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A Call to the Field: Complicated Grief in the DSM-5

Authors:
Therese Rando at The Institute for the Study and Treatment of Loss
Therese Rando
  • The Institute for the Study and Treatment of Loss
Kenneth J Doka at College of New Rochelle
Kenneth J Doka
Stephen Fleming at York University
Stephen Fleming
Maria Helena Pereira Franco at Pontifical Catholic University of São Paulo
Maria Helena Pereira Franco
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Abstract

While complicated grief has been addressed in part through some recommendations for modifications in the upcoming fifth version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), there remain reasons for substantial concern about its scope therein and within clinical practice. The authors issue a call to the field, reiterating that complicated grief is complicated and cannot be confined to just one syndrome or disorder. Continued research is urged, and specific caveats are identified for exploring the complex dimensions of loss and grief. The authors advocate for ongoing dialogue about and investigation of various potential forms of complicated grief.
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OMEGA, Vol. 65(4) 251-255, 2012
A CALL TO THE FIELD:
COMPLICATED GRIEF IN THE DSM-5
THERESE A. RANDO, PH.D., BCETS, BCBT
The Institute for the Study and Treatment of Loss, Warwick, Rhode Island
KENNETH J. DOKA, P
H.D.
The College of New Rochelle, New York
and The Hospice Foundation of America
STEPHEN FLEMING, P
H.D., C.PSYCH
York University, Toronto, Ontario, Canada
MARIA HELENA FRANCO, P
H.D.
Pontifical Catholic University of Sao Paulo, Brazil
ELIZABETH A. LOBB, P
H.D., MAPPSCI,BADED
Calvary Health Care Sydney and Cunningham Centre for Palliative Care
and University of Notre Dame, Sydney, Australia
COLIN MURRAY PARKES, MD
St. Christopher’s Hospice, London, England
ROSE STEELE, RN, P
H.D.
York University, Toronto, Ontario, Canada
ABSTRACT
While complicated grief has been addressed in part through some recom
-
mendations for modifications in the upcoming fifth version of the Diagnostic
and Statistical Manual of Mental Disorders (DSM-5), there remain reasons
for substantial concern about its scope therein and within clinical practice.
The authors issue a call to the field, reiterating that complicated grief is
251
Ó 2012, Baywood Publishing Co., Inc.
doi: http://dx.doi.org/10.2190/OM.65.4.a
http://baywood.com
complicated and cannot be confined to just one syndrome or disorder. Con
-
tinued research is urged, and specific caveats are identified for exploring
the complex dimensions of loss and grief. The authors advocate for
ongoing dialogue about and investigation of various potential forms of
complicated grief.
INTRODUCTION
For many years, there have been calls for a diagnostic category in the American
Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders
(DSM) to reflect grief that signals departure from the normal course of accom
-
modating loss and which warrants clinical attention (e.g., Horowitz, Siegel,
Holen, Bonanno, Milbrath, & Stinson, 1997; Jacobs, 1999; Parkes, 2007;
Prigerson & Jacobs, 2001; Prigerson & Maciejewski, 2006; Rando, 1993). We are
pleased that this call has been answered and that it is likely that this omission
will be addressed, in part, through some of the recommendations for modifica-
tions in the upcoming DSM-5.
The diagnostic term for complications that arise in the course of grieving has
been variously defined over the past 20 years, with a multitude of adjectives used
to describe variations from normal grief. These terms include absent, abnormal,
complicated, distorted, morbid, maladaptive, atypical, intensified and prolonged,
unresolved, neurotic, dysfunctional, chronic, delayed, and inhibited.
More recently, systematic attempts have been made to identify a form of
grieving that meets the standards of scientific research required for inclusion
in the DSM (e.g., Boelen & van den Bout, 2008; Prigerson, Vanderweker, &
Maciejewski, 2008; Shear, Simon, Wall, Zisook, Neimeyer, Duan, et al., 2011).
Foremost among these authors has been a group of researchers led by Holly
Prigerson. This team has developed and made extensive use of a research ques
-
tionnaire originally called the Inventory of Complicated Grief (ICG) (Prigerson,
Maciejewski, Reynolds, Bierhals, Newsom, Fasiczka, et al., 1995). Subsequent
revisions include the ICG-R (Prigerson & Jacobs, 2001) and the current PG-13
(Prigerson, Horowitz, Jacobs, Parkes, Aslan, Goodkin, et al., 2009).
