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.

des
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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“ACP is not for me!”

paul baughan

“I don’t have time to do an ACP.”
“That document is too big.”
“GPs have enough work without this.”
“Someone else should be doing it.”

These are all comments which I have heard my GP colleagues say when the topic of Anticipatory Care Planning comes up. And if I’m honest, there have been occasions when similar thoughts have gone through my head. But Anticipatory Care Planning is so much more than any document or the needs of a particular professional group, and I have come to realise that it is a fundamental component of our work in general practice.

Some of the most rewarding consultations I have had, started with an exploration of ‘what matters most‘ to someone. Recognition of such priorities enables the most effective use to be made of limited consultation time. And often I am surprised that the most important aspect of someone’s care is not what I thought it was going to be.

Take for instance my patient John, who has significant heart disease and was frustrated about the poor control of his blood pressure. I could see John’s irritation and was determined to find a new combination of drugs that would work better than the last.  Each switch to a different medication required more blood tests and close monitoring, and unfortunately many of these new drugs made John feel dizzy and light-headed.

One day John told me that his greatest pleasure in life was spending time with his grandchildren, and until recently he would drive them to and from school each day.   Side effects from his medication were preventing this, which in turn caused John to feel stressed. Only by understanding his priorities were we able to make progress.  He was willing to accept the risk of a slightly higher blood pressure if it meant he could safely drive his grandchildren and ‘feel useful’.

So, after discussion we stopped his medication, put the BP monitor to the side, and instead explored other aspects of his future care which were important to him. His Key Information Summary was updated to include his thoughts about cardiopulmonary resuscitation and he set about appointing a welfare power of attorney. John was able to start driving again and his levels of frustration reduced, as did his blood pressure!

ACP desktopAnticipatory Care Planning is not a one-off event. It is a process that starts with a conversation and which can develop and evolve over time. The beauty of general practice is that we have opportunities to initiate that conversation and contribute to the development of an ACP over weeks, months and sometimes years.

Professionals working in other parts of health or social care can also make a big contribution to ACP. Tools such as My ACP can support this process, and stimulate helpful discussions within families.  There is still a challenge translating information from hospital clinic letters and My ACP onto the KIS. I welcome recent progress with the new national digital platform, which in time will allow a wider group of people to contribute to an electronic shared ACP.

So, ACP is not just for me. It is for all professional groups working across health and social care, and most importantly it is for the person, their family and carers.

Paul Baughan, GP, Dollar Health Centre, Clackmannanshire

For more information and resources relating to ACP visit the ACP toolkit.

What works in care co-ordination in palliative and end of life care

PEOLC evidence bundle coverWe have recently published a resource that reviews the evidence on continuity and care coordination in palliative and end of life care. This blog post gives an overview of the document and its features.

Why focus on care coordination?

Good care co-ordination can help to improve people’s quality of life, right up to the end of life.

The Living Well in Communities team has been working with test sites in Dundee, East Ayrshire, Fife, Glasgow City, and Renfrewshire Health and Social Care Partnerships to deliver Commitment 1 from the Scottish Government’s Strategic Framework for Action on Palliative and End of Life Care:

We will support Healthcare Improvement Scotland in providing Health and Social Care Partnerships with expertise in testing and implementing improvements to identify those who can benefit from palliative and end of life care and in the co-ordination of their care.”

This work is coming to a close in March 2019.

Exploring the evidence on different approaches

Drawing on the priority practices outlined in the World Health Organization practice brief on continuity and co-ordination of care, we identified six key approaches to continuity and care co-ordination in palliative and end of life care:

  • Early integrated palliative care
  • Collaborative planning of care and shared decision making
  • Case management for people with palliative and end of life care needs
  • Intermediate palliative care at home
  • Technology to support continuity and care coordination
  • Building workforce capacity

Working with the Evidence and Evaluation for Improvement Team, we summarised the available systematic-review level evidence on these approaches.

Presenting the evidence visually

As with our Living Well in Communities with Frailty evidence review, we produced visual summaries for each of the approaches. These provide key information on the different approaches to care coordination, and an introduction to the more detailed evidence summaries. The visual summaries include

  • a brief description of each approach,
  • the rationale behind them,
  • the potential benefits,
  • enablers,
  • brief commentary on the quality of the evidence, and
  • links to further reading and examples of local good practice.

 

Visual summary
Early integrated palliative care visual summary
Case mgmt summary
Case management evidence summary

 

We hope that this document will provide a useful overview of the systematic review-level evidence on key approaches to care co-ordination in palliative and end of life care, and highlight the potential benefits of these approaches.

