Providing end of life care and support

Scenario

Rainey has a moderate learning disability and was recently diagnosed with terminal bowel cancer. Rainey is frightened of dying and wants to leave hospital as soon as possible. Rainey’s consultant advises that she may only have up to 2 weeks to live.

Action

Rainey’s social worker uses guidance on the care and support of people growing older with learning disabilities and care of dying adults in the last days of life to help plan an agenda for an urgent multi-disciplinary care planning meeting. They use the guidance to ensure that Rainey’s wishes and concerns are given priority and to ensure that the care and support provided is seamless.

Further guidance

The guidance includes recommendations on person-centred end of life care planning and communication needs, including the opportunity to discuss fears and anxieties.

Relevant resources

Guidelines

• Learning disabilities and behaviour that challenges - service design and delivery guideline

• Challenging behaviour and learning disabilities - prevention and interventions guideline

• Care and support of people growing older with learning disabilities guideline

• Transition from children’s to adults’ services guideline

• Decision-making and mental capacity guideline

• Mental health problems in people with learning disabilities guideline

• Autism spectrum disorder in under 19s guideline

• Autism spectrum disorder in adults guideline

Quality standards

• Learning disability and behaviour that challenges quality standard

• Transition from children’s to adults’ services quality standard

• Learning disability: identifying and managing mental health problems quality standard

• Autism quality standard