Content uploaded by Kaori Wada
Author content
All content in this area was uploaded by Kaori Wada on Dec 02, 2021
Content may be subject to copyright.
Running head: MEDICALIZATION OF GRIEF 1
Medicalization of Grief: Its Developments and Paradoxes
Kaori Wada
University of Calgary
Author Note
The authors research activities at the time of writing this article was supported by SSHRC
Explore Seed Grant from the University of Calgary.
This full-text is an uncorrected manuscript accepted for publication in The Palgrave
Encyclopedia of Critical Perspectives on Mental Health.
MEDICALIZATION OF GRIEF 2
Medicalization of Grief: Its Developments and Paradoxes
We stand at a critical juncture in the shifting landscape of how we understand grief––
more specifically, how we draw the line between normal and abnormal grief and whether we
should draw that line at all. The medicalization of grief has recently been instituted by two
widely used classification systems of mental disorders, the fifth edition of the Diagnostic and
Statistical Manual of Mental Disorder (DSM; American Psychiatric Association [APA], 2013)
and the 11th edition of the International Classification of Disorder (ICD-11: World Health
Organization [WHO], 2019). Persistent Complex Bereavement Disorder (PCBD) was included in
the DSM-5’s section of conditions for further study. Prolonged Grief Disorder (PGD) was
formally added as a mental disorder in the ICD-11, grouped with other disorders (e.g., complex
posttraumatic stress disorder) under disorders specifically associated with stress. While efforts to
harmonize these disorders are underway for future iterations of the DSM (APA, 2020b), the
legitimacy of these categories and their boundaries have been vigorously examined and
contested.
In this chapter, I will outline the developments in medicalization of grief, focusing on the
changes from DSM-IV-TR to DSM-5 and ICD-11, as well as their future directions. I will then
discuss some of the unresolved issues and paradoxes underlying these changes. In doing so, I
will follow the approach of Conrad (2007) and Brinkmann (2020) in my use of medicalization as
a value-neutral term––“it does not automatically imply that a phenomenon is illegitimately
medicalized” (Brinkman, 2020, p. 157) or over-medicalized (Conrad, 2007, p. 5) Instead,
medicalization refers to the process of translating a human condition previously understood
MEDICALIZATION OF GRIEF 3
outside of medical language into treatable disorders, through the use of psychiatric language and
a diagnosis-and-treat logic (Conrad, 2007; Strong, 2017).
Although my use of the term medicalization is value-neutral, I examine medicalization of
grief through a critical lens. Medicalization––whether legitimate or illegitimate––tends to be
accompanied by tangible social consequences. Conrad (2017) argued that “medicalization
transforms aspects of everyday life into pathologies, narrowing the range of what is considered
acceptable” (p. 7). Human suffering, as a result, becomes narrowly understood as a problem of
the individual, which gives priority to medical interventions––particularly biotechnological
treatments such as psychopharmacology––over other approaches (e.g., interpersonal, spiritual,
collective, or existential). When medicalization discourses become the dominant monoculture
within a profession, it changes its professional practices and identity, transforming the profession
into an active agent that further legitimizes those same medicalization discourses (Conrad, 2007;
Strong, 2016). By acquiring a mental disorder category to name their pain, individuals construct
their self-narratives accordingly, influencing their social interactions and participation, including
self-help and self-advocacy behaviours (Brinkmann, 2016, Illouz, 2008).
In the latter part of this chapter, I will highlight various and at times contradictory and
paradoxical, claims-making implicit in the medicalization of grief, in order to sensitize the reader
to some of the already unfolding consequences. I will also illustrate how the medicalization of
grief introduces numerous paradoxes into our understanding of what constitutes a mental
disorder. The DSM-5, for instance, explicitly states that “An expectable or culturally approved
response to a common stressor or loss, such as the death of a loved one [emphasis added], is not
a mental disorder” (APA, 2013, p. 20). A similar statement can be found in the DSM-IV-TR
(APA, 2000, p. xxxi). Likewise, Wakefield (1992) also used grief as an exemplar of expectable
MEDICALIZATION OF GRIEF 4
response, to be distinguished from disordered responses, which “are not expectable” (p. 381). As
these examples show, bereavement has been thus far used within psychiatry as a counterexample
to mental disorder. The medicalization of grief is therefore controversial because it may
fundamentally alter the premises on which answers to the question of ‘what is mental disorder?’
have been defined and understood.
Before proceeding, I briefly define grief and bereavement, terms which are often used
interchangeably in the literature. Grief is commonly defined as reactions to loss, encompassing
both death-loss and non-death losses (e.g., divorce, relocation, job-loss). Bereavement, on the
other hand, refers to the situation following death-loss. Although grief may result from losses
other than through death, in this chapter I refer specifically to grief following a death-loss.
Additionally, I follow Kofod and Brinkman (2017) in conceiving of grief as a culturally
normative phenomenon. That is, the reactive experience of grief is shaped, not just by an
intrinsic, personal experience, but also by norms which dictate in what way, and for how long,
one should grieve for which relationships. These norms are in turn powerfully shaped by social,
cultural, and material conditions, and inherently contain value judgments about good and bad,
moral and immoral, or healthy and unhealthy grief. In this chapter, I illustrate how the
medicalization of grief, through the authority of psychiatric diagnosis, operates as a normative
discourse, setting social expectations for ideal or healthy grieving.
Developments
Grief researchers and counsellors have used diverse terms to discuss the experience of
those whose grieving process is particularly difficult and enduring. This includes traumatic grief,
unresolved grief, delayed grief, complicated grief, and prolonged grief, to name a few. Until
recent years, however, these terms remained outside of the established classification systems of
MEDICALIZATION OF GRIEF 5
mental disorders. Several changes have been instituted leading to the inclusion of PCBD and
PGD in the DSM-5 and ICD-11.
Removal of Bereavement Exclusion and Changes to V-code
When the proposal for DSM-5 revisions was made public, there was a great deal of
concern over the overall direction of the revision (e.g., British Psychological Association, 2011;
Open Letter to the DSM-5, 2011; see Kamen et al, 2017). These critiques expressed general
concern about the lowering of diagnostic thresholds and the expanding number of diagnoses.