You can access the review, Continuity and Co-ordination in Palliative and End of Life Care: evidence for what works by clicking on the document image below:

PEOLC evidence bundle cover

 

Reflecting on our palliative care work: thoughts from Sandra Campbell

 

Sandra presenting
Sandra presenting at our recent learning event on identification.

Our Nursing National Clinical Lead for Palliative and End of Life Care, Sandra Campbell, reflects on a year of supporting the Living Well in Communities palliative care work.

What a year! I have loved every minute! Unfortunately the secondment is only one day a week, but fortunately I am able to be flexible with time. I am certainly very grateful to my line manager in my substantive post as Nurse Consultant for Cancer and Palliative Care in NHS Forth Valley for that.

The main purpose of the clinical lead role is to support the Living Well in Communities Team within the ihub at Healthcare Improvement Scotland to deliver on Commitment 1 of the Strategic Framework for Action on Palliative and End of Life Care 2016-2021:

  • Identification of need
  • Coordination of care

The programme has six test sites across Scotland: Dundee, Glasgow City, Perth and Kinross, East Ayrshire, Fife, Western Isles, and Renfrewshire.

Reflecting back to April 2017, it was hard to imagine how these individual projects would evolve, but it has been amazing to see them unfold due to excellent local leadership within each of the Health and Social Care Partnerships, the guidance and support of assistance improvement advisors in each area and the support of the Living Well in Communities team.

Dr Paul Baughan and I, as clinical leads, have supported from a clinical advisory aspect. A Palliative Care Identification Tools Comparator resource has been developed and is available to support teams in understanding the various tools that can support the identification of palliative care. Paul has supported two webex education sessions, and I will be delivering a webex on the key principles in Caring for People in the Last Days of Life and how this relates to coordination of care.

The test sites will test some of these tools, which will inform wider learning across Scotland. This work will be developed further to inform a resource for care staff in care homes on how and when to use particular tools at different trigger points. Three events will share this learning: the first of which took place on the 31st May (and really saw the Strategic Framework for Action for Palliative and End of Life Care come to life) and a further two are planned for October 2018 and March 2019.

All of the work fits perfectly with the agenda in Realising Realistic Medicine, supporting anticipatory care planning that ultimately enables the right thing to be done at the right time, by the right person, to the right quality standard, with the right outcome.

What is needed is:

  • Good assessment and care planning
  • Good decision making
  • Good care
  • Good quality of life until death
  • Good death
  • Good bereavement

The opportunity for the test sites on the project is to try out different ways of working to improve care and make best use of resources available. Enhancing the generalist support is vital if we are to ensure as many people as possible can remain in their own homes as long as possible.

Other developments

New guidance to support Confirmation (previously verification) of Death will be available shortly from the Scottish Government.

Macmillan has supported projects within the test sites with funding of £120,000.

Macmillan and the Scottish Ambulance Service are in early conversations about developing a national project to improve end of life care and prevent inappropriate admission to hospital and reduce inappropriate CPR.

A key aspect of the clinical lead role is to engage with other stakeholders and we do this on an ongoing basis. People and organisations we have engaged with include:

I have also set up a nurse leads group – now reporting to the Scottish Government, SEND and SPPC. We have a practical work plan that includes bereavement. This group is about sharing best practice across all areas. Standardising care at end of life is helpful to teams and welcomed in the absence of a framework such as the Liverpool Care Pathway.

In caring for the dying patients and those close to them, it is important that staff provide care in accordance with the key principles, which I discussed in an earlier blog post.

You can follow Sandra on Twitter and contact her at 

sandra.campbell2@nhs.net

Palliative and End of Life Care: Focus on Identification

Michelle Church, Improvement Advisor, reflects on our recent learning event, which explored ways of identifying people who could benefit from a palliative approach to their care.

On 31st May 2018, test site participants from six health and social care partnerships (HSCPs) and key delivery partners across Scotland joined the Living Well in Communities team to learn and share knowledge about tools that can support identification of people who could benefit from a palliative approach to their care.

Making the case for early identification

Kirsty Boyd, consultant and lecturer in Palliative Medicine, talked about the many benefits of earlier identification:

  • Helps people say what matters to them.
  • Increases the opportunity for people to participate in decision-making.
  • Reduces the risk of later regrets and poor outcomes.
  • Gives people time for planning ahead, resulting in fewer crises.
  • Reduces unplanned admissions of low benefit.
  • Encourages medication review and treatment planning.
  • Improves continuity and coordination of care by sharing information.

 How can we do earlier identification?

Our national clinical leads, Dr Paul Baughan and Sandra Campbell, gave an overview of the visual resource the LWiC team have developed to help compare different identification tools that are currently used in Scotland. Sandra did a before and after survey of how aware and confident participants were about the variety of tools.

