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 james.downar@utoronto.ca *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 Grief Losing someone/something that is valued Bereaved: the condition of having lost something Emotional response to the loss Normal grief Life holds meaning Sense of self, self-efficacy Trust in others, ability to invest in new relationships
Timing of Grief DEATH GRIEF DEATH GRIEF DEATH GRIEF DEATH GRIEF
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;28:1196-1201 Shear. 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.
Predicting a Severe Grief Reaction Domain 3M (Screen) 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: 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% Age, sex, prior depression, prior medication for depression Downar et al. Submitted for publication.
Predicting a Severe Grief Reaction Downar et al. Submitted for publication.
LOSS RUMINATION GRIEF AVOIDANCE/ WITHDRAWAL SEVERE GRIEF REACTION (SGR) Psychological morbidity Social/Functional Impairment Physical Illness RESTRUCTURING Reconstructing an understanding of loss/grief EXPOSURE Controlled exposure to avoided situations/reminders BEHAVIOURAL ACTIVATION Re-establish social interactions, engagement REORGANIZATION/HEALTHY ADAPTATION TO NEW REALITY
Treatment Complicated Grief Treatment Focused, Structured Psychotherapy Restoration of function Loss Enthusiasm for future, making plans 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 RUMINATION GRIEF AVOIDANCE/ WITHDRAWAL SEVERE GRIEF REACTION (SGR) Psychological morbidity Social/Functional Impairment Physical Illness RESTRUCTURING Reconstructing an understanding of loss/grief Staff Education (#1) FM Education (#2) Meeting with care team (#3) Narrative intervention (#4) EXPOSURE Controlled exposure to avoided situations/reminders FM Education and Letter of condolence (#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) REORGANIZATION/HEALTHY ADAPTATION TO NEW REALITY Conceptual model of approach to bereavement support and the role of the proposed interventions.