Developing an end of life care pathway for people with learning disabilities through partnership working
Intended for healthcare professionals
Evidence and practice    

Developing an end of life care pathway for people with learning disabilities through partnership working

Mary Codling Primary healthcare lead nurse, LD, Berkshire Healthcare NHS Foundation Trust, Wokingham Hospital, Reading, England
Jane Knowles Health team lead, Community Learning Disability Team, Berkshire Healthcare NHS Foundation Trust, Wokingham Hospital, Bracknell, England
Laura Myers Practice educator, Sue Ryder – Duchess of Kent Hospice, Reading, England

Why you should read this article:
  • To be aware of the challenges of delivering good-quality end of life care to people with learning disabilities

  • To recognise the need for partnership working between learning disability and palliative care services

  • To learn about one particular end of life care pathway being used for people with learning disabilities

There is ample evidence of inconsistencies in end of life care service provision for people with learning disabilities. In 2013, in response to the findings of the first report of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities, a multidisciplinary steering group - including learning disability nurses and palliative care staff - was established in Berkshire, in the UK, to support learning disability staff to provide good-quality end of life care to service users. Findings from a literature review and a retrospective audit informed the development of an end of life care pathway for people with learning disabilities.

The pathway aims to provide learning disability staff with a unified and structured approach that places the service user at the centre of care and enhances partnership working with palliative care services. The pathway prompts the development of a personalised care plan that respects the wishes of the person and their family. The pathway is now in use by community learning disability teams across the county. In this article the authors explain the background and rationale for the pathway and describe its development and implementation.

Learning Disability Practice. doi: 10.7748/ldp.2022.e2178

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence

mary.codling@berkshire.nhs.uk

Conflict of interest

None declared

Codling M, Knowles J, Myers L (2022) Developing an end of life care pathway for people with learning disabilities through partnership working. Learning Disability Practice. doi: 10.7748/ldp.2022.e2178

Published online: 17 March 2022

People with learning disabilities have the same right as the general population to have access to good-quality end of life care. However, there is ample evidence, nationally and locally, of inconsistencies in end of life care service provision for this group. That evidence has motivated a group of healthcare professionals in Berkshire to develop an end of life care pathway designed to provide staff working in learning disability services with a unified and structured approach.

In 2013, following the publication of the first report of the Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) (Heslop et al 2013), Berkshire Healthcare NHS Foundation Trust decided to act and invited representation from different professionals working in the county. This led to the formation of a steering group of 16 people – learning disability nurses, district nurses, acute learning disability liaison nurses, psychologists, speech and language therapists, occupational therapists and hospice clinicians. The steering group’s aims were to better understand the needs of people with learning disabilities at the end of life, examine working practices, identify gaps and develop structured processes that would enable staff in learning disability services to deliver good-quality end of life care to service users.

This article explains the background and rationale for the new pathway, discusses the findings of a literature review and a retrospective audit used to inform its development, and describes its implementation in the Community Teams for People with Learning Disabilities (CTPLDs) in Berkshire.

Care pathways for end of life care

Care pathways were first introduced in the US in the 1980s (Bower 2009) and in the UK in the 1990s (de Luc and Todd 2003). Middleton and Roberts (2000) defined care pathways as ‘an outline or plan’ of anticipated clinical practice for a group of patients with a certain diagnosis. Care pathways support staff to deliver care in a systematic way in keeping with evidence and best practice, thereby enabling services to audit clinical practice (Hockley et al 2005).

In the late 1990s, a care pathway for people at the end of life was developed at the Royal Liverpool University Hospital and Marie Curie Palliative Care Institute, mainly for the care of terminally ill patients with cancer. It was called the Liverpool Care Pathway for the Dying Patient (LCP), better known as the Liverpool Care Pathway. Early research found the LCP to be generally beneficial. Jack et al (2003) found that nurses regarded the LCP as having positive effects for patients and families. Gambles et al (2006) reported that doctors and nurses viewed it as having a valuable place in hospice care. Veerbeek et al (2008) found that nurses and families believed the pathway improved symptom management.

In the following years, the LCP was recognised as good practice by the NHS (NHS Beacons Programme 2001) and became the focus of an implementation project devolved to strategic health authorities. The LCP was endorsed by the National Council for Palliative Care and the first national strategy for end of life care in England (Department of Health 2008) recommended its adoption by NHS trusts.

