The project transforming end of life care across our hospitals
The project transforming end of life care across our hospitals
05 August 2025
Colleagues Tori Martin and Dr Katherine Buxton set out to find a way to improve end of life care for patients, working with the Helix Centre to capture the lived experience of people who had experienced a loved one die at one of our hospitals.
In collaboration with healthcare design researchers at the Helix Centre, they identified 20 participants who reflect the diverse population of North West London, who wanted to share their experiences of care and bereavement.
One participant shared: “Participating in this research has been emotional at times, but cathartic. It's provided me with an opportunity to disseminate my experience of being in hospital with my loved one for nearly eight months, mostly within intensive care units.
“I hope that my involvement has and will make a difference for others when end of life takes place, so they don't have to struggle or cry silent tears of fear and grief.”
“I hope that my involvement has and will make a difference for others when end of life takes place, so they don't have to struggle or cry silent tears of fear and grief.”
End of Life care project participant
The Helix Centre created different profiles based on the participants' experiences, identifying ten areas of improvement from their conversations that aim to ensure loved ones feel involved in care, that they are supported, and that their religious and cultural practices are met.
The team used these insights to develop a patient information leaflet addressing common questions and cultural sensitivities around death.
“One of the things that came through quite a lot was that people didn't know what to ask for, or they didn't know what was available,” said Tori Martin, Lead Nurse for Palliative and End of Life Care.
“They'd never been in the situation before, so they genuinely didn't know what to say or do, or what questions to ask.”
“I think the leaflet we've developed is about sharing that it's okay to ask a question about end of life care.”
Through the grant, the team also introduced the Purple Butterfly Model of Care on ten inpatient wards, providing training for staff and resources that included comfort packs, cuddly toys and books explaining what is happening for families facing the loss of a loved one in the hospital.
Dr Katherine Buxton, Consultant in Palliative medicine and Clinical Lead for End of Life Care, said: “There is a recognition that staff as well as patients are not necessarily comfortable and don't have the words around death and dying, and bereavement.
“So the leaflet helps loved ones know what to ask. Then the Purple Butterfly model really helps articulate to staff how we hope and expect them to support a person who is dying and those who are important to them within our environment.
“Under the banner of Purple Butterfly, we've got leaflets, we've got handouts around what happens after bereavement and things that all sit in this trolley at the same time. So it gives them a few tools to be able to have those conversations.”
Currently, the Purple Butterfly resources have been rolled out on 10 wards across our hospitals, and each ward has an End of Life Champion trained by the team to support staff, patients and loved ones throughout the end of life journey.
If you are a staff member at one of our hospitals, you can access the end of life resources via the Intranet.
