Learning from deaths of people in their care can help providers improve the quality of the care they provide to patients and their families, and identify where they could do more.
A CQC review in December 2016, 'Learning, candour and accountability: a review of the way trusts review and investigate the deaths of patients in England' found that some providers were not giving learning from deaths sufficient priority and so were missing valuable opportunities to identify and make improvements in quality of care.
In March 2017, the National Quality Board (NQB) introduced new guidance for NHS providers on how they should learn from the deaths of people in their care. We are now helping trusts to meet the requirements of the new guidance.
National guidance on learning from deaths
Data collection and reporting
The dashboard shows what data you need to include in your collections and provides a suggested format for how to publish this information. You may also present additional information as long as you've also included the minimum requirements. For example, mental health trusts may choose to differentiate between inpatient adults aged 18-64, and older people (aged 65+). This is acceptable provided that the dashboard total represents all adults (aged 18 and over).
When counting ‘total number of deaths in scope’ and ‘total number of deaths reviewed’ it should be possible to see what percentage of deaths has been reviewed in a particular period. In other words, the number of deaths reviewed should be reported as a percentage of the number of deaths. For some trusts, this means that it might be helpful to have a time lag in the reporting period - for example Q1 data would be reported at the end of Q2.
The minimum reporting requirements for quarterly public board meetings are outlined under 'Improved data collection and reporting' in the executive summary of the guidance. It should be clear on the board agenda that there will be a discussion on the data presented, the learning from this and what the board will do to lead the organisation in improving quality of care.
Key requirements for NHS provider boards
This resource is aimed at provider boards and in particular non-executive directors and non-clinical executive directors and explains what boards need to do to implement the NQB guidance and the specific responsibilities of board members.
Provider policies on learning from deaths
The NQB guidance outlines that all providers should have a policy in place setting out how you respond to the deaths of patients who die under your management and care. NQB has asked for these to be published on your websites by September 2017 and to include how you will:
- determine which patients are considered to be under your care and included for case record review if they die (also stating which patients are specifically excluded)
- report the death within your organisation and to other organisations who may have an interest (including the deceased person’s GP)
- respond to the death of an individual with a learning disability, autsim or both, or mental health needs, an infant or child death, and a stillbirth or maternal death
- review the care provided to patients who you do not consider to have been under their care at the time of death but where another organisation suggests you should review the care your trust provided to the patient in the past
- review the care provided to patients whose death may have been expected, for example those receiving end of life care
- record the outcome of your decision whether or not to review or investigate the death, informed by the views of bereaved families and carers
- engage meaningfully and compassionately with bereaved families and carers
- offer guidance, where appropriate, on obtaining legal advice for families
We've designed this document to support trusts that are developing their Learning from Deaths policy. It is intended as a voluntary tool that you can use if you wish to. It provides a high level outline of what should be covered in a Learning from Deaths policy and so can be used as a template or as a guide for what you include in their policy. We will not use this template to audit trust policies.
For a complete list of key points to consider when writing your policies, please refer to Annex C of the guidance.
Does your trust have an example policy that you would be willing to share with others? Please email any examples to our Patient Safety Team.
Reviewing case records
The NQB guidance recommends that all providers take a consistent and evidence-based approach to reviewing case records of adults who have died in acute hospitals.
Working with Healthcare Quality Improvement Partnership (HQIP) we've commissioned the Royal College of Physicians (RCP) to develop a standardised approach to case record review – referred to as Structured Judgement Review (SJR) – and to offer training to trusts on this.
Preventable incidents, survival and mortality (PRISM)
Other approaches to case record review exist, such as those based on the PRISM methodology. The PRISM materials were developed for research purposes but have been adapted for use by a number of organisations, and are available here to help trusts develop their approach to case record review.
Instructions on how to undertake a PRISM review and guidance on determining ‘problems in healthcare’.
The study review form. Trusts should keep in mind that this was used to support a research study and gathered information not necessarily relevant to learning from death.
A guide to describing 'problems in healthcare’ and contributory factors to problems in healthcare (from Q15 of the review form).
The Five Year Forward View for Mental Health identified that people with severe and prolonged mental illness are at risk of dying on average 15 to 20 years earlier than other people.
The NQB guidance requires that all inpatient, outpatient and community patient deaths of people with severe mental illness (SMI) should be subject to case record review.
In relation to this requirement, there is currently no single agreed definition of which conditions/criteria would constitute SMI. The term is generally restricted to the psychoses, including schizophrenia, bipolar disorder, delusional disorder, unipolar depressive psychosis and schizoaffective disorder. It is acknowledged that there is substantive criticism of this definition; personality disorders can be just as severe and disabling, as can severe forms of eating disorders, obsessive compulsive disorder, anxiety disorders and substance misuse problems.
The national bodies are working to clarify expectations about mortality review in mental health and community services in general. In the meantime, please use the above description of SMI. You can also review the care provided to patients with other significant mental health issues such as those mentioned above, where this can be done proportionately and effectively.
Reports and case studies have consistently highlighted that in England people with learning disabilities, autism or both die younger than people without learning disabilities.
The NQB guidance specifies that all inpatient, outpatient and community patient deaths of people with learning disabilities, autism or both should be reviewed to learn from them and thereby contribute to service improvements.
The Learning Disabilities Mortality Review (LeDeR) programme, commissioned by HQIP, has an established and well-tested methodology for reviewing the deaths of people with learning disabilities, autism or both.
Trusts should notify all deaths of people with learning disabilities, autism or both to the LeDeR programme.
The LeDeR programme is being rolled out across England. Where it is available in your area, you should review all deaths of people with learning disabilities, autism or both using the LeDeR methodology.
We strongly recommended that you also conduct an initial case note review of all deaths of people with learning disabilities, autism or both using structured judgement review (SJR) or an alternate robust and evidence-based methodology. This is to ensure that there is appropriate clinical review of the last episode of care.
Where the LeDeR programme is not yet available, you should use SJR or an alternate methodology to review the care provided to someone with a learning disability who has died.
Child deaths – review process
The NQB guidance requires providers to collect and publish quarterly information on deaths in your care, reviews, investigations and resulting quality improvement. Deaths of both adults and children should be reported, however, every child’s death must be reviewed, and different review processes apply for adults and children.
The Royal College of Physicians' structured judgement review (SJR) methodology is intended for use in adult inpatients only. Infant or child (under 18) death reviews should be undertaken in accordance with national guidance, Working Together to Safeguard Children. The Department for Education's 'Form C' should be used as a reporting template. This includes the small number of children who die on adult wards.
The Department of Health, Department for Education and NHS England are currently developing new national guidance on reviewing child deaths, and will publish this towards the end of 2017.