Key points
- Collaboration between clinical commissioning groups, health and social care providers and patient representative bodies increased during the pandemic. Local areas that had established infrastructures and governance processes worked together better to manage the challenges created by the pandemic.
- While increased collaboration had generally strengthened approaches to advance care planning, end of life care and DNACPR decisions, there were mixed views about how effective this was.
- The types of advance care planning in use, including ReSPECT, local treatment escalation plans and DNACPR decisions, varied between services and across geographical boundaries, creating challenges for clinicians, professionals and workers, and impacting on the quality of care for individuals.
- The pandemic accelerated the use of digital technology. While it improved access for many, it created challenges for some people in some equality groups.
The aim of our review was to look at how DNACPR decisions were made, in the context of advance care planning, across all types of health and care services including care homes, primary care and hospitals.
To do this we looked at seven clinical commissioning group (CCG) areas and how the CCGs, health and social care providers and patient representative bodies in these areas worked together as a ‘system’.
Usually, these organisations work together to ensure that health and social care provided in their area meets the needs of their local populations. During the pandemic, they found themselves in an unprecedented situation. It tested how well they were able to work in partnership, including how well they collaborated to make decisions and provide guidance around DNACPR decisions and advance care planning more widely.
How well systems worked together and communicated
Generally, we found that collaboration between organisations had increased during the pandemic. Areas that already had infrastructure and governance processes in place were better able to work together to manage the overall challenges created by the pandemic. However we found that, before the pandemic, systems had underdeveloped strategies for advance care planning and end of life care.
Some areas had existing groups, boards and forums in place, such as ethics committees, to support sound decision making. Other areas had created new groups or changed the purpose of other groups to focus on end of life care, including reviewing and sharing guidance. For example, in one area we were told that the end of life board was transformed into an operational group at the start of the pandemic to help advise on end of life care planning for the whole of the region. Set up by the local Health and Wellbeing Board, the board was originally part of a project called ‘Live and Die Well’, which brought end of life professionals from across the area together to discuss processes and best practice.
Some systems had specifically recognised that communication with the adult social care sector needed to improve, and had taken action to do this. For example, one area we looked at had set up a ‘care provider cell’ to support local providers, which focused on making information accessible to care providers.
There were mixed views of how successful the increased collaboration had been in strengthening approaches to advance care planning, end of life care and DNACPR decisions during the pandemic.
Time pressures, increased numbers of meetings, lack of opportunity to meet face to face, and complicated and confusing governance routes were all described as influencing factors. A Healthwatch representative in one area told us they hadn’t been invited to key meetings for three months, which had an impact on their ability to raise the voice of people who use services.
How well system partners communicated with their local populations also varied. We were concerned there did not appear to be many system-wide engagement strategies to foster trust and confidence with the public. Many of the system partners we spoke with said there were no strategies for raising awareness about DNACPR decision making or were not aware of them.
Some people, including members of our expert advisory group, felt that public messages about DNACPR decisions should be provided on a national level.
Guidance around DNACPR decisions
At times of immense pressure like the pandemic, it is vital that any communication and guidance to health and care services is well considered and clear, and there are robust arrangements in place to manage how it’s sent out, understood and implemented.
Every area we reviewed had taken steps to make sure that services were aware of the importance of taking a person-centred approach to DNACPR decisions and advance care planning. This included, in a number of areas, the issuing of guidance. We also heard about forums being set up to share learning and ensure consistent practice, as well as a general sense of heightened awareness around the importance of personalised approaches to DNACPR decisions.
For example, in one area we found an end of life care group that had been in place since before the pandemic and included colleagues from the local hospice, hospitals, community and CCG. During the pandemic, the group discussed the national guidance issued, including around DNACPR decisions. A particular focus was how they would support community patients and people who didn’t want to go to hospitals.
However, we identified a number of challenges that had an impact on the DNACPR process. For example, we consistently heard that, at the start of the pandemic, providers had to cope with a huge amount of guidance about all aspects of the pandemic that lacked clarity and changed rapidly, leading to confusion. The number of meetings and governance routes could also cause confusion. This could have put people at risk of inappropriate or blanket DNACPR decisions being made. We also heard about some difficulties for ambulance services, where guidance on when to take people into hospital or not was rapidly changing, although this may not have related directly to DNACPR decisions.
End of life care strategies
An end of life strategy aims to promote high-quality care for people at the end of their life by providing them with more choice about where they would like to live and die, and the care and treatment they would like to receive. It is important to have a coherent, joined-up strategy and approach to ensure the equal provision of care for all people at the end of life, and their families and carers.
Local health and care systems should have a strategy to ensure that there are clear guidelines and frameworks in place to guide decision making and that outcomes for people are monitored effectively. It also helps to ensure that information and guidance is shared in a consistent way across a local area.
The areas we looked at were at different stages with their end of life care strategies. Most had underdeveloped strategies for end of life care, advanced care planning and DNACPR decisions. One had no strategy at all. This meant that frameworks weren’t always well embedded or applied consistently. It was also sometimes unclear how advance care planning, end of life care and DNACPR decisions would translate into action.
