Policy Bereavement Care This policy recognises that bereavement sensitive practice is a concept that should extend throughout cancer care provider services in the Anglia Cancer Network to promote a sensitive and timely response to the individual needs of bereaved people Ref: AngCN-CCG-PS8 Page 1 of 9
1. INTRODUCTION Families and carers have particular needs after the person has died that may only be fully realised after the patient s death. Grief is a normal response to human loss, and while bereavement represents a significant challenge, the majority of people have sufficient resources to enable them to respond and adapt to this life transition (1). [However] for many people bereavement represents a major, destabilising crisis which requires the sustained comfort and support of others. Information about coping with grief and opportunities to meet other bereaved people may be helpful. Counselling may be needed if the support of family and friends or a befriending service is not considered sufficient. Although bereavement is a normal life event, its normality should not be a justification for withholding care and support (2). Assessment of people s needs and coping styles in bereavement can assist in targeting support services to individuals whose ability to adjust to loss is complicated by their reaction to the circumstances of the loss, their preparedness for the death, previous experience of loss and coincidental losses, e.g. of home, finance, community etc. This policy recognises that bereavement sensitive practice is a concept that should extend throughout cancer care provider services in the Anglia Cancer Network to promote a sensitive and timely response to the individual needs of bereaved people (3). 2. CONTEXT Bereavement can give rise to a wide range of needs - practical, financial, social, emotional and spiritual. There might be a need for information about loss and grief, needs to pursue particular cultural practices, needs for additional support to deal with the emotional and psychological impact of loss by death or, in a small number of circumstances, specific needs for mental health service intervention to cope with a mental health problem related to loss by death (1). 3. OBJECTIVES Bereavement support services are offered to the families and carers of all palliative care patients. Family members and carers needs are assessed, acknowledged and addressed. Services are provided by staff and volunteers who have received specific education in bereavement support, grief and loss. 4. PRINCIPLES The following principles underpin the development of services and professional practice around the time of a patient s death and afterwards. They apply equally to the care and support of the patient before death and subsequent support of the Page 2 of 9
partner, family, relatives and/or others who are bereaved. Service providers may wish to consider having agreed policies and procedures in place to support the principles. The principles are: Respect for the individual when a patient dies a bereavement service should be available that respects confidentiality and individual preferences, values, culture and beliefs at all times in respect of both the person who has died and the bereaved family; partners or others. Equality of provision all bereaved people are entitled to a service that responds to and respects their basic needs. Service providers may wish to consider policies that describe a core service which is inclusive and can accommodate the range and variety of users needs with equity. Sustainability of provision - dedicated and sustainable funding and appropriate staff recruitment, selection, education and development protocols need to be in place. Communication communication with people around the time of a death and afterwards should be clear, sensitive and honest. This is particularly important when addressing issues such as post mortem or donation of organs. Information people who are dying, and those who are bereaved, need accurate information, appropriate to their needs, communicated clearly, sensitively and at the appropriate time (the role of the voluntary sector can be of particular importance here). Partnership when a patient dies, services should be responsive to the experiences of the patient and people who are bereaved; these experiences should inform both services development and provision. In one-to-one contact, patients and families should be enabled to express their needs and preferences, through sharing expertise and responsibility and facilitating informed choice. There should be sufficient information, time and support available to enable this to happen. Continuity between services pre-and-post bereavement before and after death will enable the potentially beneficial influence on bereavement of sensitive, timely and skilled assessment and intervention before death. Recognising and acknowledging loss people who are bereaved need others to recognise and acknowledge their loss. Recognition by professionals, appropriately expressed, may be especially valued. Professionals should be aware of the importance of time and timing and should try to work at the pace dictated by people s feelings and needs. Environment and facilities every effort should be made to conduct discussions and/or counselling in a private, sympathetic environment away from interruptions. Staff training and development it is essential that staff involved in caring for people who are dying, and for people who are bereaved, are well Page 3 of 9
