Katharine Ross, Workforce Lead for Scottish Care, shares her experiences of being part of palliative and end of life care research with home care staff
In my role as the National Workforce Lead for Scottish Care I’m constantly inspired and moved by the dedication of our care at home workforce providing care and support to some of our most vulnerable citizens across Scotland. I’m pretty much overwhelmed with admiration when I speak to providers and front line support workers about the compassionate palliative and end of life care (PEOLC) they deliver – day in, day out.
A Scottish Care research project I’ve been involved with explored the reality of PEOLC delivery in care homes and care at home organisations from the perspective of front line support workers. At four locations across the country my colleagues and I were privileged to listen to the reality of delivery end of life care in individual’s own homes. We heard extraordinary stories of physical, practical, social, and spiritual support - all of which was being delivered by dedicated and committed front line support workers.
This is a workforce which, in reality, provides the largest proportion of palliative and end of life care in Scotland - but whose voice is often unheard and unacknowledged.
A workforce which, sadly, is all too often associated with a “shopping and mopping” service - and which is not recognised or appreciated for the complex technical, clinical, and emotional support delivered by them day in, day out.
We listened to their experiences and recorded their thoughts, emotions, concerns and ideas.
We heard support workers sharing their experiences of caring for older people at the end of their lives, often with little or no specialised training. One participant said quietly:
“I want to be able to explain to somebody exactly what’s going to happen (when they die). I want to be able to stop someone being afraid”
We also heard about the challenges involved in having open conversations about dying. As another support 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 commitment of the workforce was evident, with numerous examples of activities taking place outside of what we may consider to be a standard working day for a home care front line support worker. As somebody said:
“We cared for somebody in their own home. After he died, we went in to strip the bed and return the room to normal because we knew his wife couldn’t handle doing that. We did it in our own time.”
Love and compassion were palpable in every conversation and can be captured in a comment made by one focus group participant:
“Everyone I’ve looked after….they’re in here. They’re in my heart.”
I suppose what we really captured was the human impact of delivering care at the end of someone’s life, and of doing this in challenging conditions on a regular basis - for multiple people.
For care at home support workers the reality of death, loss and grief is something they’re required to face on a daily basis. Integration activities and the redesign of primary care provision must therefore embrace this. Support mechanisms need to be in place to develop enhanced training and education and facilitate the creation of a system which supports solace - not one which commissions and pays for end of life care in the community by the minute.
Our findings have been captured in a report entitled Trees that bend in the wind – which was how one of the focus group participants described what it’s like being a support worker involved in somebody’s dying journey; you have to adapt, change, bend and flex to their individual journey and to experience it with the supported person. Bending, but not breaking; trying not to lose part of oneself in the process.
But at what point do front line support workers break – physically, and/or emotionally? There has to be greater recognition of the fact that if the frontline social care workforce breaks, so does the entire integrated health and social care system.
Trees that bend in the wind made 12 recommendations. Some relate to the individual who is dying – for example the development of work which embeds a human rights-based approach to the exercising of choice and control at the end of life. Dying of frailty or dementia, for example, should have a specific pathway in the same manner as those which have been successfully developed for cancer and other conditions. Other recommendations relate to the workforce, and to the policy conditions which ultimately dictate practice.
Delivering palliative and end of life care to older people in somebody’s own home requires highly skilled, technical and practical interventions. It also involves providing emotional support, a familiar face, a hand to hold, family liaison and so many more forms of care and support that cannot be captured in any job title, not least ‘a home care support worker’.
That is why I’m delighted to be working with my Scottish Care colleagues, providers and stakeholders to ensure more people understand the complexity of care at home delivery.
Please take a few minutes to watch the short Trees that bend in the wind animation and share with your friends and colleagues. It beautifully captures the loving, dedicated and extraordinary voices of the front line social care workforce.
I’d be delighted to hear from you so we can ensure these voices are heard more widely.
National Workforce Lead – Scottish Care