstacles placed in her way could easily have been removed, but instead she encountered a stubborn adherence to policy and ways of working that made everything that bit harder. Not all agencies were like this, of course -perhaps surprisingly, the financial institutions were often the kindest, more accustomed to dealing with painful situations like this. Others, such as holiday companies, airlines, retailers and internet providers, were often woefully lacking.

So, as we delve into the This is the North archive, it’s not a podcast episode I’m bringing to you this week, but a blog I wrote at that time entitled “Death and Taxes. The only two things we can be sure of in this life.”

This week I have been listening to…

I caught a fascinating podcast from Radio 4 on my drive home from work, entitled File on 4 Investigates – Can cash grants help end homelessness? The premise of the episode is that if you give a cash grant to someone, with no restrictions on what or how they spend it, they will use it to lift themselves back up by spending it on the right things. I’ve long been an advocate for a universal basic income - something I accept is unlikely to ever come to fruition in the current economic climate - but the principle that people will make the right decisions if given the autonomy and resources to do so is something I really believe in.

The study is ongoing, so it remains to be seen how successful it will be, but the early signs are promising. Well worth a listen.

This month I have been reading…

Mrs March by Virginia Feito—a story of psychological decline in a character I found very difficult to connect with. I felt no sympathy for her, though I understood her mental decline was not something she could control. She was simply such an awful piece of work: full of paranoia, convinced she was being judged by everyone around her, while simultaneously judging everyone else and deciding they came up short. A status‑hungry woman in an era before social media, yet with so many parallels to the behaviours we see online every day.

With some distance between me and the final few chapters, I’ve softened a little, reflecting on a woman who gave up her identity to her husband and his career, enjoyed all the trappings of his success, and along the way entirely forgot who she was, unable to save herself from the hell she created.

Take a look…

A while back, you may remember I talked to Katrina Morley and Sean Harris on This is the North about the work they are doing to poverty‑proof schools. I’m really pleased to be sharing with you today their latest publication, PLACE: The Story So Far, which went live this week and really shows what becomes possible when schools, communities and organisations work together with a genuine collaborative commitment to children and place. Well done to everyone involved in this—a great initiative, and one I’m proud to promote.