As the pathway became more high profile it began to receive more public attention. Some families raised substantial concerns that patients had been wrongly placed on the pathway, leading to terminal sedation and death, and reported that its use had led to the premature death of their relative (Irvine and Devlin 2009, Millard et al 2012, MacKintosh 2015). This was picked up by the media. The negative media reports and public perceptions of the LCP resulted in a government-commissioned independent review of the pathway chaired by Baroness Julia Neuberger. The review concluded that where the LCP was used properly, people died a peaceful and dignified death that was not hastened by having been placed on the pathway, but also that the LCP was not infrequently associated with suboptimal care, potentially leading to undignified and/or premature death (Independent Review of the Liverpool Care Pathway 2013). As a result, the government stopped the use of the LCP, which was phased out in 2013.

Following this phasing out, a coalition of 21 national organisations involved in palliative and end of life care developed five Priorities for Care of the Dying Person (Leadership Alliance for the Care of Dying People 2014), summarised in Box 1. Further guidance followed, including a framework for local action to achieve Ambitions for Palliative and End of Life Care (National Palliative and End of Life Care Partnership 2015) and a National Institute for Health and Care Excellence (2015) guideline on the care of dying adults. Collectively, this guidance outlines principles for the delivery of care to the dying person but, to the best of the authors’ knowledge, it has not been translated into clear structured processes for clinical practice, for the general population or for specific patient groups such as people with learning disabilities.

Box 1.

Priorities for Care of the Dying Person

  • 1: the possibility that a person may die in the next few days or hours is recognised and communicated clearly, decisions are made and actions are taken in accordance with the person’s needs and wishes, and these are reviewed regularly and decisions revised accordingly

  • 2: sensitive communication takes place between staff and the dying person and those identified as important to them

  • 3: the dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants

  • 4: the needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible

  • 5: an individual plan of care – which includes food and drink, symptom control and psychological, social and spiritual support – is agreed, coordinated and delivered with compassion

(Adapted from Leadership Alliance for the Care of Dying People 2014)

Key points

  • Inconsistencies exist in end of life care service provision for people with learning disabilities

  • Learning disability and palliative care staff often lack knowledge of and skills in each other’s area of practice

  • Learning disability professionals need better knowledge and resources to provide good-quality end of life care to service users

  • A group of professionals has developed an end of life care pathway for people with learning disabilities

  • The pathway, now in use by community teams in one county, provides a structured approach that places the service user at the centre of care and enhances partnership working between services

Evidence from the literature

To explore end of life care service provision for people with learning disabilities, the Berkshire steering group undertook a literature review. This involved a comprehensive search of nine databases using keywords including ‘end of life’, ‘pathway’ and ‘learning disability’ or ‘intellectual disability’. In total 13 studies were identified. The literature review revealed many good examples of integrated care for people with learning disabilities, but there was little relating specifically to end of life care.

The literature review also revealed evidence of a debate about who, between palliative care professionals and learning disability professionals, is best placed to deliver good-quality end of life care to people with a learning disability. According to Brown et al (2016), many learning disability professionals are not familiar with end of life care and, to remedy this, the authors set up monthly meetings between learning disability and palliative care staff.

Grindrod and Rumbold (2017) acknowledged that a partnership between learning disability services and palliative care services was needed but argued that it should be led by the former. A similar view was expressed by Ryan et al (2016), who explored the perspectives of staff from both types of services: learning disability staff highlighted the importance of continuity of care while palliative care staff recognised that they faced challenges when providing care to people with learning disabilities at the end of life.

The Care Quality Commission (2016) reported that staff working in residential care settings for people with learning disabilities lacked confidence in supporting them at the end of life. This was echoed by McLaughlin (2018), who found that many professional carers providing end of life care to people with learning disabilities lacked the required knowledge and skills.

McLaughlin et al (2015) explored the perspectives of people with learning disabilities and found that they preferred to be surrounded, at the end of life, by people familiar to them. Graham et al (2020) highlighted the importance of being cared for, at the end of life, by staff who are knowledgeable about learning disabilities and suggested that end of life care service provision could be progressively enhanced with the development of a new role, that of an end of life care specialist learning disability nurse.

While the crucial role of learning disability professionals is acknowledged, it appears there is among them a lack of knowledge and skills that may affect their ability to deliver good-quality care to service users at the end of life (Todd et al 2020). This evidence constitutes a driver for better collaboration between learning disability and palliative care professionals.

Tuffrey-Wijne et al (2015) conducted a Europe-wide study using the Delphi methodology to define consensus norms for palliative care of people with learning disabilities. These 13 consensus norms are summarised in Box 2.

Box 2.

Summary of European consensus norms for palliative care of people with learning disabilities

  • 1. Equity of access

People with learning disabilities should have equity of access to palliative care services and the professionals who support them should ensure that these services are available to refer people to.

  • 2. Communication

Professionals should seek to understand the communication needs of people with learning disabilities, who should be supported to communicate their needs in the best possible way, whether verbal or non-verbal.

