Patients and families are not always told about DNACPR decisions
The most frequently upheld element of complaints to us about DNACPR notices involved conversations not happening or families not being informed. The case below shows this in practice. It also demonstrates breakdown of communication between settings and highlights the levels of distress this causes to everyone involved.
Case study 1: Patient and family not consulted
Ms H was in her eighties. In October 2016, she was taken to hospital, treated for a mini stroke and then sent to her local hospital. Her condition got worse in hospital and she sadly died shortly after. In April 2019, Ms H’s sister, Ms R, became aware of the DNACPR decision that had been put on her sister’s record. The record highlighted that Ms H was not consulted about the DNACPR decision as it suggested she did not have capacity at that time. In this situation, Ms R should have been informed about the decision and had not been.
We did not find enough evidence that Ms H lacked capacity to make the DNACPR decision. There was no reason why the Trust could not have discussed the decision with Ms H and Ms R. Due to a breakdown of communication between the two hospitals where Ms H received care, the Trust had started CPR on her despite a DNACPR decision being in place, which led to inappropriate resuscitation efforts happening. This was a failing. It caused Ms R to experience post-traumatic stress disorder (PTSD) and depression, and she needed ongoing therapy to process what happened.
Respondents to our survey with doctors suggested there is room for improvement in the way that DNACPR decisions are communicated. Just under half (46%) said there was good communication most of the time, with 43% saying some of the time. Just 5% said there was always good communication. But 95% said they were confident having discussions with patients, families, carers and advocates about DNACPR decisions.
Palliative medicine and geriatric medicine are two specialties where good communication about DNACPR decisions is particularly important. But the most common response within these specialties was that good communication takes place some of the time (62% for palliative medicine and 46% for geriatric medicine).
Research with older people and people with learning disabilities highlighted the importance, to patients from these groups and their families, of conversations about end-of-life care. Two-sided, respectful, empathetic communication enables care to be patient-focused and gives everyone involved the chance to offer their perspective. When this does not happen, patients feel their role in their own care is disregarded, as can be seen in the case studies throughout this report.
“I was told that continuing to treat me at this stage was bonkers and that I’d had quite a lot of money spent on me already.”
Compassion in Dying research, page 7
This is clearly extremely disrespectful and inappropriate. It also changes the quality of care that can otherwise be provided when both patient and doctor are on the same page.
Our evidence base suggests these concerns are worsened for people with learning disabilities and older people, due to fears around respect for individual autonomy in DNACPR conversations and decision-making processes. Contributors to research conducted by BIHR stressed that “decisions should be based on the individual’s wishes rather than assumptions-made based on disabilities or health conditions” (BIHR, page 17).
“I think it [the reason for a DNACPR] is unfair based on learning disability alone. Going through the work I do regularly and the campaigning group as well, this always gets brought up as being wrong on so many different levels, because doctors don’t consult with parents. Parents are then on the back foot and have to fight. The process is so bad, it really is.”
BIHR, page 20
“The only thing I own, I will ever own, is my life, and I want to decide about it. I don’t want people to make outside decisions on if I have value, of course I have value, but that value is intrinsic to me. I must be allowed to make these decisions.”
Compassion in Dying research, page 8
Insensitive communication and barriers to good communication
As well as not communicating at all, we found substantial evidence around insensitive or uncaring communication.
Doctors told us that they had great empathy for patients and their families. But our evidence suggests that when time and clinical pressures meet to such an extent as in the COVID-19 pandemic, some patients are left to feel they are not a priority.
For end-of-life conversations, this can make patients feel that their life does not have value. We found that this can compound feelings of discrimination and unfair treatment. It can also cause distress for doctors.
Specific to the pandemic, doctors and nurses told us about the consequences of visitation restrictions on families' understanding of their relative’s health and the effect this had on end-of-life conversations.
“The challenge with the pandemic is that things were often done at a distance and remote. Communication would mainly be telephonic/zoom calls, etc. People were able to have sensitive DNACPR conversations over the phone but there is something about being in hospital, seeing a loved one deteriorate and understand the clinical reasoning behind why a clinical decision is made and being able to ask more.”
Survey response of doctor working in general (internal) medicine and geriatric medicine
“Communication problems were highlighted as a big issue for everyone we spoke to. This includes instances where sensitive DNACPR discussions are held over the phone, which is seen as inadequate for such an important and sensitive subject, or no discussion is held at all.”
BIHR, page 26
Healthcare professionals have told us that for some people, especially those living in care or residential homes, their relatives may not have seen them physically for months. This meant that no matter how sensitive the doctor was in having an end-of-life conversation, families were more likely to be shocked, even in those cases when they had been kept informed of their relative’s condition.
Positive experiences
Where people had had positive experiences of end-of-life conversations, Compassion in Dying’s research suggested the important elements of a good conversation were:
- doctors ‘owned’ the DNACPR decision
- doctors explained why they had made that decision for that person, why CPR would do more harm than good, and what care and treatment the person would continue to receive
- doctors explained that, while consent was not needed for the decision, they wanted to establish a shared understanding of how the person would be cared for
- people were invited to ask questions
- doctors spoke with pragmatism and honesty
- doctors showed sensitivity and spoke with warmth and respect (Compassion in Dying, page 16).