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Complicated grief and bereavement-related depression as distinct disorders: Preliminary empirical validation in elderly bereaved spouses

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This study sought to determine whether a set of symptoms interpreted as complicated grief could be identified and distinguished from bereavement-related depression and whether the presence of complicated grief would predict enduring functional impairments. Data were derived from a study group of 82 recently widowed elderly individuals recruited for an investigation of physiological changes in bereaved persons. Baseline data were collected 3-6 months after the deaths of the subjects' spouses, and follow-up data were collected from 56 of the subjects 18 months after the baseline assessments. Candidate items for assessing complicated grief came from a variety of scales used to evaluate emotional functioning (e.g., the Hamilton Depression Rating Scale, the Brief Symptom Inventory). The outcome variables measured were global functioning, medical illness burden, sleep, mood, self-esteem, and anxiety. A principal-components analysis conducted on intake data (N = 82) revealed a complicated grief factor and a bereavement-depression factor. Seven symptoms constituted complicated grief: searching, yearning, preoccupation with thoughts of the deceased, crying, disbelief regarding the death, feeling stunned by the death, and lack of acceptance of the death. Baseline complicated grief scores were significantly associated with impairments in global functioning, mood, sleep, and self-esteem in the 56 subjects available for follow-up. The symptoms of complicated grief may be distinct from depressive symptoms and appear to be associated with enduring functional impairments. The symptoms of complicated grief, therefore, appear to define a unique disorder deserving of specialized treatment.
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PERSPECTIVES ON CARE
AT THE CLOSE OF LIFE
Caring for Bereaved Patients
All the Doctors Just Suddenly Go”
Holly G. Prigerson, PhD
Selby C. Jacobs, MD, MPH
. . . our sorrow lives in us as an indestructible force, only changing
itsform...andpassing from pain into sympathy—the one poor word
which includes all our best insight and our best love.
George Eliot, Adam Bede1
THE PATIENT’S STORY
Mrs A, a longtime patient of Dr M, is 77 years old and has
been widowed for 2 years. Her husband, a well-respected
public figure, died in December 1998 after a protracted course
of diabetes, hypertension, coronary artery disease, conges-
tive heart failure, end-stage renal disease, and, ultimately,
renal failure. The husband, who was not Dr M’s patient, had
been cared for at home by Mrs A until his final 10-week hos-
pitalization, which involved repeated admissions to the in-
tensive care unit. One of their sons moved into their home
temporarily to help care for his father, while another son
and a daughter live nearby.
During the first year of widowhood, Mrs A visited Dr M
more than usual—roughly every other month. Her visits were
nominally to address somatic complaints (eg, insomnia, per-
petual weeping). It was clear to both Mrs A and Dr M that
bereavement was the major source of these problems, so
much of the time was spent addressing that explicitly. Dr
M offered a sleeping pill, which she declined. Mrs A began
seeing a psychiatrist and attending a bereavement support
group. She was interested in obtaining additional informa-
tion about grief and bereavement, including written mate-
rial and Web resources.
PERSPECTIVES
Mrs A and Dr M were each interviewed by a Perspectives
editor in December 2000.
MRS A: Immediately following my husband’s death there was
constant pain. I did things, but it was very difficult; he was in
my mind all the time. I was running videos of his last days in
my head—everything that had happened in his care, and how
he reacted, and what the doctors were doing with him—it was
not a very good way to die. I also felt numb ....It’s hard to
recall what happened and why I made certain decisions. I was
depressed and couldn’t sleep well. And I cried. I’ve never cried
as much as I cried for the first few months after he died. I still
cry when I think about it ....I’ll never get rid of that pain. I
know there is anecdotal evidence that if people had cancer, it
can recur after a spouse or a partner or a child’s death. I’ve
had cancer 3 times and I didn’t want that to happen again. That’s
one reason I really worked at trying to get myself steady.
DRM: I saw Mrs A about 3 weeks after her husband died. I
reassured her that grief resolution takes time. I told her that
grief was like a long tunnel, which she had entered suddenly,
and that she was now in the dark, but that she would eventu-
ally emerge back out into the light. But I said that just like when
you come out of a tunnel, things are different on the other side.
She seemed to understand. When I saw her in November 1999,
she complained of insomnia and had a lot of other somatic com-
plaints. I noticed the date and I told her that she might reex-
perience intense grief again, around the time of the anniver-
sary of her husband’s death. In the following year, I saw her
only 3 or 4 times. She was no longer tearful in the office. She
Despite the frequency with which physicians encounter
bereaved patients, medical training offers little guid-
ance in the provision of bereavement (“after”) care. Phy-
sicians are often uncertain of how to distinguish be-
tween normal and pathological grief reactions in their
bereaved patients, and how to manage their health care.
Bereavement is associated with declines in health, inap-
propriate health service use, and increased risk of death.
Identifying and intervening on behalf of bereaved pa-
tients could help address those increased risks. We ex-
amine the experience of a woman widowed for 2 years
to illustrate distinctions between symptoms and out-
comes of uncomplicated and complicated grief, recom-
mend approaches to physician interactions with be-
reaved patients, and offer guidelines for professional
intervention in aftercare.
JAMA. 2001;286:1369-1376 www.jama.com
Author Affiliations: Departments of Psychiatry (Drs Prigerson and Jacobs) and Epi-
demiology and Public Health (Dr Prigerson), Yale University School of Medicine,
New Haven, Conn.
Corresponding Author and Reprints: Holly G. Prigerson, PhD, Department of Psy-
chiatry, Connecticut Mental Health Center, 34 Park St, Room 522, New Haven,
CT 06519 (e-mail: Holly.Prigerson@yale.edu).
Perspectives on Care at the Close of Life is produced and edited at the University
of California, San Francisco, by Stephen J. McPhee, MD, Michael W. Rabow, MD,
and Steven Z. Pantilat, MD; Amy J. Markowitz, JD, is managing editor.