  • 3. Recognising the need for palliative care

Health and social care professionals need to be able to recognise when people with learning disabilities need palliative care and should be alert to the signs and symptoms of serious illness, end of life and the dying phase. When a need for palliative care is identified, a person-centred plan should be put in place.

  • 4. Assessment of total needs

At the end of life, people with learning disabilities may have physical, emotional, social and spiritual needs. They may also have special palliative care needs as a result of their disability or of the societal response to it. All of their needs should be recognised and addressed.

  • 5. Symptom management

In people with learning disabilities, assessing pain and other symptoms can be challenging, since symptoms may be masked or expressed in unconventional ways. Professionals should be aware of the risk of diagnostic overshadowing. Collaboration between those who know the person well and experts in symptom management is crucial.

  • 6. End of life decision-making

Legal frameworks on mental capacity should be adhered to. People with learning disabilities should be assumed to have capacity to make decisions about their care unless otherwise demonstrated and should be supported to be involved in decision-making.

  • 7. Involving those who matter: families, friends and carers

‘Significant others’ may be relatives, partners, friends and/or carers, including paid care staff. The person’s closest carer(s) are likely to know them best and should be treated as an expert partner in the person’s care. Significant others should be encouraged to be as involved as they wish. The person’s wishes about their family’s involvement should be respected.

  • 8. Collaboration

Individuals and services that can offer their expertise should be identified as early as possible, including professional services, paid care staff, informal carers and spiritual leaders. Collaboration between all is key to the successful provision of palliative care to people with learning disabilities.

  • 9. Support for families and carers

Families and carers are often deeply affected when a person with a learning disability reaches the end of life. They should be supported and their grief should be recognised. Support for professional carers should include self-care training.

  • 10. Preparing for death

People with learning disabilities should be involved in advance care planning where appropriate. Discussions could take place before the need for palliative care arises. Once the need for palliative care has been identified, a care plan anticipating future needs and incorporating the wishes of the person should be developed.

  • 11. Bereavement support

People with learning disabilities experience loss and grief like anyone else, but they may express it differently and are at higher risk of complicated grief. Those who support them should be alert to the possibility of complicated grief and be aware of available bereavement support services.

  • 12. Education and training

Professionals involved in supporting people with learning disabilities at the end of life should be trained to address their specific needs. Learning disability staff need training on death, dying and palliative care, and palliative care staff need training on learning disabilities. People with learning disabilities should be encouraged to participate in discussions about illness, death and dying, including at day centres, special education facilities and at home.

  • 13. Developing and managing services

Policymakers should prioritise equitable palliative care for people with learning disabilities and commit adequate resources to it. Services for people with learning disabilities should plan for the provision of palliative care.

(Adapted from Tuffrey-Wijne et al 2015)

The first CIPOLD report (Heslop et al 2013) had shown that people with learning disabilities were less likely than the general population to have access to specialist palliative care services and had evidenced a lack of care coordination in the support provided to people with learning disabilities at the end of life and their families. Following that report, the Learning Disability Mortality Review (LeDeR) Programme (leder.nhs.uk) was set up by NHS England – contracted for the period 2015-21 to the Norah Fry Centre for Disability Studies at the University of Bristol (Further resources) – to review all deaths of people with learning disabilities in England reported to the programme.

The LeDeR Programme investigates the care received by a person with a learning disability before and in the period leading up to their death by examining their record and speaking with healthcare professionals, families and carers. Between 2016 and 2020, five LeDeR Programme reports were published based on the findings of the individual investigations conducted in the previous year (Further resources). One of the findings of the 2018 report was that planning for the health and care needs of people with learning disabilities at the end of life was suboptimal (University of Bristol 2019).

Developing the pathway

As shown by the literature review, learning disability services and palliative care services lacked knowledge of and skills in each other’s area of practice. Furthermore, there were no clearly defined processes for delivering end of life care to people with learning disabilities. The Berkshire steering group agreed that Tuffrey-Wijne et al’s (2015) 13 consensus norms (Box 2) could be incorporated into a framework that would enhance partnership working between learning disability and palliative care services. The steering group discussed several terms that could be used to qualify the framework and chose the term ‘care pathway’, since that term is commonly used in learning disability services in areas other than end of life care.

Alongside the findings of the literature review, the steering group used the findings of a local retrospective audit to guide the development of the pathway. It conducted an audit which involved searching the electronic records of 12 people with learning disabilities who had died in Berkshire in 2018-19 for evidence of:

  • The cause of death.

  • Whether the person had been aware that they were dying.

  • What care they had received before death.

  • Who had been involved in providing end of life care – that is, palliative care nurses, learning disability nurses or both.

