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

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.

“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

Grasping the Nettle

Mark Hazelwood reveals some of the thinking behind the SPPC's recently published report 'Grasping the nettle'.

Grasping the nettle aims to provide a clear consensus view on the way ahead for palliative and end of life care in Scotland.

In both polar exploring and public policy it is periodically a good thing to stop, take stock and consider carefully the direction of travel.

It is eight years since SPPC published its last sector-wide analysis of how to improve palliative and end of life care in Scotland [1].

Since then we've seen the first Scottish government action plan on palliative and end of life care, Living and Dying Well, the crisis in public finances as a result of an under-regulated banking sector, the demise of the Liverpool Care Pathway, the Francis Inquiry, and many very positive practical improvements in palliative and end of life care at the local level.

When the Scottish government made its welcome announcement in 2014 that it would produce a new strategic framework for action for palliative and end of life care, SPPC committed to supporting and informing the development of that strategy.

As the representative body for palliative care – with over 50 member organisations – we wanted to ensure that the experience and expertise of the people and organisations in our networks were brought to bear on the complex and large challenges needing to be thought through.

Policy and strategy are never sufficient on their own to achieve change, but they can be helpful. Conversely, a recent survey identified 'confusing strategies' as the number one barrier to change [2].

Grasping the nettle aims to provide a clear consensus view on the way ahead for palliative and end of life care in Scotland. Its purpose was to support inform and enrich development of the Scottish government’s strategic framework.

To that end, the structure of Grasping the nettle is based on the 3-step improvement framework for Scotland’s public services [3], so that palliative and end of life care issues are framed in terms which resonate with the Scottish government's wider public service reform agenda.

The vision articulated in Grasping the nettle is that Scotland will be a place where:

  • people’s wellbeing is supported even as their health declines
  • people die well
  • people are supported throughout bereavement.

In this vision – and throughout the report – we have tried very hard to achieve clarity of terminology and to shine a light on important differences of meaning which sometimes lurk behind stock phrases, creating a false impression of mutual understanding.

In producing the report, SPPC undertook many of the usual tasks of strategic thinking – an analysis of the world in which we are working, an assessment of where palliative and end of life care is at, an assessment of the main challenges and the things which need to change.

Engagement from our 50+ member organisations and other stakeholders has been excellent during a three-stage iterative process from May to November, which was overseen by a multi-disciplinary sub-group of SPPC’s council. Drafts were shared with the Scottish government at each stage, who welcomed the report as a very helpful input to their process of developing the strategic framework for action.

Perhaps the most difficult stage of thinking was to move beyond broad outcomes and to propose a set of specific actions which would achieve significant positive change.

The report identifies 38 actions – a busy agenda, but then this is a big issue and the scale of change required is huge.

The report’s proposals include – but also go beyond – specific issues such as education and advance care planning. In addition, we address leadership and the role of government and others in creating the conditions which support and enable change.

Taken together we believe the proposed actions create the necessary conditions for change, describe specific changes required and specify a broad framework of accountability.

This blog is by Mark Hazelwood, Chief Executive of the Scottish Partnership for Palliative Care.

References

  1. Scottish Partnership for Palliative Care. Palliative and end of life care in Scotland: the case for a cohesive approach. Scottish Partnership for Palliative Care; May 2007. Available from:http://www.palliativecarescotland.org.uk/content/publications/?cat=14
  2. Health Services Journal. The crowd speaks: Top 10 barriers to change. HSJ; 10 February 2015. Available at: http://www.hsj.co.uk/topics/technology-and-innovation/change-challenge/the-crowd-speaks-top-10-barriers-to-change/5081962.fullarticle
  3. The Scottish Government. The 3-step improvement framework for Scotland’s public services. The Scottish Government; 2013. Available at http://www.gov.scot/Resource/0042/00426552.pdf

Respite care and transitions: a complex problem

On Wednesday 8th October, MSPs in the Scottish Parliament will debate the 'Absence of Suitable Hospice and Respite Facilities for Young Disabled Adults'.

Inadequate access to respite care is just one dimension of the many difficulties experienced by young people with life limiting conditions as they move (transition) from children’s to adult services.

