Word of the Week – 29/01/16

Word of the Week – 29/01/16

Peaceful, pain free and dignified: palliative and end of life care for people on the autism spectrum
Jill Ferguson and Val Lauri
BILD (the British Institute of Learning Disabilities)

peaceful pain free

Dr Irene Tuffrey-Wijne reviews the new book ‘Peaceful, pain free and dignified: palliative and end of life care for people on the autism spectrum. A guide for social care practitioners’ by Jill Ferguson and Val Lauri.

In 2013, a man called Stephane died from cancer at the age of 48. His illness and death were a huge challenge for the people around him: his family, his carers and his friends.

Stephane had autism, which impacted on his thinking, understanding and responses to his illness, and challenged the usual ways in which physical, practical and emotional care is delivered at the end of life. Many of these challenges were new to the health and social care staff.

Now, two authors who work for Scottish Autism (the organisation which provided support for Stephane during his life) have worked with his team of care staff and his family to produce a highly practical guide, sharing their learning. The book tells the story of Stephane’s care during the final three years of his life.

A4-sized and with solid colourful pages, the book is attractively laid out. Story boxes and quotes from carers, palliative care staff, family and friends are interspersed with clearly written explanations, information, guidance and pointers to useful resources.

There are sections on physical, psychological, social and spiritual care. This makes the book easy to dip in and out of, and easy to navigate if readers are looking for guidance on a particular issue.

Many (although not all) people with autism also have learning disabilities, and the guide is useful for both groups.

The book is subtitled “A guide for social care practitioners”, and it is indeed written primarily for care staff supporting people in autism or learning disability services. The writing is easy to understand, with no jargon, and assumes no knowledge of palliative care.

However, there is plenty to learn for palliative care professionals too. Fundamentally, the palliative care needs of people with autism and those with learning disabilities are no different from those of the general population.

For example, all palliative care patients require good pain and symptom control, but this can be much more difficult to achieve when people have autism and/or learning disabilities. I like the way these are described through Stephane’s story, making them instantly relevant and understandable.

One visual image summarised some of the particular challenges raised by palliative care nurses in managing Stephane’s end of life treatment:

  • needle-phobic
  • refusal to take certain forms of medication
  • dislike of certain textures on skin (including plasters)
  • atypical responses to medication, making it difficult to assess appropriate medication and dosage
  • lack of capacity to consent or refuse treatment
  • dislike of touch
  • high pain threshold
  • resistance to unfamiliar aids and apparatus in home
  • inability to distinguish between and articulate different types of pain

There are many gems in this book; simple examples of what can be done to help not only the patient with autism but also his family and autistic friends.

“We gave Euan (Stephane’s friend) a help card that explained in a very practical way what he could expect to happen on the day Stephane died,” a staff member said. “It was just a few lines with bullet points on a card that fitted in his wallet, but this is what Euan needed. He needed that explanation and reassurance to be with him throughout Stephane’s illness.”

There have been several publications in recent years providing guidance around palliative care for people with learning disabilities. This new book is unique, however, not just in its focus on autism but also in its user-friendly way of providing comprehensive information.

Palliative care staff supporting patients who have learning disabilities or autism should definitely recommend this book to the social care staff involved, and could themselves learn much from reading it as well.

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Previous Word of the Week

15/01/16 – The Long Goodbye

22/01/16 – Calvin and Hobbes

29/01/16 – Peaceful, pain free and dignified: palliative…

05/02/16 – Travelling to Infinity: My Life with Stephen

05/02/16 – The Five People You Meet in Heaven