Improving End-of-Life Care for Patients with Learning Disabilities

This case study will look at ways of implementing workforce training programmes to improve end of life care for adults with learning disabilities.

We heard from Louise Jenkins [1]. Louise is the Strategic Lead Nurse for Hertfordshire’s Community Learning Disability Nursing service. Having qualified as a Learning Disabilities Nurse in 1996 she has worked in various roles within the community and health service.

Over the last 5 years, she has been working closely with local palliative care services to improve the care people with learning disabilities get at the end of their life, along with the introduction of training for social care staff supporting people living in the community.

Louise and their team identified a gap in staff knowledge on how to recognise and manage end of life care for people with learning disabilities.

The service then raised questions and took action to do better for people at the end of their lives.

What Did They Do?

• They ran an initial pilot in 2 care settings to test out an adapted ABC Palliative care programme. This was delivered over 2.5 days to the whole team over three months.

• The ABC programme is a palliative care training course which consists of verified training modules. Historically this course was delivered to elderly services and had not been received by those delivering care to people with learning disabilities.

• The Graham Rowlandson Foundation provided £26,250 to help deliver an End-of-Life education programme to up to 250 social care staff in 10 learning disability care settings across Hertfordshire.

• Delivered education to 107 staff across 16 residential and supported living settings with 48 sessions. Sessions delivered jointly by Palliative care Educator/Practitioner and Community Learning Disability Nurses.

• Due to savings during the delivery of these schemes, (venues being provided for free) they were able to deliver 6 education sessions to social care staff working in the local authority.

• Louise and her team then evaluated the learning and outcomes of delivering the sessions.

Feedback and Outcomes of the Training

1) Increase in confidence

The sessions led to a marked increase in confidence of those providing palliative care to patients with learning difficulties.

A lot of the staff had the knowledge before the training, but they lacked the confidence in that knowledge. The training gave people the confidence to know how to start uncomfortable conversations about end-of-life care with patients and their families.

Additionally, it gave staff the confidence to be more compassionate with their patients and to not fear asking questions or to put their arm around somebody when they are upset.

2) Improvements in quality of care

Pain control for non-verbal patients is an area covered by the training. Several care homes reported that following the training they had begun to reflect on the non-verbal cues that might indicate a patient was in pain and adjust when pain relief was administered.

For example, one service user was on regular doses of paracetamol for joint pain and stiffness and was agitated on waking and reluctant to get washed and dressed. Staff reflected that the resident might be in pain on waking, moved the first paracetamol dose forward to 30 minutes before the day’s routine started and saw a marked reduction in levels of agitation.

Advanced care planning for end of life with families is an essential part of the care staff role. This can often be difficult if families and carers have differing views about how much a service user can cope with.

During the training, the family of a resident suffering from dementia made their annual visit from abroad. Staff were able to introduce the need for advanced care planning with the family, who compiled a large photo album with attached dialogue for each photo. There is now an Advance care plan, DNACPR documentation and funeral plans in place for this service user.

3) Improved understanding of the end-of-life care needs of people with learning disabilities.

Louise reported improved communication with wider health partners. One care home is now working with a nearby GP practice pharmacist to review the medication of their end-of-life patients, another is sharing the course documentation with their linked GP practice.

A care home reported changes in the way staff handover care of residents who are admitted to the hospital, in which much more attention is now paid to ensuring hospital staff understand all communication cues, including non-verbal cues, of residents, so that hospital staff are better able to meet patient needs and provide appropriate care.

Community learning disability nurses who have been working alongside hospice educators have also reported increased understanding that has led to improvements in care.

4) Improved bereavement support for residents, families, and care staff in the service user’s home

This was an unforeseen outcome of the training but one which has been consistently reported by many of the participating care settings as an area that staff felt they needed to make changes to improve the support offered to staff, residents and families.

Louise states that there was a particular focus on recognising bereavement distress in non-verbal residents or those who present with behavioural problems.

The training helped to develop strategies to support them. Several homes have been developing remembrance materials about the deceased resident to help other residents manage their grief, such as pillows made from the deceased’s clothing

The training has also prompted one home to reconsider a few of its practices and how they impact the bereavement process. Specifically, to recognise that staff also experience grief when a resident dies and how to better support them.

Examples of measures they are putting into place to support bereavement include:

• Rethinking the immediate clearing of a room after a resident passes away

•  Introduction of more meaningful bereavement support for staff beyond a telephone support line

• Integration of remembrance events to remember deceased residents

Embedding these Skills into Practice

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Louise tells us of an occasion that clearly demonstrates the impact of the educative courses.

Before the training had started a service user of many years unexpectedly died. Even though a Do Not Resuscitate (DNACPR) was in place, staff panicked and called the emergency services and resuscitation was attempted, which was traumatic for staff and the service user. After the training, they reflected on this patient’s death and realised that there were signs in the last weeks of life that the resident was deteriorating and did not have long to live.

After the training, another service user in the care setting was admitted to the hospital and then discharged back home for end-of-life care with support from the district nursing team.

The management noted increased confidence and communication skills among the staff when coordinating and planning their care. The eventual death was very peaceful, staff stayed with her, holding her hand, playing her favourite classical music. A member of staff who had been present at both deaths reflected on the positive effect of knowing how to support a “good death” thanks to the training.

There is more to do…

Although Louise has noted vast improvements in the end-of-life care of patients with learning difficulties, there is still more than the sector can do:

• There is a need to engage wider health partners in discussions about Advance Care Planning and the complexities when working with people with learning disabilities

• It is essential to learn how to support people with profound communication difficulties in loss and grief

• To develop ways of supporting a person with learning disabilities in meaningful DNACPR discussions

• Recognising and managing the complexities of bereavement for residents, family, and care staff

• How to respond to increasing complexity of need as a resident’s condition deteriorates and support staff anxiety in the service user remaining at home

• Improving understanding of pain control, postural support for feeding and when to engage speech and language therapists to support feeding and end of life conversations for people who receive PEG Feeding

 [1] Jenkins, Louise. 2021. StrategicLeadNurse, Hertfordshire County Council Community Learning Disability Nursing Service

[2] The Graham Rowlandson Foundation. 2021

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