An person using an ipad to plan their end of life care

End-of-life care helps people at the final stages of life to live as well as possible until they die.

While a crucial area of healthcare, it’s lagged behind others in terms of adopting innovative practices and technology. On top of this issue, as populations age and more people live with multiple health conditions, the demand for end-of-life care will rise, coupled with a greater burden on societies, health systems and families alike.

We see these as opportunities for impact in end-of-life and palliative care, both in the UK and internationally. We’re working to alleviate the economic burden of dying and, with the Institute of Global Health Innovation's Helix Centre, to use design and technology to develop innovative, evidence-based solutions to improve end-of-life care around the globe.

Our work

We have a dedicated team who work on a number of projects in collaboration with leading research and clinical institutions and providers of end-of-life care, from the NHS and charitable sector.

Find out about some of the work we’re doing to transform the way people are cared for at the final stages of life.

About our work on end-of-life care

Children's palliative care

We’re working with the Seràgnoli Foundation to define and shape the future of children’s hospice care, in coordination with the creation of a new children’s hospice near Bologna.

Our goal is to use emerging and innovative technologies to help transform the way professionals deliver care, and significantly improve the care experience for children, young people and their families.
We’ve created two prototypes so far: an AI-powered digital support tool that assists parents during the hospice referral process, and an interactive plant that combines horticulture with computer games to enable children to enjoy collaborative play. We’ll be developing more in line with the construction of the hospice which will open in late-2020.

Working with the Royal Marsden

We’ve established a research collaboration with expert palliative care clinicians based at The Royal Marsden Hospital, the leading cancer centre in London. This partnership allows us to further develop our research that’s exploring and evaluating various tools people use to plan end-of-life and urgent care, including Coordinate My Care.

We’re also collecting patient-reported outcome measures, such as pain and quality of life, to inform our work and are developing and testing a tool to identify deterioration in patients receiving palliative care.

Allocating care resources

We’re working with patients and policy-makers to guide the allocation of limited care resources for end-of-life care.

The number of deaths each year in the UK is rising and, despite an overwhelming preference to remain at home, most people die in hospital. The cost of caring for patients who are at the end of their life is therefore set to increase, and there are also significant inequalities in access to appropriate end-of-life services.

In partnership with the University of Edinburgh, the University of Lausanne and the Institute for Public Policy Research, we’re looking at ways to improve the efficiency of health and social care provision at the end of life, and the implications for patients and health systems. We want to find out whether greater efficiency in care resource allocation could enable access to higher-quality and more personalised care for patients.


Our progress

In partnership with the World Innovation Summit for Health, we produced a key report reviewing end-of-life care challenges globally, devising a five-step strategy for improving quality of life during the final stages of life.

We’ve also been working with the Helix Centre on a number of successful projects, below, that are already making an impact for both patients and the NHS.

Find out about our progress in end-of-life care

A man and a woman looking at a laptop computer.

Amber plans

The Institute of Global Health Innovation's Helix Centre has created a new spin-out company, Digital Care Planning Ltd, to build on their work in creating an innovative digital platform for planning future care.

Their product, Amber Plans, makes advance care planning more personal and better connected. Over 3,500 people have used our digital tools to create an advance care plan to indicate their preferences for family, friends and health care professionals involved in their care at the end of life.

Ambulances outside a hospital building

ReSPECT

The Helix Centre collaborated with the Resuscitation Council among over 30 other national organisations – including the Royal College of Physicians and the Care Quality Commission – to redesign the way that difficult conversations about life-sustaining treatments are conducted and recorded.

This resulted in a new form and process, called the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT), that brings the patient to the centre of emergency care decisions. Since launching in February 2017, ReSPECT has been implemented in over 30 NHS hospitals.