Nursing leadership in the Palliative Care Team at the Royal United Hospitals Bath NHS Foundation Trust identified that staff had more confidence in supporting patients with palliative and end of life care in the last few days of life compared to the weeks and months prior to a patient dying. This unwarranted variation led to the Palliative Clinical Nurse Specialists initiating a response with ‘The Conversation Project’. This project aims to support the education, development and support for staff to increase the quality of end of life care for patients, families and staff across the Trust.
Where to look
The Palliative Clinical Nurse Specialists recognised unwarranted variation in the support being provided to palliative and end of life patients. Interviews with staff about their end of life care-giving experience uncovered that staff felt more comfortable with the care they provided once they knew that the patient was in their last few days of life, compared to the weeks and months prior when things seemed very uncertain and the patients’ care and management was less clear.
They knew this lack of clarity was especially difficult for patients and families, impacting on their understanding about the future and direction of their condition, leading to uncertainty and concern. Underpinning all of this was the importance of entering dialogue with the patients and their families about what was happening to them, to help them express their concerns and worries and to consider their preparation for the future.
There was recognition of the need to better support patients with their decision-making and management of care at an earlier stage which would enhance the experience of patients, families and staff.
What to change
Staff often found their conversations with both the patient and their family towards the end of a patient’s life difficult. Decisions about the management of care at the end of life could often be made late. Many thought ‘end of life’ meant just the last few days of life. Research of varying strength suggests healthcare professionals are often more optimistic in their prognosis of illness. This often leads to end of life conversations not being identified early enough, with a patient approaching the final weeks and months of their life not always being recognised. Other barriers identified included avoidance of perceived ‘difficult’ conversations (NICE 2017).
The things that needed to change included:
- An earlier recognition that the patient is approaching the end of their life or is facing an uncertain future;
- To facilitate and raise awareness for the need for earlier conversations with patients and families about their current situations;
- To improve the documentation of those important conversations;
- To include these discussions in the ward multidisciplinary team (MDT) meetings to support a shared involvement and understanding of the needs of the patient and family;
- To improve the transfer of information pertaining to a patient’s end of life on discharge or transfer of care;
- To bring about a cultural shift in how their hospital recognised and engaged in the care of the dying;
- To ‘normalise’ end of life conversations and to help staff recognise that anyone of us could be with patients when they wish to discuss their fears and wishes as their condition deteriorates.
The Conversation Project was developed to support and provide the focus for change that they had identified was needed.
How to change
The change has been driven by hearing and understanding the experience of patients, families and staff. This was then developed through an improvement programme with the Point of Care Foundation and the Kings Fund. Further developments have supported this initiative, so that it is recognised across the Trust:
- Education, role modelling and the influencing of key staff;
- Ward multidisciplinary team (MDT) meetings include earlier recognition that the patient is approaching end of life;
- Staff more readily recognise their role to have conversations with patients and families about what is happening and/or listen to their worries;
- These conversations are more readily documented and transferred when the patient is discharged;
- A cultural shift in how staff view end of life care and a greater engagement with attending to the needs of the dying patients and their family.
The Palliative Care Team have developed resources to support the objectives of The Conversation Project, including:
- White board magnets to promote advance care planning conversations;
- CHAT Bundle (Consider, Have, Advise, Transfer);
- Planning Ahead guidance leaflet;
- Planning Ahead – My Wishes leaflet;
- Intranet resource.
The patient and carer experience group has been involved in the development of the patients and family information resources to support the Conversation Project. They have engaged with the public and Trust members to understand their views around communication and end of life care and built this in to the work that is happening:
- A ‘caring for you’ event (2017) shared information on the project and sought feedback from Trust members (patients, family and public) on end of life care and advance care planning. The feedback recognised the importance of having conversations earlier to enable patients and families to plan-ahead;
- A bereavement feedback questionnaire for more general feedback on support received;
- ‘See it My Way’ events in Dying Matters Week (May 2017, 2018) to share experiences of patients and families around communication, conversations around end of life care and care at the end of life with staff;
- Four bereaved families and four patients living with a life-limiting condition were supported to talk about their experiences of care;
- At both ‘See it My Way’ events, the families and patients were filmed, resulting in two short 15-minute films which supports ongoing staff training.
Initially, measurements included the numbers of patients recognised as entering the final phase of their lives, the inclusion of this in ward MDT meetings, the evidence that conversations took place and the documentation of these conversations. In addition, evidence that this information was transferred with the patient on discharge was included. The palliative care team continue to seek evidence that the patients are identified on the wards, education is ongoing and further work is happening with consultants and teams across the hospital.
Better outcomes – There is a greater awareness of the needs of patients and families as the patient approaches the final phase of their lives. There is improved engagement with staff, patients and families about their understanding of their illness, the focus of care and planning for the future. Further work is ongoing with specific areas of care such as respiratory medicine and cardiology.
Better experience – Staff have been openly engaged in this work, they understand the importance of the dialogues they are having with patients and families and the need to help them prepare for the future. Staff need support to enter conversations and the words and phrases to improve their confidence and skills. This work is ongoing. This is a patient-centred approach to care, to listen to the patient and their family, to check their understanding and work to meet their choices as far as possible. Patients receive better care if listened to and the focus of care is based on what is important to them. If patients feel heard and responded to, their experience of care will be enhanced.
Better use of resources – Patients receive appropriate care towards the end of their life and have a greater choice in their place of care, with less time is spent in hospital if their wish is to receive care elsewhere.
Challenges and lessons learnt for implementation
There has been a great deal of learning from this initiative; from what matters to patients, families and staff, to driving change within teams and across an organisation.
The Conversation Project and the themes are identified across the hospital. Staff understand the importance of the earlier recognition of patients approaching the end of life. Conversations are improving with more work still to do. Staff engagement is good, with some areas more on board than others. Staff turnover and workload affects the change process.
The ‘why’ and ‘how’ of the project is a continuous focus of this work – to maintain staff engagement and link with new staff. Education is a challenge in an acute hospital, seeking to deliver informal teaching, role modelling, supporting the use of tools for recognising prognosis and communication skills. There is always more to do and change is a continuous process.
Identifying that change can happen when driven by a committed group, with a clear message, underpinned by an understanding of the needs of patients, families and staff.
Lessons learnt include:
- Avoid the need to change everything all in one go, but to continue to strive for small changes in a consistent manner;
- Identify what staff, patients and families feel is most important and work with that;
- Seek out key staff and work with them, use them to support the change;
- Feedback and support regularly;
- Ensure that change is to the patients’ benefit. Evidence the change and report back to clinicians.
For more information contact
Lead Nurse Palliative and end of life care
Senior Palliative Clinical Nurse Specialist