Bereavement Interventions:
evidence and ethics
Margaret M. Eberl, MD, MPH
June 16th, 2008
Overview
Definitions.
Types of grief.
Risk factors for complicated grief.
Interventions: pre and post-bereavement.
Review of the Evidence.
Ethical considerations.
Future directions.
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.
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.
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.”
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.
Normal Grief
Somatic distress.
Emotional distress.
Physical responses.
Behavioral changes.
Physiologic changes.
Time Course of Bereavement
Sequence of phases:
1)
2)
3)
4)
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,
creativity.
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.
Clinical Presentations of
Complicated Grief*
Category
Features
Inhibited/Delayed grief
Avoidance postpones expression
Chronic grief
Perpetuation of mourning long-term
Traumatic grief
Unexpected and shocking form of death
Depressive d/o
Both major and minor depressions
Anxiety d/o
Insecurity/relational problems
Alcohol and
SA/dependence
Excessive use of substances impairs adaptive
coping
PTSD
Persistent, intrusive images with cues
Psychotic d/o
Manic, severe depressive states, and
schizophrenia
Oxford textbook of Palliative Medicine, Third Edition, 2005.
Risk Factors for Complicated
Grief*
Category
Range of Circumstances
Nature of the death
Untimely 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 Overly dependent, ambivalent.
deceased
Family and support network
Dysfunctional family, isolated,
alienated.
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 bereavement.
Screening families on admission to PC (FRI).
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.
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 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.
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 benefit.
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.
Five Factors Impeding
Progress.
1) Excessive theoretical heterogeneity.
2) Large inter-study variability.
3) Inadequate reporting of intervention
4)
5)
procedures.
Few published replication studies.
Methodologic flaws of study design.
Forte et al, “Bereavement care interventions: a systematic review.”
BMC Palliative Care. 3:3, 2004.
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
Format
Pop.
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.
Group
Adult Grief, coping.
Senior Depression, socialization.
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
analysis.
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
researcher’s 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, 2004).
Choice of comparison group is difficult
(Bereaved? Non-bereaved?).
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.
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 Care.
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.
21st century: ethical bereavement research can
be conducted; paradigm shift in attitudes
toward research with the bereaved.
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.
Thank You!
Discussion?