Frailty, palliative care and me

by Tim Warren, Policy Lead for Palliative and End of Life Care, Scottish Government

Tim's mumMy mum lives eight hours away, within earshot of Glastonbury (if only her hearing was a little better). Her frailty is a pressing reality. All of the issues which press in at work – frail older people, most with a host of health issues, increasingly lacking capacity, exhausted family carers, stretched paid carers, the role of GPs, district nurses; it all feels very personal.

As the policy lead for palliative and end of life care at the Scottish Government, I frequently have to answer questions about what I do. I usually begin with how ignorant I was when I took on this role, when I mistakenly thought palliative care was basically about hospices and cancer. Of course, I now appreciate that the lion’s share of palliative care is about supporting frail older people like my mum.

When does care become palliative?

So, good care, provided to people at any stage of their care pathway, becomes palliative with hindsight when the person dies. Specialist palliative care, provided in any setting is clearly ‘palliative’. From this perspective, good care, provided in care homes, or by informal carers, supported by district nurses and GPs, and encompassing the spiritual, social and psycho-emotional and the physical, is also ‘palliative care’.

The strategic framework for action on palliative and end of life care (SFA) starts with support for identifying people who stand to benefit from a holistic palliative approach, highlights the importance of conversations with those people (and those who care about and for them), and then aims to provide coordinated care across all settings.

So, who might benefit from a palliative approach?

At what point does support for people with long term conditions become early palliative care? I have come to think about this in two ways. Firstly, thanks to Kirsty Boyd, consultant in palliative care at Royal Infirmary of Edinburgh, I possess the mental metaphor of “umbrella conversations” – conversations to be carried on, not just when it’s raining, but when it might rain. Such conversations might be initiated with a question like, “If you were to get more unwell, what would it be important for us to know about”. Not having these sorts of conversations early, and recording them in a sharable way, can rob people of care and dignity at the end of life. And, although the National Digital Service will in due course enable such information sharing, at the moment the only available mechanism for reliable sharing across settings is the Key Information Summary.

Secondly, another way of looking at who might benefit is by employing “20:20 hindsight”, and reviewing the profiles and care pathways of those who have died over the most recent available year. In 2017 almost 58,000 people died. Around 16,000 of those died suddenly. Of the remainder around 20,000 died with dementia. This gives an additional significance to having those conversations early.

Why early conversations matter

As a policy team we get to see the letters people send to ministers about the care their loved ones receive. One haunts me. It recounts the last months of the writer’s father’s life, in which he experienced increasing frailty, repeated hospital admissions and disjointed care (along with some examples of kind, warm and compassionate staff). He underwent several operations, repeated burst stoma-bags, unmanaged pain and broken promises of ‘fast-tracked care’. The family said it had seemed like a dreadful rollercoaster, which could have been prevented had they just had a realistic conversation about his likely trajectory, and what mattered to him.

Although not all care pathways are like those of this man, all of those who died expectedly should have benefited from conversations about what mattered to them. Paul Baughan, a GP and the Healthcare Improvement Scotland clinical lead for palliative care, led the development of a new palliative care Directed Enhanced Service, to provide some financial support for identifying those who may be moving towards death. (We worked together on the diagram below). It aims to increase the proportion of those with a KIS at the end of life, but especially people with frailty, who have more often been overlooked.

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Diagram of the Directed Enhanced Service

And it is brilliant to see a focus on ensuring that people in care homes get to benefit from this approach; the work in Edinburgh and Glasgow comes to mind. There is lots still to do, but the support of colleagues in primary care in doing this, and supporting them to do so feels like a key element in making sure that everyone gets the palliative care they need by 2021.

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Introducing our Living and Dying Well with Frailty Collaborative

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Thomas Monaghan, our Portfolio Lead, discusses our Living and Dying Well with Frailty Collaborative

Demographic change and its challenges

People in Scotland are living longer than ever before, which is to be celebrated. This means that we all get to spend more time with our loved ones. However, people are not just living longer: they are living longer with more complex health needs and conditions, such as frailty. While we welcome spending more time with our loved ones, we also recognise that it can increase pressure on families, on carers and on our health and social care services to support people to have the best possible quality of life.

Improving care for people with frailty

Supporting people with frailty to have the best possible quality of life is becoming increasingly difficult, as there are growing numbers of older people in Scotland who need support: there will be 25% more people age 65 or over by 2029, and almost 80% more people age 75 or over by 2041.

If we want every older person in Scotland to have the best possible quality of life, then we need to start changing how we support people with frailty to live well in their community.

Our support

At Healthcare Improvement Scotland we want to help health and social care services to make changes so more people with frailty can have a better quality of life in their community. This will help to avoid crises that can lead to poor outcomes and increase pressure on families, carers and health and social care services.

We can do this by helping health and social care services to use evidence and quality improvement methods to:

  • find people who are becoming frail before they reach crisis point
  • have anticipatory care planning conversations with people with frailty to understand their wishes for future care, and
  • work with a range of health, social care, third sector, independent sector and housing providers in local areas to support people with frailty to achieve what they want for their future.

Our Living and Dying Well with Frailty Collaborative

If you want to work with us to help people with frailty to have a better quality of life and reduce pressures on individuals and services, then get in touch. We can talk about how you could be part of our Living and Dying Well in Communities improvement collaborative.

To find out more, get in touch by emailing us at hcis.livingwell@nhs.net, calling us on 0131 314 1232 or tweeting us @LWiC_QI.

Looking forward to hearing from you!