One of the most frequently cited examples epitomizing these concerns was the elimination of the
Bereavement Exclusion (BE), which was problematized by prominent figures in the field (e.g.,
Frances, 2010; Kleinman, 2012; Wakefield, 2011; 2013), fueling the debate (see Fox & Jones,
2013).
The BE was first introduced in the DSM-III (APA, 1980) and remained in the successive
revisions up to the DSM-IV-TR. It was the last criterion for major depressive episode (MDE),
which is a building block for diagnoses of Major Depressive Disorder (MDD) and other mood
disorders. Emerging from a line of research highlighting the similarity between manifestations of
grief and depressive symptoms (e.g., Clayton et al., 1974), the BE was designed to prevent false
positive diagnoses being given to people whose grief resembled depressive symptoms. The DSM
authors stated that symptoms listed in Criterion A (i.e., the list of “5-out-of-9-symptions-for-2-
weeks,” including depressed mood and markedly diminished interest or pleasure) should not be
better accounted for by bereavement––the death of a loved one. Before the DSM-5, an MDE
diagnosis could not be made if depressive symptoms “began within 2 months of the loss of a
loved one and did not persist beyond those 2 months” (APA, 2000, p. 353).
MEDICALIZATION OF GRIEF 6
Proponents of the BE removal countered critics’ concerns on grounds including but not
limited to: (a) non-death losses such as loss of physical function, job loss, and divorce, can also
cause grief responses that resemble depressive symptoms, and it is arbitrary to only exclude
death-loss; (b) although BE mitigates the cost of false positives, the cost of false negatives––
overlooking MDE and thus denying treatment––is greater; (c) only a small number of grieving
people would meet the criteria for MDE by removing BE, so there would not be drastic
diagnostic inflation; (d) removing the BE does not lead to pathologizing of normal grief, because
diagnosis is informed by clinical judgement (Zisook et al., 2013). Critics, however, remained
unsatisfied, recognizing the argument on the cost of false negative above as a “straw-person
argument” (e.g., Wakefield, 2011, p. 204). That is, without removing the BE, recently bereaved
individuals could already qualify for a diagnosis of MDE/MDD, and thus treatment, if they were
experiencing severe depressive symptoms persisting for longer than 2 months or “marked
functional impairment, morbid preoccupation with worthlessness, suicide ideation, psychotic
symptoms, or psychomotor retardation” (APA, 2000, p. 352).
Simultaneous to the removal of the BE in the publication of the DSM-5, a small but
important change that received far less attention, was made to a V-code. V-codes, which have
since been renamed Z-codes to be consistent with the language of the ICD-10 and onward, refer
to codes included in the Other Conditions That May Be a Focus of Clinical Attention section of
the DSM. Conditions included in this section, such as relationship problems and problems of
abuse and neglect, are not mental disorders per se, but warrant clinical attention. Whereas the
DSM-IV listed “Bereavement”, this code was renamed “Uncomplicated Bereavement” in the
DSM-5. By defining a type of bereavement that warranted the V-code “uncomplicated”, this
change simultaneously defined its mutually constitutive opposite––complicated bereavement–––
MEDICALIZATION OF GRIEF 7
as “a syndrome of intense and persistent grief that may co-occur with MDD, but is distinct from
it” (Zisook et al, 2013). This paved the way for the development of a new grief disorder
category: PCBD.
Adoption of PCBD as a Condition for Further Study
The creation of the term PCBD was in fact the result of compromise. The DSM-5
Anxiety, Obsessive-Compulsive Spectrum, Posttraumatic, and Dissociative Disorders Working
Group reviewed two proposals, one for prolonged grief (Prigerson et al., 2009) and the other for
complicated grief (Shear et al., 2011), each with a distinct criterion set, albeit with substantial
overlap. Rather than choosing between the two proposals, the working group created a new
disorder category PCBD (see Boelen & Prigerson, 2012; Simon et al., 2020). Due to “insufficient
evidence” (APA, 2013, p. 783), however, PCBD did not become an official disorder category in
the DSM-5, and was instead included in Conditions for Further Study, so that future research
would, among other things, “inform the decisions about placement in the forthcoming editions of
the DSM” (APA, 2013, p. 782). Despite being an ‘unofficial’ diagnostic category, the inclusion
of PCBD was a landmark movement that spurred research, as it was intended to, and
foregrounded the subsequent inclusion of PGD in the ICD-11 (Bryant, 2013; Maecker et al.,
2013).
As presented in Table 1, the proposed criteria for PCBD specify that since the death of a
loved one (Criterion A), the individual must experience at least one of the core symptoms
(Criterion B), which are sometimes called “gateway symptoms” (Simon et al., 2020). These are:
(1) persistent yearning or longing for the deceased, (2) intense sorrow and emotional pain in
response to death, (3) preoccupation with the death, and (4) preoccupation with the circumstance
of the death (APA, 2013, p. 789). Furthermore, the individual needs to have experienced at least
MEDICALIZATION OF GRIEF 8
six of the twelve symptoms (Criterion C), which are grouped into two clusters: reactive distress
to the death and social/identity disruption (APA, 2013, p. 789). These gateway and subtype
symptoms must persist “on more days than not and to a clinically significant degree” (APA,
2013, p. 789), for at least twelve months for adults, and six months for children. Criterion D
stipulates the requirement of clinically significant level of distress or functional impairment,
which is common to many other DSM diagnoses. Lastly, Criterion E contraindicates the
diagnosis if grief manifestations are within the norms.
