New guidance from NHS England sets out how healthcare professionals can improve their engagement with bereaved families and learn from their mistakes. It has been published in response to the CQC report Learning, candour and accountability: A review of the way NHS trusts review and investigate the deaths of patients in England.
It consolidates existing guidance and has been shaped by insights from many family members and carers who have experienced a bereavement within the NHS, by health professionals and a range of other stakeholders. The guidance intends to help trusts and commissioners identify where improvements can be made in relation to engagement with families and how they can involve families in improving systems and processes.
There are eight principles that families can expect trusts to follow after the death of someone in their care.
- Bereaved families and carers should be treated as equal partners. This includes using plain understandable language, providing information on how to apply for access to medical and other records and having an accessible policy for engaging with bereaved families and carers.
- Bereaved families and carers must always receive a clear, honest, compassionate and respectful response in a sympathetic environment. Trusts should receive challenge from families positively and ensure a consistent level of engagement at every stage.
- Bereaved families and carers should receive a high standard of bereavement care which respects confidentiality, values, culture and beliefs. This includes providing, offering or directing people to appropriate specialist bereavement support.
- Bereaved families and carers should be informed of their right to raise concerns about the quality of care provided to their loved one. This includes explaining the process to raise a concern and adopting a learning culture that encourages concerns to be raised.
- Bereaved families' and carers' views should help to inform decisions about whether a review or investigation is needed.
- Bereaved families and carers should receive timely, responsive contact and support in all aspects of an investigation process, with a single point of contact and liaison.
- Bereaved partners and carers should be partners in an investigation to the extent and at whichever stages that they wish to be involved, as they offer a unique and equally valid source of information and evidence that can better inform investigations.
- If they wish bereaved families and carers who have experienced the investigation process should be supported to work in partnership with trusts in delivering training for staff in supporting family and carer involvement.
Family involvement before a death
Good communication and relationships are essential. Trusts should talk openly with the patient and (if the patient wishes) with their family and should be aware of guidance on end of life care.
Immediate actions following death
i. Informing a family about a death - Trusts should develop an easy to understand protocol for staff. It can be challenging to communicate a death to families and trusts should take into account staff welfare, support and wellbeing.
ii. Bereavement services and support – Trusts should develop a well-trained family liaison service. Families should be offered practical advice (including a localised information sheet) and support (including where to access counselling support). Trusts should also develop a clear bereavement pathway setting out staff roles and responsibilities at various stages.
iii. Raising concerns – Trusts should encourage families to provide feedback on care provided. For example, families could receive a written communication offering condolences and providing a point of contact where families can raise concerns either immediately or once they have had time to reflect. Information should set out clear time limits for making a complaint or seeking an inquest.
iv. Duty of candour - This statutory duty requires openness and honesty with patients or their families when something has gone wrong that appears to have caused significant harm. Trusts should apologise where a notifiable patient safety incident has occurred
Case note reviews
“Learning from deaths” guidance by the National Quality Board sets out when a case note review must be undertaken. Trusts should consider developing a letter or information for families that explains the purpose of any review and next steps if any problems are identified. All deaths of people with a learning disability should be subject to structured judgement review. In addition, they should be notified to the Learning Disability Mortality Review Programme
Information and participation in an investigation into a serious incident
A serious incident is an adverse event where the consequences for patients, families and carers, staff and organisations are so significant that an investigation is required. Families should be asked for their views, be fully involved in the process and treated as equal partners. Details of independent advocacy services should be signposted to families and they should be provided with a copy of the final report. If there is confidential information which a patient did not wish to be shared with members of their family, a decision needs to be taken by the Caldicott guardian.
Access to independent advice, information and advocacy
Families should be given details of independent advocacy services and of what happens when a death is referred to a coroner.
Family and carer participation in Trust training
Trusts can work with families to deliver joint training.
Involving families in action planning and assurance processes
Families should be offered the opportunity to take part in evaluating recommendations following an investigation and to comment on policies and procedures.
Action if a family is dissatisfied with an investigation or their involvement
If a family is dissatisfied they should be directed to the most appropriate organisation and information should be provided about the Trust’s complaints procedures.
How Bevan Brittan can help
This guidance sets out different stages following a death and asks trusts to involve families in a meaningful and compassionate way throughout. It is accompanied by "information for bereaved families" which trusts should share with families as a supplement to their own resources.
There is more to do but many trusts have already made substantial progress in changing how they engage with families and are improving their learning, systems and processes.
Bevan Brittan can help NHS organisations and healthcare providers by:-
- drafting or updating policies and protocols;
- providing training for staff in working with families;
- providing training on incident investigation and reporting (in particular, considering the wider parallel processes); and
- offering advice in relation to complex decisions regarding information sharing and confidentiality issues generally.