A bereaved mother has told a High Court judge how it 'compounded her grief' to discover that her disabled son had a 'do not resuscitate' notice placed on his medical file.
Elaine Winspear says she only found out about the notice when she was given her son Carl's medical notes following his death at Sunderland Royal Hospital.
Carl, who died aged 28 in January 2011 after battling a chest infection, suffered from cerebral palsy and epilepsy, and depended on his mother to meet his care needs.
His notes revealed that a 'do not attempt resuscitation' (DNAR) notice was placed on his file at 3am on the day he died. However, it was cancelled later that morning.
Mrs Winspear, of Manor View East, Washington, is now suing the City Hospitals Sunderland NHS Foundation Trust, claiming her son's human rights were violated.
She says there was no discussion with her before the notice was placed on his file and she was not even told of its existence.
The trust is vigorously defending the case and argues Mrs Winspear was consulted within a few hours of the notice being made, which led to it being cancelled.
In her evidence at London's High Court, Mrs Winspear said she told doctors treating Carl that she did not want a DNAR because she felt he had a good quality of life.
She added: "I felt I had to defend him and fight for him to have equal treatment."
Mrs Winspear also told Mr Justice Blake about her son's active life, despite his difficulties.
"I miss him terribly and in particular hearing his laugh, which used to often fill the house," she added.
She said she was 'livid' when she found out about the DNAR following Carl's death and felt she should not have been excluded from such a 'fundamental' decision.
"It has compounded my grief for Carl and left me feeling so angry about the circumstances of his death," she said.
"I cannot begin to imagine how I would feel had Carl suffered a cardiac or respiratory arrest during the morning of 3 January 2011 (when the notice was in place).
"On Carl's behalf, the hospital should have had a proper discussion with me so that I understood how do not resuscitate decisions are made and why they were suggesting one for Carl.
"I would have come to the hospital at 3am if a decision was needed urgently, or at least I would expect an advocate for Carl to have been consulted if I was unavailable.
"Carl could not speak for himself and decisions about what was best for him should have included talking to someone on his behalf.
"Although the order was cancelled, the fact the hospital maintains it acted appropriately simply increases the distress this has caused me."
Mrs Winspear is seeking a declaration that the DNAR breached Carl's human right to respect for his private and family life.
She is also claiming damages for the additional distress caused to her as a result of the notice.
Lawyers for the trust argue there was no breach of Carl's rights and say Mrs Winspear is not entitled to compensation.
Angus McCulloch QC, representing the trust, said: "The decision-making process was planned to involve Carl's family.
"It led to Mrs Winspear's involvement a matter of hours after the decision to impose a DNAR, and led to it not being confirmed by the consultant."
Given the importance of the case, Mr Justice Blake reserved his decision until a later date.