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Review of Do Not Attempt Cardiopulmonary Resuscitation decisions during the coronavirus (COVID-19) pandemic: our methodology
We were commissioned by the Department for Health and Social Care, under section 48 of the Health and Social Care Act 2008, to conduct a special review of Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions taken during the COVID-19 pandemic.
In our review, we are exploring the use of DNACPRs as part of advance care planning during the pandemic. Our review will understand to what extent these best addressed the care and support needs of people, including those most at risk of neglect and discrimination, and protected their human rights. It will inform national learning and improvement, and support good practice development. The final report will publish in early 2021.
The settings that are within the scope of the review are hospitals, community health services, ambulances, primary care (excluding dental care), and adult social care including supported living schemes.
We published an interim report in December 2020 that set out our progress so far and our expectations around DNACPR.
We are using the following methods.
Review of literature and guidance
A review of the literature, guidance and evidence to understand what is already known about the use of DNACPR before the pandemic and what impact the use of DNACPR has had on people’s experiences since the pandemic. This includes understanding best practice in approaches to thinking about future care and treatment if a person was to become seriously ill or approaching the end of their life.
Engagement with external stakeholders and experts
To ensure that the views of interested parties, and in particular the views of people affected by the use of DNACPR during the pandemic, have influence and shape the scope of the review from the outset, we held initial conversations with 47 stakeholders who have a specific interest in the scope of the review. These included organisations that represent or advocate on behalf of the public, and family carers, care providers, and care professionals. Many of these organisations and individuals are continuing to provide their expertise and insight through an External Advisory Group, which influenced the scope and approach and will influence our recommendations.
Bespoke information collections
To help us to understand the scale of the issue, we are asking adult social care providers for their feedback. We sent approximately 25,000 adult social care providers (including care homes, nursing homes, domiciliary care agencies, supported living schemes, Shared Lives and extra care housing) a voluntary information request. We asked about the number of inappropriate DNACPR decisions put in place since 17 March 2020, what made them inappropriate and if they remained on peoples’ records at the point of submission of the information request.
With the support of voluntary sector partners we are running a survey for people who use services and their families and carers to ask about their experiences of the use of DNACPR during the pandemic. We are making sure that some communities who may need support in sharing their experiences through this survey are enabled to do so.
We are carrying out fieldwork to explore how primary, secondary, social care and system partners have worked together in an area – including the impact of commissioning arrangements. This will help us to ensure best practice in the use of DNACPR is followed nationally.
We have identified seven Clinical Commissioning Group (CCG) areas as case studies for our review, which are listed below. The CCGs we have chosen cover a cross-section of areas and a mix of demographics so that the lessons we learn will be of value to people in health and social care across the country, wherever they are working.
We are focusing activity on a CCG, the level at which clinical services are planned and delivered and where population health management is used to target interventions to particular groups, in partnership with NHS organisations and local government.
Wherever it is possible and appropriate to do so, we are carrying out activities virtually.
Retrospectively tracking people’s journeys through care
To gain an understanding of people’s experiences of care (with a focus on older people and people with a learning disability) and how decisions about their care and treatment were made and communicated, we are carrying out an in-depth review of a small number of experiences. This involves reviewing the relevant care records and wherever possible speaking to the person experiencing care and their families and a range of relevant health and care professionals.
Sampling DNACPR records
We are reviewing the DNACPR records of a larger number of people who have been affected since the pandemic. This will not consider every DNACPR experience since the pandemic but will allow us to consider a larger number of peoples’ cases and understand local and national trends in the quality of DNACPR decisions. We are accessing care records through a range of care settings (acute, mental health hospitals, care homes and GPs).
Information from local advocacy groups
We are speaking to local advocacy organisations that have engaged with the public and providers over the use of DNACPRs to gather the experiences of people who have been affected by the use of DNACPRs.
Interviews and focus groups with frontline staff
We are speaking to staff from different roles and organisations that are involved in providing care that includes the use of DNACPRs to understand practice, challenges and enablers for best practice.
Interviews with commissioners and members of the wider system
We are speaking with commissioners and system leaders to explore practice across the system, collaboration and how oversight arrangements ensure best practice in the use of DNACPRs.