Perspectives on Care at the Close of Life Section Editor: Margaret A. Winker,
MD, Deputy Editor, JAMA.
©2001 American Medical Association. All rights reserved. (Reprinted) JAMA, September 19, 2001—Vol 286, No. 11 1369
was beginning to go out more, and to travel, and she made some
new friends.
WHY PHYSICIANS SHOULD PLAY A ROLE
IN BEREAVEMENT CARE
Although they may not always recognize it, physicians care
for many distressed, ailing, bereaved patients. Loss through
death is a common2and extremely stressful3,4 experience.
Bereavement heightens a person’s risk of depressive syn-
dromes5,6; sleep disruption7; increased consumption of to-
bacco, alcohol, and tranquilizers8,9; suicide attempts10,11; and
mortality.12,13 A comprehensive recent review14 concluded
that “the health of bereaved people in general is at risk (com-
pared to their non-bereaved counterparts).” The authors con-
tinue that high risk “has by now been well established. There
is no longer any doubt that the costs of bereavement in terms
of health can be extreme.”
As exemplified by Mrs A, widowed people visit physi-
cians more than they had when they were married—even af-
ter adjusting for age, sex, and socioeconomic and health sta-
tus.15 Bereavement tends to occur most often in later life,2when
health and adaptive capacities may already be compro-
mised. Consequently, the aging of the US population2im-
plies that physicians will devote an increasingly large per-
centage of time to caring for grief-stricken patients.16
DIFFERENCES BETWEEN UNCOMPLICATED
AND COMPLICATED GRIEF
Uncomplicated Grief
Normal, or uncomplicated, grief reactions are those that,
though painful, move the survivor toward an acceptance of
the loss and an ability to carry on with his or her life.17-20
Indicators of normal adjustment include the capacity to feel
that life still holds meaning, a sustained sense of self, self-
efficacy, trust in others, and an ability to reinvest in inter-
personal relationships and activities.17-20 Despite her dis-
tress over her husband’s death, Mrs A’s grief appears
uncomplicated: she accepts her husband’s death, her grief
symptoms have attenuated, she is involved with her family
and has made new friends, she is engaged in civic pursuits,
and she works to maintain her health.
Complicated Grief
In 1944, Lindemann19 described features of “morbid grief
reactions” (eg, ruminations about the deceased, hostility)
that he viewed as deviations from “normal” grief and that
required more aggressive intervention. Consistent with Lin-
demann’s observations, recent research demonstrates that
bereaved individuals with high levels of complicated grief
symptoms have substantially greater dysfunction than those
with lower levels of these symptoms.16,21-25 Studies find that
complicated grief symptoms: (1) form a coherent cluster of
symptoms distinct from bereavement-related depressive and
anxiety symptom clusters (ie, the underlying phenomenol-
ogy of the symptoms indicates they constitute separate syn-
dromes)21-26; (2) endure several years for some bereaved sub-
jects21,22,26; (3) predict substantial morbidity and adverse
health behaviors over and above depressive symptoms (eg,
cardiac events,22 high blood pressure,16,22 cancer,22 ulcer-
ative colitis,19 suicidality,21,22 social dysfunction,19,23,25,26 an-
ergia,19,23,25,26 changes in food, alcohol, and tobacco in-
take,22 and global dysfunction16,22-24,26); and (4) unlike
depressive symptoms, are not effectively reduced by inter-
personal psychotherapy and/or tricyclic antidepres-
sants.27,28 These findings revealed a need to identify and treat
complicated grief as a psychiatric disorder distinct from ma-
jor depressive disorder (MDD).
Responding to this perceived need, a panel of leading ex-
perts in psychiatric reactions to loss and trauma, depres-
sion, sleep disorders, and psychiatric taxonomy met to evalu-
ate the studies just described and, if the evidence justified
it, develop diagnostic criteria for complicated grief (TABLE 1)
(details of the consensus conference on traumatic grief, as
complicated grief was referred to at that time, are provided
elsewhere29,30). These diagnostic criteria do not constitute
an official psychiatric diagnosis and do not appear in the
Diagnostic and Statistical Manual of Mental Disorders, Fourth
Edition (DSM-IV), but the panel deemed the evidence to be
strongly supportive of complicated grief as a separate psy-
chiatric disorder (ie, distinctive symptoms, risk factors,
course, treatment response, and outcomes).29,30
Diagnostic Algorithm for Complicated Grief
The published refinement of the complicated grief criteria
set29 was found to be highly sensitive and specific—that is,
the diagnostic algorithm correctly classified 93% of the pre-
determined “cases” (true positives) and 93% of the prede-
termined “noncases” (true negatives) of complicated grief.29
In addition, those diagnosed with complicated grief accord-
ing to this algorithm have been shown to have significantly
greater impairment (eg, high blood pressure, functional
disability)16,23 than those not meeting the proposed criteria.
Additional (unpublished) analyses of the refined compli-
cated grief criteria set indicated that 6-month symptom
duration was superior to the 2-month duration specified
earlier, with respect to the reduction in the number of false
positives and to enhanced predicitive validity. For this rea-
son, we present a modified version of the diagnostic algo-
rithm29 and use the case of Mrs A to illustrate its applica-
tion (Table 1).