This tool (and its various iterations) has now been used very widely as a
measure of persisting grief beyond the normal and many who have employed it
have used the term “Complicated Grief” for the syndrome that has emerged from
these studies. However, Prigerson’s group has explicitly recognized that there
are numerous forms of complicated grief, of which their syndrome is only one.
To avoid confusion, they renamed their proposed syndrome “Prolonged Grief
Disorder” (PGD) (Prigerson et al., 2008).
Having received evidence from many sources, the task force members who are
planning the fifth edition of the DSM placed on the web a consultation document
that includes, within the section headed “G 04 Adjustment Disorders” (American
Psychiatric Association, 2012), a category named “Related to Bereavement.”
252 / RANDO ET AL.
This category falls short of being a precise diagnosis. They also included a
modified version of Prigerson’s PGD, which they term “Persistent Complex
Bereavement-Related Disorder,” and placed it in the DSM section for condi
-
tions requiring further research.
While we applaud these recommendations, we also wish to acknowledge that
these efforts to identify forms of complicated grief should continue to go further.
Moreover, they will merit additional attention as subsequent revisions of the
DSM are considered. We address our concerns to all our colleagues in the field of
grief counseling and grief-related research, as well as those colleagues actively
involved in preparation of the DSM-5.
COMPLICATED GRIEF IS COMPLICATED
Our major concern is simply this: Complicated grief is complicated and
cannot be confined to one syndrome or disorder. In other words, there is not just
a single form of complicated grief, but rather many forms of it. No single form
should be construed to contain the full range of complicated grief. Instead, we
urge that a more comprehensive and robust perspective be maintained regarding
this phenomenon and that future endeavors seek to identify other forms of
complicated grief.
We call for continued research that would underlie the delineation of addi-
tional diagnostic categories with their distinct criteria. We again affirm support for
the recognition that, in a certain percentage of cases, grief does not follow the
normal course of accommodating loss and creates disorders meriting clinical
scrutiny. We believe that the work of Prigerson et al. (2008) and the research
underlying the category now termed “Prolonged Grief Disorder” meets the
standard of scientific research rightly expected of the DSM. We urge its inclusion
as one of the syndromes of complicated forms of grief. Other specific grief-related
syndromes that we feel may warrant further research and consideration include,
but are not limited to, delayed grief, inhibited grief, distorted grief, traumatic
grief, and forms of chronic grief that may be differentiated from “Prolonged Grief
Disorder.” We acknowledge the fact that complications of grief, in addition to
the syndromes delineated, can result in increased physical and mental morbidity
and mortality.
This editorial represents the opinions of the authors, not the opinions of the
Board or membership of the International Work Group on Death, Dying, and
Bereavement (IWG). As a group, we represent clinicians, researchers, writers,
and educators who come from diverse disciplines, including medicine, psychiatry,
nursing, psychology, counseling, and sociology from five countries, and have
over 200 years of collective experience focusing on issues related to loss and
grief. Convening at the Meeting of the IWG outside of Melbourne, Australia
in October 2011, this group decided to develop and issue A Call to the Field—
A CALL TO THE FIELD / 253
expressing our consensus about concerns related to the development of grief-
related issues in the DSM-5 as well as subsequent revisions of the DSM.
To that end, we strongly call for consideration of the following clinical issues
and we advocate for further research that will allow this critical dialogue to
continue and influence subsequent revisions of the DSM.
CONTINUING THE DIALOGUE
We urge the DSM to broaden the understanding of grief. Grief may occur in
non-death related losses and is not restricted to close relatives or friends. Rather,
grief should be construed as deriving from separation from, or any significant
change in relationship to, someone or something to whom an individual is
meaningfully attached.
We request that the DSM be sensitive in its use of terminology—noting the
varied meanings and usage of terms such as mourning, grieving, or grief work.
For example, the term mourning has been used to both describe intrapsychic
processes of accommodating the loss, as well as cultural ways of expressing grief.
