“We provide a human connection in a disconnected system” In this latest article from RCNi, specialist nurse Amber reflects on joining our clinical team and how prioritising people through phone-based support acts as a crucial safety net in end-of-life care. rcni.com/nursing-stan...

Last month @nationalvoices.bsky.social published a blog where we explored what information and support people need in order to understand assisted dying laws that are currently being considered across the British Isles. compassionindying.org.uk/blog-post/as...

Thanks @nationalvoices.bsky.social As assisted dying laws are being considered across the British Isles, our latest blog explores what information and support people need to understand the law and have conversations with healthcare professionals about assisted dying.

A very happy birthday to the Open Justice Project team 🎉🎉🎉 An incredible initiative backed up by selfless, tireless volunteers. Long may it continue!

These conversation will continue and we will be reaching out to all webinar attendees so we can capture their insight as we move forward with the idea of a public health campaign to help people make the end-of-life decisions that are right for them. Thanks for joining us today.

Mandy reflects on changes she has made to her clinical practice, informed by the experience of her mother's death. These conversation are having an impact on patients on her unit, and helping people end their life in a way that is in line with their wishes.

Usha: we are not talking about corralling people into a certain set of decisons...one size does not fit all.

Q. What support do people in communicates need to make this work and is there a risk this process is an "anglophone" one?

Tom: Clinicians are often worried about bringing up the subject. So they need tools to support that conversation ; to ask questions and be ready to listen .

A key theme for theme from the questions: that people record their wishes do not always trust that they will prevail. What can we do to ensure they are?

The challenge is for the public to have these conversations, and the challenge for clinicians to listen and relinquish a little control.

At its most raw, when CPR cannot reverse the dying process it can be a distressing for everyone involved. The goal is "appropriate CPR" being available to all. With emphasis on "appropriate "

The appropriateness of CPR is something that often comes up in conversations at the end of life. But Tom has also seen when people have received CPR that was not right for the person.

Now we are hearing from Tom Wood, Tom is a nurse and clinical lead for the Resuscitation Council. Tom will be talking about what the resuscitation council have learnt through developing and delivering the RESPECT process

Professor Kellahear makes the comparison with the health and social care system at the beginning of life - its not one size fits all. Over the past 10 years we have been building a system for the end of life.

"we like to be where people are" - a public health approach to the end of life care recognises the reality of how people experience dying and bereavement .

Now Professor Allan Kellahear is speaking, Allan is the Professor of End-of-Life Care at Northumbria University and the founder of the international public health movement in palliative care.

"lived experience has to be at the centre and forefront of your campaign, ‘like the writing in a stick of seaside rock’."

"Audiences will be at different starting points – some nearer to change than others, some with many complex barriers"

"So what are some key learnings which could be relevant to any ‘campaign’ you might want to run? "Any ‘campaign’ should not be a one-off endeavour, but a take a long term approach.

This resulted in: - A 15% reduction in average levels of mental health discrimination - The public who were campaign-aware were more comfortable disclosing mental health issues to their families and friends, at work and seeking help from a GP.

"Mind and Rethink got together to set up a national programme called ‘Time to Change’ which we ran from 2007-2021. With levels of funding £4m-£5m per year we had very defined outcomes with ambitious targets to reach every four-years.,

"In the mid 2000s, mental health was in the ‘too hard to do’ basket for the public, employers, and the media. Stigma and discrimination were common-place"

"Most of my career has focused on making a very taboo topic (mental health), OK to talk about, giving the motivation and tools for talking and then changing behaviour"

Now we are hearing from Sue Baker, she set up the Time to Change campaign in England that led to a "sea change" in public attitudes and reductions in discrimination in England.

Rekha shares the lessons she has learned working with racially minoritised communities, lessons that may help frame and inform this discussion.

Now we are hearing a short message from Rekha Vijayshankar, reflecting on her work with racially minoritised communities in relation choice and agency over health and explorig how vital it is to not approach behaviour change with a one-size fits all mentality.

