Kent

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Kent Medway Cancer Network
NHS
Bereavement Care Standards
Improving Supportive and Palliative Care for
Adults with Cancer 2004
Chris Smith Lead Social Worker/Counsellor
Pilgrims Hospices Kent Ann McMurray Psychosocial
Services Manager The Wisdom Hospice Kent
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Risk Assessment in Bereavement

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• For the majority of people, grief although
  psychologically painful and distressing is a
  normal process reflecting both the strengths and
  values of human attachments and the capacity to
  adapt to loss and adversity
• Raphael et al (2002)

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Bereavement can increase the risk
of

• Mortality
• Depression and Anxiety
• Poor general health
• Uptake of health services
• Stroebe and Stroebe, Bereavement and Health,
  (1987)

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Goal of risk assessment

• To select and apply a preventive model of
  care to counter and minimise the likelihood of
  morbidity in a proactive and cost-effective
  manner.
• Kissane (2004)

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What are risk factors?

• Risk factors are characteristics of bereaved
  individuals or features of their situation that
  increase vulnerability to the loss experience or
  slow down adjustment to bereavement.

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Classification of risk factors

• Situational
• Environmental
• Individual

Individual
Environmental
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Situational factors

• Circumstances of the death
• -sudden
• -untimely
• -difficult/traumatic/violent
• Concurrent life events
• -multiple losses or bereavements
• -socio-economic/financial distress

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Individual factors

• Relationship to the deceased
• child. parent, partner
• Pre-existing health problems
• -physical
• -mental, eg. history of depression
• Personality
• -interdependent relationships
• -highly ambivalent relationships

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Environmental factors the social and cultural
context of loss

• -loss of main source of social support
• -geographically isolated from family and friends
• -lack of immediate family support
• -family conflict
• -cultural issues
• -family culture of dealing with loss
• -coping strategies
• -disenfranchised grief

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Although risk factors have been identified which
are associated with bereavement outcome

• there is little evidence to support routine
  intervention with all bereaved people.
• intervention may be harmful and inhibit
  resilience
• services must be targeted to the most vulnerable
• risk assessment may assist the process

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When assessing level if bereavement risk

• most people do not need intervention
• allow for uniqueness in response and coping
  strategies
• cumulative presence of risk factors may indicate
  level of support needed
• family and individual coping styles may help to
  reduce risk
• risk factors may be evident pre bereavement and
  early intervention appropriate
• those identified at risk need to be offered
  support
• if intervention is declined - respect this!

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Remember.

• Risk assessment is a clinical indicator and not a
  predictor of outcome
• Clinical judgement needs to be based on sound
  knowledge

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Risk assessment relies on

• Time
• Accurate assessment of family psychosocial and
  bereavement needs.
• Reliable method
• Staff knowledge and skill
• Resources
• Family involvement

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Issues for professionals

• Who is responsible for assessing bereavement
  risk?
• Who should be informed if person identified as
  at risk?
• How to respond if an at risk person refuses
  support?
• How do we develop a culture within our
  organisations that balances risk assessment and
  fosters resilience in bereavement care?
• How to involve service users in identifying their
  bereavement needs?

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• Statistical Studies confirm secure people,
  whose experience of life has led to a reasonable
  trust in themselves and others, will cope well
  with anticipated bereavements provided they are
  well supported However, multiple, unexpected
  and untimely losses of people on whom one
  depends, or who depended on the survivor, can
  overwhelm the most secure person lack of
  security and support can undermine (the) capacity
  to cope with all types of bereavement.
• Parkes CM (1990) 309

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Bereavement Risk Assessment document/tool

• Risk Indicators
• Nature of relationship
• Health history
• Coping strategies
• Social support
• Family coping
• Cultural influences
• Concurrent life events
• Previous losses
• Circumstances of the death

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Recommendations

• Family members and carers who are bereaved
  should, in the first instance, be encouraged to
  use existing support systems. Where these prove
  insufficient, or it is predicted that those
  involved are likely to experience difficult grief
  reactions, there should be access to additional
  help and support.
• Providers of specialist bereavement support
  should work closely with other care providers
• (both statutory and voluntary) to ensure that
  family members can access services when needed

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Component 1

• Grief is normal after bereavement and most people
  manage without professional intervention, however
  many people lack understanding of grief after
  immediate bereavement.
• All bereaved people should be offered information
  about the experience of bereavement and how to
  access other forms of support

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Component 2

• Some people may require a more formal
  opportunity to reflect on their loss experience,
  this does not necessarily involve professionals.
  Volunteer bereavement support workers/be-frienders
  , self help groups, faith groups and community
  groups will provide much of the support at this
  level. Those working in component two must know
  how to refer as appropriate

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Component 3

• A minority of people will require specialist
  interventions. This can involve mental health
  services, psychological support, specialist
  palliative care services and bereavement
  services.
• Provider organisations should be equipped to
  offer the first component of bereavement support
  and have strategies in place to access the other
  components. Services should be accessible from
  all settings.

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Steps towards implementation

• Psychosocial sub group (K M C N) work on
  development on Guidance docs on Ber Risk
  Assessment and Standards Tools
• Completion in 1 year.
• Consultation via KMCN Pall Care Strategy Group
• Circulated to providers and service user groups
• Documents amended in light of feedback
• Adopted by KMCN Nov 06
• Network training programme planned and delivered
• Organisations consider how Guidance can be
  adopted to meet local service requirements

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Local implementation

• Provider organisations to provide Training for
  all staff involved in assessment of psychosocial
  and bereavement care needs
• Training to include Bereavement theory, risk
  assessment, resilience, guidance and exploration
  of tools, and challenges to organisations
• Action plan for local implementation
• Pilot and evaluation at 6 months

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How have organisations adopted it.

