Helping people with a learning disability face dying

David O'Driscoll discusses the importance discussing death with people who have learning disabilities.

I have been seeing a man for psychotherapy who has a serious cancer diagnosis, he has been given six to nine months to live. He knows that he has this prognosis, as he was part of the meeting with the consultant. The difficulty is, however, what is his understanding of his situation?

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It is problematic to gauge as he feels fine, is physically healthy and carries on his life as if he has not had this diagnosis. His family encourage him in this thinking – not wanting him to know the timescale – nor do they talk to him about his condition, as he is a 'happy go lucky chap’, and ‘it would spoil his last few months’, and they are concerned he would become depressed. This is a view also upheld by his support staff. They do not discuss his situation with him either, claiming they are supporting his families’ wishes.

The patients' rights

Myself, the Macmillan nurse and the community learning disability nurse are clear that, if he asks, we would be honest about his prognosis, explaining to the family and his support service that, as health professionals, we should focus on a patient’s rights, and that he has a right to know.

'The right to know is important to modern learning disability professionals as we are governed by a service user-led agenda'

Is the real reason he is not being told about the staff and family difficulties with dying? This stirs up understandable uncomfortable feelings inside us. His support staff may feel that we did not sign up for this, after all we are not ‘a specialist end of life service’, while the response from his family may reflect their view of him as a person with a learning disabilities and they want to protect him. 

Sigmund Freud

Keeping bad news from people has a long history in medicine, and not just for people with learning disabilities. Sigmund Freud lived a long time with cancer of the jaw. He was first diagnosed with this in 1923 and died in 1939. His doctor did not tell Freud of his diagnosis, but confided in some of his associates who decided not to tell him. He found out and demanded what right they had. Freud changed his doctor and told his new one that the most important element in the doctor-patient relationship was truth however uncomfortable.

The right to know is important to modern learning disability professionals as we are governed by a service user-led agenda. Despite this, there are many examples of decisions being made behind service users’ backs. There is a potential for my service user to be angry when he realises how seriously ill he is, how little time he has left and how no one is helping him think about this.  

Honesty and truth

There has been some noteworthy research, which is often overlooked, about how people with learning disabilities show resistance to pain, coping with the boredom and frustration of illness, in a way others without disabilities would struggle with. My service user showed these capacities despite often being confused about his illness. This ability can get overlooked in our desire to look after and protect service users, and maybe also protect ourselves.

Anxiety on death and dying is natural and to be expected, but I believe that the issue is that we all need help and support to face the final curtain in an honest way. 

About the author

David O’Driscoll is a visiting research fellow, University of Hertfordshire

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