  • What information had been recorded about end of life care.

  • What the family involvement had been.

The audit revealed inconsistencies in areas such as record keeping and relationships with palliative care teams. It also demonstrated that the people included in the audit had been given limited choice in how care had been delivered at the end of life.

The end of life care pathway developed by the steering group – which can be found appended at rcni.com/eolc-pathway – is structured on six domains underpinned by six ambitions (Box 3). It is designed as an aide-memoire for healthcare professionals who support people with learning disabilities at the end of life and their families. It prompts the development of a personalised care plan that respects the wishes of the person and their family. It also signposts staff to useful resources.

Box 3.

Domains and ambitions of the end of life care pathway for people with learning disabilities developed by the Berkshire steering group

Domains

  • 1. End of life diagnosis

  • 2. Assessment, care planning, review and coordination

  • 3. Support patient to live with condition and plan for sudden deterioration

  • 4. Care in the last weeks of life

  • 5. Care in the last days of life

  • 6. Care after death

Ambitions

  • 1: Each person is seen as an individual

  • 2: Each person gets fair access to care

  • 3: Maximising comfort and well-being

  • 4: Care is coordinated

  • 5: All staff are prepared to care

  • 6: Each community is prepared to help

The pathway represents a paradigm shift for end of life care service provision for people with learning disabilities in that it incorporates Tuffrey-Wijne et al’s (2015) European consensus norms, which mirror and complement national guidance. It provides a unified and structured approach that places the service user at the centre of care and enhances collaboration between all professionals involved.

Implementing the pathway

The end of life care pathway was introduced in all six CTPLDs in Berkshire in April 2019. Before its implementation, it was piloted for one year in the six CTPLDs with teams of between six and eight clinical staff.

The steering group wanted to ensure that clinical staff would be confident in its use. In February 2019, 36 members of staff were surveyed to establish their knowledge of the pathway and their confidence in supporting service users at the end of life. Following the survey, staff in all six CTPLDs received training on the pathway and how to use it. Twelve months later, the same 36 staff who had initially been surveyed completed the survey again. Comparing the results of the two surveys – which contained the same 11 questions – showed that, in the second survey, respondents’ awareness of the pathway had slightly improved and that significantly more respondents felt able to provide a personalised care plan and competent in supporting a person with a learning disability at the end of life.

In 2020, the steering group compared the care received by people with learning disabilities at the end of life before and after pathway implementation. The records of 12 service users who had died – whether at home, in hospital or in residential care settings – in the 12 months before pathway implementation were compared with the records of 12 service users who had died in the 12 months after pathway implementation. This produced evidence of enhanced partnership working between learning disability teams and palliative care professionals since pathway implementation. In the year after implementation, learning disability staff had been involved in the end of life care of all 12 service users, as opposed to only six out of 12 in the year before.

The end of life care pathway is being used by all community learning disability teams in Berkshire. It is recognised as beneficial by local hospices, acute NHS trusts and residential care providers, and CTPLD staff have provided positive informal feedback about the pathway and the resources it contains.

The pathway can be used or replicated by any team or service that believes it would support them to provide better end of life care to their service users. The authors would recommend its wider use, not only by community teams but also in acute care settings.

Conclusion

Learning disability and palliative care staff often lack knowledge of and skills in each other’s area of practice. Working together, they can be more effective in delivering good-quality care to people with learning disabilities at the end of life. The end of life care pathway described in this article enables partnership working by directing staff in learning disability services to the most appropriate professionals and services at different stages of end of life care. The pathway supports professionals to work together and ensures that staff have the knowledge and resources to care for people with learning disabilities at the end of life. The authors hope that its wider use will contribute to reducing inconsistencies in end of life care service provision for people with learning disabilities.

Further resources

Improving End of Life Care for People with Intellectual and Developmental Disabilities (2019) NHS Resource Pack.

bild.org.uk/wp-content/uploads/2020/01/Improving-End-of-Life-Care-for-LD-Jan-2019-FINAL-1.pdf

Marie Curie (2022) Caring for People with Learning Disabilities at the End of Life.

mariecurie.org.uk/professionals/palliative-care-knowledge-zone/equality-diversity/learning-disability

Palliative Care for People with Learning Disabilities (PCLD) Network (2022) Resources

pcpld.org/links-and-resources

University of Bristol School for Policy Studies (2021) The Learning Disabilities Mortality Review (LeDeR) Programme at the University of Bristol 2015-2021.

bristol.ac.uk/sps/leder/uob-2015-21/#d.en.544358

University of Bristol School for Policy Studies (2021) Annual Reports.

bristol.ac.uk/sps/leder/uob-2015-21/annual-reports/#d.en.442995

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