• Reflects the uniqueness of each care setting and
  the specific needs of the service users
• Acute hospitals
• Adopting minimum standard (information) and
  working towards a model to meet (NICE 1-2)
• Specialist Pall Care Providers
• Adapting tools to include pre and post death
  assessment (NICE 1-3)

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Kent and Medway Cancer Network

• Guidance on Bereavement Care Standards and
  Bereavement Risk Assessment in Adult Palliative
  Care

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Part 1 Bereavement Care Standards

• Guiding Principles
• Providers should ensure that
• Bereavement care is incorporated fully into the
  philosophy of care.
• Bereavement and the pain of grief is affirmed as
  a natural human experience.
• Bereavement care is provided with respect to the
  individual and their needs, within a safe,
  appropriate, ethical and boundaried
  relationship/context. Is sensitive to the life
  style, developmental stage, experience, culture
  and community within which the person lives.

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Guiding Principles contd.

• Potential beneficiaries are aware of the services
  available and the boundaries/limitations of the
  support offered.
• Volunteers and paid staff are reflective in their
  practice, receive appropriate levels of training,
  supervision and support.

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Guiding Principles contd.

• Risk of psychological and physical complications
  associated with bereavement are minimised.
• The service is monitored and evaluated involving
  feedback from users and other stakeholders to
  support effective change and development.

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Bereavement Care Standards

• In relation to the Service Providers ensure
  that
• Confidentiality and privacy of clients is
  respected, that personal information is
  safeguarded and any information disclosed is done
  so in an ethical manner and on a need to know
  basis.
• All documentation complies with relevant legal
  requirements.
• As far as reasonably practical there is equality
  of access to the service.
• Support is offered in a healthy, safe and
  accessible environment.
• Service is provided in a responsible and
  professional manner.
• Bereavement services are reviewed and evaluated
  in order to improve practice and inform services
  development.
• All stakeholders, (eg. users, volunteers,
  practitioners, managers, commissioners, are
  included in the planning, development of services.

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Bereavement Care Standards

• In relation to Staff Providers ensure that
• Paid staff and volunteers providing the service
  have appropriate qualities, qualifications,
  knowledge and skills relevant to their role.
• Paid staff and volunteers are CRB checked.
• Paid staff and volunteers receive appropriate
  on-going training, support and supervision
  relevant to the level of involvement (NICE 12.35,
  12.38) and which enables them to address loss and
  bereavement issues encountered in their work
  (NICE 12.12).
• Where a member of staff or volunteer experiences
  a significant, personal bereavement, their need
  for support and time-out from involvement with
  the service is assessed on an individual basis.

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Bereavement Care Standards

• In relation to the Bereaved Person Providers
  ensure that
• Bereaved people are routinely given information
  about the experience of bereavement and services
  they can access for support (Component 1, NICE
  Guidance, 12.34). Those with responsibility for
  bereaved children and young people are routinely
  offered relevant information.
• A system is in place to identify those who may be
  more vulnerable during their bereavement by
  developing a Bereavement Risk Assessment Process
  and documentation (NICE 12.33), (see Document
  Part 2).
• When psychological risk, or more complex needs
  (including specialist needs of children and young
  people), is identified, access to appropriate
  specialist intervention should be facilitated.
  (Component 3 NICE Guidance).

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Bereavement Care Standards

• In relation to the Bereaved Person Providers
  ensure that
• Bereavement services are proactive in contacting
  those identified to be at risk via follow-up
  telephone calls or letter to individuals at about
  8 weeks after death (NICE 12.33).
• When a bereaved person requires a formal
  opportunity to reflect on their experience
  appropriate referrals are facilitated.
  (Component 2 NICE Guidance).
• The bereaved person is aware of the nature and
  limitations of support provided by the particular
  service. When referral on to more appropriate
  services is indicated, the client must be
  consulted and fully informed.

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Part 2 Guidance for Bereavement Risk Assessment

• Recommendations
• Where possible Bereavement Risk Assessment is
  regarded as an ongoing process, commencing when a
  family is received into the service, evolving as
  knowledge of the patient and family develops
  through the illness journey and at the time of
  death.
• A standard document (eg. Appendix 1) is available
  to record any indicators of risk and coping
  mechanisms. This supports the ongoing process of
  assessment and review (ideally by a
  multi-professional team) of psychosocial needs.

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Guidance for Bereavement Risk Assessment

• Recommendations contd
• Where indicators are identified and found to be
  significantly affecting the individual
  pre-bereavement, early referral for additional
  intervention/support can be made.
• Where there is a cumulative presence of risk
  factors indicating a potential high risk of poor
  bereavement outcome, active follow-up is made to
  offer appropriate information and services if
  needed.

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Part 2 Guidance for Bereavement Risk Assessment

• Recommendations contd
• Where there is cumulative presence of risk
  factors indicating a risk of poor bereavement
  outcome and no specific follow-up service is
  available eg. acute settings written
  information about the experience of bereavement
  and how to access services should be provided and
  with the persons permission a summary of risk
  indicators identified, sent to the GP.
• Where there are few or no risk indicators
  present, information about the experience of
  bereavement and how to access services should be
  routinely provided.
• Key professionals should have an awareness of
  current bereavement theory and indicators of risk
  through relevant guidance, literature and further
  training.