How to Break Bad News to People with Intellectual Disabilities by Irene Tuffrey-Wijne

Author:Irene Tuffrey-Wijne [Tuffrey-Wijne, Irene]
Language: eng
Format: epub
Tags: Social Science, People With Disabilities, Medical, General
ISBN: 9780857005830
Google: qJBtj6pOoL4C
Publisher: Jessica Kingsley Publishers
Published: 2012-09-15T05:29:16+00:00

Michael Burton was left without support when receiving bad news, because it was thought to be his ‘right’ to be alone. In fact, it is poor practice to tell any patient such bad news without inviting someone close to them to be present, let alone a patient who has intellectual disabilities.

Telling the patient first, with family present

Angela Waight was 41 years old and had moderate intellectual disabilities. She lived in her own flat and was supported by care staff who came in several hours each day. She was well known to the community intellectual disabilities team. Her parents lived nearby and visited her every day.

Angela was diagnosed with pancreatic cancer during an emergency admission to hospital, following sudden jaundice (yellowing of the skin). Her prognosis was short; the hospital consultant thought that she only had a few months left to live. Angela’s mother always accompanied her to all her hospital appointments and was at her hospital bedside for most of the day. The consultant discussed the situation with the pancreatic nurse specialist and with Catherine, the community intellectual disability nurse who knew Angela well. Catherine thought that Angela would be able to understand that she was very ill and that she would not recover. She also thought that if Angela was given the right information and support, she would be capable of making choices about her care and treatment. Catherine explained to Angela that the doctor and nurse were going to tell her what was happening with her illness, and that it would be best if both her mum and dad were there too. All three professionals were present when the doctor told Angela and her parents the results of the tests. Catherine helped the doctor to explain things in simple language. Angela’s parents were deeply shocked and cried; when Angela saw this, she cried too. During the following few weeks, both nurses spent a lot of time with Angela and with the parents, together as well as separately. They explained to Angela that her parents needed to know everything about the cancer, and Angela agreed that the pancreatic nurse specialist could talk to them on their own. Catherine met with the team of care staff to explain the situation. She acted as a coordinator, making sure that everyone involved knew what was happening and how Angela had been helped to understand her situation. Despite their initial distress at Angela being given the bad news, her parents said that the openness with which they could face the situation with Angela had helped them. They believed it helped Angela too.

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