Tag: grief

05/3/22

Medicalizing Normal, Human Grief

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Well, it’s official. If your bereavement over the death of someone close to you “lasts longer than social norms and causes distress or problems,” it could be a psychiatric disorder. The symptoms of what is called Prolonged Grief Disorder (PGD) include: avoiding reminders that the person is dead; emotional numbness; feeling life is meaningless; feeling intense loneliness, being detached from others; intense emotional pain related to the death. PGD can be diagnosed if someone is experiencing these symptoms within 12 months of the death of a loved one for adults or within 6 months for children or adolescents.

Prolonged Grief Disorder is the newest disorder added to the DSM. After studies suggested that many people were experiencing persistent difficulties with bereavement, PGD was approved by the APA’s Board of Trustees and Assembly in the fall of 2020 and included in the text revision of the DSM-5 (DSM-5-TR) published in March of 2022. The APA CEO and Medical Director said including prolonged grief disorder in the DSM-5-TR will mean that mental health clinicians and family members will “share an understanding of what normal grief looks like and what might indicate a long-term problem.” The President of the APA was quoted as saying:

The circumstances in which we are living, with more than 675,000 deaths due to COVID, may make prolonged grief disorder more prevalent. . . . Grief in these circumstances is normal, but not at certain levels and not most of the day, nearly every day for months. Help is available.

The reaction by mental health professionals has not been all supportive of the APA adding grief to the DSM listing of psychiatric disorders. Debate over this action has been going on for over a decade and it seems the APA has been incrementally moving in this direction. In 2013 when the bereavement exclusion was removed from the DSM-5 diagnosis of major depression, Allen Frances, who was the chair for the DSM-IV, thought it was a dreadful mistake that flew in the face of clinical common sense. He ranked it as the second worst mistake within the DSM-5. In a 2012 NYT article, “Grief Could Join List of Disorders,” he said: “What I worry about most is that the revisions will medicalize normality and that millions of people will get psychiatric labels unnecessarily.”

A recent NYT article about the addition of PGD to the DSM, “How Long Should It Take to Grieve? Psychiatry Has Come Up With an Answer,” said the new diagnosis was meant to apply to a narrow section of the population whose struggles with bereavement and grief kept them from resuming their previous activities. Joanne Cacciatore, who runs a retreat for bereaved people and has written extensively on grief, said she utterly disagreed that grief could be a mental illness. “To me, that is an incredibly dangerous move, and short sighted.”

Ellen Barry, the author of “How Long Should It Take to Grieve?”, predicted the new diagnosis will most likely open a stream of funding for treatments, “and set off a competition for approval of medicines by the Food and Drug Administration.” She noted how Holly Prigerson other researchers are investigating naltrexone in clinical trials as a form of grief therapy. Donna Schuurman, an internationally recognized authority on grief, predicted in “The Grief Pill is Coming!” that it will become “another massive disappointment in a long line of pharmaceutical marketing deceptions.” Their hypothesis is that PGD is a disorder of addiction; and that patients with PGD continue to “crave” their loved ones after they have died, as a result of the positive reinforcement of their memories of loved ones.

The Origins of Prolonged Grief Disorder

The origins of PGD date back to the 1990s and the work of a psychiatric epidemiologist named Holly Prigerson. She was part of a research team examining the effectiveness of depression treatment in older adults. She noticed many individuals responded well to antidepressant medications, but seemed to be unaffected when she looked at the grief measures used in the study. Her observations were dismissed by psychiatrists on the research team. She was told grief was normal, but she didn’t ignore her observations; she did more research.

Her further research showed that for most people, symptoms of grief peaked at six months postloss, six months after the death. In “An Empirical Examination of the Stage Theory of Grief,” she said a depressive mood in normally bereaved individuals tended to peak around six months postloss. Yearning, not depressed mood was the significant psychological response to natural death. She suggested her findings should lead to a revision of the DSM.

The results also offer a point of reference for distinguishing between normal and abnormal reactions to loss. Given that the negative grief indicators all peak within 6 months, those individuals who experience any of the indicators beyond 6 months postloss would appear to deviate from the normal response to loss. These findings also support the duration criterion of 6 months postloss for diagnosing complicated grief disorder, or what is now referred to as prolonged grief disorder. Unlike the term complicated, which is defined as “difficult to analyze, understand, explain,” prolonged grief disorder accurately describes a bereavement-specific mental disorder based on symptoms of grief that persist longer than is normally the case (ie, >6 months postloss based on the results of the present study). Furthermore, prolonged grief disorder permits the recognition of other psychiatric complications of bereavement, such as major depressive disorder and posttraumatic stress disorder. Additional analyses are needed to examine grief trajectories among those meeting criteria for prolonged grief disorder.

