Compassion in Dying

None of this work would be possible without the people who share their experiences and expertise with us - thank you, your voices are an important force for change.

A Year of Impact: reflecting on Compassion in Dying in 2025 As 2025 draws to a close, here at Compassion in Dying we’ve been reflecting on a significant year for personalisation and patient power in end-of-life care.

As 2025 draws to a close, here at Compassion in Dying we’ve been reflecting on a significant year for personalisation and patient power in end-of-life care.

Our latest blog explores some of the activities and moments we are proud of from the last 12 months.

A turning point for end of life care? Our response to the announcement of a Palliative and End of Life Care Modern Service Framework.

Dying people’s voices must be at the centre of design and delivery.

Our latest blog responds to the government’s prioritisation and commitment to improve Palliative and End of Life Care through a new Modern Service Framework.

compassionindying.org.uk/blog-post/tu...

Ultimately, to ensure we are empowering people to make and record decisions about their treatment and care at the end of life, we must ensure digital systems are set up to enable preferences to be shared seamlessly.

The next stages of the SPR must incorporate people in the last year of life and include the option to complete advance care planning within the delivery of the NHS App.

As we look towards plans for developing the Single Patient Record (SPR) and the NHS App, we are working hard to ensure that the voices of people experiencing end of life care are not forgotten.

People continue to tell us that a lack of adequate digital systems to share end-of-life wishes causes anxiety and poor experiences at the end of life.

People tell us when their wishes are not known about, they face treatments and admissions to hospital that they did not want.

Dying people are being failed by the NHS's approach to sharing information Usha Grieve explains how in the realm of digital health data, the spotlight on the Federated Data Platform overshadows the sluggish progress in enhancing electronic end-of-life records, hindering meaningful patient-centric change and necessitating urgent action

It’s been almost two years since the HSJ published our piece highlighting how dying people are being failed by the NHS’s approach to sharing information.

Unfortunately, from what we hear through the people we support, not much has changed.

P’s Advance Decision to Refuse Treatment is not valid, not applicable, and not a reflection of her past or present wishes It seems to me that the judge was entitled to make the decision that P’s ADRT was invalid. That causes me concern because of what it means not just for P but for everyone else with ADRTs.  Do our A…

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New blog post - 90-year-old woman and her advance decision to refuse treatment

openjusticecourtofprotection.org/2025/11/05/p...

Several or our staff members pictured at the conference

We're delighted to be at the @helplinesuk.bsky.social Annual Conference & Helpline Awards today.

We're thrilled to be nominated for Helpline of the Year 2025 alongside AgeUK Nacoa UK Safeline UK Self Injury Support SWGfL.

Why (and how) we decided to submit an freedom of information request to NHS Trusts・Some thoughts In May this year I went along to observe a hearing at the Court of Protection. It’s something we at Compassion in Dying do sometimes as the

At @compassionindying.bsky.social we decided to FOI NHS Trusts to see their advance decision / MCA policies.

Here's our thinking about why that might help us diagnose some problems and help the people we support when they have trouble at hospitals.

Thank you to the @nursingstandard.bsky.social for having me to write this piece. Happy to connect with any fellow nurses thinking about transitioning to work within the charity sector.

Helpline nursing: could you make the shift to a phone support role? Helpline nursing may not involve direct patient care, but upholds the Nursing and Midwifery Council code by providing compassionate support, helping people navigate complex healthcare systems and clarifying confusing information about treatment options. A former NHS nurse and midwife who works as a helpline specialist nurse at the charity Compassion in Dying explains the difference between her former and new roles, and what nurses can expect in helpline roles, from crucial skills and the experience required to pay and work-life balance. She sees her role as ‘providing connection in a disconnected system’, helping people maintain dignity and control, even in a healthcare system under pressure. Includes practical tips for nurses who want to pursue a career in helpline nursing.

“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...

Our latest blog explores how we can meet people’s needs and why the third sector should be leading the way.

If you are interested in exploring collaborative solutions to support the people you work with, we would love to hear from you.

Providing accessible and clear information to the public about options available to them as they approach the end of life is crucial. If we are to ensure people are supported if the law changes, we need to start thinking now about what people need.

People tell us that they want to be able to make informed decisions about their end-of-life treatment and care. But, despite there being information they would like to know about the proposed change in law, currently they are not able to find what they need.

Assisted dying: how do we meet people’s needs and why the third sector should lead the way As assisted dying laws are being debated in Parliaments across the British Isles, we asked the people we support what information and support they need to understand the law and have conversations wit...

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...

If you are interested in exploring collaborative solutions to support the people you work with, we would love to hear from you.

If we are to ensure people are properly supported in the event of law change, it’s up to us as a sector to listen to what people want and need. We need to begin work now to ensure that open conversations are fostered and that people have the information they need to understand their options.

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.