Caring for people with learning disabilities at the end of life

Please be aware - this information is for healthcare professionals

People with learning disabilities and those with autism should have the same access to health and social care services as everybody else, including all end of life care services.

It is important to increase your understanding of their specific needs and provide person-centred care that acknowledges and supports them in their last months, weeks and days.

Who are we referring to when we talk about people with learning disabilities?

The Department of Health describes a learning disability as a “reduced ability to understand new or complex information, to learn new skills…[and]… to cope independently … which started before adulthood and which has a lasting effect on development.”

The term learning disability (often used interchangeably with learning difficulty) is used to describe a range of disabilities which vary greatly from one person to another and which may be accompanied by physical disabilities.

Autism is not a learning disability. It is a lifelong developmental disability that affects how people perceive the world and interact with others. All autistic people share certain difficulties, but being autistic will affect them in different ways. Some autistic people also have learning disabilities, mental health issues or other conditons meaning they need different levels of support.

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What are some of the key issues experienced by this group of people at the end stage of life?

The route to success in end of life care - achieving quality for people with learning disabilities highlights nine key considerations:

  • Due to challenges presented to mainstream health and social care services by the needs of people with learning disabilities, the diagnosis of life-threatening illness often occurs late
  • Historically, it has been considered (by professionals and family) not to be in the best interests of people with learning disabilities to tell them about serious illness or death. It is now understood that this is unhelpful, but there may still be some resistance to talking about these issues
  • Many people with learning disabilities will not have extensive experience of making choices or controlling their own lives
  • Where service users live in their own homes or under the care of third sector organisations, staff may not be trained in physical health care or care of the dying and may not see provision of end of life care as part of their role
  • The setting in which the person with a learning disability lives will have a bearing on how their end of life care may be provided
  • Many hospitals and hospices do not have experience of caring for people with learning disabilities who are dying
  • Previous bad experience of mainstream health and social care may make service users reticent to engage with those organisations which are proficient in care of the dying
  • Where the  person with learning disabilities has challenging behaviour, mental health problems or profound learning disabilities then careful consideration needs to be given to the best place in which to provide their care and to the support needs of those around them
  • Much of the expression of illness or distress will be made behaviourally by the person with a learning disability.

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As a generalist healthcare professional, what can I do to provide better care to someone in these circumstances?

Try and develop early relationships with all staff involved in the patient’s end of life care. By working collaboratively, you can help make sure their needs are understood and met.

It is important to remember that just because someone has a learning disability it does not mean they can’t make informed decisions about their care and treatment. Be careful not to make assumptions. Instead, provide timely, sensitive and consistent support.

Communication needs should be one of your primary concerns when a patient has a learning disability (whether they use spoken language or not), especially when talking to them about symptoms and treatment. Consider using other forms of communicating such as using pictures or videos. Information needs to be accessible.

Marie Curie provides free easy read booklets that are designed to be used by people with learning disabilities who have a terminal illness or are caring for someone with a terminal illness. They cover a range of topics including who can help, work and money, and dealing with feelings. Download or order Marie Curie’s easy read booklets.

Because some people with learning disabilities will not be experienced in making their own choices, end of life planning may be a slow process. To provide person-centred care, it’s important to be patient and adopt an ‘as long as it takes’ attitude to ensuring that people understand the information they are given and the decisions they need to make.

You may find it useful to seek out any relevant training opportunities. There may also be colleagues with specialist knowledge or work with people with learning disabilities regularly that can support you.

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Where can I signpost my patient and their carer (if they have one) to for further support?

You should start by checking whether the patient already has a learning disability nurse. If not, the patient’s GP should be able to provide the details of their local learning disability team. The patient may need an assessment by the specialist nurse in that team and may also benefit from other support such as occupational therapy or social work.

You can also call your local hospice to ask for advice and signposting to other relevant services.

Patients and carers can download or order Marie Curie’s easy read booklets for free.

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Where can I find out more?

The majority of this information has been taken from The route to success in end of life care - achieving quality for people with learning disabilities.

The guide may be useful to health or social care professionals who don’t regularly work with people with learning disabilities. It may help you clarify what measures need to be taken to ensure that the patient can access appropriate care.

The NHS England End of Life Care team, in partnership with the Palliative Care for People with Learning Disabilities Network, has published Delivering high quality end of life care for people with a learning disability (August 2017). It includes resources and tips and aims to reduce inequality in palliative and end of life care for people with a learning disability. It may also help you ensure the patient has appropriate care.

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