The best possible end-of-life care cannot be delivered in isolation to patients alone (Leadership Alliance for the Care of Dying People, 2014). Sitting with a dying relative or friend in an acute hospital can be both physically and emotionally exhausting (Miller et al, 2022). A key component of the National Audit of Care at the End of Life (NHS Benchmarking Network, 2022) is that it advocates that caregivers, families and friends are asked about their needs, experiences of care and communication.
As health professionals, we will never be able to take away the sadness and grief associated with dying and the death of a loved one. What we can aspire to is positively influencing the memory-making by providing compassionate care to dying patients and their carers and loved ones.
A service evaluation adopting the Walking the Walk quality improvement design provided an experience-based approach to view the hospital through the eyes of caregivers and family visiting dying loved ones (Claire Henry Associates, 2019). Following ethical approval, a review group of eight participants with personal experience of caring for a dying relative, including people from marginalised groups, was selected through purposeful sampling.
Reflecting the Walking the Walk design, the review focused on four key areas of care:
- Involvement in care of the loved one
- Access to help and support
- Care after death
- The bereavement process.
Restricted by the COVID-19 pandemic and infection prevention guidance, the exercise was delivered virtually, which notably detracted from the recommended ‘fresh eyes’ approach in terms of sensory perspective. As an alternative, more than 100 photographs and videos were presented to participants illustrating the journey that caregivers, family and friends would make from entering the car park to visiting the bereavement suite and mortuary. This enabled participants to provide feedback and observational data in addition to facilitating opportunities for personal reflection.
Data were collated and coded using thematic analysis (Braun and Clarke, 2006), providing rich and meaningful information to enhance the delivery of end-of-life care. This enabled recognition and celebration of good existing practice, as well as further developing and sustaining high-quality end-of-life care across the trust.
Findings were presented to the hospital management team; pockets of excellence were acknowledged and areas of development that the trust might wish to consider were suggested. The emerging themes reflected those within current literature (Dosser and Kennedy, 2012; 2014; Ó Coimín et al, 2019).
Priority was given to enhancing non-verbal communication, provision of resources to support caregivers and family members to stay at the patient's bedside, access to a quiet family space, including a kitchenette, and washing facilities; this created a more inclusive spiritual space, and the decor and ambience of the mortuary visiting area were improved.
Tranquil space for visitors
A presentation to Northamptonshire Health Charity supported the transformation of two side rooms into pilot Swan rooms to support the delivery of end-of-life care with a particular focus on the needs of caregivers, family and friends. We know that not all families and friends live locally; some travel long distances to be with their loved one at short notice. Swan rooms create a tranquil environment decorated with a wall and/or window decorations to enhance the surroundings.
These rooms are equipped with chair beds where people can sit or sleep by the bedside, and comfort cabinets containing toiletries, information resources, phone chargers, Bluetooth speakers, LED candles, blankets and pillows. There is also a hospitality tray and an assortment of hot drinks so visitors do not need to leave the ward or worry about disturbing ward staff when in need of a drink.
Where patients are too unwell to move or the Swan room is not available, the bedside chair bed and lockers are on wheels and can be moved to the patient's bedside if they are cared for in a bay or an alternative side room.
Efforts to enhance communication have included the implementation of Swan door signs and curtain clips to identify the delivery of end-of-life care as well as written information for caregivers, families and friends. These booklets focus on the signs and symptoms of dying, physical care and emotional and spiritual support, including care after death. They also include a QR code to give caregivers, family and friends the opportunity to provide feedback. Organza bags for returning deceased patients' jewellery have now also been made available, along with property bags made of cloth rather than plastic.
Each room cost approximately £3500 to decorate and equip with resources. In March 2022, the first pilot Swan room opened. Feedback to date has been overwhelmingly positive:
‘The Swan room made all the difference in the world, along with the nursing care. She has been left with contented memories.’
‘For us as a family, to be able to kick off our shoes and put our feet up in the comfort of the Swan room was everything we could have wished for. We had our time and space to say goodbye properly, we used the speaker to play favourite songs, and took flowers from our garden and photos of family and dogs.’
‘The Swan room was such a help to my family, and my parents in particular, to be able to stay with her and for us to be able to chat as a family and support each other.’
Within 3 months of opening, a charitable donation was received from a family who had used the room, which completely funded a third Swan room. There have since been two more donations from families, which provided the full cost for two more rooms.
Presentation of a successful bid at the trust's Dragon's Den event subsequently led to an additional £17 500 to fund a further five rooms. This has enabled the Swan room initiative to be rolled out across the trust, supporting end-of-life care within medicine, oncology, urgent care, surgery, stroke, elderly care and respiratory medicine. Funding has also allowed two bespoke Cygnet rooms to be introduced to support end-of-life care in paediatrics.
Room for the family
A further presentation to the senior nursing team and Northamptonshire Health Charity helped to secure a space and funding from the Hannah Payne Memorial Trust to introduce the Hannah Payne Swan Family Room and adjoining bedroom.
This is a tailored space to support the needs of caregivers, families and friends visiting dying loved ones, allowing them space for quiet reflection, to take a break away from the bedside and help themselves to a drink and use the kitchenette facilities. Alternatively, caregivers may make use of the bedroom and washing facilities while being able to stay close to their dying loved one.
What we do know about end-of-life care is that the small things really do make a difference, as is reflected by the feedback in relation to the family room:
‘The little self-care packs are really helpful; we are so thankful for all the support and use of the family room, which allows all nine family members to be close by.’
‘This family room has been an essential part of our end-of-life journey—spacious and comfortable for our family to be together in our grief. Well equipped with all essentials and some personal touches. My sister and I have both used the bedroom which was most beneficial to our wellbeing—thank you so much.’
‘Really impressed with this tranquil and well-equipped room.’
End-of-life care is a continuum of care and does not stop at the time of death. Ensuring individual patients receive dignity and high-quality care after death remains a priority, from performing last offices to transferring the patient to the mortuary, as well as ensuring that the deceased patient is appropriately preserved to allow caregivers and loved ones the chance to say their final goodbye.
The Walking the Walk mortuary transformation is now under way. We know that visiting the mortuary is a memory that will never fade. We have one chance to get this right and need to ensure that we help to promote contented memories.
Patient and carer experience is extremely important, and how a hospital feels and looks can demonstrate that an organisation cares. Walking the Walk and the Swan room initiative have helped embrace a culture that champions end-of-life care and will continue to form part of the annual end-of-life service review to help further enhance this area of care at Northampton General Hospital.