Time Will Tell: Pathways to Prolonged Grief, Pathways to Acceptance Holly G. Prigerson, PhD Irving Sherwood Wright Professor of Geriatrics Professor of Sociology in Medicine Weill Cornell Medical College Director, Center for Research on End-of-Life Care Cornell University AFTCC (French Association of Cognitive and Behavioral Therapy) Paris, France Title: Time Will Tell: Pathways to Prolonged Grief, Pathways to Acceptance Location: La Maison de la Chimie, 28 Rue Saint-Dominique, 75007 Paris, France Date: December 12, 2014 Presenter: Holly G. Prigerson, PhD; Director, Center for Research on End-of-Life Care; Cornell University; Irving Sherwood Wright Chair in Geriatrics; Professor of Sociology in Medicine; Weill Cornell Medical College “Is my grief normal?” “Am I going crazy?” “Do I have a problem, and if yes, what should be done about it?” These are the questions bereaved individuals ask themselves, their loved ones wonder, and questions that clinicians often struggle to answer and address. I will present data from research that I have conducted which has provided much of the evidence supporting the inclusion of Prolonged Grief Disorder (PGD) as a new mental disorder in the ICD-11, and which is proposed for future inclusion in DSM-5. This will include evidence showing what the symptoms of PGD are and how they differ from symptoms of bereavement-related depression and anxiety. I will present data on the etiology of PGD and identify who is at risk. I will discuss data on normal grief and show how its course differs from that of clients who suffer from PGD. Data on the stages of grief resolution will be presented. Then I will present findings on outcomes of PGD – in essence, these data provide the rationale for why clinicians should care about diagnosing and treating PGD in the first place. I end with a discussion of the core therapeutic issues in the treatment of PGD. I will discuss the “who,” “what,” “when” and “how” of intervening to help bereaved individuals with and without PGD. I will briefly discuss “Healthy Experiences After Loss” (HEAL) which is an online CBT-based intervention that has demonstrated dramatic efficacy for preventing and reducing symptoms of PGD following a loved one’s death from cancer. Cultural considerations in the expression, diagnosis and treatment of grief will be open for discuss and questions on PGD diagnosis and treatment will be entertained. References: Prigerson HG, Horowitz MJ, Jacobs SC, Parkes CM, Aslan M, Goodkin K, Raphael B, Marwit SJ, Wortman C, Neimeyer RA, Bonanno GA, Block SD, Kissane D, Boelen P, Maercker A, Litz BT, Johnson JG, First MB, Maciejewski PK. Prolonged grief disorder: Psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Med. 2009 Aug;6(8):e1000121. doi: 10.1371/journal.pmed.1000121. Epub 2009 Aug 4.   Prigerson HG, Shear MK, Jacobs SC, Reynolds CF 3rd, Maciejewski PK, Davidson JR, Rosenheck R, Pilkonis PA, Wortman CB, Williams JB, Widiger TA, Frank E, Kupfer DJ, Zisook S. Consensus criteria for traumatic grief. A preliminary empirical test. Br J Psychiatry. 1999 Jan;174:67-73. Litz BT, Schorr Y, Delaney E, Au T, Papa A, Fox AB, Morris S, Nickerson A, Block S, Prigerson HG. A randomized controlled trial of an internet-based therapist-assisted indicated preventive intervention for prolonged grief disorder. Behav Res Ther. 2014 Oct;61:23-34. doi: 10.1016/j.brat.2014.07.005. Prigerson HG, Bierhals AJ, Kasl SV, Reynolds CF 3rd, Shear MK, Newsom JT, Jacobs S. Complicated grief as a disorder distinct from bereavement-related depression and anxiety: a replication study. Am J Psychiatry. 1996 Nov;153(11):1484-6. Prigerson HG, Bierhals AJ, Kasl SV, Reynolds CF 3rd, Shear MK, Day N, Beery LC, Newsom JT, Jacobs S. Traumatic grief as a risk factor for mental and physical morbidity. Am J Psychiatry. 1997 May;154(5):616-23.

