Palliative and End-of-Life Care by Integration Authorities: advice note

National Policy Context

Health and social care integration puts people at the centre of commissioning decisions, and is a core aspect of public service reform in Scotland. Planning, designing and commissioning services in an integrated way, from a single budget, allows Partnerships to take a joined-up approach, making it easier to shift resources to target preventative activity, and to ensure people get the right care and support for their individual needs. As at other stages of life, services and supports should be seamless and responsive to the people who use them. These will often call for effective and purposeful periods of admission to acute settings, to deal with emergent needs, and collaborative approaches across settings – but wherever possible and desired enabling people to stay at home or in a homely setting within their communities. This collaborative approach, with good integrated working to deliver high quality care, is particularly important when commissioning palliative and end of life care services and supports, as discontinuity of care across settings is a frequent cause of distress.

Health and Social Care Delivery Plan

The Scottish Government Health and Social Care Delivery Plan, which was published in December 2016, sets out a blueprint for achieving this vision for PEOLC and emphasises the importance of reducing health inequalities and treating people closer to home. For the integration aspects of the delivery plan, the Ministerial Strategic Group ( MSG), which provides joint political oversight for integration through Ministers and COSLA, has sought Partnerships to share key data and local objectives in order to gain an overview of progress with integration across the Partnerships. This work includes local objectives for improving PEOLC.

Partnerships will make the key contribution to achieving the overarching aim of the Strategic Framework for Action on Palliative and End of Life Care and the more specific action set out in the Health and Social Care Delivery Plan:

By 2021, we aim to: Ensure that everyone who needs palliative care will get hospice, palliative or end of life care. All who would benefit from a ‘Key Information Summary’ will receive one – these summaries bring together important information to support those with complex care needs or long-term conditions, such as future care plans and end of life preferences. More people will have the opportunity to develop their own personalised care and support plan. The availability of care options will be improved by doubling the palliative and end of life provision in the community, which will result in fewer people dying in a hospital setting.

Health & Social Care Integration: Our Vision

“Let me be clear about the objectives of this programme of reform. We want to ensure that adult health and social care services are firmly integrated around the needs of individuals, their carers and other family members; that the providers of those services are held to account jointly and effectively for improved delivery; that services are underpinned by flexible, sustainable financial mechanisms that give priority to the needs of the people they serve rather than the needs of the organisations through which they are delivered; and that those arrangements are characterised by strong and consistent clinical and professional leadership.”

Nicola Sturgeon, MSP, Deputy First Minister and Cabinet Secretary for Health and Wellbeing, December 2011

The Scale and Growth of Need for Palliative and End of Life Care

Partnerships are routinely using data to inform their strategic commissioning activity, and have developed a good awareness and understanding of their local data from which to plan how best to meet the needs of people requiring PEOLC.

In 2016/17 there were about 57,000 deaths in Scotland, a figure set to rise slightly to just over 60,000 by 2037. Around 75% of these people will have needs arising from living with deteriorating health for the years, months or weeks before they die.

Much of this need will be met by families, informal carers, primary care, community nursing, care at home and in care homes; this palliative care may not be identified as palliative, and good supportive care will be required irrespective of the setting of that care or whether people are on a curative or a palliative treatment pathway.

However, while a death in hospital may be entirely appropriate, a significant majority of people express a preference to die at home. Where possible, appropriate and in line with the person’s preferences, treatments should be provided through community-based care, rather than in hospital.

In 2016/17 only 45% died in their usual place of residence (26% at home and 19% in care homes). Around 48% of deaths currently occur in hospital, and 6% in a hospice or palliative care unit.

The spend on people close to death can have a major effect on Partnership budgets:

• On average each year, about 15% of Partnership budgets are spent on people dying in that year;
• By far the largest contributor to this is unplanned hospitalisation, with 25% of unplanned bed days every year being used by those who go on to die;
• 29% of all acute bed days are used by people in their last year of life.

We expect to see a continuing shift in the numbers of people enabled to die at home or in a homely setting, which should contribute to improved outcomes and reduction in acute hospital costs.

