The Unthinkable | QCS

The Unthinkable

May 1, 2015

For all of us, dealing with the end of life is one of the hardest things we will have to face. It’s no less difficult for people with learning disability.

I know a few young people who are not going to ever be old people, because they have significant and complicated health needs which mean that their lives are limited. They will die before they have a chance to really live, which is tragic and cruel and unfair.

One of the hardest facts for some parents to face is that they will outlive their child. This is a reality for many families with a member who has a disability. Sometimes, this has been a fact of life since the person was born. Sometimes, this is another unexpected blow in an already challenging life journey.

How to face the facts and stay positive?

Working with life-limited people has been an interesting journey for my team, since it challenges their attitudes to the people they care for. We spend a lot of energy promoting the independence and developing the skills of people with learning disabilities and indeed our whole point of view is around acceptance, ordinariness and respect for their individuality. The feelings that end of life care generates in staff can mean that this is compromised. They feel overwhelmingly sad, they feel compassion and they feel fear.

All of these conflicting emotions in staff have an obvious effect on their clients, who may not be able to vocalize or even understand what is happening to them, but can pick up the mood of their friends and know that all is not well. When faced with a team who struggle with their own feelings, people with intellectual disabilities have nowhere to seek answers for themselves. Yet they do need to be part of the journey of understanding the end of life, in the most appropriate way to their needs. They need to be involved in their end of life plan as much as they have a right to be the centre of their life plan, no matter how difficult this can seem.

Good practice from primary care

In trying to produce a pathway and plan for a young man who is nearing the end of his life, I stumbled across a really interesting source of good practice that has been put together by two health care trusts in Nottinghamshire. Directed chiefly at primary care staff, the Learning Disability End of Life Resource Pack was the product of a working group that cut across professions and drew on the combined expertise and experience of nurses, GP’s, speech and language therapists and others.

The core of the resource pack is around communication, identifying the issues and ensuring that care is coordinated around the individual, who will be involved in their care as far as is possible. Easy-read and pictorial plan documentation allows carers to help talk about the plan and establish greater understanding of the things that will be happening around them and to them.

If you find yourself facing the difficult and distressing situation of helping a service user towards the end of their life, this pack can be a valuable and thought-provoking tool. It will not give you all of the answers, nor provide your team with the resilience they will no doubt need to give the best support. It will however help to guide you in the best practice around this inevitable part of living.

Find the pack here, among many other helpful resources.

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Ginny Tyler

Learning Disabilities Specialist


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