In addition, we are concerned that use of the wording “may also. . . .” in any pro-
posed criteria for the disorder might introduce a level of ambiguity to the diagnosis
that would be unintended.
We recognize, moreover, that cultural and spiritual sensitivities are essential.
Clinicians and researchers should assess the ways that cultural and spiritual/
philosophical factors complicate and facilitate the grieving process.
We affirm that any diagnosis should be preceded by a full psychosocial assess-
ment of the client. Recognition of multiple influences upon bereavement—
pertaining to the mourner, the relationship lost, the circumstances of the loss,
social variables, and physical factors—must be considered. Further, because loss
can create an “emotional tsunami” in survivors, clinicians should explore, among
other factors, the effects of a loss on self and self-identity of the survivors.
We caution that extrapolation to children and adolescents should not be under
-
taken without appropriate empirical and clinical support.
We are concerned that as of this writing there may no longer be formal
recognition of bereavement in “Other Conditions That May Be a Focus of
Clinical Attention” (formerly known as V codes). We feel that some recognition
of grief and bereavement within such a category would be useful, as such a charac
-
terization acknowledges that between “normality” and “pathology” there is a
“gray” area of symptoms and issues worthy of clinical attention.
These considerations are offered in a spirit of collegiality and deep respect
for the past decade of research and review. We praise these efforts and acknowl
-
edge their importance even as we urge continued consideration for the need
to explore the complex dimensions of loss and the many ways in which grief
may be complicated.
254 / RANDO ET AL.
REFERENCES
American Psychiatric Association. (2012). DSM-5 development. G 04—Adjustment
disorders. Retrieved from http://www.dsm5.org/proposedrevision/pages/proposed
revision.aspx?rid=367
Boelen, V. A., & van den Bout, J. (2008). Complicated grief and uncomplicated grief
are distinguishable constructs. Psychiatry Research, 157, 311-314.
Horowitz, M. J., Siegel, B., Holen, A., Bonanno, G., Milbrath, C., & Stinson, C. H.
(1997). Diagnostic criteria for complicated grief disorders. American Journal of
Psychiatry, 154(7), 904-910.
Jacobs, S. (1999). Traumatic grief: Diagnosis, treatment and prevention. Philadelphia, PA:
Brunner-Mazel.
Parkes, C. M. (2007). Complicated grief: The debate over a new DSM-V category.
In K. Doka (Ed.), Living with grief: Before and after the death (pp. 139-152).
Washington, DC: Hospice Foundation of America.
Prigerson, H. G., Horowitz, M. J., Jacobs, S. C., Parkes, C. M., Aslan, M., Goodkin, K.,
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for DSM-V and ICD-11. PLoS Medicine, 6(8), e1000121. doi: 10.1371/journal.pmed.
1000121
Prigerson, H. G., & Jacobs, S. C. (2001). Traumatic grief as a distinct disorder: A rationale,
consensus criteria, and a preliminary empirical test. In M. S. Stroebe, W. Stroebe, &
R. O. Hansson (Eds.), Handbook of bereavement research: Consequences, coping,
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Prigerson, H. G., & Maciejewski, P. K. (2006). A call for sound empirical testing and
evaluation of criteria for complicated grief proposed for the DSM-V. Symposium
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Prigerson, H. G., Maciejewski, P. K., Reynolds, C. F. III, Bierhals, A. J., Newsom, J. T.,
Fasiczka, A., et al. (1995). Inventory of complicated grief: A scale to measure
maladaptive symptoms of loss. Psychiatry Research, 59, 65-79.
Prigerson, H. G., Vanderwerker, L. C., & Maciejewski, P. K. (2008). A case for inclusion of
Prolonged Grief Disorder in DSM-V. In M. Stroebe, R. Hansson, H. Schut, & W. Stroebe
(Eds.), Handbook of bereavement research and practice: Advances in theory and
intervention (pp. 165-186). Washington, DC: American Psychological Association.
Rando, T. A. (1993). Treatment of complicated mourning. Champaign, IL: Research Press.
Shear, M. K., Simon, N., Wall, M., Zisook, S., Neimeyer, R., Duan, N., et al. (2011).