Children’s hospice services, including those provided by CHAS, offer the provision of holistic symptom management, emergency admissions, home care and short planned breaks. The purpose of a stay may also be the provision of a break for the child or young person and their parents, as well as end of life care and subsequently bereavement support for all of the family of the child or young person.

Scotland’s adult hospices are based on a very different model (in which the primary purpose of a stay will generally be to assess and deal with complex symptoms requiring a specialist intervention. Once these are resolved patients are generally discharged back into the community). Children’s and adults hospices share many similarities and are based on a common philosophy however they are not equivalent institutions.

The need for age appropriate respite care also extends to adults who experience the onset and progression of disease at a young adult age, for example the many individuals with multiple sclerosis.

The issue of transition was highlighted as an unmet need in the Scottish Government’s Living and Dying Well action plan in 2008. Living and Dying Well: Reflecting on Progress (SG March 2012) reported, regarding transition services, that “In many Boards this appeared to (be) a work in progress... A recurrent comment was the lack of equivalent adult services to transition to.” The Scottish Transitions Forum has developed principles for transition which provide a valuable framework.

The absence of suitable facilities is only one aspect of the situation; there are also barriers to accessing suitable facilities due to local authority funding policies, particularly since respite care for young people with high levels of need is relatively expensive (compared for example to typical costs for older people).

Leuchie House, is a voluntary sector provider of respite care for people with a range of long term conditions some of whom have high levels of need (for example advanced MS). Charging policies of local authorities may be a barrier to some young people accessing this service, despite the fact that the fees at Leuchie House are significantly subsidised by charitable fundraising and other grants.

A number of factors relating to Scotland’s health and social care system combine to make this a complex problem to address (beyond the significant challenges of resources). Identifying these factors may help to provide pointers to solutions:

1. The relatively small numbers of people affected in each local authority area may make dedicated local facilities difficult to finance and sustain. Any national solution is likely to require complex partnership across multiple NHS Boards and Local Authorities and there will be a need for a “lead broker”, with the resources to carry out complex and potentially protracted work.

2. As has frequently been articulated, whilst the financial costs of respite care fall on Local Authorities (and also on individual members of the public and voluntary organisations), the financial benefits tend to accrue to the NHS (in so far as respite care supports the health of the carer and prevents crisis admissions to hospital). It is to be hoped that ongoing moves to health and social care integration will address this issue of resource allocation.

3. The range and complexity of needs of young adults living with severe disability and/or life limiting disease makes a “one size fits all” solution inappropriate, and there is probably a need to develop a range of person centred options. Assessing the demand for services is therefore complex. There may be differences in preference as well as need (for example between getting respite at a dedicated centre vs. being supported to access a mainstream holiday facility, though this latter may not be feasible where support needs are high).

4. Whilst (at least until Self Directed Support becomes more widespread) responsibility for commissioning respite services lies with local authorities, some of these young adults may need quite high levels of clinical care as part of their respite.

5. There may be voluntary sector organisations who could be potential providers of new services, however the conditions for financial viability and sustainability need to be created for them to enter the market. A similar point could be made in terms of the independent sector.

These essentially practical complexities need to be overcome if the needs of growing numbers of young adults with life limiting conditions are to be met.

This blog is by Mark Hazelwood, Chief Executive of the Scottish Partnership for Palliative Care. Mark is also on the Board of Trustees for Leuchie House.

Caring for the Carers

More musings from Derek Doyle - the SPPC’s ‘old man’...

I recall a man being admitted from home, settling in well and being effusive in his praise of the care he was receiving and the kindness of the nurses yet clearly he would much rather have stayed at home. Why had he asked to be admitted, I asked him. “For my wife’s sake – she was looking so weary and worried. It was the last and the best thing I could do for her!”

We all know of the many studies which have shown that most people would prefer to be cared for and die at home rather than in a hospital or even a palliative care unit. All who have worked in the community – GPs, community nurses, visiting palliative care and social workers – know something of what it means to be a carer. They experience extreme tiredness, loneliness in spite of the number of others involved, constant worry about whether they are doing the right thing or could do more and, slow as most are to admit it, resentment that they are seldom thanked but rather taken for granted especially by family members. They may have their own health problems, often age-related, to cope with and all the uncertainty and anxiety that goes with ageing.

