“When my husband’s heart condition suddenly declined he ended up under the care of a different doctor, who didn’t really know him. He attempted to admit my husband to hospital and force treatment on him that I knew he didn’t want. It was very frightening for both of us to face such insistence but, thanks to the advance decision and lasting power of attorney, I had evidence of my husband’s wishes and, only because of that, the doctor listened. It ensured my husband’s wishes were followed. I really felt I was being bullied and losing ground and I don’t believe that I could have advocated for what he wanted without those documents.”
Jemma Woodley
25 November 2025
A turning point for end of life care?
Our thoughts
We welcome the Minister of State for Care’s announcement of a new Palliative and End of Life Care Modern Service Framework to be published in spring 2026, which should bring much needed improvements to the access of high quality end of life care for all.
This is an important moment for end-of-life care, with recognition, prioritisation and commitment to ensuring dying people’s wishes are known when it matters most through shared care records, more opportunities for advance care planning, and a focus on reducing unnecessary and unwanted hospital admissions for people approaching the end of life.
Last year we evidenced how too many people are enduring treatments and interventions they do not want at the end of life. Our research found that whilst 8 in 10 of us would rather prioritise quality of life over quantity, 1 in 4 bereaved people say the last close friend or family member they know who died received treatment they would not have wanted.
People tell us they do not want to spend their final months in and out of hospital, and regularly call our information line for support so they or their loves ones can remain at home when the next deterioration happens.
We’ve continued to call on policy makers and health and care leaders to adopt new ways of working that give people and communities meaningful opportunities to make, record and share informed decisions about their end-of-life treatment and care preferences before a crisis occurs.
We are heartened that the voices of dying people are being heard by policy makers. It is significant that the recent announcement recognises critical challenges to people receiving care at the end of life that is aligned with their priorities:
- That there is currently low uptake and integration of personalised care and support planning for people who are approaching the end of life.
- That more must be done to ensure that dying people are not, by default, unnecessarily admitted to hospital when they do not want this.
- That professionals should be able to access people’s recorded wishes and health information digitally.
Evidence from the people we support shows that when wishes are recorded and respected at the end of life it helps to reduce unnecessary hospital admissions and unwanted treatment.
Currently, many people tell us they did not know they can make and record such decisions, and in parallel, people say that not enough professionals are inviting or supporting people to have these open and honest conversations. So, whilst recognition of the challenges of low uptake and integration of personalised care and support planning is an important step, we must make sure tangible action is taken to support people’s awareness and understanding of the decisions they may face at the end of their lives.
Lord Darzi, in last year’s review of the NHS, stated clearly the need to understand what quality of life means for people. It’s critical the wishes of dying people are central to the design and delivery of the new Modern Service Framework.
There should be recognition that to improve people’s experiences at the end of life supporting people to make and record decisions, if they want to, is as important as getting services right.
We are working hard on policy initiatives that will support this shift in behaviour, by working with government and health leaders to build early advance care planning into end-of-life transformation. We believe we need:
- A collaborative, sector wide, public health, behaviour change campaign that increases people’s understanding of how to consider and record their end-of-life treatment decisions if they wish to, and works with professionals to ensure they support such conversations and preferences. We must ensure that every interaction counts when it comes to enabling people to be in control at the end of their lives.
- The next stages of the Single Patient Record roll out to incorporate people in the last year of life and include the option to complete advance care planning within the NHS App.
- Commitment to ensure every older person is offered an advance care planning conversation. We believe commissioning around models for neighbourhood health should incorporate requirements for advance care planning conversations to be offered at scale.
We stand ready to support the development and delivery of the new Modern Service Framework and will continue to ensure people have meaningful opportunities to talk about what they do and do not want at the end of life.
Crucially, people must be given opportunities to record their preferences, have these shared seamlessly, and respected throughout their care journey.