Official Adoption of Prolonged Grief Disorder in the ICD-11
Published by the WHO, the ICD is used by 95% of the world’s health professionals as it
lists not only mental disorders but a wide range of bodily diseases (e.g., diseases of the
respiratory system). The latest edition, the ICD-11, was released in June 2018 and officialized at
the WHO General Assembly held in January 2019. Prolonged Grief Disorder was a new addition
to the ICD-11, under the category of “disorders specifically associated with stress” along with
other disorders such as adjustment disorders, PTSD, and an another newly added disorder,
complex post-traumatic stress disorder. Whereas the DSM uses a criterion-based approach to
diagnosis, the ICD takes a flexible, descriptive approach. That is, instead of providing specific
symptom requirements (e.g., “six out of twelve symptoms”), the ICD-11 provides a prototypical
description of each disorder. The entry for PGD, which is freely accessible on the ICD-11
website (click here for details on the PGD diagnostic category), specifies persistent and
pervasive longing for, or preoccupation with, the deceased as its core feature. This core feature
needs to be accompanied by intense emotional pain, examples of which include sadness, guilt,
and emotional numbness.
MEDICALIZATION OF GRIEF 9
In many ways, PGD is similar to PCBD in the DSM-5, in part because the same
proposals submitted for the DSM-5 were reviewed by the ICD Working Group (Maecker, 2013).
The core feature of “longing for the deceased or persistent preoccupation with the deceased”
corresponds with two of the four gateway symptoms of PCBD, whereas “intense emotional pain”
corresponds to the third gateway symptom. Moreover, the examples provided to typify instances
of emotional pain are either identical or similar to PCBD’s two secondary symptom subgroups:
“reactive distress to the death” and “social/identity disruption.” Similar to Criteria D and E for
PCBD in the DSM-5, the ICD-11 specifies that grief reactions need to go beyond the person’s
social, cultural, and religious norms, and cause significant functional impairment for a PGD
diagnosis to be warranted (WHO, 2019).
Where PGD differs from PCBD is the symptomatic time threshold. Compared to 12
months for adults and six months for children in PCBD, the ICD-11 adopted the six-month
threshold regardless of age. Furthermore, due to the descriptive approach taken by the ICD-11,
PGD symptoms are not grouped into subtypes and the diagnosis does not require a certain
number of symptoms.
Current Status: Toward Harmonization
On April 6th, 2020, the APA issued a statement, Addition of a New Diagnosis, ‘Prolonged
Grief Disorder’, to the Depressive Disorders Chapter (APA, 2020b). The purpose of the
statement was to post the proposal approved by the DSM Steering Committee for a 45-day
public comment review. Table 1 contrasts the proposed changes with DSM-5 PCBD. The
proposed change, approved by the Steering Committee, is an effort to harmonize the proposed
DSM-5 diagnosis of PCBD with PGD already adopted into the ICD-11. In addition to
abandoning the term PCBD in favour of PGD, gateway symptoms were reduced from four to
MEDICALIZATION OF GRIEF 10
two, which is also consistent with the ICD-11’s core features. Whereas PCBD was based on a
three-factor symptom structure (i.e.., core/gateway symptoms; reactive distress to the death; and
social/identity disruption), the proposed criteria adopted a single-factor structure, as is the case
for the ICD-11’s PGD. The number of Criterion C symptoms were reduced from twelve to eight,
with a diagnostic threshold of three, instead of six symptoms.
Although these proposed changes are an attempt to bring the DSM-5’s and the ICD-11’s
diagnoses closer, there are still some points of divergence. Despite the ICD-11’s choice of a six-
month threshold, the DSM-5’s expert panel agreed to preserve the twelve-month threshold.
Moreover, the new proposal no longer requires the person to experience symptoms persistently,
“more days than not,” over that twelve-month period. Instead, symptoms must be experienced
“nearly every day for at least the last month” to qualify for diagnosis (APA. 2020b). Another
notable divergence between the two diagnoses is their grouping. In the ICD-11, PGD is classified
under the section of disorders specifically associated with stress, as they “are the only diagnoses
that include an exposure to a stressful event in their etiology as a qualifying diagnostic
requirement” (Maercker, et al., 2013, p. 198). The DSM proposal, on the other hand, states that
PGD will be added to the depressive disorders chapter, with no justification as of yet (APA,
2020b). This may be explained by the similarity in presentation between PGD and MDD, which
in the first place necessitated the inclusion of a bereavement exclusion for MDD. In fact, it is not
uncommon for studies that investigate the legitimacy of PCGD/PGD to use concordance with
MDD as an indication of validity. However, it follows that a high rate of comorbidity between
MDD and PGD is to be expected. Perhaps for this reason, the DSM proposal included a new
exclusion criterion (Criterion F), stating “the symptoms are not better explained by another
mental disorder.”
MEDICALIZATION OF GRIEF 11
Issues and Paradoxes
The institution of pathological grief as a mental disorder has been heavily contested,
drawing in major researchers and scholars. This has led to successive revisions of the diagnostic
construct in the DSM-5 and ICD-11, and attempts at harmonization currently underway. In the
debates leading up to the publication of the DSM-5, the removal of the BE took center stage, an
issue which is now being replaced as a focus of contestation by the emergence of entirely new
disorders of grief (e.g., Complicated Grief, PGD, and PCBD), and their symptom criteria (e.g.,
time thresholds, gateway symptoms, factor-structures, and caseness). While PGD seems to be
gaining favor not only in the ICD but also future iterations of the DSM, there remains a debate
over which set of diagnosis criteria is supported by better evidence, Hence, an increasing of body
of evidence is being produced around the validity, reliability, and clinical utility of these
diagnoses. My intention in this section is not to enter in this debate, but to highlight some of the
issues and paradoxes that are overlooked in this large body of research. Specifically, I will
examine the shifting claims on prevalence rates, roles of psychopharmacology, concept creep,
diagnostic cultures, and cultural embeddedness of grief and homogenizing effects of
medicalization.
