Recommendations
If you build a system to support the most underrepresented and underserved, it should serve everyone better. That is the basis for these recommendations. Changes made with the most affected groups at the heart of thinking should make end-of-life care work better for all.
These recommendations are a single package to improve the process surrounding DNACPRs. We have grouped them into four themes: training, regulation, communication and record-keeping.
Training
We recommend that:
- All CPR training for all doctors and nurses should include scenario-based training on DNACPR (aimed at all NHS-funded providers). This part of the training should be co-designed with older people and disabled people.
This recommendation is aimed at:
- existing clinician training
- Royal Colleges
- universities (via Council of Deans of Health)
- NHS Employers
- Resus Council annual CPR training and universities as external CPR providers for some NHS trusts.
The training should have clear learning outcomes, covering:
- the legal requirement to communicate a DNACPR decision to the person (or someone close to them if they lack capacity to engage in a conversation about DNACPR) unless it is likely to cause the person harm
- communicating the decision using a human rights-led approach
- what is meant by appropriate documentation of DNACPR conversations and decisions, including what is expected on the form and why accountability matters
- examples of good practice conversations, including the importance of empathy in conversations and de-escalation
- what to include in a DNACPR conversation (an example of this is outlined on page 20 in Compassion in Dying’s recommendations)
- what cannot be included in a DNACPR conversation
- clear signposting to existing guidance on DNACPRs and working with patients with specific needs
- using accessible materials to support discussion
- when to include advocacy services and other trained staff to support conversations, and where to find them.
The CQC has previously recommended national implementation of the ReSPECT form in advance care conversations (CQC, ‘Protect, respect, connect’). If this were to happen, we recommend that training on ReSPECT should be brought into any training on DNACPR conversations.
We recommend that training needs are built into pre-existing training to make sure all necessary healthcare staff are covered.
Training all doctors and nurses also covers redeployment of staff in national crises. It could also help to reduce complaints about health settings where staff have been moved away from their areas of specialism in any future national crises.
There is a gap in existing training around learning disability and autism, in terms of learning outcomes. We were unable to find evidence of any learning outcomes attached to NHS England’s Core Competency Frameworks for doctors on learning disability and autism. This means no training related to learning disability and autism has learning outcomes at present. This needs to be addressed urgently.
Government and our health service need to recognise that when national crises happen, disabled people and older people may be more affected than others by restrictions in communication, access to existing support and contact with doctors. For future national crises, proactive action needs to be taken to support the requirements of the most underserved groups as in Article 11 of the Convention on the Rights of Persons with Disabilities (CRPD).
If this training is co-designed and delivered by people with learning disabilities and older people, it would be a positive step towards including people using the NHS in service improvements. Royal Colleges, universities, ICBs and Foundation Trusts should work with local, experienced, member-led organisations to commission them and people they work with to co-design this training alongside doctors.
Communication
We recommend that:
- ICBs should make sure that accessible communication materials, which meet the needs of their population, can be accessed through health settings to support patients, families and carers when having DNACPR conversations.
- The Royal College of GPs, the Royal College of Physicians and the Royal College of Nursing should develop guidance for GPs, physicians and nurses working in acute care, to promote earlier conversations with patients, families and carers about wishes at the end of life and about advance care planning.
- NHS England and ICBs should expand the number and type of staff who can formally support DNACPR conversations in multiple settings. This should include nursing staff, acute liaison nurses, local advocacy services and learning disability nurses. NHS England and ICBs should also recognise the importance of families and carers in supporting these conversations.
Accessible communication materials are not available as standard to support advance care or DNACPR conversations. This is a particular concern in acute settings where people may be less able to access support staff or staff trained to support advance care planning.
These resources should be commissioned or designed by ICBs (with local experts and organisations) as the institution responsible for equitable access to healthcare in their local area. During the design process, different materials should be considered for advance conversations and for conversations in emergency settings.
Any communication materials produced need to outline people’s rights clearly and legally, including:
- consultation
- laws relating to mental capacity
- the clinical, but non-legally binding, nature of the DNACPR decision and how to challenge this.
There is existing best practice in this space, including a recent research study on the use of ReSPECT forms to support end-of-life conversations with people with learning disabilities, as well as information from Compassion in Dying and other member-led organisations. Where these resources already exist and are relevant, they could be commissioned directly.
Settings for conversations
We recognise that a lack of time in the NHS is not easy to resolve, so we are not recommending one specific pathway for these conversations to take place. There is additional risk in recommending a setting based on age or other factors, such as entry into care homes or health MOTs, which could unintentionally reinforce damaging stereotypes, as explored in the report.
Instead, we recommend that the settings for these conversations are expanded formally, included in guidance and regulated.
Below are several recommended pathways. These are not exclusive, and any final decisions on formal pathways should be determined by NHS England in consultation with ICBs, Royal Colleges and member-led organisations.
- GP practices. Conversations should be proactively suggested by GPs. GPs should be open to end-of-life conversations requested by their patients and record them accordingly.