informed so they feel confident about the care and support they give. They should have adequate opportunities to develop their knowledge, understanding, self-awareness and skills. Competence, at all levels, should be assured through the application of sound, evidence-based assessment tools, interventions and evaluations, and the use of robust ethical frameworks. Health and safety consideration should be given to the health and safety both of the bereaved and of staff working with the bereaved to ensure that the health and safety of an individual is not compromised by issues relating to the cause of death (e.g. infectious disease or similar) or by the reaction of the bereaved to the death. Review and audit Secure and efficient systems need to be in place to enable appropriate reviews and audits of bereavement services to be carried out, and the results of these evaluations to be disseminated and acted upon (4). 5. SERVICE FRAMEWORK Provider services will determine the local operational policies and procedures to deliver bereavement care services. However, in order to ensure that care is targeted appropriately and supports people efficiently and effectively, provider services should consider their operations in a framework, which ensures that the processes to assess, plan, deliver and evaluate such care are in place in multidisciplinary team settings. Recognition is given to the importance of partnerships between services throughout the network, acknowledging that bereavement support is delivered by a wide range of service providers and not all providers will provide a comprehensive bereavement service as described here. In the following section, the core components of a bereavement service are identified. These cover the key structure, process and outcome areas, which can then be audited and evaluated. The subsequent sections identify some of the detail of resources and activity which would be optimum and which some services might wish to aspire to, either as they grow or as new investment opportunities are made available. 5.1 Core components of a bereavement service are: Access to a designated Bereavement Coordinator with appropriate qualifications and experience. Appropriate staffing, both paid and voluntary. Mission statement, bereavement policy and procedure. Dedicated funding. Data collection, including National Minimum Data Set information for specialist palliative care services. Evaluation and research. Maintenance of records. Page 4 of 9
5.2 Policies, including those related to Information Governance; Confidentiality; Staff recruitment, selection, education and development. 5.2.1 Practice processes before death: Access to Skilled psychosocial and spiritual assessment. Skilled social casework, counselling, therapy and group work. Risk assessment. Diagnosis of dying and the use if the Liverpool Care Pathway. 5.2.2 Practice processes at time of death: Attendance by clinical staff to support the family, where appropriate. Comfort and consolation. Recognition of appropriate cultural and religious practices. Access to information and coordination of organ donation, where appropriate. Supporting and advising people in the immediate period, post death and in bereavement, in dealing with the practical aspects of a death, including financial issues and benefits, accessing services like the national Bereavement Advice Centre and the D.W.P. tell us Once scheme. Liaison with appropriate religious and spiritual professionals, and funeral director if necessary. Opportunities for family, including children, and friends to be with the deceased to say their goodbyes. 5.2.3 Practice processes after death: Continuation of pre death needs assessment. Early access to death certificates from GP practices, where this is a priority for the family in making funeral arrangements. Staff attendance at funeral, where this is agreed in a multidisciplinary forum and is thought helpful to either a particular member of staff, or has been requested by the family. For the most vulnerable bereaved people, liaison should take place between different agencies involved, so as to maximise the support given. Development of bereavement care plan. Monitoring of needs over time. Proactive and systematic outreach to ensure that assessed needs are met and more vulnerable people are supported. 5.2.4 Bereavement services provided: Bereavement follow up service which may offer some or all of the following elements: In a timetable determined by the service provider, send condolence cards and make an immediate post-death contact with the bereaved, facilitate discussion about bereavement risk within the multidisciplinary team; facilitate discussion about attendance at the funeral for staff who have been involved with the management, care and support of the patient and family; provide further contact, by phone or letter, with the bereaved in a timescale between 4 weeks and 3 months; negotiate with the bereaved person, Page 5 of 9
regarding whether professional intervention is required at that point in time and, a letter which, if no activity is planned, offer contact details and a reassurance that the bereaved person can contact the service at any time in the future; generates anniversary of the death cards and invitations to memorial services. Identification and delivery of the level of professional support required, from befriending to counselling; including support groups according to needs, ages and stages, which offer a range of activities, e.g. Coffee mornings and practical life skills groups. Information sessions, including dealing with unresolved questions and enabling meetings with the appropriate professional to discuss and answer such questions. Counselling-individual, family, either at the provider base or through home visits. Referrals to other services, including General Practitioner and community services. Onward referral for the specialist management and treatment, e.g. psychologist or psychiatrist, of complicated bereavement. 5.2.5 Development, education and training for all staff involved with the care and support of the patient and family: Attendance at courses-in-house and external. Supervision-individual or group. Debriefing. Individual counselling. Quiet room. Staff room. Flexible hours. 5.2.6 Community links: Collaboration with community agencies and groups offering bereavement support. Education and training offered to other-professionals, general public. Links with local statutory bodies (5). Specialist palliative care service providers within the Anglia Cancer Network should ensure that they have multidisciplinary teams able to deliver the three core components of bereavement support (Box 1): Box 1: A three-component model of bereavement support (1). A three-component model of bereavement support Component 1 Grief is normal after bereavement and most people manage without professional intervention. Many people, however, lack understanding of grief after immediate bereavement. All bereaved people should be offered information about the experience of bereavement and how to access other support, with information being supplied by health and social care professionals providing day-to-day care to Page 6 of 9