Shifting Claims on Prevalence Rates
Proponents of eliminating the BE and/or including a new grief disorder diagnosis often
argue that these changes affect only a minority of people, and will not lead to over-
pathologization, or what Frances (2013) calls ‘diagnostic inflation’ (e.g., Zisook et al, 2013;
Shear et al., 2011). At the same time, the opposite argument was also used as a justification for
the removal of the BE––there should be a grief-specific disorder because it would apply to a
sizable amount of people. For example, Litchtenthal et al. (2004) argued for establishing a grief-
MEDICALIZATION OF GRIEF 12
specific disorder in the DSM-5, stating that the lack of a diagnosis is peculiar given that it “might
be the most prevalent psychopathological response to a bereavement event, far exceeding the
prevalence of MDD or PTSD” (p. 657)
Prevalence rates reported in bereavement research are quite inconsistent. Although it is
expected that prevalence rates will vary depending on the sample and the post-loss duration, the
numbers seem to be on an upwards trend. In a practitioner-targeted article introducing changes to
the DSM-5, renowned British grief scholar C. M. Parkes (2014) reported an estimated prevalence
of PCBD among bereaved adults to be between 2.4% and 4.8%. These numbers are likely drawn
from studies by Fujisawa et al. (2010) and Newson et al. (2011), respectively. In a similarly
practitioner-targeted article, Shear (2012) reported an estimated rate of 7%, drawing from the
Kersting et al. (2011)’s study. Around the same time, Shear et al. (2011) referred to the rate of
10% in the 2011 review article, which was submitted to the DSM-5 Steering Committee and
formed the basis for the inclusion of PCBD in the DSM-5 (along with Prigersion et al, 2009).
Reporting the prevalence rate of approximately 9-10% seem to have since become a standard,
often from the latent growth mixture modeling studies conducted by Bonnano’s research team,
wherein about 9.1% of bereaved people were identified as “chronic grievers” (Bonanno et al,
2002; Galatzer-Levy & Bonanno, 2012). Citing these studies, Bryant (2013) stated, “the finding
that only 10% of bereaved people are typically classified as suffering prolonged grief provides
some assurance that it is not an excessively pathologizing response” (p. 23). Whether one sees
10% as small is perhaps subjective. As a reference point, the prevalence rate of Attention Deficit
Hyperactivity Disorder is about 4 to 7% (Nigg & Barkley, 2014), which has been controversial
for its overdiagnosis and increasing prescription rates (e.g., Batstra & Frances, 2012; Paris et al,
2015; Piper et al. 2018)
MEDICALIZATION OF GRIEF 13
While the 10% prevalence rate for a grief diagnosis is becoming established in the
literature for natural death (Boelen & Lenferink, 2020), it “may be at least twice that rate
following violent death” (Simon et al, 2020). For example, Lenferink et al. (2020) found that
among 172 Dutch adults who have lost loved ones in a plane crash, 18.2% were identified as a
chronic class, meeting the PCBD diagnosis. A meta-analytic study by Djelantik et al. (2020)
reported a pooled prevalence of PGD among people bereaved by unnatural death (e.g., accidents,
homicides, suicides, and disasters) to be 48%. In the midst of the COVID-19 pandemic, the
American Psychiatric Association (2020a) released a guidance document on COVID-19 related
death, which stated that the rate of PGD resulting from COVID-19-related death “might be as
high as 20%” (p. 4). At the time of writing this chapter, over three million people have died
worldwide due to this virus, leaving behind an inestimable number of people in sorrow. Grief is
undeniably palpable as the casualties of COVID-19 grows worldwide; if the APA’s estimate is
accurate, the world will also see an epidemic of this new mental disorder diagnosis in the coming
years.
Role of Medication in the Debate and in the Future Practice
Proponents for establishing a grief disorder category often invoke the inappropriate use of
antidepressants for grieving people as an argument for medicalizing grief––we need a grief-
specific disorder so that grieving people are not inappropriately medicated. For example, Bryant
(2013) argues that “in the context of widespread use of medication with antidepressant and its
apparent lack of utility for prolonged grief patient, too many patients with prolonged grief may
be prescribed antidepressant medication to manage grief reactions” (p. 24). Although how
widespread such use of medication is unclear, randomized control studies have indeed indicated
MEDICALIZATION OF GRIEF 14
that antidepressants such as SSRIs are not effective, or effective only when adjunctively used to
psychotherapy; psychotherapy “remains the first-line treatment” (Vance & Bui, 2018, p. 296).
Yet, as grief disorder categories have entered the DSM-5 and the ICD-11 and have gained
recognition, there has been an increased effort to establish psychopharmacological interventions
for people meeting these criteria. For example, in a 2015 paper entitled Prolonged Grief: Setting
the Research Agenda, Rosner (2015) identified several areas for future research, including
“possible pharmacological interventions” (p. 4). Similarly, Vance and Bui (2018), in their book
chapter entitled Pharmacotherapy of Pathological Grief Disorder, discuss fruitful avenues for
further pharmacological research into treating grief symptoms, such as those targeting pain
perception and reward pathways.
A paradoxical dynamic is at play in the claims-making of the relationship between the
medicalization of grief and pharmacology. On the one hand, preventing grieving people from
being medicated was deployed as a justification for a specific disorder distinct from MDD or
PTSD. On the other hand, establishing a disorder category enables, even stimulates, further
research into pharmacological intervention for these very same people. This dynamic suggests
the mutually constitutive nature of diagnosis and treatment in the construction of disorder
category (Hacking, 1998). The idea of a certain kind of grief experience as a mental disorder is
still new to many of us, and the image of grief-stricken people being medicated may seem like
scientific fiction. Yet, in the same way that few predicted the prevalent use of medication for
hyperactive children three decades ago, it may not be surprising that grief management or grief
reduction medication will be developed and popularized in future decades.
Concept Creep
MEDICALIZATION OF GRIEF 15
Related to the increasing estimates of prevalence is the phenomenon of concept creep.