All aspects of the review are guided by our assessment framework, which we have developed in consultation with our stakeholders. It focuses on the following themes:
People at the centre
How are providers and systems putting people at the centre of their care in approaches to DNACPR to protect human rights, protect people from discrimination and meet people’s individual needs? What have people’s experiences been since the start of the pandemic?
Shared vision, values, governance and leadership
How have providers and the system worked in partnership to influence and agree a shared approach for the use of DNACPRs that protects human rights, gives equal access to care and treatment and prevents avoidable deaths? What are the enablers and barriers for the appropriate use of DNACPR?
Workforce capacity and capability
How do providers and the system work together to ensure that staff involved in the use of DNACPR have the right knowledge, skills and tools to deliver personalised approaches to DNACPR in line with the relevant legislation, and how are staff and people supported to raise concerns in order to improve care?
A national report of our findings will be published in early 2021. The final report will build on the findings we set out in our interim report. It will present a broader national picture of approaches towards DNACPR since the pandemic, describe how system partners have worked together to ensure personalised DNACPR approaches for people and present a clear set of recommendations in order to inform national learning and support good practice development.
CCGs selected as case studies for the review
The CCGs have been selected to cover a cross-section of areas and a mix of demographics so the lessons we learn will be of value to people in health and social care across the country, wherever they are working.
The seven areas are:
- NHS Birmingham and Solihull CCG
- NHS Bristol and North Somerset CCG
- NHS Cambridgeshire and Peterborough CCG
- NHS Morecambe Bay
- NHS Sheffield
- NHS South East London CCG, with a focus on Greenwich
- NHS Surrey Heartlands CCG, with a focus on East Surrey
DNACPR review assessment framework
Our KLOEs and prompts have been guided by the "We" statements developed by Think Local Act Personal to describe what providers and their staff, commissioners and system leaders need to do to make sure that care and support are truly person-centred.
Person at the centre
- We work with people as equal partners and combine our respective knowledge and experience to support joint decision-making.
- We support people to plan for important life changes, so they can have enough time to make informed decisions about their future.
- We see people as individuals with unique strengths, abilities, aspirations and requirements and value people’s unique backgrounds and cultures.
- We want people to be as involved as possible in writing their personalised care and support plans and provide help from people who understand the importance of person-centred planning.
- We ensure that care and treatment is appropriate, meets people’s needs, and reflects their preferences.
KLOEs and prompts
- Were personalised approaches to DNACPRs, used as part of advance care planning, protecting human rights and communicated to people in a way that was accessible and met their individual communication needs?
- How effectively were people treated as partners in their care?
- How were carers/families/LPAs/independent mental capacity advocates involved in order to ensure the person’s wishes are respected?
- Did people have the right information and sufficient time to make informed decisions about advance care planning, including those most at risk of discrimination?
- How is a change in a person’s clinical situation recognised, and whether the CPR decision and documentation needs to be reconsidered? Was a process for reviewing DNACPRs in the future agreed and has this been effectively undertaken during the pandemic?
- Are DNACPR orders placed during the pandemic without discussion with families/individuals still in place? If so are individuals/families aware? If concerns have been raised, what action has been taken?
- During COVID-19 how did the use of DNACPRs affect how the groups most at risk of discrimination and human rights breaches felt valued within society? For example, were there variations between older people and people with a learning disability or autism?
- How has the use of DNACPRs impacted on relationships between people who are disproportionately affected by COVID-19 and professionals?
- How has the use of DNACPRs impacted on how people felt valued within their local their community?
- To what extent were DNACPRs part of non-blanket, person-centred advance care planning during the COVID-19 pandemic?
- How did the use of DNACPR approaches during COVID-19 vary from the approaches used pre COVID-19?
- What was the timeline for any variations/changes in practice? What triggered/caused them?
- NICE guidelines, other national guidelines, local guidelines, hospital capacity, “Save the NHS” campaign, specific directives/instructions.
- Has the use of DNACPR and guidance/instructions to services to put DNACPRs in place increased during the pandemic? In what ways (for example the blanket use of DNACPRs)?
- What variations were there on rates of use of DNACPR overall and for those groups who are most at risk of discrimination for example older people and people with a learning disability and/or autism?
- What approaches that may include DNACPR (such as treatment escalation plans (TEPs) and ReSPECT forms) were used?
Shared vision, value, governance and leadership
- We work in partnership with others to make sure that all our services work seamlessly together from the perspective of the person accessing services.
