Our challenge

We have developed a play and educational resource “Homeward Bound” to inspire clinical teams to reflect on the importance of compassionate person and family centred care for patients towards the end of their life. This play is based on the lived experience of Lesley and Seth Goodburn and shares their story following Seth’s late diagnosis of stage 4 pancreatic cancer. 

There have been over 150 performances of the play across the UK including presentation to Guy’s and St Thomas Clinical Champions Network. The play won the partnership at the 2016 Patient Experience Network National Awards and was a finalist in the compassionate care category in the 2017 HSJ awards. The educational resources has been downloaded over 200 number of times.

Seth’s / the Homeward Bound story reflects times when recovery was uncertain.  

Uncertain recovery is a complex and emotive area. There are a number of existing barriers resulting in clinical teams not letting people “into the secret” of how unwell someone is or think they have, but haven’t. “Homeward Bound” highlights some important challenges: even if someone is very “health literate” and usually confident, in these situations it can be hard to know what you want and when you do know, it can be hard to be heard. Compassion and empathy is needed all the time.

The AMBER care bundle is a communication tool to help clinical teams to recognise and act when patients have clinical uncertainty of recovery.

Training and education interventions are necessary but not sufficient to sustainably improve quality.  Connecting the power of the story, with training and education and clinical systems improvement may go further with a better understanding of:

•       How to help patients and families to acquire the “power” they need and wish for when they are acutely unwell and there is clinical uncertainty of recovery
•     How and if the ways of providing care can be designed to ensure consistency of good communication and empathy

The aim is to:

To ensure that patients are encouraged and enabled to have conversations about their wishes and preferences for care at a time when they are most likely to feel vulnerable and their clinical situation can be unpredictable.

We aim to achieve this by:

Understanding what could help patients and families in periods of uncertainty

Exploring the current language used by patients and clinicians by using the “Homeward Bound“ narrative as a catalyst to initiate discussions and move towards a shared understanding of vocabulary and likely cues expressed.

Supporting the wider education and understanding about clinical uncertainty of recovery,

Understanding what if any health literacy approaches and /or improved information and resources would help patients and/or those important to them 

We intend to:

Review available and relevant information and communication resources

Based on this, develop resources (including navigation to existing resources and/or co-design new resources as required) and new approaches to care for patients, relatives and clinical teams to enable “certainty at a time of uncertainty”.  This may include: conversation prompts, materials in wards, handover of main points in important conversations.   

Apply quality improvement methods to test and develop these together with people with lived experience and clinical teams. 

Anticipated Benefits of the Project

• Greater understanding of what is important to patients / families when they are acutely unwell to enable appropriate shared decision making
• Resources to help patients and their families when there is clinical uncertainty of recovery (either new or navigation to existing resources)
• Create more supportive open and honest conversations with patients and families to make decisions about “what’s important to me”.
• Alignment to clinical systems improvements
• Improved ability to meet patient’s wishes and preferences for care
• Developing an understanding of narrative and language during a transition and how to best co facilitate care planning and delivery of care.
• Understanding the human relationships involved in the context of uncertainty using a relational value survey developed by Whole Systems Partnership
• Building knowledge and peer support with the Hospice UK people in partnership
• It would align with the Q Peer support work in supporting peer support principles of
• underpinned by values and principles that
• recognise people’s resources and potential,
• driven by what people want and need,
• co-produced and provided by people with experience of living with the condition,
• It establishes a culture of mutual benefit and sharing experiences with each other as equals.

Anticipated Benefits to Q community

• Keeping the focus on quality and the essence of the story in Homeward Bound
• Build to the evidence of why we need to put patients and those important to them at the centre of care and that communication is an active ingredient of care but needs to be honest yet compassionate
• Adding insights on how it is possible to cede power to patients and those important to them, when there is clinical uncertainty and the unfamiliarity of the situation can be disempowering
• Wider awareness of existing resources and materials
• An opportunity to support wider roll out and adoption of resources
• We would envisage wider roll out via existing networks within Hospice UK and the AMBER Network so support from the Q community to share and support transferable learning would be important.