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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

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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

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

Timing of Grief

GRIEF

GRIEF

GRIEF

DEATH

DEATH

DEATH

GRIEF

DEATH

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.

Downar et al. Submitted for publication.

Predicting a Severe Grief Reaction

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