Transcript PGD - Center for Research on End-of-Life Care

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
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:
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
Indicator Rating
5.0
Acceptance
4.0
Yearning
3.0
Grief
Disbelief
Sadness
2.0
Anger
1.0
0
2
4
6
8
10
12
14
16
18
20
22
24
Time From Loss (months)
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
Grief
score
50
Prolonged Grief
1
40
1
1
1
1
1
11 1
11
1
1
11 1 11 1 1
1
30
1
1
11
1
00
0
0
0 00 0 0 00
00
000
0
0
0
0
0
0
0 0 0 0000 000
0
0 00 0 0 0 0 0 0 0
0 00
0 0
000
0
0 0
00
0
0
0 0
0
10
1
1 1
1
1
20
1
1
1
0
Not Prolonged Grief
0
0
0 0
0 0
0
0
0
0 0
0
0
00 0
0
0
0
0
0
0
10
20
30
40
Months from the death
50
60
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
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
ROC Analysis of Alternative Diagnostic Algorithms for PGD
N=5, k=3
1.00
N=6, k=3
N=6, k=4
0.80
Sensitivity
N=7, k=3
N=7, k=4
N=7, k=5
0.60
N=8, k=3
N=8, k=4
0.40
N=8, k=5
N=9, k=4
N=9, k=5
0.20
N=9, k=6
Optimal
0.00
0.80
0.85
0.90
Specificity
0.95
1.00
Diagnostic accuracy absent other mental disorders
(MDD, PTSD and GAD) (N=234)
100.0%
DSM-5 (2013)
TG (1999)
ICD-11 (2013)
PGD (2009)
90.0%
Specificity
CGD (1997)
CG (2011)
80.0%
70.0%
60.0%
60.0%
70.0%
80.0%
Sensitivity
90.0%
100.0%
Diagnostic accuracy in the context of other mental disorders
(MDD, PTSD and GAD) (N=34)
100.0%
90.0%
PGD (2009)
ICD-11 (2013)
80.0%
Specificity
DSM-5 (2013)
TG (1999)
70.0%
60.0%
50.0%
CGD (1997)
40.0%
CG (2011)
30.0%
30.0%
40.0%
50.0%
60.0%
70.0%
Sensitivity
80.0%
90.0%
100.0%
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.
2.
3.
4.
5.
6.
7.
8.
9.
Confusion about one’s identity ( role in life or diminished
sense of self; feeling that a part of oneself has died)
Difficulty accepting the loss
Avoidance of reminders of the reality of the loss
Inability to trust others since the loss
Bitterness or anger related to the loss
Difficulty moving on with life (eg, making new friends, pursuing
interests); feeling stuck in grief
Numbness (absence of emotion) since the loss
Feeling that life is unfulfilling, empty, and meaningless
since the loss
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
Internal Consistency
0.94
PGD
Phi
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%)
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
• feelings of security
• dependency on partner
• confiding in partner
• active emotional support
• combo security, confiding,
support
• Overall Quality of Marriage
MDD
PGD
r
.47
.43
.43
.60
.69
p
.005
.001
.001
.0001
.0001
.39 .01
r
.15
.06
.02
.18
.23
p
ns
ns
ns
ns
ns
.03
ns
Van Doorn et al. 1998
Security-increasing marriages and insecure attachment styles
put spouses at risk for PGD
Childhood Separation Anxiety & Psychiatric
Disorders in Bereaved Persons
Dx
PGD
MDD
PTSD
GAD
OR a 95% CI_______
4.20 (1.42-12.42)**
1.42 (0.49-4.16)
1.20 (0.29-5.01)
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
0.16
Dependency
on Deceased
Bereavement
0.43
Dependency
Parental
Control
0.19
Prolonged
Grief Disorder
Dyadic
-0.03
Adjustment
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)
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
Major Health Event
1.32
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
MDD, PTSD or GAD
Suicidal Ideation
Functional Disability
Low Quality of Life
PGD
Yes
PGD
No
55.9%
30.8%
72.7
50.0
44.1%
10.0
35.0
14.7
RR
8.86***
5.61***
2.01**
5.70***
Disability of PGD by Temporal Subtype
Outcome
13-24 mo
MDD, PTSD
or GAD
Disturbed
Sleep
Suicidal
Ideation
Functional
Disability
Low Quality
of Life
RR for Outcome associated with …
Acute
Delayed
Chronic
(15/172) (6/172)
(12/172)
Delayed or
Chronic
(28/242)
1.54
3.86
11.58***
10.19***
3.09
11.58***
3.86
4.59**
1.97
4.93***
3.29*
4.44***
0.51
1.54
1.40
1.64**
0.76
3.78***
2.58*
3.17***
Mean Sick leave (months in last 5yrs, Adjusted for gender)
1.4
Mean sick leave (months)
1.2
1
0.8
0.6
0.4
0.2
0
Controls
A lot/completely
No/Little*
Worked trough grief
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?
• What: what
interventions are most
effective, for whom?
• Who: which bereaved
should be targeted for
intervention?
• 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
Waitlist
M
SD
Time 2
Immediate
M
Waitlist
SD
M
SD
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.
Means over time for Prolonged Grief
PGD Caseness Findings
n
χ2
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
Mean PG-13 Score
p
40.00
38.00
36.00
34.00
32.00
30.00
28.00
26.00
24.00
22.00
20.00
Pre-test
Post-test
6-week follow-up
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:
[email protected]