In late 2016 Scottish Care sought to capture the experience of workers providing palliative and end of life care. The resulting report ‘Tree’s that bend in the wind’ set out the findings of this enquiry. ‘Care workers play a crucial role in someone’s palliative and end of life care journey. They are often the people that know the needs and wishes of individuals best, and who can recognise and communicate changes to the rest of the person’s professional and personal support network. They can make the difference between someone having a “good” death or a “bad” death through the solace they offer, whether for a few hours or a few years' ^[12] .

There is some evidence that many people receive non-beneficial treatments, without having been informed of other possible care options, including being cared for at home. These other options may also have been more in keeping with their wishes at the end of life, had they been explored and made available.

Each death will have a significant impact on around four other people, who may in turn have bereavement support needs. How the people close to the person who has died experience their death, and the days leading up to it, will also impact on their bereavement

Partnerships’ Responsibilities for Adult and Children’s PEOLC

The Public Bodies (Joint Working) (Scotland) Act 2014 requires as a minimum that adult social care, community health care and a proportion of hospital based care is delegated. Partnerships are best placed to understand any consequences arising from the specific arrangements which apply in their area, especially regarding any functions delegated beyond the minimum requirements.

The palliative care of children and young people is supported with funding from the Scottish Government for the next five years. In 2017/18 the commissioning of Children’s Hospices Across Scotland ( CHAS) has been managed through NHS Lothian, and arrangements for future years are being established.

Due to medical advances babies born with life shortening conditions frequently live for far longer than their peers from earlier generations. There is therefore an increasing need for a focus on good palliative and end of life care for babies, children and young people.

CHAS works closely with the relevant networks for children and young people’s services and aims to ensure palliative care services, including children’s hospice services, are integrated and working closely together. These networks include the National Managed Service Network for Children and Young People with Cancer and the National Managed Clinical Network for Children with Exceptional Health Care Needs. Work on refining commissioning arrangements with each Partnership is on-going.

How PEOLC Contributes to the Health & Wellbeing Outcomes

Integration legislation established 9 National Health and Wellbeing Outcomes and 23 indicators were subsequently developed, which form the basis of the reporting requirement for Partnerships to their local communities.

There are two indicators (15 and 23) which have explicit links with PEOLC – but all of the outcomes and indicators are considered as important as each other, therefore the suite of indicators need to be considered as a package, with many of them contributing to good outcomes for people at the end of life ^[13] . So improvement in outcome indicator 7 ('the percentage of adults supported at home who agree that their services and support had an impact in improving or maintaining their quality of life’) (indicator 7) will contribute to improvement on indicators 15 and 23 – ‘the proportion of the last six months spent at home or in a community setting’.

One example which brings these threads together comes from Glasgow.

Fast Track Palliative Care Service Glasgow HSCP

This service has been rolled out city wide in the last year. The aims are to meet patients’ needs identified during Anticipatory Care Planning ( ACP) conversations; increase the proportion of care provided to palliative patients in a homely setting; and support improvements in palliative care for patients in acute hospitals as set out in ’T he strategic Framework for Action on Palliative and End of Life Care.

The service is delivered by Marie Curie and it has worked with acute hospitals, hospices and the HSCP to create a referral pathway, which involves supporting discharge at the end of life by providing comprehensive practical and emotional support for patients & carers; and preventing palliative care patients being unnecessarily admitted to hospitals or hospices when they want to remain at home. The numbers of patients supported by the service and the estimated impact in terms of avoiding unplanned acute bed days – which also represent precious days spent at home, if that this what the person wants - is shown below.

Indicator	Actual
Number of Patients	556
Number unplanned acute bed days avoided by preventing admissions	4440
Number unplanned acute bed days avoided by facilitating discharge	14,961

Notes: Estimate based upon dates of death and dates of admission/discharge from the service.

