A woman was shocked to find a ‘do not resuscitate’ order had been put on her sick husband by mistake and without letting the family know.
Sonya Brown said she made the grim discovery “by chance” after finding documents left on her sofa by a health worker.
She said the decision to put a do not attempt cardiopulmonary resuscitation (DNACPR) order had not been discussed with family members.
The 51-year-old said she was “overwhelmed” and felt like a decision should have been made with family involvement.
It comes as a new report calls for lessons to be learned from the Covid pandemic about DNACPR orders.
The report, published by Compassion in Dying, is calling for better end-of-life care.
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Mrs Brown, from Lanarkshire, described how her late husband Alan was diagnosed with lung cancer in October 2019 and was admitted to hospital in March last year with severe breathlessness.
He was sent home after several days in hospital, and died after about eight days.
His wife, an advice line worker, said: “The following day the nurses had left a blue community nursing folder lying on the sofa.
“Inside the front cover were two documents – one said DNR; one said something which gave nurses the authority to say he’d passed away. They were dated the day he went into the hospital.
“I was just overwhelmed when I saw it.
“At no point did anyone explain that his disease was progressing and this was normal. We felt completely adrift.
“I felt such guilt about the DNR. I didn’t want to distress our sons so I didn’t tell them, I felt so alone.
“Alan died about eight days after he came home. I thought to myself, if I had tried to lift the DNR would he have lived?”
Mrs Brown, who has two adult sons, added: “I also questioned the hospital after he’d died. They told me Alan signed the DNR and had capacity to.
“But from the texts he was sending me in hospital I doubt he would have understood what was going on. Even if this was the case, why did no one think to call and let me know?”
“He was denied the chance to make a plan and have a good death, and I was completely unprepared.
“I had no idea how to care for a dying man at home. It was horrific and I have had sleepless nights and nightmares ever since. It will be with me forever.
“It felt like a decision was taken away from him; that a bit of his liberty was taken away. I don’t think he had capacity to make the decision anyway, but it should have at least involved me, his family.”
She said that training was needed and added: “There is no excuse – if you are making this decision for a patient you must involve them and their family.
“It should not be a shock like it was for me, turning up out of the blue as I was coming to terms with the fact my husband was terminally ill.”