According to Haslam (2016), concept creep refers to the expansion of a concept through the
stretching of its boundaries, thresholds, and meanings, to the extent that the concept comes to
“encompass a much broader range of phenomena than before” (Haslam, 2016, p. 1). Through the
analysis of concepts such as abuse, bullying, and mental disorder, Haslam (2016) demonstrates
that concept creep occurs in horizontal and vertical forms. Although Haslam does not write about
grief specifically, these forms of expansion may be operating in medicalization of grief. First, the
incorporation of certain expressions of grief into the concept of mental disorder fits with the
horizontal creep, “the expanding register of mental disorders” (Haslam, 2016, p. 8). Furthermore,
as I discussed above, bereavement has been used as counterexample to the concept of mental
disorder. It is counterintuitive to include an exemplar of what mental disorder is not into the
classification of mental disorder. It remains to be seen how future revisions of the DSM will
address this quandary, including whether they will go so far as to change the very definition of
mental disorder itself, to comfortably accommodate the inclusion of a grief disorder category. If
this happens, it would be a major instance of horizontal concept creep.
Second, the vertical form of concept creep “occur[s] through a lowering of the threshold
for identifying a phenomenon or through the relaxation of criteria for defining it” (Haslam, 2016,
p. 2). This is evident in the proposed changes to the the DSM (APA, 2020b), which include a
reduction in the number of symptoms required for diagnosis from six out of twelve to three out
of eight. Furthermore, the proposed criteria dropped the requirement of persistent symptom
presentation for “more days than not” for at least twelve months since the death. Instead, the
duration of symptom presentation was dropped to “for at least the last month,” representing a
significant lowering of the threshold. This relaxation of the criteria leads us to question one of
MEDICALIZATION OF GRIEF 16
the possible consequences of concept creep––progressive dilution of meaning to the point of
becoming preposterous (Haslam, 2016). In this case, can a resurgence of intense grief for one
month be considered “persistent” or “prolonged”, as the naming of the disorder categories
suggest?
Normative Societal Expectations of Grief in the Era of Diagnostic Cultures
In February 2020, the Task Force on Diagnostic Alternatives of the American
Psychological Association’s Division 32 (the Society for Humanistic Psychology) released an
open letter to the respective chairs, director, and coordinator of WHO Joint Task force of ICD-11,
the DSM Steering Committee, and National Institute of Mental Health’s Research Domain
Criteria (RDoC). This letter, while commending these organizations on their efforts into
improving mental disorder taxonomies, expressed a concern for their frameworks relying on
“reductionist biomedical diagnoses” which “obscure social determinants of our distress” (para 4),
adding that “the criteria are not value-free, but instead reflect current normative social
expectations [emphasis added]” (para 4).
What are the current normative social expectations reflected in the development of a
grief-related disorder? This review so far points to a particular social expectation about
bereavement of our time: grieving too much and too long is a mental health problem in need of
treatment (Rosenblatt, 2013; Granek, 2016). Kofod (2017; 2020) argues that this norm reflects
the ‘happiness culture’ in the contemporary Western society, where striving for and return to
optimal functioning is regarded as a moral duty. Those who experience profound and continuing
grief are then seen as ‘the grieving killjoy’, having to navigate societal expectations of keeping
one’s grief private and seek professional help so as not to ruin other people’s fun (Kofod, 2020).
Brinkmann (2016; 2020) situates medicalizing trends within broader diagnostic cultures,
MEDICALIZATION OF GRIEF 17
in which a variety of people and sectors––not just doctors and mental health industry, but also
patients and families, schools, businesses, policymakers, and popular cultures––use psychiatric
categories and language to “interpret, regulate and mediate various forms of self-understanding
and activities” (Brinkmann, 2016, p. 1).
The idea of grieving too much and too long which is implicit in the DSM-5 and ICD-11
diagnoses is markedly different from social expectations across time and cultures. For example,
in her historical analysis of how grief is articulated in Western philosophical and literary sources,
Kofod (2017) found that, in Romantic era Western Europe, grieving too little too short was to be
avoided. Grievers in this era were morally guided to “deliberately hold on to grief and live
heroically with a broken heart” (p. 51). Preoccupation with the deceased and emotional pain––an
experience that is presently being transformed into a psychiatric symptom in the present––was “a
mark of honor, a way to express one’s moral depth and sensibility, and sense of wisdom” (p. 52).
Tracing historical developments of grief theory from Freud to modern times, Granek (2010)
similarly finds that grief as psychological kind (echoing Ian Hacking’s human kinds) is a new
phenomenon, one that locates grief within the prevailing discourse of a disease model, which in
turn renders grief to be “privatized, specialized, and treated by mental health professionals” (p.
46).
Cultural Embeddedness of Grief and Homogenizing Effects of Medicalization
Social expectations around grief do not just vary across time, but also across cultures and
religions (Rosenblatt, 2013). Whereas Western theories of grief have tended to emphasize
working through grief and detachment from the deceased, some cultures have espoused
prolonged grief rituals, and promoted continuing bonds with the deceased (Klass, 1996; Wada &
Park, 2009). In fact, proposed grief disorder categories may be reflecting the worldview of the
MEDICALIZATION OF GRIEF 18
former, while risking to pathologize people holding the latter worldview. In our recent study
where we asked Canadian undergraduate students to rate to what extent they think the DSM’s
PCBD is a healthy or unhealthy form of grief, we found that those who are religious, women,
with previous bereavement experience, and those who believe continuing bonds are healthy,
perceived what is considered as symptoms of pathological grief in the DSM-5 as healthy (Wada
et al., 2019). Put differently, the DSM-5 criteria for PCBD may be reflective of the normative
idea of (ab)normalcy held by men, those who are secular, without previous experience of
bereavement, and who think continuing bonds with the deceased is unhealthy.
Proponents of establishing a grief disorder may argue that the risk of false positives for
culturally diverse people is already mitigated by the norm-deviation clause included in DSM and
ICD. This overriding clause specifies that a diagnosis is applicable only when grief reactions are
out of proportion, inconsistent with, or persist beyond the patient’s cultural and religious norms.
Although highly important, the argument that this clause takes care of cultural diversity and the
risk of false positives is simplistic and contains some issues. First, research that validates
diagnostic categories predominantly relies on self-report questionnaires and for the most part,
these questionnaires assess only the presence of symptoms. Thus, despite being part of the
diagnostic criteria or description, how these ‘symptoms’, or self-reported levels of distress and
functioning for that matter, fit with cultural norms for the given respondent is not part of the
design of most epidemiological and validation studies (c.f., Frances, 1998).
