Who needs bereavement support?* James Downar, MDCM, MHSc (Bioethics) Critical Care and Palliative Care, UHN and Sinai Health System Associate Professor, Dept. of Medicine, University of Toronto [email protected] *Answer: Maybe you
Who needs bereavement support?*
James Downar, MDCM, MHSc (Bioethics)Critical Care and Palliative Care, UHN and Sinai Health System
Associate Professor, Dept. of Medicine, University of Toronto
*Answer: Maybe you
Disclosures/Support
• Associated Medical Services, Inc. Phoenix Fellowship
• Grant support• Boehringer-Ingeheim (Canada)
• Speaker fees/honoraria, Advisory Board• Medtronic Inc.
• Novartis
• Joule Inc.
Definitions
• Loss• Losing someone/something that is valued
• Bereaved: the condition of having lost something
• Grief• Emotional response to the loss
• Normal grief
– Life holds meaning
– Sense of self, self-efficacy
– Trust in others, ability to invest in new relationships
Severe Grief Reaction
• 2-3% of population• Parents or life partner
• Sudden, violent death
• Women >60
• Social dysfunction
• Sleep disorder, substance abuse
• Increased use of health resources
• Risk of cancer, cardiovascular disease
Prigerson et al. JAMA 2001;286:1369-76.Cuthbertson et al. Crit Care Med 2000;28:1196-1201Shear. NEJM 2015;372:153-60.
Severe Grief Reaction
• Intense, persistent yearning, sadness
• Rumination
• Avoidance, disturbing emotional reactivity to reminders of loss
• Diminished sense of self, meaning
• Withdrawal/Mistrustful
• >6 months
Shear. NEJM 2015;372:153-60.
Diagnosis
• Controversial addition to DSM-V
– Pathologizing a condition
• Inventory of Complicated Grief• Complicated Grief
• Prolonged Grief Disorder
• Persistent Complex Bereavement-Related Disorder (DSM-V)
• ICG “Score” >25
• Brief Grief Questionnaire
• Overlap with other conditions- PICS-F
Shear. NEJM 2015;372:153-60.Davidson et al. Crit Care Med 2012;40:618-24.
Severe Grief Reaction in ICU
• Large proportion lost to follow-up
• Single-centre studies (30-40 relatives)• Complicated Grief 3-5%
• CG symptoms (subthreshold) 22-25%
• Low rate of dissatisfaction with care
• Multicentre study (282 relatives)• CG symptoms- 52%
• Large overlap with PTSD, Major Depression
Siegel et al. CCM 2008;36:1722-8.Downar et al. JCC 2014;29:311e9-e16.Kentish-Barnes et al. Eur Resp J;2015:45:1341-52.
Results - Symptoms
• ICG Score at 6M most correlated with 3M (p<0.0001):
• IES Score, Brief Grief Score, PHQ-9, SDI Score
• ICG Score at 6M not correlated with:
• Age, sex, prior depression, prior medication for depression
Domain 3M
(Screen)
6M
(Outcome)
Complicated Grief 38% (BGQ >4) 19% (ICG >25)
PTSD (IES-r >32) 23% 20%
Depression (PHQ-9 >9) 19% 21%
Social Distress (SDI >9) 17% 15%
Predicting a Severe Grief Reaction
Downar et al. Submitted for publication.
LOSS
RUMINATIONAVOIDANCE/
WITHDRAWAL
REORGANIZATION/HEALTHY ADAPTATION TO NEW REALITY
SEVERE GRIEF REACTION (SGR)Psychological morbiditySocial/Functional ImpairmentPhysical Illness
EXPOSUREControlled exposure to
avoided situations/reminders
RESTRUCTURINGReconstructing an understanding of
loss/grief
BEHAVIOURAL ACTIVATION
Re-establish social interactions, engagement
GRIEF
Treatment
• “Complicated Grief Treatment”
– Focused, Structured Psychotherapy
– Restoration of function
• Enthusiasm for future, making plans
– Loss
• Think about death without intense anger, guilt, anxiety
– Superior to interpersonal psychotherapy
• 51-69% vs. 28-32%
Mancini et al. Curr Opin Psychiatry 2012;25:46-51.Wittouck et al. Clin Psychol Rev 2011;31:69-78.Shear. NEJM 2015;372:153-60.
Treatment
• Group/Internet-based therapy
• Pharmacotherapy poorly studied
– Antidepressants– Adherence to psychotherapy
– Response to psychotherapy
– Benzodiazepines– No evidence of response
• Prevention ineffective• High-risk subgroups?
Simon. JAMA 2013;310:416-23. Wittouck et al. Clin Psychol Rev 2011;31:69-78.Bui et al. Dialogues Clin Neurosci 2012;14:149-57. Currier et al. Psychol Bull 2008;134:648-61.Mancini AD. Curr Opin Psychiatry.2012;25(1):46-51. Nappa et al. BMC Pall Care 2016;15:58
• Pilot study of facilitated storytelling (n=32)• 1-2h in person/by phone, 4 weeks post-death
• Trained SW to elicit story of illness, decision-making and aftermath using probes and empathic statements
• FMs who received the intervention…• More often felt “better/much better” (94% vs. 69%)
• Rarely reported intervention “burdensome” (6%)
Barnato et al. Crit Care Med 2017;45(1)
• RCT of condolence letter at 2 weeks (n=242)
• FMs who received letter…• No difference in depression, grief symptoms at 1m
• Higher HADS score at 6m (13 vs. 10, p=0.04)
• Higher prevalence of depression (37% vs. 25%, p=0.05)
• Higher prevalence of PTSD (52% vs. 37%, p=0.03)
• Letter well-received (40%)
• Raised expectations?
Kentish-Barnes et al. Int Care Med 2017;43:473-84
Barriers to support
• 28% of US ICUs offer bereavement support
• 16% of ICU clinicians follow up after a death• No comfort, skill or time
• Loss to follow-up
• No correlation between need and desire for follow-up
• Timing and manner of approach
McAdam and Erikson. Am J Crit Care 2016;25:110-7.Downar et al. J Crit Care 2014;29:311e9-e16.Kentish-Barnes et al. Eur Resp J 2015:45:1341-52.Downar et al. Submitted for publication.
What can we do?
• Early- prevention, not treatment
• Targeted
• Scalable
• Multi-component
• Education
– Staff
– Family Members
• Letter to FMs
• Meeting for social/informational needs
• Targeted intensive therapy (storytelling)
LOSS
RUMINATIONAVOIDANCE/
WITHDRAWAL
REORGANIZATION/HEALTHY ADAPTATION TO NEW REALITY
SEVERE GRIEF REACTION (SGR)Psychological morbiditySocial/Functional ImpairmentPhysical Illness
EXPOSUREControlled exposure to
avoided situations/reminders• FM Education and Letter of
condolence (#2)• Meeting with care team (#3)• Narrative intervention (#4)
RESTRUCTURINGReconstructing an
understanding of loss/grief• Staff Education (#1)• FM Education (#2)• Meeting with care team (#3)• Narrative intervention (#4)
BEHAVIOURAL ACTIVATION
Re-establish social interactions, engagement
• FM Education (#2)• Meeting with care team (#3)• Narrative intervention (#4)
Conceptual model of approach to bereavement support and the role of the proposed interventions.
GRIEF