People’s Voice worked closely with the Network’s Transforming End of Life Care in Acute Hospitals Group to produce recommendations for bereavement service improvements, ensuring the views of bereaved relatives were at its core. These recommendations were approved following a wide consultation on 10th November 2017.
The Network commissioned a survey to seek the experience of bereaved relatives. The survey Care of the Dying Evaluation (CODETM), published in 2015, showed wide variation in the availability of support, information and facilities for families and carers of those dying in the hospital setting.
Despite a national drive to support more patients to die in their own home, in reality many will spend their final weeks, days and hours of life in a hospital setting. Timely access to information and resources is essential and many bereaved relatives expressed the wish that staff had been more proactive in exploring end of life and bereavement wishes, and been offered information prior to death to help them better prepare.
With this in mind the Network groups collaborated to produce some recommendations for Acute Trusts with the aim that these be used to review bereavement services. We recognise that developing an exemplary bereavement service is an aspiration that will take time to realise. However, there are many aspects of services that were considered essential in providing an appropriate level of bereavement information and support.
The dual standard bereavement specification (B1) comprises a minimum standard that all hospitals should ensure is in place, and a gold standard of service, which should form part of the longer term end of life strategy for the Trust.
In addition, families also noted having more information on what to expect as their loved one deteriorated and died would have helped. The What To Expect (WTE1) guidance has been developed in response to feedback and aims to support staff in acute hospitals to provide the essential information for patients and their families in a timely and pro-active way.
In conjunction with this People’s Voice developed recommendations for Trust bereavement literature (BL1) to provide information at three levels:
- Level 1 (optional): Information that may be useful for families in the hours/days prior to death; if the family wish and if circumstances allow;
- Level 2 (required): Necessary bereavement information for all deaths;
- Level 3 (optional): More detailed information that families my require in the days/weeks following death.
These projects are the work of the People’s Voice Group, a group of dedicated and valued patient and carer representatives, who devoted their time, passion and enthusiasm to share their own experiences of losing a loved one in the hospital setting, both positive and negative, to underpin the development of these recommendations.
- Dual Standard Bereavement Specification (B1)
- What to expect when somebody close to you dies (WTE1)
- Bereavement Leaflet Recommendations (BL1)
- Network Recommended Bereavement Specifications
- Setting Standards: Mortuary Viewing Room Project; Aintree Hospital
- Small Changes, Big Difference!: Bereavement Service Improvements; Southport & Ormskirk Hospital
We hope you will find these resources of value in developing and evaluating bereavement care services.
Dr Julie Raj and Sharon Bird
Chairs of the Network’s Transforming End of Life Care in Acute Hospitals Group and People’s Voice Group
Additional Available Resources
- Lancs & Cumbria Macmillan Bereavement Specification for Hospitals 2013
- Lancs & Cumbria Bereavement Specification Gap Analysis
- Lancs & Cumbria Hospitals Bereveament Services Report 2013
- National Bereavement Alliance: A Guide to Commissioning Bereavement Services in England
- Lancs & Cumbria Bereavement Services Directory