How do you assist people with autism in bespoke palliative and end-of-life care? – Autism in Practice – April 2014

In the second of four features for the April 2014 issue of Autism in Practice, I explored the process undertaken by Scottish Autism as they delivered bespoke palliative and end-of-life care to an existing client they worked with. Through understanding autism, they took their existing best practice into account and shaped it into a plan that worked for the client, the loved ones of the client and also themselves as a care provider.

Jill Ferguson, Services Manager at Scottish Autism, and Val Laurie, a Senior Autism Practitioner at Scottish Autism, work with a team that includes community nurses, consultants and specialists to provide palliative and end-of-life care for people with autism.

The team have recently assisted a service user to access specialist assistance after being diagnosed with terminal cancer. Steps were taken to provide physical, psychological, social and spiritual support for the individual.Jill says: “We are looking at a first generation of autistic people who may need this level of care. This was the first experience myself and Val had of working with somebody in palliative care.

“We know it won’t be the last, and it’s important to prepare and consider as an organisation what the challenges might be for the people with autism we support. We had no practice manual.”

Val was surprised by the reaction of other service users on the autism spectrum. The individual’s immediate peer group showed large amounts of empathy. She believes this was reassuring to see. She says: “It was a great surprise how the group took an interest and showed empathy. If they hadn’t coped, it could have created challenges. It could have been a lot tougher.”

Physical challenges

Physically, pain management was a big challenge to deal with. Ensuring the service user could cope with what they were experiencing was key.

Jill explains: “If somebody is not able to express or articulate when they are in pain, or understand different types of pain in their body, that leaves them incredibly vulnerable and it also presents a huge challenge to healthcare professionals in figuring out a treatment plan. That was incredibly complex.”

High levels of medication were required, so working closely with the palliative care specialists was crucial. With new situations, verbal and visual supports were used.

Psychological and social challenges

Val says: “It was difficult for the team. We were there for each other. We supported each other. We had regular meetings with consultants and district nurses to discuss our feelings.

“A lot of the team were divided in thinking we just need to give everything in these final months we can to meet their aspirations but on the other hand, we needed to think about autism. Structure and routine were important because they acted as something to wake up for every day.”

Spiritual challenges

Spirituality was the final step to consider. Jill says: “The spiritual considerations are about how you feel in yourself. It isn’t just about religious and cultural customs and beliefs. Where do you see yourself in your past, present and future? It is about personal significance and meaning. It is about your life journey.”

Providing palliative and end-of-life care was a journey in itself. It was a unique experience but it is one Jill and Val believe other organisations can learn from.

As Jill concludes: “End-of-life care isn’t just about planning for the end, it’s about ensuring the best possible quality of life.

“Everything you can do for the person to ensure end-of-life care is as comfortable and peaceful as it can be is important. You need to make care as dignified as it possibly can be.”