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Direct reprint requests to:
Therese A. Rando, Ph.D., BCETS, BCBT
Clinical Director
The Institute for the Study and Treatment of Loss
33 College Hill Road, Building 30A
Warwick, RI 02886
e-mail: tarando@cox.net
A CALL TO THE FIELD / 255
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Traumatic grief as a distinct disorder: A rationale, consensus criteria, and a preliminary empirical test
Article
Full-text available
  • Jan 2001
This chapter begins with an evaluation of recent research that has accumulated about traumatic grief (TG) symptomatology. More specifically, the available evidence is reviewed to determine whether it satisfies requirements for the establishment of TG as a distinct clinical entity. Following this review, the authors discuss some advantages and disadvantages of developing standardized criteria for TG. Given their belief that the advantages outweigh the disadvantages, they then describe the logic behind the consensus criteria for TG proposed by a panel of experts. Results of a preliminary test of the proposed criteria set for TG are reported, directions for their further refinement are discussed, and assessment tools for TG are presented. The authors conclude by proposing ways to distinguish between normal and TG reactions and by suggesting directions for future research. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
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Correction: Prolonged Grief Disorder: Psychometric Validation of Criteria Proposed for DSM-V and ICD-11
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Full-text available
Bereavement is a universal experience, and its association with excess morbidity and mortality is well established. Nevertheless, grief becomes a serious health concern for a relative few. For such individuals, intense grief persists, is distressing and disabling, and may meet criteria as a distinct mental disorder. At present, grief is not recognized as a mental disorder in the DSM-IV or ICD-10. The goal of this study was to determine the psychometric validity of criteria for prolonged grief disorder (PGD) to enhance the detection and potential treatment of bereaved individuals at heightened risk of persistent distress and dysfunction. A total of 291 bereaved respondents were interviewed three times, grouped as 0-6, 6-12, and 12-24 mo post-loss. Item response theory (IRT) analyses derived the most informative, unbiased PGD symptoms. Combinatoric analyses identified the most sensitive and specific PGD algorithm that was then tested to evaluate its psychometric validity. Criteria require reactions to a significant loss that involve the experience of yearning (e.g., physical or emotional suffering as a result of the desired, but unfulfilled, reunion with the deceased) and at least five of the following nine symptoms experienced at least daily or to a disabling degree: feeling emotionally numb, stunned, or that life is meaningless; experiencing mistrust; bitterness over the loss; difficulty accepting the loss; identity confusion; avoidance of the reality of the loss; or difficulty moving on with life. Symptoms must be present at sufficiently high levels at least six mo from the death and be associated with functional impairment. The criteria set for PGD appear able to identify bereaved persons at heightened risk for enduring distress and dysfunction. The results support the psychometric validity of the criteria for PGD that we propose for inclusion in DSM-V and ICD-11. Please see later in the article for Editors' Summary.
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In Their Own Time: The Family Experience during the Process of Withdrawal of Life-Sustaining Therapy
Article
Full-text available
  • Nov 2008
  • J PALLIAT MED
Withdrawal of life-sustaining therapy (LST) occurs commonly in critical care units, yet little is known about the family experience with this process. The purpose of this study was to understand the lived experience of families participating in the process of withdrawal of LST from a family member with an unexpected, life-threatening illness or injury. A hermeneutic phenomenological approach was used as nineteen families were interviewed and observed. Within and across family analyses were conducted. Methodological rigor was established and redundancy was achieved. The categories that evolved from the data included: this happens to other families, time to understand the severity of the illness or injury, time to see if health would be restored, riding a roller coaster, family readiness: willingness to consider withdrawal of LST as a possible option, one step at a time, family readiness: time to make a decision, the family will go on, and waiting for a miracle. The family experience participating in the process of withdrawal of LST happened for families "in their own time." The results of this study have important implications for clinical practice and future research.
