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Palliative and end of life care for autistic people

Jill Ferguson, Services Manager with Scottish Autism, discusses why they developed a good practice resource guide on end of life care for autistic people. She also offers some advice on providing palliative care for autistic people.

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Author: Jill Ferguson

Palliative and end of life care for autistic people

The mission statement of Scottish Autism sets out our commitment to providing support for people on the autism spectrum ‘through the whole life journey’, and there has been a focus for those of us working in adult services in recent years on supporting an ageing population as they reach key junctures in their lives and prepare for future life transitions.

Future planning

Approaching end of life has been described as the ‘hidden transition’ (Read, 2006), as a diagnosis of life-limiting illness forces the individual to acknowledge a whole new set of assumptions about their future. With life comes the inevitability of death, and it is a subject that affects us all regardless of culture, beliefs, age or ability. Yet we often remain uncomfortable reflecting on such a sensitive subject and one that is open to ethical, societal and spiritual debate.

It is understandable that amidst the pressures and considerations of day-to-day life we are not keen to stop and contemplate our death and the death of those we know and support. Future planning can be especially difficult for people on the autism spectrum and their families and carers, who often have to cope with additional and more immediate stresses and life pressures.

Conversations surrounding our death are about recognition of what is important in life and shouldn’t wait for a diagnosis of a life-limiting illness or the planning of a funeral. The quest for wellbeing and fulfilment in life recognises the holistic interaction of physical health, social relationships, and psychological and spiritual needs throughout our life, and not just in the face of death.

Why we produced the guide

We started having conversations about end of life care following the experience of a team of autism support workers from Scottish Autism, who supported a 48 year old man throughout his life and at the time of his death from terminal cancer. In addition to the expected practical and emotional challenges faced when delivering care for a person at end of life, the impact of his autism on his thinking, understanding and response to his illness posed additional support challenges and questions.

The health and social care staff supporting him had never experienced these challenges before. We wanted to capture some of those experiences and develop a practice guide that could be used by teams faced with delivering support to other individuals on the autism spectrum at their end of life.

The team who supported him at end of life had opportunities to:

  • discuss how they felt
  • reflect on what they personally found difficult
  • explore what the team did well and what we could learn from to inform our practice for the future.

We filmed those conversations, transcribed them and shared them with other staff, professionals and families. Those conversations formed the basis of a good practice resource published by the British Institute of Learning Disabilities (BILD), focusing on palliative and end of life care for people on the autism spectrum.

Palliative and end of life care for autistic people

The publication focuses on four key areas of support at end of life:

  • physical
  • psychological
  • social
  • spiritual.

The Scottish Government’s national action plan for palliative and end of life care advocates:

“…an approach to care which is person-centred and based on neither diagnosis or prognosis but on patient and carer needs… which recognises the diversity of life circumstances of people who will need palliative and end of life care” (Living and Dying Well, 2008).

For people on the autism spectrum there is a requirement for support and accommodations from diagnosis through to end of life that are particularly person-centred and inclusive of the diversity of needs in a broad and varied spectrum of individuals. For example:

  • difficulty accessing equitable and appropriate health care,
  • social communication and understanding difficulties that may affect how they form and sustain a network of social support
  • differing perspectives and thinking styles may affect the way they understand their illness and express how they feel
  • a definition of meaning and spirituality that may be deeply personal
  • struggling to place themselves in the narrative of their life. 

A need for stronger links between health and social care services for people on the autism spectrum is essential if we are to provide holistic end of life care that encompasses a developed understanding of the person’s individual needs. There needs to be an acknowledgement that peace at end of life comes not just from medical intervention and symptom control, but from an understanding of who we are and what is important to us in life.

Top 5 tips on providing palliative care to a person on the autism spectrum

1.Ensure that the person is involved in decisions about their care.

For people on the autism spectrum who have differing communication preferences and ways of processing information, changes to how we present information and choices to them can have a significant effect on their capacity to make decisions about their care.

It is always important to consider: does the person lack capacity to make a decision about their care, or have we failed to make changes and put in the correct supports to enable them to understand their choices and make informed decisions?

If an individual does not have the capacity to enter into a process of advance care planning then every effort should still be made to determine their wishes.

2. Consistency of support and strong partnership working between health and social care teams is essential.

It is vital that social care staff and healthcare professionals work closely together to provide the best possible care for the person with a life-limiting illness.

Uncertainty over roles and poor communication can contribute to a breakdown in partnership working. Regular discussion forums and team meetings provide supportive spaces for everyone involved in the person’s care to ask questions that contribute to a greater understanding of the person’s needs and wishes.

3. Plan and communicate to health teams what reasonable accommodations or adjustments might have to be made to ensure best possible quality of palliative and end of life care.

For individuals who struggle to effectively communicate their needs, healthcare and communication passports can provide valuable and important information to ensure best possible person-centred care and treatment.

Management of pain is a particularly important part of end of life care, and is dependent on the person being able to communicate how they feel and be descriptive of pain. For those individuals who struggle to express themselves, scales for expressing pain and pain assessment tools (such as the DisDAT Disability Distress Assessment Tool) should be used to document indicators of distress and discomfort. 

4. Understanding the thinking style of the person you are supporting enables you to plan and prepare for difficult conversations, and consider how information is best communicated.

When a person on the autism spectrum we are supporting receives such life changing news we should take time to stop and understand:

  • how does the person think about and experience the world around them
  • how do they learn and take in new information
  • what is important to them in their life.

The answers to these questions can be used to:

  • tailor information and communication to be reflective of the person’s thinking and learning style
  • motivate engagement in important discussions, and support understanding by making information relatable
  • prioritise the information being communicated based on the person’s needs, and not what we presume is appropriate based on our own feelings and experiences

5. Support the person to reflect on important events in their life, and experiences that have given their life meaning.

These reflections can be captured in different ways. It might be important to utilize a range of formats or multi-sensory tools to engage and evoke memories. In addition to use of pictures and words it might be useful to include tangible objects of reference, audio, scents, textures or video.

References

Scottish Government (2008), Living and Dying Well: a national action plan for palliative and end of life care in Scotland, Edinburgh, Scottish Government

Read S (2006) Palliative Care for People with Learning Disabilities, London: Quay Books

Further reading

British Institute of Learning Disabilities (BILD)

Palliative Care for People with Learning Disabilities (PCPLD) Network

Ferguson, J., Laurie, V., (2015) Peaceful, pain free and dignified: palliative and end of life care for people on the autism spectrum, London, BILD

Scottish Autism

Date added: 18 May 2016