Second, the norm-deviation clause puts a tremendous amount of weight on the clinician’s
shoulders, as it expects to become sociological and anthropological arbitrators of what is normal,
and to judge clients accordingly. They will also be left to grapple with vexed questions rooted in
the theory of mental disorder. For example, if nearly half of people who have lost a loved one by
MEDICALIZATION OF GRIEF 19
unnatural death qualify for PGD, as discussed above (Djelantik et al,, 2020), would it be fair to
say that their painful grief is an expected response and within the societal norm? Then would
these people disqualify for the diagnosis? This would defeat the purpose of establishing a grief-
specific diagnosis, as providing access to care to those who suffer such agonizing grief was a
chief justification for such a diagnosis. Lastly, the argument also fails to take into consideration
pervasive effects of psychiatric diagnosis and Western psychological knowledge that can
fundamentally change the ways people in other parts of the world construe their suffering and
their place in the society, and thus their way of living (Kirmayer, 2006; Mills, 2014; Watters,
2010).
Conclusion
Drawing the line between the normal and abnormal is a complicated act, as developments
associated with medicalizing grief make evident. In this chapter, I traced the contemporary
developments related to grief-specific disorders in the DSM-5, ICD-11, and the further changes
that are underway. Although proponents of the medicalization of grief have not settled on
whose/which diagnostic criteria and name should be adopted, the move to establish a grief-
specific disorder has been set into motion. One may see this historical shift as a sign of scientific
progress––that a diagnostic category would provide sufferers with a name with which they can
make sense of their pain and use it to access professional care. I do not doubt that the effort into
this shift reflects genuine desire to alleviate human suffering. However, resorting to
medicalization as a primary, or only solution, introduces fundamental paradoxes and
contradictions, that are presently underemphasized in the literature.
Granek (2010) argued that the new way of understanding grief as a psychological kind
has already “changed the very experience of what it means to be mourner” not only in other
MEDICALIZATION OF GRIEF 20
cultures, but also in Western society (p. 67). As medicalizing discourses become increasingly
dominant, the culture of the professional community is also likely to change. Rosenblatt (2020)
argued that “grief counselors and grief therapists cannot carry out their work in a culture-free
way” (p. 221), which can alienate the bereaved who do not espouse a disease model.
Medicalizing grief is intuitively attractive for grief professionals as it legitimizes their status and
creates a public dependency (Conrad, 2007; Gergen, 1990), yet the grief profession itself may
become the agent of the culture that polices grief (Klass & Chow, 2011). At the same time, it is
completely possible that a phenomenon that once became accepted as a mental disorder gets
depromoted, becoming a transient disorder in human history (Hacking, 1998). As stated in the
Task Force on Diagnostic Alternatives (2020), “accepted orthodoxies at any one time may be the
myth of future generations” (para 5).
MEDICALIZATION OF GRIEF 21
References
American Psychiatric Association (1980). Diagnostic and statistical manual of mental disorders
(3rd ed). Author.
American Psychiatric Association (2000). Diagnostic and statistical manual of mental disorders
(4th ed., Text Revision). Author.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders
(5th ed.). https://doi.org/10.1176/appi.books.9780890425596
American Psychiatric Association. (2020a). Covid-19 Pandemic guideline document:
Considerations for family and other personal losses due to Covid-19-related death.
https://www.psychiatry.org/File%20Library/Psychiatrists/APA-Guidance-Death-Dying-
Personal-Bereavement.pdf
American Psychiatric Association. (2020b). View and comment on recently proposed changes to
DSM-5. https://www.psychiatry.org/psychiatrists/practice/dsm/proposed-changes
Batstra, L., & Frances, A. (2012). DSM-5 further inflates attention deficit hyperactivity disorder.
The Journal of Nervous and Mental Disease, 200(6), 486–488.
https://doi.org/10.1097/NMD.0b013e318257c4b6
Boelen, P. A, & Lenferink, L. I. M. (2020). Comparison of six proposed diagnostic criteria sets
for disturbed grief. Psychiatry Research, 285, 112786.
https://doi.org/10.1016/j.psyches.2020.112786
Boelen, P. A., & Prigerson, H. G. (2012). Commentary on the inclusion of persistent complex
bereavement-related disorder in DSM-5. Death Studies, 36(9), 771–794.
https://doi.org/10.1080/07481187.2012.706982
Bonanno, G. A., Wortman, C. B., Lehman, D. R., Tweed, R. G., Haring, M., Sonnega, J., Carr,
MEDICALIZATION OF GRIEF 22
D., & Nesse, R. M. (2002). Resilience to loss and chronic grief: a prospective study from
preloss to 18-months postloss. Journal of Personality and Social Psychology, 83(5),
1150–1164. https://doi.org/10.1037//0022-3514.83.5.1150
Brinkmann, S. (2016). Diagnostic cultures: A cultural approach to the pathologization of
modern life. Routledge.
Brinkmann, S. (2016). Grief: The price of love. Polity.
British Psychological Society. (2011). Response to the American Psychiatric Association: DSM-
5 development. http://apps.bps.org.uk/_publicationfiles/consultationresponses/DSM-
5%202011%20-%20BPS%20response.pdf
Bryant, R. A. (2014). Prolonged grief: Where to after Diagnostic and Statistical Manual of
Mental Disorders, 5th Edition? Current Opinion in Psychiatry, 27(1), 21–26.
https://doi.org/10.1097/YCO.0000000000000031
Clayton, P. J., Herjanic, M., Murphy, G. E., & Woodruff, R., Jr (1974). Mourning and depression:
their similarities and differences. Canadian Psychiatric Association Journal, 19(3), 309–
312. https://doi.org/10.1177/070674377401900312
Conrad, P. (2007). The medicalization of society. The Johns Hopkins University Press.
