“To experience loss, death, grief or bereavement is as varied for each individual as there are words for it. Some find it a subject they can freely talk about, others may find it more challenging. We feel it is important to consider our loved one’s ability to understand, process and convey their own thoughts and feelings when this experience happens in their lives. A fear could be the result of a misunderstanding or an ambiguous word or phrase, knowing what your loved one already understands will help you to help them plan for the future.” - Essex Carers Network
Talking about death and dying is difficult for most of us, but historically it has been a huge barrier for people with learning disabilities.
End of Life plans enable the recording of a person’s thoughts and wishes and help to open up conversations that may have been avoided for a long time. This gives a person with a learning disability more choice and control over the end of their life.
It's not easy to talk about death, dying and funerals but if we neglect these subjects, we can be unprepared for our own death and the deaths of those close to us.
People with learning disabilities often have additional needs in palliative and end of life care. Understanding and considering these needs when providing care, can improve people's quality of life. It can also make sure they're getting the person-centred care they need
Take a look at these useful easy read documents which will help you start up the necessary conversations:
End-of-Life Plan
The End-of-Life Plan should be completed with the individual and will contain their information and wishes around their support and care at end of life. Some areas may be completed before the adult has shown any signs of illness or frailty.
It should be viewed as a living document and can be amended and reviewed by the owner whenever necessary.
- It includes sections that identify what support the adult would like if they should be very ill, ‘do not attempt cardiopulmonary resuscitation’ (DNACPR), Power of Attorney, who to contact when they are very ill and what the person would like in terms of funeral wishes and celebration of their life, after their death.
This is an example of an easy read End of Life Plan that you might want to use.
