Transforming palliative and end-of-life care for service usersWed 13th Feb 2019
Everybody dies. Not everybody experiences a dignified and comfortable death. Research by Professor Pippa Hunter-Jones, Dr Lynn Sudbury-Riley and Dr Ahmed Al-Abdin 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.
Benefits and Impact
Findings included poor Wi-Fi signals in the wards and extensive library provision being unused due to patients being too tired to read. In response, some hospices improved their Wi-Fi provision, allowing people to use WhatsApp and other social media, providing valuable communication channels. Audio books and newspapers are now available for those patients too tired to read.
Preferences for single rooms over shared wards emerged as resulting from personality and sociability factors. Across each provider policy changes have resulted in more consideration of individual preferences. Changes have been initiated to support integration, e.g. purchase of hearing loops, new iPads, and talking boards.
Continuity of care, insufficient counselling sessions, and some non-cancer patients feeling that staff were ill equipped to deal with their illnesses emerged as problems. As a direct result, changes to doctors’ rotas now provide greater levels of continuity, whilst numerous providers are reviewing ways in which counselling services are delivered. Additionally, staff and volunteers are exposed to training on a wider range of conditions.
The research uncovered a great number of misconceptions of hospice services, e.g “the death house”. Patients’ stories, press articles, and new public-facing groups and staff posts have been developed to debunk the myths.
Problems with difficult conversations emerged, from one extreme (“looking back I think… they were trying to tell me something”) to the other (“the doctor was talking about the do not resuscitate form…I was taken aback, at that point nobody said that Jim was about to pass away”). Significant changes have been made to the ways in which clinicians communicate with patients and their families.
Discharged patients and bereaved families are now more involved in the value co-creation process. Bereaved families and discharged outpatients from various courses have now been helped to form groups for continuing support.
In an attempt to rectify discontinuity within healthcare provision, work is ongoing to make changes to the ways in which hospices connect to other healthcare providers. Planned changes include new training sessions with local family doctors on a (regular) bi-annual cycle, and a monthly lunchtime training forum catering for relevant professionals (e.g. care home managers).
New Hospice@Home Service Launched
In 2017 East Cheshire Hospice launched Hospice@Home. This innovation came about as a direct result of better understanding the true value of its service provision, and indeed the crisis levels some families experienced before they received the service. Hospice@Home supports families to care for loved ones at home in their final days. In the first 5 months, 175 new patients received the service, avoiding over 50 hospital admissions, and enabling 102 people to attain their preferred place of death.