Home Care Day 18: Palliative and end of life care blog from Katharine Ross
I’m delighted to say that my two sons are now of an age when I can introduce them to some of the cinematic delights of the 1980’s that I enjoyed as a teenager. We recently had a movie night together, watching Back to the Future – a well-known and much loved American sci-fi movie about a boy who accidently travels back in time from 1985 to 1955. One of the more dramatic scenes involves the film’s main character, Marty McFly, experiencing his existence slowly being erased – along with that of his much-loved family. This was a direct result of Marty inadvertently altering the future through a series of decisions and actions whilst being ‘back in time’ (cue cheerful humming of the pop-rock-legend Huey Lewis and the News hit single…)
The theme of losing somebody, or part of oneself, very much made me reflect on recent Scottish Care reports - notably ‘Trees that bend in the wind’, which explored the experience of front line support workers delivering palliative and end of life care (PEOLC) and ‘Fragile foundations’ which sought to uncover the largely hidden world of older peoples’ mental health and that of the workforce which support them. During one of the research focus groups we conducted as part of our Supporting Solace project, one of the participants described caring for somebody at the end of their life so eloquently. They used the phrase “We are the trees that bend in the wind” to describe the ways in which they adapt, change and are changed by the circumstances of the dying journey. It implies pressure, strain and the risk of breaking - or at least of losing part of oneself in the process.
Palliative and end of life care is premised on impending loss and as such can be frightening, traumatic and lonely - often pushing people to their absolutely emotional limits, and sometimes beyond. It can also be beautiful, peaceful, comforting and full of love and I can certainly relate to this juxtaposition of emotions during my time as a director of a care at home organisation in Edinburgh. While it was an absolute privilege to be part of so many people’s dying journey, it was not without its challenges.
Sadly, there continues to be a lack of meaningful and timely partnership working arrangements with PEOLC specialists and support services which can often result in care at home organisations and their workforce feeling isolated, afraid and unsupported. This often manifests in the workforce feeling undervalued and insignificant or as one support worker said, “….we are at the bottom of the pile.” There is also substantial pressure on support workers to communicate the dying journey - both to the person who they are support and their family. As one care worker said, “I don’t know what to say….it can be overwhelming. We try and say what we think is right. It just comes out. You feel like you’re apologising all the time.”
The loss felt for somebody you have loved or cared for deeply can be overwhelming and all consuming. I once heard somebody say that “Grief is like wearing a very tight pair of shoes that you cannot take off. Just as you can think nothing else other than your feet hurting, so also in your grief you can think of nothing else but your loss.” The death of an individual who has been receiving focused care – in their own home or in a care home - cannot be seen as end point on the palliative and end of life care journey for care workers and family members.
Unfortunately there is a palpable absence of bereavement support for the social care workforce who, in reality, provide the vast majority of palliative care in Scotland. There’s an urgent need for the development and co-ordination of high quality post-death support services which are designed to be easily accessible for care home and care at home staff involved in PEOLC. I am delighted to be working with Scottish Care colleagues, NES, the Care Inspectorate, Glasgow University and others to identify how we can put into practice the development of better, more integrated bereavement support at a policy and practical level on a national basis. We will be sharing more information about this project with you soon.
Unlike Back to the Future it’s going to take more than a modified DeLorean and a fully functional flux capacitator to avoid yet more people losing part of themselves caring for people at the end of their life – and to prevent the sector losing a dedicated, committed and skilled workforce.