- Annual health checks. Annual health checks take place each year for people with learning disabilities. They are designed to give people dedicated time with their doctor to discuss their health, and for doctors to provide individual support and have a chance to spot underlying issues quicker. At present, there should be 320,000 people a year having annual health checks in England. The NHS England template for annual health checks includes end-of-life conversations, but there is currently no way to investigate how many of these are taking place. This pathway allows people to have the appropriate support of a family member or advocate present, and for people to be proactively given accessible communications and time to think about their wishes.
- Acute liaison nurses. We recognise acute liaison nurses’ roles in care as a golden thread holding several of these recommendations together. But they are not available in every hospital setting and, as yet, there is no standard practice. Increased resourcing for these staff would support better outcomes for people with learning disabilities in acute settings.
Staff to support conversations
As in our recommendation on training, we are recommending that the number of staff who formally support end-of-life conversations should increase.
Learning from the COVID-19 pandemic, any advocacy support that is offered should follow patients through the end-of-life process. This did not happen in the last national crisis, which allowed patients to reach the end of their life without doctors understanding their needs.
Doctors should still be responsible for the clinical decision over DNACPRs, but this should always be made in conversation with the patient (and, where necessary, family members and carers) in line with current laws and guidance.
Regulation
We recommend that:
- The CQC should update cross-sector guidance underpinning regulations to include planning for health inequalities in end-of-life care.
- The CQC should make sure that assessment of providers’ compliance with standards of good practice around DNACPR is strengthened in its regulation of all services, with a particular focus on improvement in secondary care services.
As the CQC is currently looking at its guidance covering regulations, there is an opportunity to make sure the guidance considers the evidence we have seen of health inequalities in end-of-life care. Examples include providing accessible information before end-of-life conversations and regulating annual health checks for people with learning disabilities.
At present, inspections of GP practices ask whether annual health checks are completed. But they do not assess the value of these checks for patients or look at whether the template for annual health checks has been followed. The annual health check template includes end-of-life conversations, but it is not possible to determine how many of these conversations are taking place or their quality.
Record-keeping
We recommend that:
- NHS England should make sure, for advance care planning conversations, the primary care electronic patient record (EPR) is the single place for holding end-of-life care plans and DNACPR records. This should feed into the multidisciplinary shared care record and be accessible across all health settings. This needs to enable immediate digital access across all NHS provider organisations for healthcare staff and patients. Improving the interoperability of patient records would have far-ranging benefits beyond end-of-life care planning and achieving a single shared care record should be the ambition as soon as is practically possible.
- NHS England, ICBs and trusts should make sure DNACPR decision-making tools include clear guidance on legal duties for doctors.
- NHS England and healthcare providers should make sure there is more space to document conversations and decisions on DNACPR decision-making forms.
A joined-up approach
A lack of record-sharing between care settings has been raised consistently through our research and the work of others.
A single access point for DNACPR records to be available digitally by all healthcare providers would reduce duplication of DNACPR conversations. An example of this approach has been introduced by Universal Care Plan for London.
A potential pre-existing option for allowing patients to access their records would be to use the NHS app to store DNACPR decisions, as is being taken forward by the ‘Mobile First’ approach. This could follow the documentation of other decisions in the app, such as organ donation. If followed, owing to accessibility requirements, the NHS app should not be the only place this decision is held. Like organ donation, it should be one of the spaces accessible to both the patient and the healthcare system.
We are aware that care plans are available digitally in almost half of ICSs nationally, but the geographical inequity of this approach and variation of maturity of these systems still needs to be addressed. Due to a lack of standardisation in digital systems, there is inconsistency in how DNACPRs are flagged on a patient’s record. Where care plans are available digitally there is also variation in take-up by doctors because this approach has not been embedded in their workflow. Where digital care planning is available, we recommend that ICSs include this in DNACPR and end-of-life conversation training.
NHS health and social care passports are another mechanism that currently exists to improve and simplify the healthcare experience of patients with learning disabilities. The passports hold important information to make sure patients get the right care and receive appropriate communications. Health passports are widely used and understood by patients with learning disabilities and their families. NHS England is currently developing national guidance on the content and use of passports. It should consider DNACPR decisions as part of this review.
This recommendation is not new and was called for by the CQC in 2021. The evidence suggests that the issue around DNACPR documentation still exists, so we urge action in this area.
Changing the current DNACPR form
Doctors told us there is very little room on DNACPR forms to give more context for DNACPR decisions. This risks the reasons for DNACPR decisions and details of conversations with patients and families being documented poorly.
The lack of space can create a reductive approach to understanding people’s needs and to accountability. Giving doctors space to only write a few words could give the impression that documenting a complex decision is unimportant. The reasons given for the DNACPR and notes from conversations are particularly important to a review of cases by the Ombudsman, but the lack of space on the form itself gives little room for accountability around decisions.
As well as increasing space, there is an opportunity to use the DNACPR form to clarify legal duties for doctors to consult patients, families and carers. Doctors have asked for more clarity on the legal framework behind DNACPRs. Rather than relying only on training to deliver this information, we recommend changes to all DNACPR forms to include legal duties to consult. Precedent exists for this in death certification.
Overarching recommendation
We call for all outstanding recommendations in CQC’s ‘Protect, respect, connect – decisions about living and dying well during COVID-19’ to be implemented.