Learning Disabilities & Autism Opinion

Dying to talk

Beth Britton, Consultant, MacIntyre’s Dying to Talk Project

Dignity in dying isn’t something people with a learning disability have always experienced. Amongst the many reasons for this is the historical standpoint that people with a learning disability won’t want to be or can’t be involved in planning for their end of life care, or that they should be shielded from knowing about a death amongst their family members, peers or friends.

Through MacIntyre’s Dying to Talk Project we have begun to have some honest, and often emotional, conversations about death and dying with people supported and MacIntyre staff. We are aiming to:

  • Help people supported feel less frightened to hear and talk about death and dying and gain more knowledge so that they can have greater personal choice.
  • Help family members of people supported feel more comfortable speaking to their loved ones about death and dying.
  • Help MacIntyre staff members feel more comfortable speaking to the people they support about death and dying.
  • Help professionals outside of MacIntyre understand the importance of speaking about the issues related to death and dying.
  • Develop a legacy of resources and training guidance.
  • Help guide more people to have advance care plans and wills.

To achieve these aims we’ve split the Project into two phases. Phase 1 saw us provide nine hours of training for MacIntyre staff in our four pilot areas. This covered everything from the language we use around death and dying, to advanced care planning, care in the last days and hours of life and grief and bereavement.

I really enjoyed the three sessions of the Dying to Talk training. There was a wealth and variety of information presented and it was a nice way of dealing with a sensitive subject.” Jan, Frontline Practitioner 

Phase 2 of the Dying to Talk Project, where we work with people MacIntyre support, families and health and social care professionals is still ongoing. A huge positive so far has been the willingness of many of the people MacIntyre support to:

Have conversations about what death and dying means to them:

“I have had a lot of family and friends die of cancer. It’s sad but we are all gonna die.” Paige

What their wishes for their own death are:

“I don’t want to be burnt (cremated) I want to be buried, because when my mum went behind the curtain it was too sad and it made me cry.” Andrew (Andrew’s staff were unaware of this and had documented cremation)

Reflect and remember people they’ve loved who have died:

“One of Kathy’s favourite songs was Dolly Parton ‘9 to 5’. It was played at her funeral.” Sharon and Steven remembering their housemate Kathy

To support these conversations we are using a range of communication tools including Grave Talk cards , Books Beyond Words and Talking Mats 

Would someone you support with a learning disability benefit from having these conversations too? MacIntyre have numerous free-to-access resources to help any health or social care professional effectively support a person with a learning disability to understand what death and dying is and plan for their end of life care. These resources include eBooks, the ‘My plan for before I die’ and the ‘My plan for after I die’.

How you can get involved

We are keen to work with health and social care professionals who support people with learning disabilities at the end of their life.

Contact us if you’d like to know more about the Dying to Talk Project health.team@macintyrecharity.org

 

Edel Harris

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