- We provide information to make sure people know how to navigate the local health, care and housing system, including how to get more information or advice if needed.
KLOEs and prompts
- How well has the system collaborated during the pandemic, to influence and agree a shared approach for the use of DNACPRs that protects human rights, gives equal access to care and treatment and prevents avoidable deaths?
- Who makes policy/guidance decisions and where are these decisions made?
- Is the DNACPR plan communicated and implemented effectively locally? What are the enablers/barriers?
- Have DNAR/DNACPRs prevented people from accessing healthcare other than CPR in line with their human rights?
- Are there forums/spaces for adult social care and primary care to be heard equally and to influence collaborative working and decision making?
- Have the voices of people who are most at risk of discrimination and their advocates, been heard, and acted upon?
- At times of high system pressure how were system partners assured guidance was clear, considered ethically and enabled best practice to be maintained? What enablers/barriers were perceived during this time?
- What roles have commissioners played in preventing the inappropriate use of DNACPRs?
- How have providers, commissioners and system partners effectively engaged and collaborated in preventing the inappropriate use of DNACPRs?
- How did the use of frailty scales/assessments, decision making tools, triage protocols and guidelines influence treatment plans and DNARCPR decisions?
- Has the culture within providers and across the system driven personalised approaches in the use of DNACPR?
- How well has collaboration across providers and multidisciplinary professionals supported shared expertise and driven effective implementation, delivery and quality monitoring of advance care planning and DNACPRs?
- Has learning and development for DNACPR and advance care planning improved the experience of people who are affected? If so, how?
- How well are DNACPR decisions made by health professionals challenged by ASC providers and others to protect people's human rights, including their right to life?
- How has the use of digital solutions and technology, including remote consultations, supported or hindered personalised approaches to DNACPRs?
- How are you assured digital solutions, technology and remote consultations are supportive of individuals’ personal needs and preferences?
- Do digital solutions and technology enable staff to work within their level of professional responsibility?
- Were staff across the system able to access DNACPR, advance care plans and relevant information about the person and act on them?
- How are you assured that digital solutions and technology have resulted in safe care and treatment?
Workforce capacity and capability
- We provide information and advice that reflects relevant law and/or clinical guidance.
- We make sure that people, and those closest to them, know what to do and who to contact if their health condition, support arrangements are deteriorating and a crisis could develop. We respond quickly to anyone raising concerns.
KLOEs and prompts
- What was the impact of use of blanket, DNACPRs, and inappropriate DNACPRs, on people in residential care settings and care at home settings?
- Did the use of DNACPRs on people in adult social care settings and in the community result in people being in environments without the level of health and social care support to meet people’s needs?
- Did staff misunderstand the purpose of DNACPRs so that people were prevented from accessing healthcare and treatment that met their needs, in line with their human rights? If so how?
- Were specialists with expertise appropriate to the person’s needs involved in discussions to ensure that decisions were not based on assumptions about the quality of life, age or level of disability? For example, were specialists in learning disability or dementia involved where appropriate?
- How well did the support arrangements consider the impact on people’s mental health and wellbeing?
- How do providers and commissioners ensure that staff involved in advance care planning and DNACPR protocols have the right knowledge, skills and tools to deliver personalised approaches to DNACPR? For example, in interpersonal and communication skills and in the relevant legislation such as the Mental Capacity Act 2005?
- Were DNACPRs based on sound clinical decisions in line with best practice and the Mental Capacity Act 2005, Equality Act 2010 and the Human Rights Act 1998?
- Were methods in place to enable staff to access timely professional advice and support when faced with complex DNACPR decisions? How effective were these?
- Were senior responsible clinicians sufficiently supported to follow good practice when making difficult decisions in pressurised circumstances and complex/busy settings?
- How reliable was the process if staff needed to raise concerns about the effectiveness of clinical guidance or speak out about concerns or undue pressures from within their provider or from others? What action has been taken in response to any concerns raised in this way?
- What methods were in place to signpost people using services or those closest to them to raise concerns? If decisions were challenged what actions were taken?
- How were all people, including those who are most at risk of discrimination, reassured about the use of DNACPRs during COVID-19?
- How effective have engagement strategies been in maintaining relationships and rebuilding public trust and confidence where needed? How has this been assessed?
- How were concerns and complaints from people managed and acted upon?
- Last updated:
- 22 December 2020