"We need investment in culture change – how we all in society understand and talk about our end-of-life treatment and care. " @UshaGrieve

"8 in 10 of us say we would prioritise quality of life over quantity towards the end. But when you speak to bereaved people, a quarter of them say the person they looked after received medical treatment they would not have wanted in the last year of their life."

Now we are hearing from @ushagrieve.bsky.social , our director of partnerships and services at who will share findings from their research into people’s experiences of making and recording decisions about end of life across the UK.

"Death is guaranteed for every one of us and we need to change the culture in the way we view death. "We get many chances in life but only once chance in death, let’s get it right!"

"We need to get the message out there so everyone can have the opportunity to think through their wishes before a crisis. It’s not just old people that die. "Importantly it must all be spoken in layman’s terms to ensure everyone has understood."

"If we as healthcare professionals didn’t think and talk about it, what chance do the public have? So, what would I like to see changed?"

Mandy's mum had a cardiac arrest in cafe: "Her time was up, and she just passed away very quickly. It would have been much more dignified to keep my mum in my arms and produce a DNACPR form to the ambulance crew."

"It was discussed that mum was not fit enough for a kidney transplant a few years prior to her death in Oct 2022. Mum had spoken about home dialysis however this had never been started. On reflection, this would have been the best opportunity to discuss her priorities and wishes for the future.

"my name is Mandy and today I would like to talk to you about my mum’s experience, and how even as a nurse, I missed the opportunity to help my mum record her wishes for treatment at the end of her life."

Now we are hearing from Amanda Coleman, Amanda is a nurse who is here today (while on her break on the ward) to speak about her mum’s end of life experience

Today we will hear from people who have experience of the current system, we will hear from healthcare professionals and campaigns and end-of-life experts working across the sector .

Our Chair is Charlotte Augst who is setting the scene: Many people desire a less hospital-based, intervention-heavy end for their lives but currently services are struggling to respond. We need culture change to address this.

Our webinar is kicking off now, we'll be posting live updates here throughout www.eventbrite.com/e/supporting...

Looking forward to this discussion at midday. Members of the public, clinicians, campaigns and end-of-life experts will consider what’s needed to build a successful public health campaign on end-of-life decisions. There's still time to sign up 🔽 www.eventbrite.com/e/supporting...

“If you’re like me, you’ve been to endless conversations where we say we need culture change, but not much happens to make this a reality" @charlotteaugst.bsky.social Join our webinar to explore how we make culture change real at the end of people's lives www.eventbrite.com/e/supporting...

It’s less than 3 weeks to go until our webinar where members of the public, clinicians, campaigns and end-of-life experts will consider what’s needed to build a successful public health campaign on end-of-life decisions.

Good leadership from @mariecurieuk.bsky.social The amendment would mean government regularly assess availability & quality of palliative care if assisted dying is legalised We agree with Matthew Reed - better palliative care & a safeguarded assisted dying law should not be in competition

Today we’ve published our latest Impact Report highlighting what we achieved in 2024. Our nurse-led services are helping to ensure people are at the centre of decisions about their end-of-life care. Read the report here: compassionindying.org.uk/who-we-are/i...

Today is #InternationalNursesDay2025, a great opportunity for us to share exciting news that we have recruited 2 new nurses to our information and support team. Our clinical team provides vital support to ensure people are at the centre of decisions about their end-of-life treatment and care.

This week is @dyingmatters awareness week, exploring why the culture of dying matters. Read more ⬇️ #DMAW2025

Good luck to everyone involved today. A hugely important opportunity for us all to explore how we can put people’s wishes and values at the centre of decision-making.

📢 New webinar! Join us as @charlotteaugst.bsky.social chair’s a 60 minute solutions-focused webinar where we discuss what’s needed to build a successful public health campaign that helps people to make end-of-life decisions that are right for them. www.eventbrite.com/e/supporting...

. @compassionindying.bsky.social supports attorneys trying to navigate the healthcare system, and calls for greater support for those nominated to act on behalf of loved ones at the end of life compassionindying.org.uk/blog-post/re...