good life, good death, good grief

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How aware are we of the impact of caring for older people?

In this special blog to mark Death Awareness Week Scotland, Katharine Ross discusses the enormous contribution made by front line support workers employed in care homes and care at home organisations to the delivery of palliative and end of life care for older people. She asks:

"Can we honestly say that we adequately resource the social care sector to train its staff to an appropriate palliative level?

"Do we ensure sufficient time is given for a care at home support worker, to listen, to have open conversations, hold somebody’s hand, to comfort, provide love, to wipe a tear of fear away?"


“You know, I’ve never actually really believed that death is inevitable.
I just think it’s a rumour.”

This quote from David Carridine – actor and martial artist - makes me smile. When asked about his attitude towards death, Carradine responded tongue in cheek and proffered the case that death is “just a rumour”.

If only! We know dying will come to us all, and most people reading this will have experienced the death of a loved one, or somebody significant in their life. The loss, the sadness, the devastating grief - all so very real and often so utterly overwhelming.

Death is happening everywhere; it’s most definitely not a rumour. In Scotland around 54,000 people die each year and over 200,000 people are significantly affected by the death of a loved one. In general, we are dying at older ages - sometimes accompanied by frailty, dementia and multiple medical conditions. The number of people dying each year is rising, driven by population growth. By 2037 the number of people dying each year will have gone up by 12% to 61,600. It is thought that up to 8 out of 10 people who die have needs that could be met through the provision of palliative care.

With this knowledge Scottish Care decided to undertake a significant piece of research at the end of 2016 which sought to explore and describe the experiences of front line support workers employed in care homes and care at home organisations who were involved in the delivery of palliative and end of life care for older people.

At four locations across the country my Scottish Care colleagues and I were privileged - and often moved to tears - listening to examples of compassionate end of life care. We heard extraordinary stories of physical, practical, social, emotional and spiritual support being given to older people - all of which was being delivered by dedicated, committed front line support workers who provide the largest proportion of palliative and end of life care in Scotland.

We captured extraordinary stories such as the care home staff team who formed a guard of honour as a resident left their home for the last time.

We listened while front line social care workers – all too often underpaid and undervalued - shared 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 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”

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.

Indeed, a focus group participant was the inspiration for the title of our publication. “We are the trees that bend in the wind” is how this person described a workforce which adapts, changes and flexes to the journey of palliative and end of life care, and experiences it with the supported person.

But this phrase also relates to a workforce under sometimes intolerable pressure and strain, at risk of breaking, or at least of losing part of oneself in the process of providing end of life care. Delivering palliative and end of life care to older people 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 support worker’.

In our report, Scottish Care have 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, especially relating to the rights of older people. 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. Scottish Care believes the very real issues of ageism and resultant chronic underfunding of Scotland’s older people who need care and support must be addressed as part of this.

Other recommendations relate to the workforce, and to the policy conditions which ultimately dictate practice.

There has to be a greater emphasis on honest & open conversations about how we pay for and commission palliative and end of life care – especially for older adults. Can we honestly say that we adequately resource the social care sector to train its staff to an appropriate palliative level? Do we ensure sufficient time is given for a care at home support worker, to listen, to have open conversations, hold somebody’s hand, to comfort, provide love, to wipe a tear of fear away?

The answer is no.

Death is not a rumour; it’s very real and we need open, honest and progressive conversations about the delivery and funding of palliative and end of life care in Scotland as a matter of priority. Scottish Care welcomes the opportunity to work with The Scottish Partnership for Palliative Care – and others – to ensure this happens.

Katharine Ross - National Workforce Development Lead - Scottish Care. The Scottish Care report Trees that bend in the wind can be accessed here:

Trees that Bend in the Wind: Exploring the Experiences of Front Line Support Workers Delivering Palliative and End of Life Care

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