To receive a diagnosis of complicated grief, a bereaved
patient must first meet the necessary conditions outlined in
criterion A (extreme levels of 3 of the 4 “separation dis-
tress” symptoms, such as yearning for the deceased). If cri-
terion A has been met, then criterion B (extreme levels of 4
of the 8 “traumatic distress” symptoms, such as numbness,
feeling that part of oneself has died, assuming symptoms of
the deceased, disbelief, or bitterness) must be met. If the
bereaved patient’s symptoms in criteria A and B endure for
6 months or longer (criterion C) and these symptoms are
PERSPECTIVES ON CARE AT THE CLOSE OF LIFE
1370 JAMA, September 19, 2001—Vol 286, No. 11 (Reprinted) ©2001 American Medical Association. All rights reserved.
linked to substantial functional impairment (criterion D),
the individual satisfies the criteria for complicated
grief.16,23,29,30
Shock
Despite the fact that their grief is uncomplicated, patients like
Mrs A are often unprepared for how profoundly they are af-
fected by their loss. They frequently feel surprised by how much
turmoil and pain (sometimes described as psychic trauma) be-
reavement brings.26,31,32 Bereaved patients may report feeling
incredulous about the death.22,23,26,31,32 Immediately after her
husband’s death, Mrs A described a mild state of shock and
confusion. She had difficulty remembering the events culmi-
nating in her husband’s death, in understanding her own ac-
tions, and she felt emotionally numb. C. S. Lewis33 poi-
gnantly described this as an “invisible blanket between the
world and me.” By 2 years post-loss, Mrs A’s initial numb-
ness and detachment from others appear to have subsided (she
describes numbness in the past tense; she has made new
friends). Bereaved patients who appear disoriented, are in a
quasi-dissociative state, functioning on “automatic pi-
lot,”14,26,29 reflect their extreme difficulty in emotionally and
cognitively processing the loss. Remaining markedly stunned
or dazed at 6 months post-loss is a telling symptom of com-
plicated grief.29
Separation Distress
Mrs A describes the pain of grief, including the symptoms
of separation distress17,18,26,29,33: intrusive, intermittent yearn-
ing and thoughts about the deceased. Even highly function-
ing people may become transiently distraught and disabled
by a preoccupation with the loss.18,26,33 By 6 months post-
loss, however, most bereaved people begin to experience an
abatement of the acute separation distress symptoms.22,23,34
Dr M noticed that in the year following her husband’s death,
Mrs A was crying less as well as socializing and traveling
more, suggesting she was neither depressed nor otherwise
impaired by ruminations about her husband’s death (and
therefore she would not meet complicated grief criterion A).
Denial of the Death and Avoidance of Change
MRS A: I haven’t been [to the grave site]. I can’t. The thought
of it is painful. I have pictures of him all over and I can’t dis-
pose of his suits. I can’t do that without the help of my kids.
Table 1. Does Mrs A Meet Criteria for Complicated Grief at 2 Years Post-Loss?
Diagnostic Criteria*Does Mrs A Meet Criterion?
Criterion A
Person has experienced the death of a significant other and response
involves 3 of the 4 following symptoms, experienced at least daily
or to a marked degree
Intrusive thoughts about the deceased Yes, seems marked
Yearning for the deceased Yes, seems marked
Searching for the deceased Scans for clues or messages from deceased husband, but not to a
marked degree
Excessive loneliness since the death Not mentioned, which is unusual
Criterion A met? Unlikely
Criterion B
In response to the death, 4 of the 8 following symptoms experienced
at least daily or to a marked degree
Purposelessness or feelings of futility about the future Not to a marked degree (see criterion D)
Subjective sense of numbness, detachment, or absence of
emotional responsiveness
Initially yes, but no evidence that she continues to be numb
Difficulty acknowledging the death (eg, disbelief) No
Feeling that life is empty or meaningless No (see criterion D)
Feeling that part of oneself has died Not mentioned
Shattered worldview (eg, lost sense of security, trust, control) No
Assumes symptoms or harmful behaviors of, or related to, the
deceased person
No
Excessive irritability, bitterness, or anger related to the death Irritated about husband’s terminal care, but further probes needed to
determine whether excessive or not
Criterion B met? No
Criterion C
Disturbance (symptoms listed) must endure for at least 6 months Not at marked levels
Criterion D
The disturbance causes clinically significant impairment in social,
occupational, or other important areas of functioning
No, very active and engaged in activities that are meaningful to her (son’s
campaign, organized conferences); formed new relationship with male
friend; exercises
Does Mrs A meet criteria for complicated grief? No
*Modified version of traumatic grief criteria published previously.29 Modifications were based on results emerging from recent unpublished analyses to determine the most diag-
nostically sensitive and specific set of criteria for complicated grief (complicated grief was formerly called traumatic grief).
PERSPECTIVES ON CARE AT THE CLOSE OF LIFE
©2001 American Medical Association. All rights reserved. (Reprinted) JAMA, September 19, 2001—Vol 286, No. 11 1371
Mrs A’s reluctance to visit her husband’s grave and to part
with his possessions suggests an aversion to things signi-
fying her permanent separation from him. Although some
researchers suggest that avoidant coping reflects a patient’s
difficulty in accepting and adapting to the loss,19,35,36 others
claim it may be adaptive in the long term.37,38 Analyses of
symptoms that define complicated grief reveal avoidance to
be one of its weakest indicators; hence, avoidance was omit-
ted from the refined criteria set for complicated grief.29,39 Ir-
respective of whether bereaved people avoid reminders of
the death, those who are unable to accept the death and make
changes in response to new situational demands would ap-
pear vulnerable to social and occupational dysfunction29,35
(complicated grief criterion D). This does not appear to be
the case for Mrs A, who appears able to accept the death
and to function reasonably well.
Anger
MRS A: We haven’t approached the way he died. It was abso-
lutely disgusting...that pushing him constantly as to whether
he wanted heroic measures of care. We had a lot of irritation.
It was insensitive. He had made his wishes clear—he did not
want valiant measures.
Anger and protest over a significant loss are a part of
grief.18,19 Bereaved patients may even feel anger toward the
deceased for perceived abandonment.18,26 Hostility is often
directed at the deceased patient’s physician or the health care
system for failing to provide what they consider to be ad-
equate care for their loved one.19,40 Mrs A is irritated about
the care her husband received and might well meet com-
plicated grief threshold levels for bitterness, although she
does not appear consumed by rage as many patients are with
complicated grief19,26 (see TABLE 2for ways physicians might
diffuse anger directed at them).
