Katharine Ross’s talk on realistic palliative care

The following is the text of an address Katharine Ross, Scottish Care’s National Project Lead on Workforce, gave this evening to the Scottish Parliament’s Cross Party Group on Palliative Care. The theme was ‘Realistic Medicine.’

I would like to thank the Scottish Partnership for Palliative Care for inviting me to speak this evening.

I’d like to discuss the principles and ethos behind Realistic Medicine, and how it relates to the people who delivers the greatest volume of palliative and end of life care in Scotland – front line social care support workers.

The principles of Realistic Medicine as we all know are:

time, open conversations, honesty putting the person receiving health and care at the centre of decision making and creating a personalised approach to their care.

In the context of this evening’s discussion, I’d like to explore how good we are in Scotland at putting our older citizens who are dying at the centre of decisions being made which enable a personalised approach to their death.

At the end of 2016, Scottish Care undertook a significant piece of research 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.

At four locations across the country I, along with my Scottish Care colleagues, 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 front line support workers.

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

We heard of the importance of time and honesty. 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.

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. 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.

The ethos of Realistic Medicine – time, open conversations, honesty – are critically important for all of us in this room to have, to ensure that all older people in Scotland experience a person centred death.

 

 

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