So it seems that Prigerson’s work and that of others who built upon it, led ultimately to the recent action by the American Psychiatric Association making PGD a formal diagnosis. Around 5% of the population experience grief feelings which are profoundly different, longer-lasting and more harmful than the typical bereavement after the death of a loved one. And according to some mental health professionals, this grief can be reliably distinguished from other MH conditions such as depression or post-traumatic stress disorder. Maarten Eisma told Gizmodo, “It diverges from normal grief in its duration and intensity as well as in its impact on everyday life.”

Prigerson said the American Psychiatric Association “begged and pleaded” to define the syndrome conservatively as a year after death to avoid a public backlash. The concern was that everyone feels they still feel some grief at six months. “It just seems like you’re pathologizing love.” She estimated the criteria for PGD should apply to around 4% of bereaved people.

Those who oppose the new diagnosis seem to voice concerns similar to that of Allen Frances, that it gives individuals a diagnostic label unnecessarily; it medicalizes normal human grief experience. Joanne Cacciatore told Gizmodo that the diagnostic criteria for PGD unfairly targeted a subset of grieving people to be diagnosed with a mental illness. Her own research with bereaved parents suggested a majority could experience symptoms that could lead to a diagnosis of PGD or other psychiatric diagnoses up to four years after their child’s death. If this many parents can feel this amount of grief, “perhaps it is the measures that are flawed, not the grievers.”

For example, the criteria states that at one year, you can be diagnosed with PGD if you are intensely yearning for the person who died. What parent would not yearn for a child who died? Intense emotional pain? After such traumatic losses, what person would not feel intense emotional pain one year later?

Cacciatore thinks the diagnostic system is “absolutely broken, and we need an ethical change.” Psychological care should not depend soley on a diagnosis. She thinks we need better grief support education. We need more facilitators and facilities to care for people who are grieving.

Sheila Vakharia noted that in a world where thousands of Americans per week are dying in an ongoing pandemic, how can anyone’s grief over the losses they’ve experienced be considered abnormal? “For a diagnosis such as this to be released at this moment, it just feels tone deaf, and it feels decontextualized, both within the broader policy environment and with the fact that we are in a mass disabling and a mass death event—we’re in a global pandemic.”

For more information on diagnosing grief, see “The Death of Grief” and “Pathologizing Grief.”

12/18/18

The Death of Grief

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The field of psychiatric diagnosis suffered a significant loss in the spring of 2013 with the death of the bereavement exclusion. It was not a peaceful ending, as several experts fought desperately to keep it alive within DSM-5. But the efforts of psychologists like Joann Cacciatore and psychiatrists such as Allen Frances were not successful. The American Psychiatric Association published the DSM-5 without the bereavement exclusion and effectively eliminated any diagnostic distinction between bereavement and major depression. Grief, for all intensive purposes, was dead.

Dr. Joann Cacciatore, a psychologist who specializes in counseling individuals affected by traumatic death, lamented this passing in her article, “The Death of Grief, the Birth of Mental Illness.” She said: “Grief is not a disease, it is not an illness, it is not depression. It is in fact, an expression of love. Grief can only be a disease if love is.” She noted how the change increased the likelihood that grief would be misdiagnosed as Major Depressive Disorder and then mistakenly treated with psychotropic medications. “There is no sound evidence that they are effective for grief. Research shows that bereaved parents are already medicated earlier than can be justified by current evidence.”

We are saddened and disappointed by the recent announcement that the DSM-5 task force has finalized the decision to eliminate the bereavement exclusion from the Major Depressive Disorder diagnosis in the upcoming edition of the manual. This move will allow clinicians, including counselors, general physicians, social workers, and psychiatrists, to diagnose a major mental disorder in bereaved parents and other grieving individuals as early as two weeks following the death of a loved one should they meet the DSM-5’s criteria for depression. Importantly, many of you will recognize these criteria which include sadness, feelings of emptiness, crying, sleep and weight changes, guilt and regrets, and loss of interest or energy. Yet, all of these symptoms are quite common in grief, and particularly after the death of a baby or child which evokes enduring and intense reactions in parents.

Allen Frances, a psychiatrist and chair of the DSM-IV, repeatedly pleaded with the APA to not medicalize grief in “Last Plea to DSM 5: Save Grief from the Drug Companies.” He even ranked it as the second worst mistake within the DSM-5. He noted it would be a “bonanza for drug companies, but a disaster for grievers.” Frances referenced and quoted the concerns of Joann Cacciatore, Russell Friedman (the co-founder of The Grief Recovery Institute Educational Foundation) and Jerry Wakefield, a professor of Social Work. Frances said: “The DSM 5 medicalization of grief has been opposed by editorials and scientific papers in the major medical and scientific journals, by hundreds of newspaper  articles.”