Where we found end of life strategies had been embedded, these were often supported by a framework, such as the Gold Standards Framework (a model that enables good practice to be available to all people nearing the end of their lives, irrespective of diagnosis). Where strategies and frameworks were not embedded, we found inconsistent approaches contributed to less positive outcomes for people.
Lack of consistency and geographical barriers
Different approaches and models of advance care planning, including ReSPECT, local treatment escalation plans and DNACPR decisions, were in place in all the areas we looked at. The type of model used varied both between services and across geographical boundaries.
Not only do these models use varying approaches, but they also use different types of forms and documentation. This lack of consistent approach created challenges for clinicians, professionals and workers, such as when moving between services. We found that it was a particular issue for ambulance staff who sometimes had to be aware of multiple different models and know which was in use depending on which local health authority area they were in. Generally, we found that where there were two or more approaches in place in a local area, there were more difficulties than in areas where all providers used the same methodology, regardless of which model this was.
Where a model was working well, it was not always rolled out across the local area. For example, one area could demonstrate that the advance care planning model in use across the area was having a positive impact for people, but this had only been embedded in some services. This meant that there may have been missed opportunities to support the whole local population more effectively, which may have been achieved if an agreed strategy had been put in place.
Where different models were in use, we sometimes found that when people were moved between hospitals and care homes (or vice versa), forms had to be converted to match the model in place at the service. For example, ReSPECT forms were sometimes converted into Treatment Escalation And Limitations (TEAL) forms or DNACPR forms. Models such as the ReSPECT form take a longer period of time to complete as they are based on a holistic conversation with the person. While these decisions may cause no harm to the person, there would be additional work created for clinicians, professionals and workers in re-doing the documentation into different formats.
These factors could all potentially impact on the quality of care received by the person, their carer, family or advocate, and result in missed opportunities for support in the right way at the right time by the right person. Furthermore, it leads to the potential for mistakes due to the lack of consistency and the barriers that have been experienced interpreting information. It created additional work for clinicians, professionals and workers, already in an extremely busy environment, giving rise to the potential for forms not to be completed accurately or comprehensively, placing the person at risk of unsafe care or treatment or neglect and harm.
Remote consultation and the use of digital technology
The pandemic has accelerated the use of digital technology and has changed the way in which CCGs, providers and representative bodies communicate with people, carers, family and advocates. Across all areas we looked at, while acknowledging the need for an increased use of technology, people we spoke with stressed the continued need for face-to-face contact if they were going to be truly inclusive and person centred.
Digital solutions and remote consultation (which includes telephone conversations) had increased across the areas we looked at, born out of necessity but embraced and appreciated by many. Digital solutions were most commonly used by GPs, community teams and care homes. For people living in care homes, we heard how doctors had carried out digital ward rounds and remote consultations.
“Digital platforms and remote consultations had been an enabler in many ways. For example, it had enabled relatives to be involved in multidisciplinary team discussions, which offered a more personalised approach, which they are not sure would have happened prior to COVID. It has supported the multidisciplinary team to adopt a person-centred approach and work together as a team to support the individual not just DNACPR and gave an indication re ceiling of treatment and preferred place of care. This made for a more efficient and system-wide approach.”
Some of the benefits of the digital technology were described as:
- being able to access appointments safely that people may not have been able to attend otherwise
- being able to easily include carers and family members
- benefits for people with physical disabilities
- not needing to wear a mask.
However, digital technology was not always accessible to everyone. For example, older people or those with a cognitive or hearing impairment may have found it more challenging to have these conversations on a screen.
This was supported by the findings of our COVID-19 inpatient survey. Three-quarters of respondents said that they were able to keep in touch with friends in family, for example by phone, mobile messaging or video calls. But older patients and those with a sensory impairment, including people who were blind or deaf, as well as people with a learning disability, a mental health condition or neurological condition were less likely to feel they were able to keep in touch ‘often’.
This shows that digital technology is not accessible to all and some people may not be able to fully engage in conversations and have an equal relationship in their care. This may mean that their personal needs and choices are not met and they may face inequalities in care and treatment.
There were also logistical challenges as not everyone had access to digital technology. Some local areas had made investments to overcome these challenges. For example, we heard how one provider had proactively reviewed their processes and purchased additional mobile phones and tablet computers to help clinicians, professionals and workers to communicate with families and also help people remain in touch with loved ones during their stay. However, one Healthwatch representative told us that, “There are relatives still describing those issues, so pretty sure there are still gaps.”
Some clinicians, professionals and workers did not feel equipped or confident to have conversations remotely and we heard some accounts of when DNAPCRs had been put in place remotely without consulting with the person. One member of staff told us they would attempt this conversation with a person they knew well, but they wouldn’t with others. This undermines the process of personalised models of advance care planning and DNACPR decisions. Not feeling able or confident to have these conversations remotely presents the risk that they will not take place, or they will be of a lesser quality.
Increasingly, local health and care systems are using technology that is joined up across their local area. We heard about different examples in different parts of England. However, some healthcare professionals, particularly those that work in the community, told us about the challenges of different advance care planning documentation and the effect it had if it could not be put into the electronic patient record system.
Next page
Conclusion and recommendations
