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Bereavement Interventions: evidence and ethics


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Title: Bereavement Interventions: evidence and ethics

Bereavement Interventions evidence and ethics
  • Margaret M. Eberl, MD, MPH
  • June 16th, 2008

  • Definitions.
  • Types of grief.
  • Risk factors for complicated grief.
  • Interventions pre and post-bereavement.
  • Review of the Evidence.
  • Ethical considerations.
  • Future directions.

  • Bereavement the state of loss resulting from
    death the time period following a loss.
  • Grief the strong, complex emotion that
    accompanies a loss.
  • Mourning the process of adaptation public
    rituals associated with bereavement.

  • Broad term that encompasses the entire
    experience of family members and friends in the
    anticipation, death and subsequent adjustment to
    living following the death of a loved one.
  • Internal psychologic processes adaptation of
    family members and experiences of
    griefencompasses changes in external
    circumstances including alterations in
    relationships and living arrangements.
  • Report on Grief and Bereavement Research. Center
    for the Advancement of Health, 2004.

  • Grief is a more specific phenomenon
  • Complex set of cognitive, emotional, and social
    difficulties that follow the death of a loved
    one. Individuals vary enormously is the type of
    grief they experience.

Langston Hughes
  • POEM
  • I loved my friend.
  • He went away from me.
  • Theres nothing more to say.
  • The poem ends,
  • Soft as it began -
  • I loved my friend.

Normal Grief
  • Somatic distress.
  • Emotional distress.
  • Physical responses.
  • Behavioral changes.
  • Physiologic changes.

Time Course of Bereavement
  • Sequence of phases
  • Initial numbness, sense of unreality.
  • Waves of distress occur as bereaved suffer
    intense pining, yearning.
  • Disorganization emerges as loneliness sets in.
  • Re-organization, recovery. Personal growth,

Clinical Presentations of Grief
  • A spectrum of normal and abnormal responses to
  • 20 of bereaved will experience complicated
  • Sub-threshold states probably present greatest
    clinical challenge.

Clinical Presentations of Complicated Grief
Oxford textbook of Palliative Medicine, Third
Edition, 2005.
Risk Factors for Complicated Grief
Oxford textbook of Palliative Medicine, Third
Edition, 2005.
Family Grief
  • Family dysfunction predicts inc rates of
    psychosocial morbidity in bereaved.
  • Five classes of families (supportive, conflict
    resolving, hostile, sullen, intermediate).
  • Dysfunctional families carry the bulk of the
    psychosocial morbidity observed to occur during
  • Screening families on admission to PC (FRI).

Bereavement Follow-Up
  • Expression of condolence an observing model of
  • Generally until shortly after 1st anniversary.
  • For individuals and/or families judged to be at
    greater risk emphasis is ideally on preventive
  • Attempts to establish bereavement counseling only
    after death meet with much avoidance.

Grief Therapies
  • Most basic is a supportive-expressive
    intervention (bereaved person shares his/her
    feelings about the loss), shift in cognitive
    appraisal of the reality that is forever altered.
  • Formal Interventions spectrum spans individual,
    group, and family-oriented therapies, all schools
    of psychotherapy and pharmacotherapies.
  • Variation influenced by age, perception of
    support, nature of the death, personal
    health/co-morbidities of the bereaved.

Formal Bereavement Interventions
  • Guided mourning (grief work).
  • Interpersonal therapy.
  • Psychodynamic therapy.
  • Cognitive-Behavioral therapy.
  • Brief Group Psychotherapy.
  • Basic aids, art and music therapy.
  • Pharmacotherapies.

Measurement in Bereavement
  • A number of self-report measures of bereavement
    phenomena are available reliable, valid
  • Make it possible to specifically evaluate the
    process, outcome of both the grief over the loss
    supportive services used by PC services to

State of the Evidence
  • 1984 IOM Report, Bereavement Reactions,
    Consequences, and Care
  • very little is known about the ability of any
    intervention to reduce the pain and stress of
    bereavement, to shorten the normal process, or to
    mitigate its long-term negative consequences.

State of the Evidence
  • 2004, Report on Grief and Bereavement Research.
  • Primary Prevention bereavement interventions
    open to all bereaved individuals.
  • Secondary Prevention bereavement interventions
    aimed at those at risk of complicated grief.
  • Tertiary Prevention interventions for those
    already suffering complicated/traumatic grief.

State of the Evidence
  • 2004, Report on Grief and Bereavement Research
  • For adults experiencing normal grief,
    interventions are likely to be unnecessary and
    largely unproductive, may even be harmful. For
    adults at risk, may provide some benefit (esp in
    short term), complicated grief likely to provide

Evidence Review
  • Eligible studies had to evaluate whether the
    treatment of bereaved individuals reduced
    bereavement related sx.
  • Of 74 studies, other than efficacy for
    pharmacologic tx of bereavement related
    depression, no consistent pattern of tx benefit
    among other interventions.
  • No rigorous evidence based recommendation
    regarding the tx of bereaved persons!