I have to admit that only recently have I become so aware and “ knowledgeable” about carers, because our church, like many others, is starting a Carers Support Group. I had never realised how many charities there are giving free advice on aids and equipment, grants and benefits, holidays for carers, communication aids, demonstrating lifting and moving, guidance on home modifications and, in the case of our church, time spent listening as carers unburden their feelings and fears. Will it enable more patients to remain at home knowing that their family carers are themselves being cared for? Are we palliative care professionals in Scotland knowledgeable enough about what charities focusing on carers can offer to help our patients achieve their wish to stay at home that bit longer. I certainly was not aware of them. They are all only a mouse click away.

Yes – you have all spotted a problem, but let us see it as a challenge. Who will look after the patient whilst the carer is out of the house for two hours or so? Surely not insurmountable!

This blog is by Dr Derek Doyle OBE, Honorary President of the Scottish Partnership for Palliative Care. Recognised worldwide for the contributions he has made to palliative care, he was the first Medical Director of St Columba’s Hospice, the first Chairman of the Association of Palliative Medicine, the founding Editor in Chief of Palliative Medicine and Senior Editor of the first three editions of the Oxford Textbook of Palliative Medicine.

 

The Silent Treatment

Drama, like palliative care, is concerned with exploring crises and change. So often characters in plays, like patients, find themselves facing shock, uncertainty and conflict. I have spent much time over the years thinking about how to meet these challenges and help patients and their families.

My son is a drama lecturer and we’ve often talked about how great playwrights like Shakespeare and Pinter can help clinicians to learn more about empathy and compassion. Although there has been work on the value of Applied Drama in a medical context, there has been little on the intersections between theatre texts and clinical practice. We decided to write a book exploring key areas of end of life care and relating these to insights from theatre texts.

The selection of plays was not easy - the dramas are challenging and often upsetting in their focus on suffering. In the busy clinical world of end of life care ethical dilemmas are heightened, and plays such as these highlight some of the key tensions in the human condition.

Within our book, we explore how particular plays provide useful lessons in enhancing empathy and compassion in a clinical context. As we all know, compassion is a vital element in the silent treatment and provision of effective care. The plays also illustrate the potential for good communication to help and to heal in time of crisis. From the time of the Greek tragedies to the present day, we owe a debt of gratitude to the authors of the plays who continue to teach us about communicating in a sensitive way.

Called Enhancing Compassion in End-of-Life Care Through Drama : The Silent Treatment, one of the themes the book explores is use of silence. Silence often drives the plot forward and creates tension for the characters. Some of the most powerful moments in the plays are those that take place without dialogue; for instance, in Journey’s End, when Stanhope comforts the dying Raleigh simply by moving a candle nearer his bed.

We hope the book will be a springboard for a wider consideration of how theatre can help healthcare professionals to increase their understanding of the dynamics and demands of end-of-life care. We wanted to show how theatre texts can engender creative problem solving ideas which promote an empathic approach to end-of-life care. Of course, as well as reading the book, I’d encourage people to attend performances of the plays - theatre text is only a formula for an act that should be live and engaging in the spirit of the moment.

This blog is by Dr David Jeffrey, Honorary Lecturer in Palliative Medicine , University of Edinburgh. The book he refers to is:

Enhancing Compassion in End-of-Life Care Through Drama : The Silent Treatment by Ewan Jeffrey, Lecturer in Drama, Queen’s Belfast and David Jeffrey Honorary Lecturer in Palliative Medicine, University of Edinburgh. Foreword by Professor Steve Field. Deputy National Medical Director, Health Inequalities, NHS England. Radcliffe Publishing , London 2013 CPD Certified.

The plays and themes referred to in the book are:

King Lear, William Shakespeare (1606) - Communication

The Caretaker, Harold Pinter (1960) - Care

Journey's End, RC Sherriff [1928] - Connection

Antigone, Sophocles (441 BC) - Choice

Little Eyolf, Henrik Ibsen (1894) - Change

All My Sons, Arthur Miller (1947) - Concealment

Blasted, Sarah Kane (1995) - Crises

Cloud 9, Caryl Churchill (1979) - Complexity

Behzti, Gurpreet Kaur Bhatti (2004) - Culture

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