Time Will Tell: Pathways to Prolonged Grief,

Pathways to AcceptanceHolly G. Prigerson, PhDIrving Sherwood Wright Professor of Geriatrics

Professor of Sociology in MedicineWeill Cornell Medical College

Director, Center for Research on End-of-Life CareCornell University

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 beable to answer afterthis talk

At the end of this talk you should know how to:

1. 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

4. 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., 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

Maciejewski, Zhang, Block, Prigerson JAMA 2007

1.0

2.0

3.0

4.0

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0 2 4 6 8 10 12 14 16 18 20 22 24

Time From Loss (months)

Indi

cato

r R

atin

g

Disbelief

Yearning

Anger

Sadness

Acceptance

Grief

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

Prigerson, Maciejewski BJP 2010

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

Grief score

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Months from the death

0 10 20 30 40 50 60

0 0 0

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0 0 0 0 0

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1 1 1 1 1

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1

Prolonged Grief

Not Prolonged Grief

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)

Symptoms PGD Dep Anxdepressed .10 .71 -.31blues .07 .66 -.16anxious -.18 -.22 .52nervous -.13 -.22 .88Yearn .62 .21 .02Intrusive thoughts .68 .26 -.10ID symptoms .77 -.03 .02Drawn->reminders .71 .15 -.12Feel 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

0.00

0.20

0.40

0.60

0.80

1.00

0.80 0.85 0.90 0.95 1.00

Specificity

Se

ns

itiv

ity

N=5, k=3

N=6, k=3

N=6, k=4

N=7, k=3

N=7, k=4

N=7, k=5

N=8, k=3

N=8, k=4

N=8, k=5

N=9, k=4

N=9, k=5

N=9, k=6

Optimal

ROC Analysis of Alternative Diagnostic Algorithms for PGD

CGD (1997)

TG (1999)PGD (2009)

CG (2011)

DSM-5 (2013) ICD-11 (2013)

60.0%

70.0%

80.0%

90.0%

100.0%

60.0% 70.0% 80.0% 90.0% 100.0%

Sensitivity

Sp

ecif

icit

y

Diagnostic accuracy absent other mental disorders (MDD, PTSD and

GAD) (N=234)

CGD (1997)

TG (1999)

PGD (2009)

CG (2011)

DSM-5 (2013)

ICD-11 (2013)

30.0%

40.0%

50.0%

60.0%

70.0%

80.0%

90.0%

100.0%

30.0% 40.0% 50.0% 60.0% 70.0% 80.0% 90.0% 100.0%

Sensitivity

Sp

ecif

icit

y

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

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 loss4.      Inability to trust others since the loss5.      Bitterness or anger related to the loss6.      Difficulty moving on with life (eg, making new friends, pursuing

interests); feeling stuck in grief

7.      Numbness (absence of emotion) since the loss8.      Feeling that life is unfulfilling, empty, and meaningless since the loss9.      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)

 

PGD Dx Cronbach’s alpha

PGD Phi

Internal Consistency 0.94

Depression 0.36

PTSD 0.31

GAD 0.17

PGD Dx

MDD, PTSD, GAD w/ PGD 15/34 (44%)

MDD, PTSD, GAD w/o PGD

19/34 (56%)

Reliability & Discriminant Validity (N=291)

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. 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 stylesput spouses at risk for PGD

MDD

r p.15 ns.06 ns.02 ns.18 ns.23 ns

.03 ns

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

BereavementDependency

Dependency on Deceased

Dyadic

Adjustment

Prolonged

Grief Disorder

Parental Control

-0.03

0.19

0.16 0.43

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 discussionacceptancehospital deathPGD (Wright et al. JAMA; JCO 2010)

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 1.32Major 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

13-24 months post-loss

PGD Yes

PGD 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***

Yale Bereavement Study

Disability associated with 6-12 mo PGD for those w/o MDD, PTSD, GAD

Disability of PGD by Temporal Subtype

Outcome RR for Outcome associated with …

13-24 moAcute (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 11.58***

3.86 4.59**

Suicidal Ideation

1.97 4.93*** 3.29* 4.44***

Functional Disability

0.51 1.54 1.40 1.64**

Low Quality of Life

0.76 3.78*** 2.58* 3.17***

0

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0.6

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1

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1.4

Controls A lot/completely No/Little*

Mea

n s

ick

lea

ve

(mo

nth

s)

Worked trough grief

Mean Sick leave (months in last 5yrs, Adjusted for gender)

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

• Why: do benefits of intervening outweigh the costs?

• Who: which bereaved should be targeted for intervention?

• What: what interventions are most effective, for whom?

• When: how soon to intervene after loss?

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

Time 1 Time 2

Waitlist Immediate Waitlist Immediate

M SD M SD M SD 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.

  n χ2 p

Pre-test 25 -----

Post-test 6 10.129 0.001

6-week follow-up 5 11.621 0.001

3-month follow-up* 2 8.142 0.004

*comparison for the immediate group

PGD Caseness Findings

Pre-test Post-test 6-week follow-up20.0022.0024.0026.0028.0030.0032.0034.0036.0038.0040.00

Means over time for Prolonged GriefM

ean

PG-1

3 Sc

ore

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

“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

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