There are issues with record-keeping and documenting decisions
While a DNACPR decision should be logged on patient records, this is not accessible across the health and social care system and there are often problems with advance decisions being logged, updated and respected.
We found repeated evidence of DNACPR decisions not being recorded or shared properly between settings. This particularly affected people who had made advance care decisions with their GP or another healthcare professional. The lack of a joined-up digital system is causing painful, repeated conversations and frustration. Our research showed that in some instances people were going to extreme lengths to have their wishes listened to, such as wearing DNACPR jewellery and always carrying their form with them.
“My husband had a DNR. When he became unconscious, the doctor told me that they were going to do something to bring him back. And I said, but he signed a DNR, don’t do this, and they made me feel like a murderer. But I wouldn’t allow them to do it, he was dying of cancer anyway; we knew he was dying and he died calmly within forty-eight hours. But they really did make me feel like a murderer, like a wicked woman. It took me a long time to recover from how awful they made me feel.”
Compassion in Dying research, page 12
This was also reflected for people with learning disabilities. There is a need to “build on the electronic system's capacity to flag DNACPR preferences, diminishing the reliance on physical documents such as the yellow envelope, which can be difficult to locate, particularly during times of heightened stress” (BIHR, page 24).
There are inconsistencies between trusts in how patients with learning disabilities are identified and how DNACPR decisions are monitored. NHS England developed the learning disability improvement standards in 2018 to help trusts measure the quality of care they give to people with learning disabilities, autism or both. Alongside this, the NHS Benchmarking Network was commissioned to collect annual data to understand compliance with the standards. While it is not mandatory, over 90% of NHS trusts have taken part. HSSIB recently recommended continuing the benchmarking survey to make sure local population needs are met (HSSIB, ‘Investigation report: caring for adults with a learning disability in acute hospitals’).
In the most recent benchmarking report, 54% of trusts surveyed did not monitor rates of DNACPR decisions for people with learning disabilities. This was highlighted as an area to improve.
Enabling better record-keeping was a common theme among all groups we heard from, including doctors:
“There needs to be a form that is accessible by all healthcare providers (would need to be electronic) and patient or NoK [next of kin], this would prevent discussions being unnecessarily repeated and encourage explicit descriptions of discussions held and clinical reasoning behind such discussion. This central form could then be reproduced in physical notes if needed.”
Survey response of doctor with dual specialty
“When DNACPR conversations have taken place with a person these decisions do not follow the person from care setting to care setting, subjecting the person to repeated conversations, bureaucracy and disjointed care.”
Survey response of doctor working in palliative medicine
“The form either needs to be carried with patient or be electronic with access to all health care.”
Survey response of doctor working in general practice
For people with learning disabilities, there is also no national shared system for storing and managing information about their needs, including the reasonable adjustments needed for each individual, as noted in HSSIB’s report.
Even where a person’s medical record is updated with a DNACPR decision, this will not be accessible in care homes or ambulance services, which are common points of implementation. Findings from our casework and research reports, which show DNACPR notices not being seen and adhered to, highlight that any system needs to be accessible across these services as well as in hospitals and GP practices.
There is concern that any work to move conversations from urgent care to advance care planning will be ineffective if conversations are not recorded in a functional, accessible system that doctors can regularly update and check. The MOG and 2021 CQC report recognised this and recommended a single digital system (Department of Health and Social Care, ‘17 May Summary note of meeting’, but this is yet to happen and progress is unknown.
In the following case, a patient’s record was not updated properly, so previous information was not taken into account.
Case study 6: DNACPR decision not updated
In January 2021, Mr A was admitted to hospital with abdominal swelling and distension (bloating). Mr A had multiple health conditions. Doctors diagnosed him with a bowel perforation (hole) and found a saddle pulmonary embolism. This is when a large blood clot sits on top of the main pulmonary artery between the lungs. Doctors decided to treat this with blood-thinning medication and Mr A was discharged. He was readmitted six days later and sadly collapsed and died in hospital shortly after.
After Mr A had collapsed, a DNACPR form had been completed and recorded that doctors had spoken with Mr A’s partner about the decision. But we found this was based on a previous discussion and had not been properly reflected in the documentation. While we found the DNACPR put in place was clinically made within the relevant guidelines, the Trust failed to correctly document the communication it had had with Mr A’s partner about this decision, causing her to lose faith in the Trust.
There is not enough space on forms to record conversations accurately
We found there is not enough space on every DNACPR form to accurately and precisely record DNACPR conversations and their outcomes.
70% of doctors who completed our survey thought the current DNACPR form was fit for purpose. But doctors working across different specialisms told us there was not enough space to accurately summarise the complexities of DNACPRs conversations. There is no standard DNACPR form, so this will not be the case for all trusts. Some trusts ask doctors to fill in a separate sheet to document the conversation and attach it to the patient’s notes.
“No form can deal with the complexity of the issues which can be involved so can only be an adjunct to care. Current forms are a tick box exercise. Simplify them and allow back-up discussion to be recorded in the notes. The form should be seen as similar to operative consent and use that model.”
Survey response of doctor working in acute internal medicine
“There is not enough space on the form to write much detail about the conversations that happen, the clinical conditions that lead to the DNACPR decision or much free text space.”
Survey response of doctor working in general practice
This lack of space particularly affects patients who have complex health conditions. It pushes doctors to decrease the complexity of the information so that it can fit on the form. There should be a standard approach to allow for transparency and consistency.