A new report from the charity Compassion in Dying lays bare how some people found out they had a do not attempt cardiopulmonary resuscitation (DNACPR) order – also sometimes referred to as DNR orders – in place by accident.
One person described finding the documentation in a suitcase after returning home from a stint in hospital.
Another only discovered her husband had the order in place when a health worker left documents on her sofa.
And a grieving daughter only found out a DNACPR had been placed on her mother hours before her death.
The report, shared with the PA news agency, has been published to coincide with a report from the health watchdog, the Care Quality Commission on DNACPRs during the early part of the pandemic.
Their report highlights how many people died without their loved ones by their side and without the opportunity to be involved with decisions about their own care and treatment.
Compassion in Dying said that it received a sharp rise in calls about DNACPRs last year.
The charity said that the overwhelming majority of people wanted to find out how they could refuse CPR and make documented plans on how they wanted end of life care to be.
But it also received “concerning reports” of blanket DNACPRs being applied to groups of people with “poor communication”.
The authors said that these examples highlighted existing problems of a “lack of clarity” on DNACPRs and “insensitive communication” by health workers.
But the charity added that these issues have been reported since “long before the pandemic started”.
But while medics were working under immense strain during the crisis, the “problems of variation in interpreting the law and of poor communication have been exacerbated”, the authors wrote.
They said that poor communication and failure to listen to patients and their loved ones causes “distress”.
Often this distress was not caused by the decision to withhold CPR, but how the decision was communicated, they added.
The report highlights examples of people discovering that they or their loved ones had been placed under such orders.
One patient told the charity: “I was an inpatient at my local hospital for three weeks. I had been suffering from delirium and sepsis.
“When I returned home from hospital my wife found a DNR form in my suitcase.
“This had not been discussed with me or my family at any time during my stay. My wife was so shocked that she vomited on the carpet and could not stop crying.”
Another described how she was called and told her mother who had Covid-19 had two or three hours to live.
“When I checked with a nurse, she advised me that mum was DNR.
“I was completely shocked as it had not even been discussed with us.
“Mum died later that day. I think it is disgusting that doctors can make these decisions without discussing or even informing patients and their families.”
The authors said that unlawful decisions and poor medical practice were “not uncommon”.
They added: “In some instances, DNACPR decisions have been made unlawfully in a blanket or discriminatory way.”
The report concludes: “Covid-19 has shone a light on end-of-life planning, treatment and care.
“Too many people have been left feeling ignored and unable to have their voice heard and their wishes respected.
“As we begin to emerge from this pandemic, our legacy must be to improve people’s experience at the end of their lives.”
Compassion in Dying said that queries to its helpline about DNACPRs almost doubled from 2019 to 2020.
This included a significant increase in people seeking support to refuse CPR should they become seriously ill with Covid-19 or other illnesses in future, the charity said.
Usha Grieve, director of partnerships and services at Compassion in Dying, said: “The experiences of the people we have supported in recent years and during the pandemic demonstrate clearly the value of DNR decisions when they are made appropriately and communicated sensitively, and the devastation caused when they are not.
“Covid-19 has highlighted and worsened longstanding problems with DNR decision-making and communication, which have proliferated under the intense pressure felt by healthcare professionals and services, and a lack of clear, national guidance when it was most needed.”