families. Component 2 Some people may require a more formal opportunity to review and reflect on their loss experience, but this does not necessarily have to involve professionals. Volunteer bereavement support workers/befrienders, self-help groups, faith groups and community groups will provide much of the support at this level. Those working in Component 2 must establish a process to ensure that when cases involving more complex needs emerge, referral is made to appropriate health and social care professionals with the ability to deliver Component 3 interventions. Component 3 A minority of people will require specialist interventions. This will involve mental health services, psychological support services, specialist counselling/psychotherapy services, specialist palliative care services and general bereavement services. 6. ANGLIA CANCER NETWORK Recognises that this policy naturally interfaces and integrates with other network policies on related topics e.g. communication, psychosocial care and information and should be used as such. Encourages local health communities to develop and implement a local bereavement care plan. Encourages each Trust/organisation to determine with its partner healthcare organisations the exact nature of the bereavement care services required locally, and to produce an integrated plan for the provision of a bereavement care service, for the whole community, that takes account of the cultural diversity within that community. 7. REFERENCES (1) National Institute for Health & Clinical Excellence (NICE), Improving Supportive and Palliative Care for Adults with Cancer, March 2004. (2) Irish Hospice Foundation, Foundations of Bereavement Support in Hospice and Palliative Care, Information Resource No 1, 2002. (3) Irish Hospice Foundation, Standard for Bereavement Care, Information Resource No 2, 2002. (4) Department of Health, When a Patient Dies Advice on Developing Bereavement Services in the NHS, October 2005. (5) Irish Hospice Foundation, Foundations of Bereavement Support in Hospice and Palliative Care, Information Resource No 1, 2002. 8. INTERDISCIPLINARY COLLABORATION The Anglia Cancer Network Bereavement Policy was developed by two multidisciplinary groups (working and reference), from across the region under the Chairmanship of John Hunt of Tapping House Hospice, and project managed by Chris Mackintosh from Anglia Cancer Network. The groups further disseminated to colleagues, to produce a comprehensive policy covering all areas within the Supportive and Palliative Care Setting. The Group will reconvene every two years to review the document. Page 7 of 9
The working group: John Hunt Chris Mackintosh Anthony Beck Rev. Betty Cole Tracey Dryhurst Rev. Andrew Haig Rona Hardy Rev. Keith Morrison Kathy Nobes Rev. Sheila Nunney Rev. David Parkes Jo Shaw Ruth Wilkins The reference Group Rev Charles Amoah Stephanie Barker Dr. Kelvin Bengston Lyndsay Carter Dr. Catherine O Doherty Rev. Derek Fraser Rev. Anna Garvie Mary Gore Annie Hallett Emma Harris Sam Hobson Jane Maxfield Dawn Taylor Jackie Tritton Rev. Scott Watts Julie Southon Hillary Wilson Chair Project Manager Patient/User Representative Adult and Child Bereavement Lead Psychological Palliative Care Specialist Team Leader Bereavement Officer Clinical Nurse Specialist Upper GI Nurse Consultant Medical Director Cancer Manager Consultant in Palliative Care Macmillan Sister Spec. Counsellor and Comp. Therapy Lead Specialist Palliative Care Nurse Palliative Care Bereavement Co-ordinator Matron Lead Nurse Specialist Palliative Care Nurse Family Support Worker Page 8 of 9
9. MONITORING THE EFFECTIVENESS OF THE PROCESS a) Process for Monitoring compliance and Effectiveness - Review of compliance as determined by audit. Any non compliance to be presented by QA Manager to the AngCN Business Meeting on an annual basis the minutes of this meeting are retained for a minimum of five years. b) Standards/Key Performance Indicators This process forms part of a quality system working to, but not accredited to, International Standard BS EN ISO 9001:2008. The effectiveness of the process will be monitored in accordance with the methods given in the quality manual, AngCN-QM Equality and Diversity Statement This document complies with the Suffolk PCT Equality and Diversity statement an EqIA assessment is available on request to Anglia Cancer Network QA Manager, Gibson Centre, Exning Road, Newmarket, CB8 7JG. Disclaimer It is your responsibility to check against the electronic library that this printed out copy is the most recent issue of this document. Please notify any changes required to the Anglia Cancer Network Quality Manager Document management Document ratification and history Approved by: Rosemary Wade, Chair of Palliative & End of Life Care CCG Date approved: Date placed on electronic library: Review period: Authors: Version number as approved and published: Every two years (or earlier in the light of new evidence) John Hunt, Director of Care Services Development, The Norfolk Hospice Document Owner: Anglia Cancer Network, Tel: 01638 608221; www.angliacancernetwork.nhs.uk 2 Unique identifier no.: AngCN-PS8 Page 9 of 9