Presentation Overview “Is this grief reaction normal Presentation Overview “Is this grief reaction normal?” “Am I going crazy?” “Will I feel better and, if so, when?” “Is this grief a problem, and if yes, What can be done about it?”

Presentation Overview These are common questions that: bereaved people ask themselves their family members wonder clinicians often struggle to answer and address They are also the questions you should be able to answer after this talk

At the end of this talk you should know how to: Distinguish normal grief from PGD, & specifically how to a. diagnose PGD 2 Know who is at risk for PGD 3. Know outcomes of PGD – why clinicians should care Understand core therapeutic issues in PGD

Putting Bereavement in Context Bereavement is a normal, common life event ~ 52 million people die/year (or 142,000/day) worldwide That is, almost as many people die per year as the entire population of France   100% of us will die; risk increases with age Not a rare or typically unnatural event!

What is the normative circumstance of bereavement? Despite disproportionate media attention, most deaths do NOT involve younger people dying traumatic deaths Most US deaths occur in later life 75% deaths occur in people over 65 yrs 50% women over age 65 are widows Only 6% US deaths from unnatural causes (1.5% motor vehicle; 1.2% firearms); 94% natural causes

Epidemiology of bereavement in France 66 million is population of France; 8.5/1000 death rate= 561,000 deaths/yr in France ± 3 survivors ±1.7 million bereaved survivors/yr in France Most will come to accept the loss over time (90%); ± 10% will not ± 170,000 bereaved people/year in France with PGD

Question: How do you know if a grief reaction is normal? Answer: Time will tell. Time … Heals most wounds  path of acceptance ~90% of bereavement reactions are “normal” Most people gradually adjust/accommodate to the loss

But time …doesn’t heal all wounds  path to Prolonged Grief Disorder (PGD) ~10% will follow an unending path of sorrow These are the people who may benefit from help

For typical bereavement (e. g For typical bereavement (e.g., late-life widowhood after natural death) … Most bereaved people accept death, even initially Acceptance increases with time from loss On scale where: 1= < 1/mo; 2= monthly; 3= weekly; 4=daily; 5= > 1X/day

Maciejewski, Zhang, Block, Prigerson JAMA 2007 Absolute levels Maciejewski, Zhang, Block, Prigerson JAMA 2007

Maciejewski, Zhang, Block, Prigerson JAMA 2007 comparison of peak for each indicator when rescaled 0-1 Maciejewski, Zhang, Block, Prigerson JAMA 2007

Grief is wanting something you love but can’t have Prigerson, Maciejewski BJP 2010 Grief is wanting something you love but can’t have Acceptance is letting go of wanting/craving, is associated with declining emotional distress over the loss

Grief Resolution for those who do and do not meet criteria for PGD

PGD reflects chronic distress, but is it a psychiatric disorder? Phenomenology: Symptoms distinct from other DSM-5 and ICD-11 disorders (MDD, PTSD) Risk Factors: Distinctive risk factors/etiology Outcomes: PGD independently associated with distress & disability Response to Treatment: PGD unresponsive to certain antidepressant treatments

Prolonged Grief Disorder Differs from Other Psychiatric Disorders . . . Phenomenologically a. Forms separate, unidimensional symptom set b. Relatively low rate of diagnostic overlap with competing diagnoses (e.g., MDD, GAD, PTSD)

Drawn->reminders .71 .15 -.12 Feel presence .82 -.02 -.08 Symptoms PGD Dep Anx depressed .10 .71 -.31 blues .07 .66 -.16 anxious -.18 -.22 .52 nervous -.13 -.22 .88 Yearn .62 .21 .02 Intrusive thoughts .68 .26 -.10 ID symptoms .77 -.03 .02 Drawn->reminders .71 .15 -.12 Feel presence .82 -.02 -.08 __________________________________________ Egs: Prigerson et al. AJP, 1996, replication of AJP 1995; Boelen 2003, 2005; Phillip Dodd Ireland learning disabled; Kiely caregivers 2008; Jacobsen advanced cancer patients 2008 Dutch, Canadian, Spanish, Italian, Norwegian, suicide bereaved, traumatically bereaved