Guilt
MRS A: I feel very guilty myself. I spent over 2 months in the
hospital with him. But the particular night that he died, I didn’t
stay up there. I’m not sure I’ll ever get over that guilt. You think
about the things you did wrong in the illness or in the mar-
riage, and there’s nothing you can do about it now. Although I
did many good things, obviously. But that one night is going to
haunt me for the rest of my life.
Like Mrs A, surviving family members may feel passing
guilt over what they did or did not do for the deceased.19,41
When pervasive self-reproach and survivor guilt become part
of the clinical picture, the person may be experiencing de-
pression20 and potentially may be suicidal.10,19-21
Depressive Symptoms
Mrs A complains of sadness, guilt, and insomnia. For her
and most bereaved people, however, these depressive symp-
toms are usually transient and not numerous. Many survi-
vors meet criteria for MDD in the first few months post-
loss,5,6,22 with a minority having persistent depressive
syndromes beyond the first year (eg, 42% at 1 month, 16%
at 1 year).6
The Course of Grief
MRS A: There’s nothing different about the phases. . . . I still
find it very difficult to deal with, but it is ameliorating a bit....
The anniversary dates are all terrible...butthepain was not
as bad this year as it was last year.
There has been a growing recognition4,42 that grief does not
progress neatly through the proposed stages17,18 of (1) numb-
ness and outbursts of distress and/or anger, (2) yearning and
searching, (3) disorganization and despair, and (4) reorga-
nization and recovery. The Institute of Medicine cautioned
against the use of the term “stages” because such use “might
lead people to expect the bereaved to proceed from one clearly
identifiable reaction to another in a more orderly fashion than
usually occurs.”4“Pangs of grief”19—the intrusive, time-
limited intense yearning and pining for the deceased—may
come and go in waves for years after the loss.17,19 As in the
case of Mrs A, these experiences typically attenuate in inten-
sity and frequency, becoming more bittersweet than pain-
ful. For some individuals, however, grief remains chronic and
severe. Intense grief (that meeting criteria for complicated grief)
lasting 6 months post-loss and beyond has been shown to pre-
dict enduring dysfunction.16,22-24
PHYSICIAN CONTACTS
WITH BEREAVED PATIENTS
When the Bereaved Is Not Your Patient
During the often intense last few weeks of life, the physi-
cian not only cares for the patient, but often for the spouse
and family. However, after the patient has died, the family
continues to need contact from the physician.
MRS A: My husband’s doctor...assoon as [my husband]
died, that was the end of him. That’s one of the things that I
object to: all the doctors just suddenly go...there’s no sup-
port. If I felt like [my husband’s] physicians had enough re-
spect and affection for me and would call me occasionally, that
would be nice. Dr M and I talked, but it’s not his responsibility
to support me; my husband’s doctor should have been there.
Mrs A resents that her deceased husband’s physician did
not call her after his death. A telephone call, condolence let-
ter, or visit shortly after the death is usually welcome.43,44
According to Bedell et al44: “A physician’s responsibility for
the care of a patient does not end when the patient dies. There
is one final responsibility—to help the bereaved family mem-
bers. A letter of condolence can contribute to the healing
of the bereaved family....”Afollow-up contact with sur-
viving family members acknowledges the loss, expresses sym-
pathy and concern, and offers an opportunity to clarify ques-
tions about the patient’s terminal care.
When the Bereaved Is Your Patient
In the first couple of months post-loss, the physician might
telephone to offer condolences and also to recommend a visit
PERSPECTIVES ON CARE AT THE CLOSE OF LIFE
1372 JAMA, September 19, 2001—Vol 286, No. 11 (Reprinted) ©2001 American Medical Association. All rights reserved.
Table 2. Strategies for Communication With and Caring for Bereaved Patients
Things to say. . . Because. . .
I’m sorry, or I’m sorry she/he’s gone. Acknowledges the loss and lets the bereaved person know you feel for them. Not saying this
much is often perceived as a lack of respect or concern.
I can’t imagine what you’re going through. Bereaved patients are often frustrated by people who minimize or assume they know how they
are feeling. No one can fully understand another’s loss and admitting this is appreciated.
What are you remembering about [the deceased]
today?
Bereaved patients are always remembering the deceased. Don’t worry about bringing up sad
memories−they are there. Help them to express their thoughts and they will feel like you care.
They will appreciate your interest.
Say [deceased’s] name. Bereaved patients will never forget the deceased. Let them know you won’t forget him/her either
by mentioning his/her name.
Talk about the deceased. Depending on your
relationship to the deceased, you may want to
say it was an honor to know him/her and that
you will miss him/her.
Bereaved patients worry that others, and even they, will forget the uniqueness of the deceased.
Talking about the deceased helps keep everyone remembering. If you did not know the
deceased person, acknowledge that and express regret.
Do you have any questions about the final illness
and treatment?
Most bereaved people are extremely interested to know about the events leading up to the
death and many have unanswered questions that have bothered them. Providing a response
may help to provide closure.
How are you feeling since [the deceased’s death]?
How has [the deceased’s death] affected you?
Bereaved patients will appreciate the concern and this may save time by getting to the reason or
need for the visit.
Things Not to Say Because. . .
Call me. Passive effort puts the burden on the bereaved person. A sincere effort is to make a personal
call to the bereaved patient.
How are you? (casually) Only if you have time to listen. If not, don’t ask.
I know how you feel. It seems presumptuous for anyone to claim to know how another person feels.
It was probably for the best. A bereaved person does not view it this way.
[She/He’s] happy now. You have no way of knowing this and the patient may resent your presuming to know.
It is God’s will. Those who are in mourning typically protest. Saying God wanted it this way may confuse the
religious and offend the nonreligious.
