DNACPR conversations are often left to family members as patient’s wishes have not been discussed before it is too late
“I accepted, on behalf of my husband, that he wasn’t going to survive. I just hope I made the right decision, because that was a big responsibility.”
Compassion in Dying research, page 9
Families generally did not want responsibility for deciding whether their relative should have a DNACPR notice and preferred this to be a clinical decision. One person said they felt like ‘a murderer’, making decisions that have haunted them. This finding also emerged from our conversations with nurses and a research study carried out with families who discussed a DNACPR on behalf of a relative during the COVID-19 pandemic (Tomkow et al, 2023).
People emphasised that they do want their families to be involved. But they want this to happen earlier in the process as a support to their decision-making, rather than their family members making the final decision.
“If I was in a condition where I couldn’t make my own decisions, I would want my partner to be allowed to help make the decision as well as my father.”
BIHR, page 1
The BIHR report (page 8) says doctors should: “Always involve individuals’ families and loved ones in DNACPR decisions to aid understanding and provide emotional support to the individual. But also respect when a person with learning disabilities does not want other people involved; it should be their choice.”
This relates to the spike in complaints we received from families during the COVID-19 pandemic when they were not able to advocate for their loved ones or felt unable to navigate the health system with them.
Case study 4: Clinical DNACPR decision not communicated to family member
Mrs F’s husband, Mr F, fell at home in June 2020 and needed hospital treatment. Because Mr F had dementia, Mrs F had a power of attorney for health and welfare, which meant she should be involved in discussions around his treatment and care.
The doctors treating Mr F made a DNACPR decision for him. Records show doctors intended to discuss this with Mrs F, but she was never told about the decision. Sadly, Mr F died while he was in hospital.
We found no failing in the clinical reasoning of the DNACPR decision, but we found a failing when doctors did not communicate their decision with Mrs F.
Due to visitation restrictions in place at the time, Mrs F was unable to be with her husband for some of his time in hospital. This made it even more important that she understood what decisions doctors were making and why.
This event had lasting and profound effects on Mrs F, which could have been lessened had the Trust fully explained the DNACPR and the reasons for it.
Case study 5: Family member made aware of DNACPR in coroner’s information
Mr F’s wife, Mrs F, was taken to hospital in May 2021 as she had fractured her hip and needed surgery. Unfortunately, Mrs F died from a heart attack shortly after surgery.
Mr F held a power of attorney for health and welfare for Mrs F. He was unaware that doctors had made a DNACPR decision following his wife’s admission to hospital. He only became aware when the coroner sent information to him around six weeks later. Mrs F’s records said that Mr F had agreed to the surgery and the DNACPR decision.
While we did not find a failing in the clinical decision to apply a DNACPR, we did find the Trust failed to communicate with Mr F about this. Finding out this information was devastating for Mr F and had a lasting impact on him.