ROC Analysis of Alternative Diagnostic Algorithms for PGD

Diagnostic accuracy absent other mental disorders (MDD, PTSD and GAD) (N=234)

Diagnostic accuracy in the context of other mental disorders (MDD, PTSD and GAD) (N=34)

Criteria for Prolonged Grief Disorder Proposed for DSM-5 & ICD-11 (PG-13 Scale maps onto these criteria) A. Loss: Loss of something loved B. Separation Distress: to a daily, distressing, or disruptive degree: 1.  Yearning, pining longing for the lost person 2. Intense feelings of emotional pain, sorrow, or pangs of grief

(5+/9 daily or to distressing or disruptive degree) C. Cognitive, Emotional, Behavioral Symptoms: (5+/9 daily or to distressing or disruptive degree) 1.      Confusion about one’s identity ( role in life or diminished sense of self; feeling that a part of oneself has died) 2.      Difficulty accepting the loss 3.      Avoidance of reminders of the reality of the loss 4.      Inability to trust others since the loss 5.      Bitterness or anger related to the loss 6.      Difficulty moving on with life (eg, making new friends, pursuing interests); feeling stuck in grief 7.      Numbness (absence of emotion) since the loss 8.      Feeling that life is unfulfilling, empty, and meaningless since the loss 9.      Feeling stunned, dazed or shocked by the loss

Diagnostic Criteria for PGD D. Duration: At least 6 months elapsed since the loss E. Impairment: The above symptomatic disturbance causes clinically significant distress or impairment in social, occupational, or other important areas of functioning (e.g., domestic responsibilities)

Reliability & Discriminant Validity (N=291) PGD Dx Cronbach’s alpha PGD Phi Internal Consistency 0.94 Depression 0.36 PTSD 0.31 GAD 0.17 MDD, PTSD, GAD w/ PGD 15/34 (44%) MDD, PTSD, GAD w/o PGD 19/34 (56%) Paul – factor loadings? 1 factor for new criteria?; different 10 with any SCID PGD w/o MDD, PTSD, GAD 7/22 (32%)

Specific Risk Factors/Clinical Correlates for PGD Sociodemographics: Kinship relationships -- parents/spouses * (*= not MDD) African Americans * Biomarkers: No shortened REM latency * (EEG) Brain imaging * (f/MRI) –nucleus accumbens; smaller brain volume Psychosocial Factors: Pre-loss PGD symptomatology Dependency on deceased * Parental loss, abuse or serious neglect in childhood Parental control Separation anxiety in childhood * Preoccupation with relationships; need for approval*(insecure attachments) Preference for lifestyle regularity * - averse to change Lack of preparation for the death * Hospitalized (compared with home hospice) deaths*

Cognition, Structural Brain Changes and Complicated Grief Cognition, Structural Brain Changes and Complicated Grief. A Population-Based Study Study: Rotterdam Study “no grief” (control group, N=4731), “normal grief” (N=615), “complicated grief” (N=155) Result: CG participants had lower scores for Letter-digit test, Word fluency test, and smaller brain volumes than controls Conclusion: CG participants performed poorly on cognitive tests and had a smaller total brain volume. This suggests there is a neurological correlate of complicated but not of normal grief in the elderly Saavedra Pérez …Tiemeier Psychological Medicine 2014

Craving love? Enduring grief activates brain's reward center Study: Bereaved women (11 CG, 12 NCG) fMRI scan of pictures of deceased Result: Only those with PGD showed reward-related activity in nucleus accumbens (NA). This NA cluster was positively correlated with self-reported yearning, but not with time since death, participant age, or positive/negative affect Conclusion: Shows attachment activates reward pathways. For those with PGD, reminders of the deceased still activate neural reward activity, which may interfere adapting to the loss in the present Something pleasurable that may make grief resolution akin to withdrawal of addiction. What creates this craving?  O’Connor MF et al. Neuroimage 2008

Dependent Relationships  Poor Bereavement Adjustment Close, dependent, harmonious relationships PGD (vanDoorn, Johnson, Carr, Lai)