Forte et al, Bereavement care interventions a
systematic review. BMC Palliative Care. 33,
Five Factors Impeding Progress.
  • Excessive theoretical heterogeneity.
  • Large inter-study variability.
  • Inadequate reporting of intervention procedures.
  • Few published replication studies.
  • Methodologic flaws of study design.

Forte et al, Bereavement care interventions a
systematic review. BMC Palliative Care. 33,
Excessive theoretical homogeneity
  • Distinct groups of investigators working within
    disparate theoretical frameworks.
  • Each vie for attention.

Between study variation
  • Interventions in published studies vary almost as
    much as the authors testing them.
  • Highly variable target populations,
    implementation of intervention, outcome
    measurements, study methodology.
  • Even studies using same theoretical framework
    differed by outcome being tested and mode of
    effect measurement.

Ex. Psycho-dynamic Bereavement Interventions
Inadequate reporting of intervention procedures
  • Very few reported intervention studies describe
    intervention procedures and implementation in
    sufficient detail.

Few published replication studies
  • Prevents the accumulation of a body of evidence
    that would confirm, refute, refine prior
    estimates of treatment effects.

Methodologic flaws of study design
  • Recurring study design, data analysis flaws.
  • Limits inferences of treatment effect.
  • Omission of control groups.
  • Non-random assignment of study subjects.
  • Untried assessment tools ad-hoc sub-group

Ethical Issues
  • there are norms of propriety that prevent the
    systematic gathering of data from recently
    bereaved persons

Rosenblatt, Walsh Jackson 1976
Ethical Issues
  • Bereaved people are considered vulnerable.
  • Bereaved are not included in federal regulations
    for research w/ special populations.
  • Many pervasive assumptions, attitudes.
  • Socially sensitive proposals twice as likely to
    be rejected (Ceci, Peters, Plotkin, 1985)
    affects researchers choice of topics (Seiler and
    Murtha, 1980).

Ethical Challenges Recruitment
  • Medical records.
  • Ancillary health personnel.
  • Clinicians.
  • Public records.
  • Advertisement.

Ethical Challenges Retention
  • Must be adequate procedures in place should a
    participant become distressed after sharing
    his/her emotions in the context of the study.
  • Important in research to characterize those lost
    to follow-up.

Ethical Challenges Control Groups
  • Selecting a control group for bereavement
    intervention studies is challenging.
  • It is essential since grief will improve with
    time, regardless of intervention (Forte et al,
  • Choice of comparison group is difficult
    (Bereaved? Non-bereaved?).

Guidelines for conducting ethical bereavement
  • Voluntary consent.
  • Informed consent.
  • Preventing harm.
  • No pressure to participate.
  • Responsibility for research induced distress.
  • Rigorous methodology.
  • Relevance!
  • Parkes et al, 1995.

Bereavement Research Ethics
  • Emerging data that bereavement research can be
    undertaken safely and ethically provided key
    Methodologic processes conducted, relevant skill
    sets available in research team.
  • Sensitivity, empathy, least intrusive method
    (Hynson JL, 2006).
  • A positive research experience does not preclude
    it being difficult, distressing or painful (Cook
    AS, 1995).
  • Paradigm shift?

Future Directions
  • Additional research is needed to determine what
    constitutes best practice.
  • Forte et al consensus building conference (set
    research agenda), focus on interventions to
    improve key outcomes valued by bereaved
    individuals, target well-defined patient
    populations, conduct high-quality RCT research
    designs, incentivize replication studies, uniform
    reporting standards.
  • Roswell PC can identify families at risk and
    intensify bereavement follow-up through Pastoral

  • There is a spectrum of normal grief, very
  • 20 at risk for complicated grief family
    dysfunction may be predictive.
  • While many interventions available, no consensus
    as to best practice.
  • Targeting interventions to populations at risk
    likely to have most benefit.
  • 21st century ethical bereavement research can be
    conducted paradigm shift in attitudes toward
    research with the bereaved.

  • Cook AS. Ethical Issues in Bereavement Research
    an overview. Death Studies. 19 103-122, 1995.
  • Forte et al. Bereavement Care interventions a
    systematic review. BMC Palliative Care. 33,
  • Hynson JL. Research with bereaved parents a
    question of how not why. Palliative Medicine, 20
    805-811 2006.
  • Oxford Textbook of Palliative Medicine, Third
    Edition. Eds. Doyle D, Hanks G, Cherny N, Calman
    K. Oxford University Press, 2005. Parkes CM.
    Guidelines for conducting ethical Bereavement
    research. Death Studies, 19 171-181 1985.
  • Steeves R. Ethical Considerations in Research
    with bereaved families. Family and Community. 23
    (4) 75-83 2001.
  • Stroebe M. Bereavement Research methodological
    issues and ethical concerns. Palliative Medicine.
    17 235-240 2003.
  • Report on Bereavement and Grief Research. Center
    for the Advancement of Health. Death Studies. 28
    491-575 2004.

Thank You!
  • Discussion?