It was his (or her) time to go. Bereaved patients have trouble seeing it this way. Those in mourning protest their loved one’s
departure and almost never think the time was “right.” However, if you see that they are
tormented by what they did or did not do to prevent the loss, it may be in order to say that
there are things that are not within anyone’s control.
I’m sorry I brought it up. Don’t be sorry; bring it up. Bereaved patients want you to know about their loss.
Let’s change the subject. Don’t change the subject. Bereaved patients want to talk with you about their loss.
You should work toward getting over this by now. Bereaved people never “get over” their loss, but learn to live with it. Putting pressure on them to
“move on” is, in a sense, blaming them for their continued grief, may instill guilt, and add to
their concerns. If grief is prolonged, it may be time for a referral for expert help.
I had another patient who had the same illness [as
the deceased] and he suffered for a long time.
You should be glad [the deceased] passed
away quickly.
Though some may find comfort in this comparison, others will not because they feel that it
doesn’t matter how long a loved one suffered, it matters that she/he did. Safer to avoid these
sorts of comparisons.
You’re strong enough to deal with it. Mourning is about the loss and not about the mourner’s strength. A more appropriate response
might be to say to the bereaved, “I hope you find the strength to bear your loss.”
Practices to Implement How. . .
Death notification Try to establish a system whereby you are notified of patient deaths, recent losses, and deaths
within patient’s families. Encourage patients, colleagues, and funeral directors to notify you if
there has been a death in the family, and/or have patients complete a brief form while in the
waiting room that asks about recent losses.
Outreach−express sorrow, invite discussion,
schedule visit, and monitor symptoms
Once notified of a death, have staff contact bereaved patients to acknowledge loss, see how
they are doing, and encourage a scheduled visit.
Have useful information available Provide a list of resources for bereaved patients. Make available information on literature and Web
sites, support groups, clergy, mental health professionals, lawyers, and financial planners.
Practices to Avoid Because. . .
Passivity Try not to be passive, vague, or insincere. Refrain from asking bereaved patients to take the
initiative, thereby putting the burden on them.
Avoidance Bereaved patients want you to know that they recently lost a significant person in their life. They
typically want you to know how this upsets them and want to talk about it with you. To avoid
their grief denies them an opportunity to express and address their concerns, and may obscure
the real reason for their visit.
Making comparisons with other losses Try not to compare one person’s loss with other patient deaths or deaths in your family. If handled
well, empathy may provide some solace and acknowledging that it could be worse may
minimize regrets, but comparisons run the risk of minimizing the significance of an individual’s
loss.
Pressure and inappropriate positivity Avoid encouraging them to put the past behind them. Try not to imply that they should be making
larger strides towards moving forward with their life. Do not try to locate them on a linear grief
trajectory, place them in a stage of grief, or suggest their outlook be more positive.
PERSPECTIVES ON CARE AT THE CLOSE OF LIFE
©2001 American Medical Association. All rights reserved. (Reprinted) JAMA, September 19, 2001—Vol 286, No. 11 1373
to evaluate and then monitor the survivor’s health care needs.43
The content of office visits might shift from ordinary practice
to a discussion about the course of grief—as Dr M and Mrs
A’s interactions illustrated—symptoms indicating a need for
professional intervention (eg, complicated grief, MDD, sui-
cidality) and behavioral recommendations (Table 2).
What to Say and Do
Reluctance on the part of physicians to approach the de-
ceased patient’s survivors may stem from their perception
that the family is angry with them, and perhaps from a sense
of guilt and/or helplessness about being unable to prevent
the death. In a study of reactions to terminal care, 30% of
surviving family members reported dissatisfaction with the
information provided about the cause of death.45 Main43 found
that bereavement outcomes can be significantly influenced
by communication and the quality of information given to
survivors. Physicians who contact bereaved patients and ex-
press sorrow and concern may minimize the anger di-
rected toward them.43,44
The physician’s discomfort or uncertainty about what to
say or do when encountering a bereaved patient must be
overcome in favor of taking active steps to help them. A list
(Table 2) of comments and practices in communicating with
and caring for grieving patients has been derived from a syn-
thesis of discussions with widowed persons, participation
in grief support groups, and suggestions offered by various
Web sites.46,47
FACILITATING HEALING
AMONG BEREAVED PATIENTS
Social Support
MRS A: I started going to a support group about a week after
my husband died, and I go to it still. And also, about a year
ago, I met a very nice gentleman. I just did it at first because I
thought this was a very sensible thing to do. I really didn’t care
to do it. But he’s very good to me. I think one thing one misses
tremendously is touching...everybody needs warmth from an-
other person.
Research confirms that empathic friends may afford a great
deal of comfort.48 The benefits derived from developing new
romantic interests49 and participation in support groups50
have also been demonstrated. Hence, encouraging these sorts
of social activities would appear a sound practice.
Developing New Routines and Skills
MRS A: I wonder what happens to the regular person who’s out
there, whose whole way of life has to change, and who has no
experience maintaining a household. If I had gone before my
husband, it would have been a disaster ....
For women, a primary mechanism linking widowhood to
depressive symptoms is financial strain, while for men, it is
the strains of household management.51 Thus, attempts to
minimize the sources of strain (eg, learning to cook or to
manage money, possibly seeking employment) might re-
duce the risk of MDD and related mental and physical dis-
orders (complicated grief, high blood pressure).
Maintaining an Active Daily Routine
MRS A: I’ve kept myself very busy. I’m very involved in civic
activities and am on a number of commissions nationally on
alternative and integrative medicine and on breast cancer. I ex-
ercise daily.
Two studies of elderly subjects found that bereaved per-
sons who maintained a busy, daily rhythm of activity had
better sleep52 and fewer depressive symptoms than those with
less active, structured schedules.53 Mrs A’s civic involve-
ments and exercise regimen structure her day and provide
her with a sense of purpose. Bereaved patients may derive
similar benefits from staying involved and keeping regu-
larly active.