How did we mobilise knowledge?

Experts from across the UK shared their tools, knowledge and experience of doing identification. People got the chance to participate in interactive workshops looking at the tools that a number of palliative care test sites. Some insights from the sessions are included below:

Anticipal and eFI electronic tools

FAST and PPP tools

PPS and SPAR Tools

SPICT4ALL and carers identification

What did people think of the event?

People felt that they had learnt about why, when and how to use different tools to support identification and inform practice. People really liked that they had the chance to network with experts and colleagues.

Overwhelmingly, the take home message was that earlier identification and communication is key to supporting those who would benefit from a palliative approach to their care.

What did you likeTake home message

What next?

HSCP palliative care test sites are now using the comparator to consider what tools will benefit local people and services and how people identified can be supported. This work will contribute to the vision that by 2021 everyone who could benefit from palliative care will have access to it and will support the Realistic Medicine ambition of shared decision-making and a personalised approach to care.

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.

Meet Rob Corrigan!

Rob square b&w

I have never been one for blogging or being photographed, I never enjoy being centre of attention for that matter! However in the interest of challenging myself and trying to improve, I fancy having a go at it, particularly given the excellent blog debut my colleague and fellow project officer Gemma Stewart recently produced.

I have been part of the Living Well in Communities (LWiC) team for over a year now. My current role is to provide project support to the palliative and end of life care workstream, which aims to support health and social care partnerships across Scotland to test improvements in the identification of people who could benefit from a palliative approach to their care, and care coordination.

I find this a hugely interesting and engaging workstream to work on. It’s an emotive subject, which is really helping me challenge and think through my ideas and perception of what palliative care is, and can be. To date my biggest learning point has been around the necessity of good conversations. Whether that is with a professional or a loved one.

Like Gemma I have a varied background, having studied social science at an undergraduate level, then criminology and criminal justice at a master’s level. My studies led me to a role in the third sector with Victim Support Scotland, in which I was part of the day-to-day running of the Edinburgh service. I then took up a role with Healthcare Improvement Scotland, working for a number of teams, including networks and knowledge exchange, and my current role with LWiC.

The LWiC team are a hard-working bunch, with a real commitment to providing a high quality of work that supports people to live at home or in a homely setting. We are always happy to answer any questions about our work – so please do get in touch.

 

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

PC tools comparator cover

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.

PC tools table

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

maxine_jones_-_colour-02_1024.jpg

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.

Palliative Care: From Diagnosis To Death

The Primary Palliative Care Research Group at the University of Edinburgh have produced a series of videos for people living with declining health and the friends, family members and professionals caring for them.

Early Palliative Care: a video for health and care professionals

This short video aims to help health and care professionals to identify people who are living with progressive illnesses better, to assess their needs in a timely manner and to start discussing and planning future care with them.

Early palliative care improves life’s quality, and in some cases may even prolong life. It promotes realistic medicine, an approach which puts the person receiving health and care at the centre of decision-making.

 

Clinicians, patients and families can all benefit from carefully integrating early palliative care with on-going treatment, so people can both live and die well.

The information in this video is based on detailed research with patients, families, doctors, nurses and other health and care professionals about people’s experiences living with declining health and dying. ‘Palliative Care from Diagnosis to Death‘ was published in February 2017 in the BMJ.

Key points:

  • Identify people early and introduce early, integrated palliative care
  • Consider patients’ different dimensions of need at present, and discuss what matters most to them
  • Discuss what happens in the different illness trajectories so they know when they might need the most help
  • Make an individual anticipatory care plan with patients and families; document, communicate and review this regularly with all involved

There are accompanying notes and suggested discussion questions available here for anyone using the video for teaching purposes.

How to Live and Die Well: a video for the public, patients and family carers

This short video is for everyone. It’s for people who are well just now, but may get a serious illness or life-threatening condition in the future. For people who currently live with progressive illness. It’s also for family members and carers of those who are ill or may become ill, and who want to learn what can happen in the future so they can plan ahead.

How to Live and Die Well a video for the public, patients and family carers

The full video, as well as guidance notes and useful links is available here.

There is an extended version for facilitated group viewing and discussion available here.

Strictly Come Dying

This video discusses the different illness trajectories as though each were a dance with a particular tempo and complexity. Just as knowing the dance will help someone dance well, understanding typical physical and emotional sequences of various illnesses help people live and die well.

Strictly Come Dying.PNG

Our research group in Edinburgh has studied the last year of life in people dying of various illnesses. We found that people dying  from different diseases experience dying differently, as each disease trajectory involves different experiences, needs, ups and downs.

Further reading: Palliative Care: From Diagnosis to Death