Reflecting on our palliative care work: thoughts from Paul Baughan

Paul Baughan 2Dr Paul Baughan, our palliative care GP clinical lead, discusses the benefits of early palliative care, highlights a resource that we’ve developed to compare different palliative care identification tools, and looks ahead to future work on care planning and care coordination.

Having worked within General Practice for over 20 years, I have seen the transition from hospital-based care to community care for a wide variety of clinical conditions and diseases. We look after many more people who are living with complex medical diagnoses well into their 80s, 90s and beyond. It can be difficult to identify when a palliative approach to care should be considered, and as a result we sometimes find ourselves on the back-foot, reacting to events and changes in clinical condition. Often, with the benefit of hindsight, it might have been possible to anticipate and plan for these episodes before they happen.

This is one of the reasons that I have enjoyed the opportunity to work with Healthcare Improvement Scotland and five test sites across Scotland (Dundee, East Ayrshire, Fife, Glasgow, and Perth and Kinross) to explore how we might identify people who could benefit from a palliative approach to their care at a much earlier stage.

Although a variety of different electronic and paper ‘tools’ have been developed by academics to help identify those who might benefit from a palliative approach to their care, it can be confusing to know which tool to use, and in which situation. Some are electronic, some are designed for particular diseases such as cancer or dementia, or for particular settings such as care homes.  Some tools are intended for health professionals and some for the general population. I have therefore enjoyed working with the team in Healthcare Improvement Scotland to design a resource which will help health and social care professionals become more familiar with the different identification tools, and most importantly, decide which one suits them best. Our five test sites have chosen different identification tools to use within their local Health and Social Care Partnerships.

However, identifying those who might benefit from a palliative approach to their care is just the first step.  It is the conversations that follow, between the health and social care professionals and the person, that are important. And then of course the care planning that results from these discussions. This is our next area of focus at Healthcare Improvement Scotland. We are now working with our test sites to explore how best to plan, coordinate and deliver care to those who are living with a progressive life-limiting condition.

This is an exciting phase of our work, as each test site is considering innovative and practical ways to provide this care within existing resources, and across health and social care. We will have the opportunity to share some of the learning from across Scotland in the Autumn, with the full outcomes from our test site projects available in 2019.

Back at my own general practice, my colleagues and I will continue to see an increase in the number of people with complex progressive life-limiting conditions in the years ahead. Therefore, the outcomes from the five test sites will be very relevant to the work that we do on a daily basis. We know that a proactive, multi-professional, care planning approach is required, and eagerly await advice from the test sites regarding how best to achieve this.

Comparing tools that can help to identify people who could benefit from a palliative care approach

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We have recently published a resource that compares different tools that could be used to identify people who could benefit from a palliative care approach. This blog post gives an overview of the document and its features.

The benefits of early identification

Early identification of people who could benefit from a palliative approach to their care has many advantages. It can allow people to make informed choices about what medical treatments and care they would like to receive, or not receive, and to prioritise things that are important to them when length of life may be short, or when the presence of irreversible illness has altered life for that person.

Palliative care identification tools

It can be very difficult to recognise when someone is nearing the end of their life due to a chronic, progressive medical condition, frailty or old age. A number of tools are available to help identify individuals who could benefit from a palliative care approach at an earlier stage.

Comparing different tools – at a glance

We have designed a visual resource comprising a table and a decision tree (see below) to make it easier for Health and Social Care Partnerships to compare the key features of different identification tools, and to select the tools that are most appropriate for their contexts.

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Palliative care tools decision tree v0.7

 

This resource is not intended to be a comprehensive literature review, but rather a visual comparison of some of the main identification tools that are currently used in Scotland. There are brief outlines of all of the tools featured in the comparison table and decision tree, together with links to some key research and further information on these tools.

We have focused on tools that were identified in a literature review by Maas et al, and discussions with palliative care clinicians in Scotland. Some have been validated and others have not. We have tried as far as possible to include information on the limitations of different tools.

You can access the palliative care identification tools comparator on the ihub website by clicking on the document image below:

 

PC tools comparator cover

Introducing Maxine Jones

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I’ve had a long career in generalist primary care practice management, so stepping into a new role as Fife’s palliative care improvement advisor may have seemed at first like a leap into unfamiliar, specialist territory.

But, as one doctor said to me, palliative care is the bread and butter of primary care.

Both services share a deep-rooted holistic philosophy that deals with the emotional, social, practical and spiritual aspects of health and well-being, as well as the medical management of illness.

So, for me, a move to palliative care felt like a home coming.

Improvement work

I’m working with Fife’s health and social care partnership to realise the Scottish Government’s vision, that by 2021 everyone who needs palliative care will have access to it.

Our aim is to innovate and improve the identification and care coordination for people who may benefit from palliative care.

What people want is support to live well, safely and for longer in their usual place of residence.  What people want is to have quick and easy access to responsive services and trusted care providers when they need them. These principals are universal to both primary and palliative care.

Some of our improvement work will focus on developing palliative care in the community, with providers that people know well. This will extend identification beyond those with cancer. Anyone living with long term conditions and growing frailty would benefit from early palliative care.

But identification is only part of the story.

As important is the coordination of responsive, person-centered services. Services that are delivered through closer, enhanced multi-disciplinary team working. Services that are nearer to people. Services that are geared towards improving continuity between people and their care providers.

You’ll hear more about my work in the coming months. I’d be delighted to learn from your community palliative care initiatives, and to hear your suggestions for improving identification and coordination of palliative care.

Please do get in touch.