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A Call for Sound Empirical Testing and Evaluation of Criteria for Complicated Grief Proposed for DSM-V
Article
  • Feb 2006
  • OMEGA-J DEATH DYING
The empirical testing of diagnostic criteria for Complicated Grief (CG) by autonomous investigators is a welcome development. Cross-validation studies are essential to an impartial evaluation of diagnostic criteria for CG proposed for inclusion in the DSM-V. Nevertheless, the review of evidence to confirm or disconfirm the diagnostic validity of the proposed CG criteria requires a fair, unbiased, and relevant examination of the data. It is our view that Hogan, Worden, and Schmidt's (2003-2004) “An Empirical Study of the Complicated Grief Disorder Criteria” (see Table 1) fails to meet these standards. Hogan et al. test for the independence between: a) separation distress and traumatic distress symptoms, b) CG and depressive symptoms, c) CG symptoms and presumably “normal” symptoms of grief. Testing for the independence of these constructs is a red herring. Issues central to the validity and reliability of a CG diagnosis should focus on the ability of the symptoms to identify the small number of bereaved persons with enduring and acutely distressing grief that is associated with significant dysfunction. Despite asking the wrong questions, the basic results remain consistent with claims that we have made all along (e.g., that CG symptoms are unidimensional; that more than half the variance in CG symptoms cannot be explained by depressive symptoms; that CG symptoms distinguish themselves from normal grief symptoms with respect to their intensity and chronicity and the prediction of morbidity). There is little doubt of the need for more empirical work to evaluate the reliability, validity, sensitivity, specificity, and diagnostic efficiency of criteria proposed for CG. It is our hope that the call will be heard by investigators who will test issues relevant to the creation of a sound CG diagnosis.
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Timing of Do-Not-Resuscitate Orders for Hospitalized Older Adults Who Require a Surrogate Decision-Maker
Article
  • Jul 2011
  • J AM GERIATR SOC
To examine the frequency of surrogate decisions for in-hospital do-not-resuscitate (DNR) orders and the timing of DNR order entry for surrogate decisions. Retrospective cohort study. Large, urban, public hospital. Hospitalized adults aged 65 and older over a 3-year period (1/1/2004-12/31/2006) with a DNR order during their hospital stay. Electronic chart review provided data on frequency of surrogate decisions, patient demographic and clinical characteristics, and timing of DNR orders. Of 668 patients, the ordering physician indicated that the DNR decision was made with the patient in 191 cases (28.9%), the surrogate in 389 (58.2%), and both in 88 (13.2%). Patients who required a surrogate were more likely to be in the intensive care unit (62.2% vs 39.8%, P<.001) but did not differ according to demographic characteristics. By hospital Day 3, 77.6% of patient decisions, 61.9% of surrogate decisions, and 58.0% of shared decisions had been made. In multivariable models, the number of days from admission to DNR order was higher for surrogate (odds ratio (OR)=1.97, P<.001) and shared decisions (OR=1.48, P=.009) than for patient decisions. The adjusted hazard ratio for hospital death was higher for patients with surrogate than patient decisions (2.61, 95% confidence interval (CI)=1.56-4.36). Patients whose DNR orders were written on Day 6 or later were twice as likely to die in the hospital (OR=2.20, 95% CI=1.45-3.36) than patients with earlier DNR orders. For patients who have a DNR order entered during their hospital stay, order entry occurs later when a surrogate is involved. Surrogate decision-making may take longer because of the greater ethical, emotional, or communication complexity of making decisions with surrogates than with patients.
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Complicated grief and related bereavement issues for DSM-5
Article
Bereavement is a severe stressor that typically incites painful and debilitating symptoms of acute grief that commonly progresses to restoration of a satisfactory, if changed, life. Normally, grief does not need clinical intervention. However, sometimes acute grief can gain a foothold and become a chronic debilitating condition called complicated grief. Moreover, the stress caused by bereavement, like other stressors, can increase the likelihood of onset or worsening of other physical or mental disorders. Hence, some bereaved people need to be diagnosed and treated. A clinician evaluating a bereaved person is at risk for both over-and under-diagnosis, either pathologizing a normal condition or neglecting to treat an impairing disorder. The authors of DSM IV focused primarily on the problem of over-diagnosis, and omitted complicated grief because of insufficient evidence. We revisit bereavement considerations in light of new research findings. This article focuses primarily on a discussion of possible inclusion of a new diagnosis and dimensional assessment of complicated grief. We also discuss modifications in the bereavement V code and refinement of bereavement exclusions in major depression and other disorders.
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