Narrative Disclosure
Putting upsetting experiences into words, including disclo-
sure about emotions in response to the death of a spouse,
is associated with improved physical and mental health.54,55
Written and oral disclosure studies have even demon-
strated a positive influence on immune function.55 Based on
these findings, physicians might encourage bereaved pa-
tients to express their thoughts and feelings about the loss
(eg, in a journal).
WHEN SHOULD A PHYSICIAN INTERVENE
AND/OR MAKE A PSYCHIATRIC REFERRAL?
MRS A: I went to a psychiatrist who unfortunately has now just
died himself. He thought I did really well with handling this. I
don’t think I was ill. I didn’t have that much of a depression. I
was simply depressed.
Although Mrs A’s distinction between “a depression” and
“simply depressed” may appear subtle, it is an essential clini-
cal determination. In the absence of a structured clinical in-
terview, it is difficult to determine if Mrs A had MDD. Be-
cause we suspect she did not, based on what she has said,
and also doubt that she met criteria for complicated grief
(Table 1), we believe referral to a psychiatrist was not nec-
essary in her case.
When psychiatric complications are suspected, primary
care physicians must begin diagnosis and treatment or re-
fer for expert consultation and intervention. While some ar-
gue for early intervention for MDD56 regardless of bereave-
ment status, Horowitz et al57 recommend that diagnosis and
treatment for pychiatric disturbance(s) among bereaved pa-
tients occur beyond a year after the loss. We recommend
treatment for MDD or complicated grief lasting 6 months
post-loss or beyond. The delay in treatment minimizes the
identification and treatment of false-positive cases of MDD
or complicated grief—cases that would resolve without in-
tervention. Obviously, immediate attention from a mental
health professional should be sought if suicidality is sus-
pected at any time post-loss.
PERSPECTIVES ON CARE AT THE CLOSE OF LIFE
1374 JAMA, September 19, 2001—Vol 286, No. 11 (Reprinted) ©2001 American Medical Association. All rights reserved.
When enduring psychopathology exists, we believe that
a psychiatric referral can be very helpful. However, be-
reaved geriatric patients may be reluctant to see a mental
health professional, preferring to be seen by their primary
care physician.58 Primary care physicians who acquire the
requisite expertise in the treatment of psychiatric disor-
ders can be effective.
HOW SHOULD BEREAVEMENT-RELATED
PSYCHIATRIC COMPLICATIONS BE TREATED?
The results of an emerging body of literature on bereave-
ment interventions suggest that treatment selection should
depend on the patient’s specific psychiatric diagnosis or di-
agnoses. For bereaved patients diagnosed with MDD alone,
treatment should follow general guidelines,59 including the
prescription of selective serotonin reuptake inhibitors or tri-
cyclic antidepressants. A randomized, placebo-controlled
clinical trial of bereaved patients with MDD found nortrip-
tyline alone had a 56% remission rate; nortriptyline in com-
bination with interpersonal psychotherapy, 69%; and in-
terpersonal psychotherapy alone, 29%.27 An open-label trial
of paroxetine, a selective serotonin uptake inhibitor, ad-
ministered weekly over 4 months, demonstrated a 54% de-
cline in symptoms of MDD.60 Although a randomized con-
trolled trial is needed to confirm the efficacy of selective
serotonin reuptake inhibitors for MDD secondary to be-
reavement, MDD following the death of a loved one has been
shown to be no different than other manifestations of MDD.61
Consequently, treatments of proven efficacy for MDD would
be expected to work well for the reduction of bereavement-
related depressive symptoms.56
Results of studies documenting the reduction of grief-
related symptoms (those targeting both earlier formula-
tions of grief symptoms and complicated grief criteria, spe-
cifically) differ from those reported for bereavement-
related MDD.27,28 For example, the randomized controlled
trial by Reynolds et al27 of interpersonal psychotherapy and/or
tricyclic antidepressants found that these treatments did not
significantly reduce symptoms of complicated grief. Ran-
domized controlled trials of crisis intervention62 and brief
dynamic psychotherapy50,63 demonstrate significant reduc-
tions in grief symptoms, with support groups showing ef-
ficacy equal to that of dynamic psychotherapy.50,63 In a small
randomized controlled trial, a behavioral therapy called
“guided mourning” significantly reduced symptoms of “mor-
bid grief.”64 Another brief psychotherapy in development,
called “traumatic grief therapy,”65 is designed specifically
to ameliorate symptoms of complicated grief and incorpo-
rates elements of cognitive behavioral therapy. In pilot work,
traumatic grief therapy had large effect sizes (2.2 and 1.5
in analyses of completers and intent-to-treat patients, re-
spectively) for reducing symptoms of complicated grief, with
significant declines reported for symptoms of bereavement-
related depression and anxiety. With respect to pharmaco-
therapy, the open-label trial of paroxetine demonstrated a
53% decline in symptoms of complicated grief. Based on these
findings, it appears that traumatic grief therapy and selec-
tive serotonin reuptake inhibitors may be the treatments of
choice, given their efficacy for reducing the symptoms of
both complicated grief and MDD. Randomized controlled
trials are needed before these recommendations can be made
conclusively.
REWARDS OF BEREAVEMENT CARE
There are several compelling reasons for physicians to ac-
tively engage in bereavement care. First, they already are in-
volved in caring for bereaved patients and will become in-
creasingly so as the US population ages. Empathic “aftercare”
for bereaved patients demonstrates the physician’s respect for
the deceased and concern for surviving family members. It
may soften the psychological blow of losing a loved one and
reduce the family’s sense of abandonment by the health care
system. Enhanced efforts to discuss the medical decisions and
care leading up to the patient’s final moments may assist both
surviving family members and physicians in attaining a greater
sense of closure. The detection and treatment of psychiatric
complications secondary to bereavement may reduce the mor-
bidity with which they are associated. Most importantly, as
the introductory quote from George Eliot suggests, physi-
cians who aid grief-stricken patients are afforded the reward-
ing, quintessentially human opportunity of transforming a
personal sorrow they inevitably will experience into sympa-
thetic and supportive “aftercare.”