While not being the only factor, the service will have contributed to the reduction
in the proportion of deaths which take place within acute hospital settings, which relates to the national aim of supporting more people in the community in the last
6 months of their lives. The percentage of deaths occurring in acute hospitals has been consistently falling over the last few years and this has continued during 2016/17. Rates fell from 46.4% in 2013/14 to 39.8% in 2016/17 (aged 65+) and
from 46.5% to 39.7% (aged 75+).

Issues of Equality

The needs of groups of people who experience variation in outcome should be specifically identified. These groups include:- homeless people, prisoners, people with mental health problems, people with learning disabilities, people living alone, prisoners, LGBTI people and those with poor health outcomes arising from poverty and deprivation.

The approach to engaging with people who use services and supports should include both those listed above, and those currently at the end of life.

Palliative and End of Life Care Staff Development

A unique feature for all staff across all settings providing elements of PEOLC is how the degree of comfort they have in regard to their own mortality will shape the care they are able to offer people as they approach death.

The quality of the provision of PEOLC is sustained through support for staff by capacity building, education and training - and a commitment to person-centred care. Such provisions should meet both general and specialist PEOLC needs.

The Learning and Development Framework for Palliative and End of Life Care was published in the spring of 2017 and should be viewed in the context of the wider workforce strategy.

Using the Learning and Development Framework for Palliative Care

A test of change started August 2017 involving the Prince and Princess of Wales Hospice and Thistle Health Southview Care Home. The aim for this approach was to invest in a culture of collaboration across the sectors in Glasgow that are delivering PEOLC, and to identifying gaps and improve practice.

The educational leads for the two organisations used the domains from the Learning and Development Framework to undertake a scoping exercise, mapping the existing and future educational palliative care resources each has to meet the challenges of supporting and providing appropriate ‘workforce’ learning and development needs across front line nursing assistant staff and care home front line staff respectively.

Results from this mapping will help them to compare skills and experience across these staff groups. Early results show clear similarities in the skills and experience enabling them to support palliative and end of life care. The care home staff report more autonomous decision making and more provision of non-medical care of the dying.

Care Planning, Palliative Care, and Other Linked Policies

Care planning acts as a common thread along the whole pathway of care and is vital to the planning and delivery process. Good conversations about what matters, between people (and with those that matter to them) and the team that supports them, recorded in a sharable format, should enable the team to remain loyal to that plan. This of course applies to palliative and end of life care, but also applies to Self Management Support, Dementia Care, Self Directed Support, Shared Decision Making and so on.

Data generated from care planning is a significant and developing source of information for supporting commissioning decisions. The strategic commissioning of palliative and end of life care should take account of these other related areas of policy and delivery. A focus on care planning will help in safeguarding people’s ability to make informed choices and have control over their care and support. This in turn will help in enabling them to live and die well, on their own terms, where possible at home or in a homely setting, and make the best use of their communities and their assets.

Data

The Strategic Framework for Action on End of Life and Palliative Care includes a commitment on improving data capture and usage. This is linked with the support provided by the Local Information Support Team ( LIST) and the use of ‘Source’, which brings together information on health and social care, to assist Partnerships with planning and commissioning locally.

The collaborative work to develop datasets, undertaken by the National Implementation Advisory Group ( NIAG data sub-group and LIST analysts, will support Partnerships in their commissioning cycle, which in turn will facilitate the provision of effective palliative and end of life care.

Work to include KIS data amongst the linked data sets is on-going, and routine data drawn from KIS and whatever replaces it is likely to be of increasing significance for establishing both quality and quantity in the provision palliative and end of life care, in line with the aim of all being able to access it by 2021.

National and local reports are regularly produced which offer specific and often helpful additional analysis on the basis of surveys etc, which may also be useful.

In 2016 the Scottish Public Health Network, Dr David Gray of the Accord Hospice, (ScotPHN) and a group of front line staff within Renfrewshire Health and Social Care Partnership ( HSCP), used the Source data and existing local services and supports to map and develop a protocol for using routinely available data to examine, at individual level, the health and social services and support use in the last year of life of adults in their HSCP area. Detailed supporting papers are available ^[14] .