Djelantik, A., Smid, G. E., Mroz, A., Kleber, R. J., & Boelen, P. A. (2020). The prevalence of
prolonged grief disorder in bereaved individuals following unnatural losses: Systematic
review and meta regression analysis. Journal of Affective Disorders, 265, 146–156.
https://doi.org/10.1016/j.jad.2020.01.034
Fujisawa, D., Miyashita, M., Nakajima, S., Ito, M., Kato, M., & Kim, Y. (2010). Prevalence and
determinants of complicated grief in general population. Journal of affective disorders,
127(1-3), 352–358. https://doi.org/10.1016/j.jad.2010.06.008
MEDICALIZATION OF GRIEF 23
Frances A. (1998). Problems in defining clinical significance in epidemiological studies.
Archives of general psychiatry, 55(2), 119. https://doi.org/10.1001/archpsyc.55.2.119
Frances, A. (2013). Saving the normal. An insider’s revolt against out-of-control psychiatric
diagnosis, DSM-5, big pharma, and the medicalization of ordinary life. William Morrow.
Hacking, I. (1998). Mad travelers: Reflections on the reality of transient mental illnesses.
Harvard University Press.
Haslam, N. (2016). Concept creep: Psychology's expanding concepts of harm and pathology.
Psychological Inquiry, 27(1), 1–17. https://doi.org/10.1080/1047840X.2016.1082418
Illouz, E. (2008). Saving the modern soul: Therapy, emotions, and the culture of self-help.
University of California Press.
Galatzer-Levy, I. R., & Bonanno, G. A. (2012). Beyond normality in the study of bereavement:
heterogeneity in depression outcomes following loss in older adults. Social Science &
Medicine, 74(12), 1987–1994. https://doi.org/10.1016/j.socscimed.2012.02.022
Gergen, K. J. (1990). Therapeutic professions and the diffusion of deficit. Journal of Mind and
Behavior, 11(3-4), 353–367.
Granek L. (2010). Grief as pathology: The evolution of grief theory in psychology from Freud to
the present. History of psychology, 13(1), 46–73. https://doi.org/10.1037/a0016991
Granek, L. (2016). Medicalizing grief. In D. L. Harris & T. C. Bordere (Eds.), Handbook of
social justice in loss and grief: Exploring diversity, equity, and inclusion (pp. 111–124).
Routledge.
Kamens, S. R., Elkins, D. N., & Robbins, B. D. (2017). Open letter to the DSM-5. Journal of
Humanistic Psychology, 57(6), 675–687. https://doi.org/10.1177/0022167817698261
Kersting, A., Brähler, E., Glaesmer, H., & Wagner, B. (2011). Prevalence of complicated grief in
MEDICALIZATION OF GRIEF 24
a representative population-based sample. Journal of affective disorders, 131(1-3), 339–
343. https://doi.org/10.1016/j.jad.2010.11.032
Kirmayer, L. J. (2006). Beyond the ‘new cross-cultural psychiatry’: Cultural biology, discursive
psychology and ironies of globalization. Transcultural Psychiatry, 43, 126-144.
https://doi.org/10.1177/1363461506061761
Klass, D. (1996). Ancestor Worship in Japan: Dependence and the Resolution of Grief. OMEGA–
Journal of Death and Dying, 33(4), 279–302. https://doi.org/10.2190/F19D-TAX L -
M8DY-KPBQ
Klass, D. & Chow, A. Y. M. (2011). Culture and ethnicity in experiencing, policing, and
handling grief. In R. A. Neimeyer, H. Winokuer, D. L. Harris, & G. Thornton (Eds.)
Grief and Bereavement in Contemporary Society (pp. 341–353) Routledge.
Kleinman, A. (2012). Culture, bereavement, and psychiatry. The Lancet, 379, 608–609.
https://doi.org/10.1016/S0140-6736(12)60258-X
Kofod, E. H. (2017). From morality to pathology: A brief historization of contemporary Western
grief practices and understanding. Nordic Psychology, 69, 47-60.
https://doi.org/10.1080/19012276.2016.1267914
Kofod, E. H. (2020). The grieving killjoy: Bereavement, alienation and cultural critique. Culture
& Psychology. https://doi.org/10.1177/1354067X20922138
Kofod, E. H., & Brinkmann, S. (2017). Grief as a normative phenomenon: The diffuse and
ambivalent normativity of infant loss and parental grieving in contemporary Western
culture. Culture & Psychology, 23(4), 519-533.
https://doi.org/10.1177/1354067X17692294
Lenferink, L., Nickerson, A., de Keijser, J., Smid, G. E., & Boelen, P. A. (2020). Trajectories of
MEDICALIZATION OF GRIEF 25
grief, depression, and posttraumatic stress in disaster-bereaved people. Depression and
Anxiety, 37(1), 35–44. https://doi.org/10.1002/da.22850
Lichtenthal, W. G., Cruess, D. G., & Prigerson, H. G. (2004). A case for establishing
complicated grief as a distinct mental disorder in DSM-V. Clinical psychology review,
24(6), 637–662. https://doi.org/10.1016/j.cpr.2004.07.002
Maercker, A., Brewin, C. R., Bryant, R. A., Cloitre, M., van Ommeren, M., Jones, L. M.,
Humayan, A., Kagee, A., Llosa, A. E., Rousseau, C., Somasundaram, D. J., Souza, R.,
Suzuki, Y., Weissbecker, I., Wessely, S. C., First, M. B., & Reed, G. M. (2013).
Diagnosis and classification of disorders specifically associated with stress: proposals for
ICD-11. World psychiatry, 12(3), 198–206. https://doi.org/10.1002/wps.20057
Mills, C. (2014). Decolonizing global mental health. The psychiatry of the majority of world.
Routledge.
Newson, R. S., Boelen, P. A., Hek, K., Hofman, A., & Tiemeier, H. (2011). The prevalence and
characteristics of complicated grief in older adults. Journal of affective disorders, 132(1-
2), 231–238. https://doi.org/10.1016/j.jad.2011.02.021
Nigg, J. T., & Barkley, R. A. (2014). Attention-deficit/hyperactivity disorder. In E. J. Mash & R.