Funding/Support: The Perspectives on Care at the Close of Life section is made
possible by a grant from the Robert Wood Johnson Foundation. Other support
for this article was provided by grant MH56529 from the National Institute of Men-
tal Health (NIMH), grant P60-AG-10498 from the Claude D. Pepper Older Ameri-
cans Independence Center, and the American Foundation for Suicide Prevention.
Other Resources: For a list of relevant Web sites and books on bereavement, see
the JAMA Web site at http://jama.ama-assn.org/issues/v286n11/abs/jel10000
.html.
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PERSPECTIVES ON CARE AT THE CLOSE OF LIFE
1376 JAMA, September 19, 2001—Vol 286, No. 11 (Reprinted) ©2001 American Medical Association. All rights reserved.
Other Resources
Organizations and Internet Links on Bereavement
ARP
http://www.aarp.com
Information for individuals facing major life changes due
to a loss, including Coping With Grief and LossAARP On-
line Grief Support Discussions.
American Society of Psychosocial & Behavioral Oncology/
AIDS (ASPBOA)
http://www.ipos-aspboa.org
Multidisciplinary organization concerned with the rec-
ognition and research of the psychosocial and behavioral
dimensions of cancer.
Bereavement and Hospice Support Netline
http://www.ubalt.edu/www/bereavement
An online directory of bereavement support groups and
services and hospice bereavement programs across the United
States.
The Compassionate Friends National Headquarters
PO Box 3696
Oak Brook, IL 60522-3696
Telephone: (312) 990-0010
Compassionate Friends assists family members who have
lost a child.
Counseling For Loss & Life Changes
http://www.counselingforloss.com/
A grief support Web site for those suffering the loss of a
loved one, including counseling services, personal journal
entries, inspirational writings, professional services, a weekly
column, and a column tailored to children, The Chil-
dren’s Corner.
GriefNet
http://griefnet.org
GriefNet offers e-mail support groups about death, grief,
and major loss, including life-threatening and chronic ill-
ness.
Growth House, Inc
http://www.growthhouse.org/death.html
Provides specialized resources for bereaved families, help-
ing children grieve, pregnancy loss and infant death, and
suicide. Specialized links provide additional resources for
grief and terminal illnesses.
Hospice Foundation of America (HFA)
http://www.hospicefoundation.org/
Provides general resources and background information
on hospices, and produces a number of educational pro-
grams including a National Bereavement Teleconference and
an education audiotape series for clergy members.
Thanatolinks
http://www.lsds.com/death/
Links to some informative and useful sites related to death
and dying.
The International THEOS Foundation (THEOS, They Help
Each Other Spiritually)
322 Boulevard of the Allies, Suite 105
Pittsburgh, PA 15222-1919
Phone: (412) 471-7779
Fax: (412) 471-7782
Contact: Ramona Corey
THEOS is an organization that helps widowed men and
women cope with losing their spouse. 120 local chapters
which offer monthly meetings and one-on-one support ser-
vices and numerous publications.
End-of-Life Physician Education Resource Center
http://www.eperc.mcw.edu
Online peer-reviewed information about instructional and
evaluation materials (eg, lectures, small-group exercises, slide
sets, videotapes, self-study guides, assessment tools) fo-
cused on the end of life.
Books on Bereavement
1. All in the End Is Harvest: An Anthology for Those Who
Grieve. Agnes Whitaker, ed. London, England: Darton, Long-
man, and Todd; 1984.
2. Bowlby, J. Loss: Sadness and Depression. New York,
NY: Basic Books; 1980.
3. Freud, S. Mourning and Melancholia. Collected Pa-
pers, Vol. IV. New York, NY: Basic Books; 1917.
4. Jacobs, SC. Traumatic Grief: Diagnosis, Treatment and
Prevention. Philadelphia, Pa: Brunner/Mazel; 1999.
5. Parkes, CM. Bereavement: Studies of Grief in Adult Life.
New York, NY: International University Press; 1972.
6. Stroebe MS, Hansson RO, Stroebe W, Schut H. Hand-
book of Bereavement Research: Consequences, Coping and
Care. Washington, DC: American Psychological Associa-
tion; 2001.
7. Worden, WJ. Grief Counseling and Grief Therapy: A
Handbook for the Mental Health Practictioner. New York,
NY: Springer Publishing Co; 1982.
11
©2001 American Medical Association. All rights reserved. (Reprinted) JAMA, September 19, 2001—Vol 286, No. 11 1
... In line with the view that prolonged grief may result in sleep problems, previous studies showed that grief symptoms in the first year negatively affect sleep quality at 6 to 18 months later (Boelen & Prigerson, 2007;Prigerson et al., 1995). However, baseline sleep problems were not taken into account in these analyses and the relationship was better explained by comorbid symptoms of depression and anxiety. ...
... Spielman et al., 1987). The results also appear to be at odds with earlier studies reporting longitudinal associations between prolonged grief and insomnia symptoms (Boelen & Prigerson, 2007;Prigerson et al., 1995). Since prolonged grief is characterized by cognitive preoccupation with the deceased one may also wonder why changes in such cognitive processes, reflected in our prolonged grief symptom measure, did not precede changes in insomnia symptoms. ...
