A woman only discovered that a do not resuscitate order had been put on her husband by accident after finding documents left on her sofa by a health worker.
Sonya Brown said she made the grim discovery “by chance” and that the decision to put a do not attempt cardiopulmonary resuscitation (DNACPR) order had not been discussed with family members.
The 51-year-old has described how 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-19 pandemic about DNACPR orders.
The report, published by Compassion in Dying, calls for better end-of-life care going forward.
Mrs Brown, from Lanarkshire, described how her late husband Alan was diagnosed with lung cancer in October 2019.
Mrs Brown, an advice line worker, said: “I discovered my husband Alan had a do not resuscitate notice by chance.”
Mr Brown was admitted to hospital in March 2020 with severe breathlessness. He was sent home after several days in hospital.
“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?”
She added: “What I don’t understand is why no one thought to phone me and talk to me about it, particularly when I couldn’t be with him in hospital because of lockdown.
“Normally I would have been a constant presence, only leaving for mealtimes – I would have been there to be able to ask. You’d think someone would have gone out of their way to tell me because I wasn’t there.”
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?”
Mrs Brown added: “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: “It’s all about communication; that is what needs to change. I know it can’t be an easy conversation to have, but that’s why people need training.
“I work on the benefits line for my local CAB and I am trained to deal with challenging conversations so I would have assumed that healthcare professionals would have an element of training on how to deal with things like this.
“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.”
Mrs Brown added: “I rang Compassion in Dying to try and understand what the DNR really meant. I now understand the rationale for one being in place. I can understand that Alan was dying and CPR would not have saved him. I don’t feel guilty any more.”