After 40 years and lots of clinical experience, I can’t distinguish at two weeks between the symptoms of normal grief and the symptoms of mild depression- and I challenge anyone else to do so. This is an inherently unreliable distinction. And I know damn well that primary care doctors can’t do it in a 7 minute visit. This should have been the most crucial point in DSM 5 decision making because primary care docs prescribe 80% of all antidepressants and will be most likely to misuse the DSM 5 in mislabeling grievers. . . . Grief is a normal and inescapable part of the human condition, not to be confused with psychiatric illness. Let us respect the dignity of mourning and treat it medically only when it becomes melancholia.

Another eminent psychiatrist, Ronald Pies, disagreed with Allen Frances. He believes eliminating the bereavement exclusion was a reasonable decision. Pies said grief and depression are distinct constructs and bereavement does not “immunize” the person from major depression. He said the bereavement exclusion was removed from the DSM-5 for two main reasons: 1) major depression is potentially a lethal disorder, “with an overall suicide rate of about four percent”; and 2) there is no clinical or scientific evidence to distinguish bereavement-related grief from major depression. “Disqualifying a patient from a diagnosis of major depression” after the death of a loved one “closes the door on potentially life-saving interventions” (meaning medication).

It is important to understand that the DSM-5 criteria merely allow the diagnosis of MDD when the recently bereaved person meets all required symptom, severity, duration, and impairment criteria for MDD. Nothing in the manual compels a diagnosis of MDD shortly after bereavement.

In conclusion, Pies said while normal grief should not be medicalized, neither should major depression be normalized simply because it occurred “in the context of recent bereavement.” Dr. Pies seems to be arguing that the problems of a “falsely positive” in diagnosis of major depression in the context of bereavement are outweighed by the dangers from a “false negative” in diagnosis. Yet there are some who would strongly dispute this conclusion. Instead they see removing the bereavement exclusion as an example of how psychiatry relentlessly seeks to expand its reach.

In “Elimination of the Bereavement Exclusion: History and Implications,” psychologist Philip Hickey gave a history of the DSM and how the bereavement exclusion was first added, then whittled away over time. He noted how the DSM-I did not suggest its “disorders” were chemical imbalances or “illnesses-just-like-diabetes.” Rather, the “disorders” were conceived as reactions of the personality and believed to be of  “psychogenic origin.” Hickey then gave a couple of quotes from the DSM-I illustrating his point.

The emphasis on psychological explanations was not merely a reflection of Adolf Meyer’s influence, but a reflection of the fact that a great many psychiatrists at that time (1952) subscribed to this position and were entirely comfortable with these types of psychoanalytic explanations.

But the introduction of antipsychotic and antidepressant medications in the 1950’s changed things. They offered a pathway to “prima facie medical legitimacy.” What was needed was a label that posed as a diagnosis; time for a 15-minute med check; and a quickly-written prescription. “No longer would it be necessary to delve collaboratively and time-consumingly into a client’s childhood conflicts, current fears, or counter-productive relationships.” Don’t be too quick to dismiss Hickey’s rhetoric. In an address to the American College of Neuropsychopharmacology in 2000, Allen Frances said the DSM system and psychopharmacology grew up together “and have had a strong influence upon one another.”

The psychopharmacological revolution required that there be a method of more systematic and reliable psychiatric diagnosis. This provided the major impetus for the development of the structured assessments and the research diagnostic criteria that were the immediate forerunners of DSM-III. In turn, the availability of well-defined psychiatric diagnoses stimulated the development of specific treatments and increasingly sophisticated psychopharmacological studies.

Hickey said as more psychiatric drugs came to market in the 1960s, “it became increasingly clear the psychogenic framework of the DSM-I had to go.” Thus a movement to develop a cause-neutral diagnostic system began with the DSM-II and continued on through the DSM-III under the guidance of Robert Spitzer.  The concept of cause-neutrality, according to Hickey, meant that: “regardless of why a person is despondent, if he scores five or more yeses on the checklist, he has major depression, the ‘illness,’ and therefore needs medical treatment.” Over time, as the use of DSM diagnostic criteria became central to the conceptualization of depression and grief, the bereavement exclusion included by Robert Spitzer in the DSM-III seemed more and more problematic for mainline psychiatry. And bereavement as a cause of grief-related depression became increasingly irrelevant.

The death of grief is inversely related to the birth and growth of what Hickey called the biological-pathology perspective. The bereavement exclusion was finally pronounced dead with the publication of DSM-5 in 2013. “The bogus cause-neutral perspective (in reality the bogus biological-pathology perspective) was now the de facto psychiatric position, with no exceptions.”

The notion that one can gain an understanding of a person’s sadness by ignoring its causes and contexts, and simply bumping his superficial presentation against a fabricated checklist, and seeing if he scores hits on at least five, is simply inane. It’s like trying to understand a poem by counting the words. Anyone with the slightest compassion or understanding of human experience can see this.

For more on the concerns with psychiatric diagnosis see: “Where There’s Smoke …” and “Psychiatric Huffing and Puffing.” For more on the APA actions on bereavement, see: “Pathologizing Grief.”