Understanding access to palliative and end of life care services v1
Research type
Research Study
Full title
Understanding palliative and end of life care access within a health ecosystem: An examination of the issues facing providers and service users.
IRAS ID
275158
Contact name
Daniel Lewin
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
This study will seek to understand the experience of accessing palliative and end of life care services in one Primary Care Network (PCN). A Primary Care Network is a group of GP practices functioning together. Within the PCN are other healthcare services that also support the local community. Together these organisations form a healthcare ecosystem. As a relatively new organisational care structure within NHS primary care, there is opportunity to understand areas for improvement and areas of best practices.
This study will involve a single interview with each individual participant, such as current palliative and end of life patients, the patient’s relatives, the bereaved, and healthcare staff. To elicit the perceptions and level of understanding in the population, a survey of local people will be conducted. Through these perspectives, a holistic understanding will be developed of what happens when a patient needs palliative and/or end of life care and what challenges are faced. This is important because according to Hospice UK , 1 in 4 UK families are unable to access the end of life care they need (Hospiceuk.org 2017).
Eligible participants for interview will be adults with capacity to decide to participate and include: healthcare staff working locally, patients on the palliative care register at one of the GPs in scope, relatives of the included patients, bereaved family members of patients that were on the register. Eligible participants for the survey will be the local adult population with capacity to decide to participate.Hospiceuk.org (2017) Briefing: Open up hospice care, Hospice UK,
SUMMARY OF RESULTS
The study sponsor was the University of Liverpool. This student project was funded by a collaborative studentship from the Economic and Social Research council in England. This type of funding assists a research student to complete research within an organisation.
Public involvement in this study included feedback on the study plan and information that participants would read. This feedback was given by people that had experienced the death of someone close to them. Professional healthcare workers with experience of working in palliative care also gave feedback. They did this at different stages of the study. This included feedback on information participants would read, and the study plan.
Study interview data was collected in the summer of 2023 in one group of GP practices in England. The privacy of the participants is being kept.
Participants in this study included:
• 18 patients and their family members receiving palliative care,
• 17 healthcare staff members with experience of working in palliative care,
• 22 healthcare leaders with management responsibility and experience of palliative care.
This research was important because GPs and district nurses will have more responsibility for palliative care in the future. More and more people are living longer into old age. They are also suffering from more than one illness at a time. People want to be at home which means they will be cared for outside of hospital by the GP practice, and the district nurses. Some will also have hospice care. Palliative care can bring comfort and support if started at the right time. However, everyone must understand what it is, and how it can help.
The main questions in this study asked about people, resources, rules, and value:
• Who the people are in this study setting?
• What resources are available in this study setting?
• What rules and habits are found in this study setting and how decisions are made?
• What do the people in this study setting think is valuable?
• How do people in this study setting work together to make value for themselves and for others?
• How hard is it to make value across this study setting?
This study involved private interviews with each participant. No medications were taken, or new equipment used as part of this study. Each participant was involved in a palliative care approach as a patient, a family member, a healthcare staff member, or as a leader. 57 participants jointed the study.This study found that each group had worries. Patients worried about their illness but also worried about their family. They did not want to be a burden. Families worried about doing everything they could. They also worried about not taking more than others. For some families these worries cost them their own health. Healthcare staff and leaders also work very hard for their patients and people. Often doing more than they are expected to. This can become tiring and lead to burnout. Which can lead to lower quality care for the next patient. They try hard to stop this from happening. Building team community is one way that has helped.
This study found that in this study setting there are ways to really use the resources they have. Appointments, equipment, and medications are managed so that they are not wasted. What is sometimes hard is everyone agreeing on these new ways of working. This will continue to improve by building relationships and better understanding the needs of each person. The new job roles in GP practice are important for this work. Care coordinators, and practice pharmacists are just two examples. Both work with patients and families at difficult stages in their care.
Being a palliative care patient is stressful. Being the family of a palliative care patient is a lot of pressure. Everyday life tasks can become harder because of this pressure. The people from these everyday life tasks can shape the palliative care journey. This happens even though they do not know about palliative care. This study found that people who do know they are part of palliative care seem to share the same values about palliative care. They do not all have the same training or understanding. However, they often approach tasks and people in the same ways. They are very caring, they want to learn more, they want to listen, and they believe it is their calling to do so. That calling may be for a short time. However, it becomes very important in their own lives. Eventually every person must leave. Patients die. Families may return for their own support, or they may not. Some staff decide to leave but come back because palliative care is so important to who they are.
This study found that it can be hard to manage the usual tasks and the changes. People in this study setting work together. This can create good experiences for every person in the study setting. This can also help the different teams to continue to do the work they do well. Changes are taking place. Hopefully those changes are helpful. Using computers is more common now. They can help to speed up tasks and create records. They can help to provide patient information when it is really needed. There is sometimes a gap between people that use the computers and people that do not. This gap can cause double work or possibly important information to be missed. Even when computers are used, the information shared must often be entered by another person. If they do not share enough, then the information is not helpful. This can create more work.
This study found that different teams share resources such as knowledge and training. However, sharing equipment between some teams has not always been easy. Keeping the palliative care service going with more and more pressures is becoming more difficult. Different teams usually work together well. This has not always been true. They are doing more to build relationships. They will need to work together well to overcome the increase in patients.REC name
South Central - Berkshire Research Ethics Committee
REC reference
20/SC/0376
Date of REC Opinion
23 Oct 2020
REC opinion
Favourable Opinion