Caregiver’s Relationship to Dying Patient and Risk for PGD vs. MDD Marital Quality PGD r p feelings of security .47 .005 dependency on partner .43 .001 confiding in partner .43 .001 active emotional support .60 .0001 combo security, confiding, .69 .0001 support Overall Quality of Marriage .39 .01 Security-increasing marriages and insecure attachment styles put spouses at risk for PGD Van Doorn et al. 1998

Childhood Separation Anxiety & Psychiatric Disorders in Bereaved Persons   Dx OR a 95% CI_______ PGD 4.20 (1.42-12.42)** MDD 1.42 (0.49-4.16) PTSD 1.20 (0.29-5.01) GAD 2.18 (0.43-11.19)___ a Controlling for age, sex, race, childhood abuse or neglect, prior psych diagnosis; N=290 Vanderwerker, Jacobs, Parkes, Prigerson JNMD 2006

Parental Control Prolonged Grief Disorder Dyadic Adjustment Dependency on Deceased 0.16 0.43 Bereavement Dependency Parental Control 0.19 Prolonged Grief Disorder Dyadic Adjustment .07 indirect effect of parental control on PGD; vs .19 direct effect. Still dependency greatest predictor DAS affection, cohesion, consensus, satisfaction -0.03 0.06 Johnson JG, Zhang B, Greer JA, Prigerson HG. JNMD 2007

Preparedness for the Death Reduces PGD Risk Retrospectively Prepared caregivers 2.4 times less likely to have PGD (Barry 2003) ; 2.9 times among bereaved Alzheimer’s patient caregivers (Hebert, 2006) Prospectively Does preparation for the death promote bereavement adjustment? longer time from dx to death  less grief (Maciejewski et al. JAMA 2007) EOL discussionacceptancehospital deathPGD (Wright et al. JAMA; JCO 2010) Emotional or cognitive acceptance == don’t know (adjusting for age, sex, months since the loss, and any prior history of psychiatric illness)

Health Consequences of Prolonged Grief Disorder (PGD) or Why should clinicians care about PGD?

PGD at 6 months Predicts Impairment at 13 Months Family Health Project PGD at 6 Months 13 months Outcome a OR Hospitalizationb 1.32 Major Health Event 1.16 (heart attack, cancer, stroke) Accidents 1.27 Altered Sleep 8.39 Smoking c 16.7 Eating 7.02 High Blood pressure 1.11 Controlling for pre-loss outcome measure, depression, anxiety, age and sex. At 25 mos: cancer, cardiac probs, alcohol probs, suicidality

Yale Bereavement Study Disability associated with 6-12 mo PGD for those w/o MDD, PTSD, GAD 13-24 months post-loss PGD Yes No MDD, PTSD or GAD 55.9% 44.1% Suicidal Ideation 30.8% 10.0 Functional Disability 72.7 35.0 Low Quality of Life 50.0 14.7 RR 8.86*** 5.61*** 2.01** 5.70*** Kappa with former diagnosis is .70

Disability of PGD by Temporal Subtype Outcome RR for Outcome associated with … 13-24 mo Acute (15/172) Delayed (6/172) Chronic (12/172) Delayed or Chronic (28/242) MDD, PTSD or GAD 1.54 3.86 11.58*** 10.19*** Disturbed Sleep 3.09 4.59** Suicidal Ideation 1.97 4.93*** 3.29* 4.44*** Functional Disability 0.51 1.40 1.64** Low Quality of Life 0.76 3.78*** 2.58* 3.17***

Population-based sample of 449 Swedish parents who lost a child to cancer 4 to 9 years earlier (Kreicbergs et al.JCO, 2008)

Evidence-based Recommendations for Bereavement Interventions: Why, Who, When, & What What: what interventions are most effective, for whom? When: how soon to intervene after loss? Why: do benefits of intervening outweigh the costs? Who: which bereaved should be targeted for intervention?