A. Barkley (Eds.), Child psychopathology (pp. 75–144). The Guilford Press.
Open Letter to DSM-5. (2011). http://www.ipetitions.com/petition/dsm5/
Paris, J., Bhat, V., & Thombs, B. (2016). Is adult Attention-Deficit Hyperactivity disorder
overdiagnosed? Canadian Journal of Psychiatry, 60(7), 324-328,
https://doi.org/10.1177/070674371506000705
Parkes, C. M. (2014). Diagnostic criteria for complications of bereavement in DSM-5.
Bereavement Care, 33, 113-1117.
MEDICALIZATION OF GRIEF 26
Piper, B. J., Ogden, C. L., Simoyan, O. M., Chung, D. Y., Caggiano, J. F., Nichols, S. D., &
McCall, K. L. (2018). Trends in use of prescription stimulants in the United States and
Territories, 2006 to 2016. PloS one, 13(11), e020610
https://doi.org/10.1371/journal.pone.0206100
Rosenblatt, P. C. (2020). Challenges to cultural outsiders from the culture of grief
counselling/therapy. Journal of Loss and Trauma, 25(3), 207-223,
https://doi.org/10.1080/15325024.2019.1672936
Prigerson, H. G., Horowitz, M. J., Jacobs, S. C., Parkes, C. M., Aslan, M., Goodkin, K., Raphael,
B., Marwit, S. J., Wortman, C., Neimeyer, R. A., Bonanno, G. A., Block, S. D., Kissane,
D., Boelen, P., Maercker, A., Litz, B. T., Johnson, J. G., First, M. B., & Maciejewski, P.
K. (2009). Prolonged grief disorder: Psychometric validation of criteria proposed for
DSM-V and ICD-11. PLoS medicine, 6(8), e1000121.
https://doi.org/10.1371/journal.pmed.1000121
Rosenblatt, P. C. (2013). The concept of complicated grief: Lesson from other cultures. In M.
Stroebe, H. S. Schut, & J. Van den Bout (Eds.), Complicated grief: Scientific foundations
for health care professionals (pp. 27-39). Routledge.
Rosenblatt (2020) Challenges to cultural outsiders from the culture of grief counseling/therapy,
Journal of Loss and Trauma, 25(3), 207-223,
https://doi.org/10.1080/15325024.2019.1672936
Rosner R. (2015). Prolonged grief: setting the research agenda. European Journal of
Psychotraumatology, 6, 27303. https://doi.org/10.3402/ejpt.v6.27303
Simon, N. M., Shear, M. K., Reynolds, C. F., Cozza, S. J., Mauro, C., Zisook, S., Skritskaya, N.,
MEDICALIZATION OF GRIEF 27
Robinaugh, D. J., Malgaroli, M., Spandorfer, J., & Lebowitz, B. (2020). Commentary on
evidence in support of a grief-related condition as a DSM diagnosis. Depression and
Anxiety, 37(1), 9–16. https://doi.org/10.1002/da.22985
Shear, M. K., Simon, N., Wall, M., Zisook, S., Neimeyer, R., Duan, N., Reynolds, C., Lebowitz,
B., Sung, S., Ghesquiere, A., Gorscak, B., Clayton, P., Ito, M., Nakajima, S., Konishi, T.,
Melhem, N., Meert, K., Schiff, M., O'Connor, M. F., First, M., … Keshaviah, A. (2011).
Complicated grief and related bereavement issues for DSM-5. Depression and Anxiety,
28(2), 103–117. https://doi.org/10.1002/da.20780
Shear M. K. (2012). Grief and mourning gone awry: Pathway and course of complicated grief.
Dialogues in Clinical Neuroscience, 14(2), 119–128.
Strong, T. (2017). Medicalizing counselling: Issues and tensions? Palgrave Macmillan.
Task Force on Diagnostic Alternatives (2020, Feb). Regarding the reform and revision of
diagnostic systems: An open letter from Div. 32 (Society for Humanistic Psychology).
https://www.apadivisions.org/division-32/leadership/task-forces/diagnostic-alternatives
Vance, M. C. & Bui, E (2018). Pharmacotherapy of pathological grief responses. In E. Bui (Ed.)
Clinical handbook of bereavement and grief reactions. Humana Press.
https://doi.org/10.1007/978-3-319-65241-2_13
Wada, K., Buote, L. C., & Kawamoto, S. (2020). Perceptions of ideal
grief and continuing bonds: Undergraduate student survey on persistent complex
bereavement disorder. Death Studies. Advance online publication,
https://doi.org/10.1080/07481187.2020.1795747
Wada, K., & Park, J. (2009). Integration of Buddhist psychology into grief counseling. Death
Studies, 33(7), 657-683. https://doi.org/10.1080/07481180903012006
MEDICALIZATION OF GRIEF 28
Wakefield J. C. (1992). The concept of mental disorder. On the boundary between biological
facts and social values. The American Psychologist, 47(3), 373–388.
https://doi.org/10.1037//0003-066x.47.3.373
Wakefield, J. C. (2011). Should uncomplicated bereavement-related depression be reclassified as
a disorder in the DSM-5: Response to Kenneth S. Kendler’s statement defending the
proposal to eliminate the bereavement exclusion. The Journal of Nervous and Mental
Disease, 199(3), 203–208. https://doi.org/10.1097/NMD.0b013e31820cd155
Wakefield, J. (2013). Is complicated/prolonged grief a disorder? Why the proposal to a category
of complicated grief disorder to the DSM-5 is conceptually and empirically unsound. In
M. Stroebe, H. Schut, & J. van den Bout (Eds.), Complicated Grief: Scientific
foundations for healthcare providers (pp. 99-112). New York, NY: Routledge
Watters, E. (2010). Crazy like us: The globalization of the American psyche. Free Press.
World Health Organization (2020). International statistical classification of diseases and related
health problems (11th ed.). https://icd.who.int/
Zisook, S., Pies, R., & Iglewicz, A. (2013). Grief, depression, and the DSM-5. Journal of
Psychiatric Practice, 19(5), 386–396.
https://doi.org/10.1097/01.pra.0000435037.91049.2f
