Transforming palliative and end-of-life care for service users

Everybody dies. Not everybody experiences a dignified and comfortable death. This research has informed policy at Government level and impacted palliative care service provision across hospices, hospitals and patient’s homes, improving the ways services are designed, delivered, communicated and co-created with patients and their families. It has also changed the ways in which palliative care service providers connect with other healthcare providers (GPs, district nurses, care home managers) and led to the launch of a new Hospice@Home provision, which, during its first 6 months alone, prevented 50+ hospital admissions and enabled 102 people to die in their preferred place of death. 

Background 

A paradigm shift in healthcare services towards patient-centred care acknowledges an increasing need for the voices of healthcare service users to be invited, listened to, heard, and acted upon. Patient-centeredness takes a consumerist view of the quality of care, effectively shifting the traditional balance of power and viewing the patient as a healthcare consumer. However, as attractive as this concept appears, many healthcare providers find patient-centred care is difficult to conceptualise, institutionalise and operationalise. Accordingly, East Cheshire Hospice (ECH) approached the team at University of Liverpool (UoL) which, as a group of marketers working in a discipline that focuses almost exclusively on consumers, and whose research interests included healthcare – patients, families, carers and services, were identified by ECH as suitable to help address their problem. 

Specifically, the problem for ECH was that while anecdotal stories and other forms of feedback suggested the work of the hospice was meaningful, there was no systematic, robust way of capturing these experiences. Worried that such superb feedback could actually lead to complacency, the team at ECH commissioned the UoL team to undertake a ‘deep-dive’ into the different inpatient and outpatient services offered by ECH.  

Research 

Palliative care emphasises caring, not curing, and as well as pain treatments focuses on psychosocial, spiritual, familial and wider quality-of-life issues. An appraisal of the available palliative care evaluation instruments revealed that while some measure multiple aspects of service provision, none incorporated all areas. Drawing on services management tools and concepts, the research team designed the new Trajectory Touchpoint Technique (TTT), a new methodology to uncover opportunities for palliative care services with an emphasis on capturing overall ‘user experience’ and how users feel. 

Results suggested the new technique was superior to other available methodologies, leading to demand from several hospices (including chains such as Marie Curie, independent hospices and a children’s hospice) and palliative care providers (Macmillan, and an inpatient unit and outpatient services at two different NHS Hospital Trusts) to apply the technique to their services. In total, the TTT has been used successfully with over 225 palliative care service users. These users include inpatients, outpatients, discharged patients, families and the bereaved. The TTT also led directly to another related project and grant from Oakhaven Hospice, in which patients, their families, the bereaved, and other actors in the healthcare ecosystem including GPs, hospital doctors, district nurses, care home managers, and over 150 non-users from the wider public were included in a study to better understand previously under-served communities in order to give them a voice and identify the barriers to palliative care access.  

Impact 

In addition to informing Government policy the research has impacted ways in which palliative care services are designed, delivered, communicated, co-created, integrated with other healthcare services, and led to the launch of a completely new Hospice@Home service. These initiatives have benefitted patients and their families, palliative care staff, and other clinicians in the healthcare ecosystem. This includes Service Design (from Wifi access to room layout); Service Delivery (incl. counselling and staff training); Communication (e.g. debunking myths and patient-clinician communication); Value Co-Creation (incl. continuing support and feedback); Ecosystem Modifications (the ways in which hospices connect with other healthcare providers); and Home Services (enabling people to attain their preferred place of death). 

Ongoing Research 

The research has led directly to significant operational and strategic changes in the ways in which palliative care services are delivered across all collaborating organizations. Additionally, the research informed (via written and verbal evidence after an invitation to Westminster) the All-Party Parliamentary Inquiry into Improving Access to Hospice and Palliative Care which seeks to understand why one in four who could benefit from palliative care fail to receive it.