Why Intervene? On Whom to Intervene? Vast majority fine and gradually . . . Move from very upset, disturbed to diminished distress, eventual adjustment Questionable whether would benefit from intervention Significant minority not fine and time won’t heal; At risk for enduring distress and dysfunction (“eternal path of sorrow”) Interventions improve their quality of life; potentially reduce adverse outcomes: Social withdrawal, suicidality, alcohol abuse, high blood pressure, functional disability, loss of productivity

When to intervene? Really Early Intervention: Pre-loss in caregivers who are very dependent and have high levels of pre-loss grief (PG-12) Benefits of preparation for the death: Promotes accept of death, reduces grief Opportunity to say goodbye Fewer regrets Result in better quality of death better bereavement outcomes Litz’ Healing Experiences After Loss (HEAL) Litz suggests early post-loss period a time of re-establishing healthy routines Online, CBT-based preventive intervention Early intervention speedier rate of recovery

HEAL (Healthy Experiences After Loss) PI: Litz; NIMH R-34 indicated prevention Internet-based, professional-assisted Online, CBT-based preventive intervention Wait-list controlled RCT Targeting bereaved at the Dana-Farber Cancer Institute

HEAL’s Approach to Prevention 18 logons 6-weeks Modules: promote self-care, accommodation of loss, enhanced self-efficacy, pleasurable activities, reattachment Web interface text-driven but interactive Homework-based approach Professional oversight

HEAL Outcome Data PGD Caseness Findings Time 1 Time 2 Waitlist Immediate M SD Time X Condition d PG-13 34.99 7.46 34.39 8.11 32.84 9.11 24.70 8.33 F(1, 74.10) = 29.04** 1.19 BDI 37.65 8.01 38.08 8.20 36.15 8.67 30.80 7.60 F(1, 72.63) = 14.19** .79 PCL 38.33 11.28 39.73 11.99 37.31 12.74 28.11 10.06 F(1,71.87) = 27.68** 1.02 BAI 31.52 7.52 35.22 11.16 30.31 6.78 29.18 9.39 F(1,73.99) = 10.68* .53 Note. *p<.01. **p<.001. PGD Caseness Findings   n χ2 p Pre-test 25 ----- Post-test 6 10.129 0.001 6-week follow-up 5 11.621 3-month follow-up* 2 8.142 0.004 *comparison for the immediate group

Effective Approaches Cognitive restructuring techniques help the griever to identify problematic aspects of the loss and to revise their understanding of them Exposure techniques typically involve imaginal components, such as talking with deceased, and in-vivo components, such as confronting avoidance of places or people associated with the loss, and reliving the moment when witness or learned of the death – tapping “hot” emotions

What Interventions Work? CBT-based Psychotherapies Complicated Grief Therapy (Shear, 2005, 2014) Psycho-ed about normal and CG Dual process of adaptive coping – adjust to loss & restoration of satisfying life (goals defined with motivational enhancement) Model: Grief is a trauma, people avoid trauma; exposure-based therapy reduces/desensitizes distress re: trauma Exposure for traumatic avoidance – imagined conversation with deceased; retelling the death scene Prolonged Grief Therapy (Bryant, 2014) CBT with exposure therapy where patients relive the experience of a death of a loved one, resulted in greater reductions in measures of prolonged grief disorder (PGD) than CBT alone Boelen 2007; O’Donnell Tanzanian orphans 2014; Rosner German outpatients 2014 Eclectic, exposure-based

Bryant “Treating PGD: A Randomized Clinical Trial” “optimal gains with PGD patients are achieved when the emotions associated with the memories of the death and the sequelae of the loss are fully accessed. ... Despite the distress elicited by engaging with memories of the death, this strategy does not lead to aversive responses. In light of evidence that many interventions provided to grieving people are not empirically supported, the challenge is to foster better education of clinicians through evidence-supported interventions to optimize adaptation to the loss as effectively as possible," Bryant “Treating PGD: A Randomized Clinical Trial” JAMA Psychiatry 2014

How to distinguish normal grief from PGD Diagnose PGD Conclusions Now (I hope) you know: How to distinguish normal grief from PGD Diagnose PGD Tell if someone is at risk for PGD Know outcomes of PGD Understand core therapeutic issues in PGD Our time together has come to a close. Should you wish to contact me, my email address is: hgp2001@med.cornell.edu