The Link Nurse and Residential Care Home Schemes were established at DHHC in 2004 and 2014, respectively. The aim of both schemes was to foster links between local homes and the Hospice, to help support staff in caring for dying people, to provide an ongoing education and training programme with up-to-date knowledge of end of life care and to provide opportunities for sharing good practice and networking. While we have made great progress over the years in meeting these aims, delivering education in this area is not without its challenges, as Education Facilitator, Kathryn Rosenberg, explains.
Since the release of the End of Life Care Strategy in 2008, there has been a growing recognition of the need for staff working in the aged care sector to have greater expertise in this area given the increasing frailty, dependency and co-morbidities of those with whom they work.
Yet regardless of this recognition, barriers remain in the delivery of high quality end of life care within care homes. Members from both schemes have spoken openly about what they perceive these barriers to be, namely poor communication between nurses/health care assistants and physicians, a lack of advance care planning, inadequate staff support, a lack of knowledge around the dying phase, not knowing what to say, a fear of getting it wrong and the feeling that death is a taboo subject that needs to be avoided with patients and families.
The idea that there exists a societal taboo around death is a complex one. On the one hand, we are saturated by death on a daily basis; we only have to turn on our TV or go to the cinema to be confronted by image after image of violent deaths.
We are often okay with this because we can place it in a context that is far removed from our own reality and day to day life, yet the failure to either recognise or acknowledge that death is approaching shows that a taboo may indeed exist when it comes to discussing death closer to home.
Feedback from both groups around the above barriers highlights that there continues to be an ongoing need for training that focuses on equipping staff with the confidence needed to initiate conversations that are often difficult and sensitive in nature. What often comes through when working with care home staff is a lack of trust in their own skills and ability.
Part of the focus of all education sessions that we deliver is highlighting to people that so many of the skills they need to engage in conversations with patients and families are innate ones that they already have inside of them.
We often get sidetracked thinking we need to rely on official tools and frameworks for working when most of it comes down to just being willing to sit with someone and listen to what’s important to them. Being brave enough to facilitate a conversation and allowing someone to feel heard is often the greatest gift we can give to those approaching the end of their life.
However, perhaps the single most important factor that often impacts on the registered and unregistered workforce’s ability to deliver a high level of end of life care, is the lack of education and training available to them. When education opportunities are present, the take up is often poor due to organisations being short staffed, resulting in training taking a backseat to clinical care. Schemes like the ones facilitated by DHHC are crucial in bringing together staff from a variety of homes across the patch to enable them to share experiences and assist in the integration of theory and practice.
If we are going to ensure that all individuals in care homes receive a high level of end of life care then we must recognise that we all have a part to play. Care homes are part of a larger system and the quality of the relationships they have with other parts of that system and the external support that they receive will greatly determine the quality of care that they can provide.