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

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

3. Definitions 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.

4. 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 grief…encompasses changes in external circumstances… including alterations in relationships and living arrangements. Report on Grief and Bereavement Research. Center for the Advancement of Health, 2004.

5. Grief 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.”

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

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

8. Time Course of Bereavement Sequence of phases: 1) Initial numbness, sense of unreality. 2) Waves of distress occur as bereaved suffer intense pining, yearning. 3) Disorganization emerges as loneliness sets in. 4) Re-organization, recovery. Personal growth, creativity.

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

10. Clinical Presentations of Complicated Grief* CategoryFeatures Inhibited/Delayed griefAvoidance postpones expression Chronic griefPerpetuation of mourning long-term Traumatic griefUnexpected and shocking form of death Depressive d/oBoth major and minor depressions Anxiety d/oInsecurity/relational problems Alcohol and SA/dependence Excessive use of substances impairs adaptive coping PTSDPersistent, intrusive images with cues Psychotic d/oManic, severe depressive states, and schizophrenia Oxford textbook of Palliative Medicine, Third Edition, 2005.

11. Risk Factors for Complicated Grief* CategoryRange of Circumstances Nature of the deathUntimely within life-cycle; sudden, unexpected, traumatic, stigmatized. Strengths and vulnerabilities of the carer/bereaved Past h/o of psychiatric d/o, personality/coping style, cumulative experience of losses. Nature of the relationship w/ the deceased Overly dependent, ambivalent. Family and support networkDysfunctional family, isolated, alienated. Oxford textbook of Palliative Medicine, Third Edition, 2005.

12. 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 bereavement. Screening families on admission to PC (FRI).

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

14. 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.

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

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

17. 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.”

18. 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.

19. 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 benefit.

20. 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. 3:3, 2004.

21. Five Factors Impeding Progress. 1) Excessive theoretical heterogeneity. 2) Large inter-study variability. 3) Inadequate reporting of intervention procedures. 4) Few published replication studies. 5) Methodologic flaws of study design. Forte et al, “Bereavement care interventions: a systematic review.” BMC Palliative Care. 3:3, 2004.

22. Excessive theoretical homogeneity Distinct groups of investigators working within disparate theoretical frameworks. Each vie for attention.

23. 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.

24. Ex. Psycho-dynamic Bereavement Interventions FormatPop.Key Outcome Measures Individ.Senior Number of office visits; types of illnesses. Individ.Senior Mental distress, depression, hopelessness. Individ.Adult General health. Individ.Adult Avoidance/intrusion, depression, anxiety, total pathology, stress-intrusion, neurotic sx. Individ.Adult Depression, grief, phobic avoidance, hostility/anger/guilt, attitude to self/deceased, avoidance, physical sx, compulsive behavior, social adjustment. Individ.Adult Grief, coping. GroupSenior Depression, socialization.

25. Inadequate reporting of intervention procedures Very few reported intervention studies describe intervention procedures and implementation in sufficient detail.

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

27. 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 analysis.

28. Ethical Issues “there are norms of propriety that prevent the systematic gathering of data from recently bereaved persons…” Rosenblatt, Walsh & Jackson 1976

29. 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 researcher’s choice of topics (Seiler and Murtha, 1980).

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

31. 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.

32. 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, 2004). Choice of comparison group is difficult (Bereaved? Non-bereaved?).

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

34. 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?

35. 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 Care.

36. Summary There is a spectrum of normal grief, very individualized. ~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. 21 st century: ethical bereavement research can be conducted; paradigm shift in attitudes toward research with the bereaved.

37. References 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. 3:3, 2004. 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.

38. Thank You! Discussion?