Article
Full-text available
Abstract Background Insomnia symptoms are common following bereavement and may exacerbate severe and protracted grief reactions, such as prolonged grief disorder (PGD). However, typical trajectories of insomnia symptoms and risk factors for having a more chronic insomnia trajectory following bereavement are yet unknown. Method In the current investigation, 220 recently bereaved (≤6 months post-loss) participants, completed questionnaires assessing sociodemographic and loss-related characteristics, rumination, experiential avoidance and symptoms of (prolonged) grief and depression, on three time-points (6 months apart). We applied growth mixture models to investigate the typical trajectories of insomnia symptoms following bereavement. Results Three insomnia trajectory classes emerged, characterized by a resilient (47 %), recovering (43 %) and a chronic trajectory (10 %). Baseline depression symptoms best predicted the type of insomnia trajectory. At one-year follow-up, 9 %, 27 % and 60 % of participants met the criteria for probable PGD within the resilient, recovering and chronic trajectory, respectively. A parallel process model showed that temporal changes in insomnia symptoms were strongly related to changes in prolonged grief symptoms. Conclusion The results suggest that targeting insomnia symptoms in the treatment of PGD, particularly with comorbid depression, may be a viable option.
... Both ICD-10 and DSM-IV did not partake in distinguishing normal grief from disordered grief [World Health Organization (WHO), 1993; American Psychiatric Association (APA), 1994]. However, after considering empirical evidence extending as early as 1995 (Prigerson et al., 1995), a diagnostic set of criteria for PGD was eventually proposed for inclusion (Prigerson et al., 2009;Boelen and Prigerson, 2012). Both the World Health Organization (WHO) and the American Psychiatric Association (APA) ended up featuring PGD in their ICD-11 and DSM-5-TR, respectively. ...
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The enduring question of whether grief can ever be pathological (and, if so, when) has been shrouding mental health and psychiatric care over the last few years. While this discussion extends beyond the confines of psychiatry to encompass contributions from diverse disciplines such as Anthropology, Sociology, and Philosophy, scrutiny has been mainly directed toward psychiatry for its purported inclination to pathologize grief—an unavoidable facet of the human experience. This critique has gained particular salience considering the formal inclusion of prolonged grief disorder (PGD) in the 11th edition of the International Classification of Diseases (ICD-11) and the subsequent Text Revision 5th Edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5-TR). This study contends that the inclusion of prolonged grief disorder as a diagnostic entity may be excessively rooted in Western cultural perspectives and empirical data, neglecting the nuanced variations in the expression and interpretation of grief across different cultural contexts. The formalization of this disorder not only raises questions about its universality and validity but also poses challenges to transcultural psychiatry, due to poor representation in empirical research and increased risk of misdiagnosis. Additionally, it exacerbates the ongoing concerns related to normativism and the lack of genuine cultural relativism within the DSM. Furthermore, the passionate discussion surrounding the existence, or not, of disordered forms of grief may actually impede effective care for individuals genuinely grappling with pathological forms of grief. In light of these considerations, this study proposes that prolonged grief disorder should be approached as a diagnostic category with potential Western cultural bias until comprehensive cross-cultural studies, conducted in diverse settings, can either substantiate or refute its broader applicability. This recalibration is imperative for advancing a more inclusive and culturally sensitive understanding of grief within the field of psychiatry.
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Conceptualisations of grief have transformed significantly in recent decades, from an experience accepted and expressed in community spaces to a diagnosable clinical phenomenon. Narratives of this transformation tend to focus on grief’s relationship to major depression, or on recent nosological changes. This paper examines the possibility of a new narrative for medicalisation by grounding in the networks of language and power created around ‘grief’ through a critical discourse analysis of psy‐discipline articles ( n = 70) published between 1975 and 1995. Focusing on shifts in definitions of, methods used to approach, and rationales motivating study of the experience, it posits that the psy‐disciplines exerted exclusive expertise over grief decades before its creation as a diagnosis. By reconceptualising grief in the terms of psy‐specific symptoms and functional performance and by approaching it with the decontextualising and interventionist methods of an increasingly scientific psy‐discipline, the psy‐community medicalised grief between 1975 and 1995. Identifying neoliberal and other cultural influences shaping this process of medical construction and reconsidering narratives of grief’s history mindful of the powers exerted in medicalisation, this paper establishes that these moments played a critical role in the development of the present’s grief.
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Background Traumatic grief can exert a considerable influence on the mental and physical well-being of nurses, potentially altering their ability to provide high quality care. This impact is most pronounced in specific contexts such as health emergencies, palliative care and paediatric intensive care units. In the context of the Covid-19 pandemic, health professionals have faced an unprecedented increase in loss and trauma, and this situation is seen as an exacerbating factor in complicated bereavement. Despite the availability of instruments for the assessment of prolonged or pathological grief, there is a pressing need for additional studies that allow for a more accurate understanding and measurement of this phenomenon, filling certain existing methodological gaps. The main purpose of this research is to evaluate the psychometric properties of the Inventory of Symptoms of Professional Traumatic Grief (ISDUTYP), with a view to improving assessment tools in this field. Method Construct validity, reliability, criterion validity, convergent validity and discriminant validity were assessed. The scale's psychometric properties were tested with 930 nursing professionals. The data were collected between September 2022 and January 2023. Results A total of 930 people took part in the study. The factorial analysis of ISDUTYP showed that, according to eigenvalues and the scree plot, the optimal number of factors was 2. These factors consisted of 13 and 12 items, respectively, and had clinical significance. Factor 1 could be termed "Behavioural Symptoms," while Factor 2 could be termed "Emotional Symptoms." Cronbach's alpha values demonstrated excellent reliability for all scores. In particular, Cronbach's alpha was 0.964 for the overall score, 0.950 for the behavioural symptoms subscale, and 0.950 for the emotional symptoms subscale. Regarding criterion validity, all expected correlations were statistically significant. Finally, almost all hypotheses defined of convergent and discriminant validity were fulfilled. Conclusions The high reliability and validity of the scale supports its use in research and clinical practice to assess the impact of professional traumatic grief and enhance its treatment. The validated scale for measuring nurses' grief has significant implications in clinical practice, allowing for the identification and management of nurses' grief, fostering a healthy work environment, and improving patient care quality.
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