M. Katherine Shear, MD
Marion E. Kenworthy Professor of Psychiatry at Columbia School of Social Work and Vagelos College of Physicians and Surgeons, New York, NY.
Dr. Shear has no financial relationships with companies related to this material.
TCPR: Prolonged grief disorder (PGD) is the only new condition in DSM-5-TR. What was the intention behind it?
Dr. Shear: We’ve long recognized that some people suffer from a more severe and persistent form of grief. In the past, they were diagnosed with, and treated for, major depression or PTSD. Some also have those conditions, and there is nothing wrong with diagnosing and treating them along with PGD, but treatment is not as successful when the grief part is missed.
TCPR: Is the problem that they receive medications instead of psychotherapy?
Dr. Shear: In part. But these patients don’t respond as well to standard therapy for grief. We developed a psychotherapy for PGD in the 2000s and tested it against interpersonal psychotherapy, an evidence-based therapy that addresses grief during depression. In two controlled trials, the response rates were double with the more specific therapy, which we called complicated grief treatment (Shear K et al, JAMA 2005;293(21):2601–2608; Shear MK et al, JAMA Psychiatry 2014;71(11):1287–1295). We also tested this therapy against citalopram in a large randomized controlled trial in patients with the original version of PGD (prior to DSM-5-TR). The only treatment arms that separated from placebo were the therapy arms, even though two-thirds of them also had depression (Shear MK et al, JAMA Psychiatry 2016;73(7):685–694).
TCPR: I want to hear more about that therapy, but first walk us through the criteria for PGD.
Dr. Shear: To start with, the patient must have lost someone close to them, and the grief has to last longer than what the patient or others in their culture would expect. DSM-5-TR requires that the loss was at least a year ago, but in our studies, we used a cutoff of six months, which is what DSM-5-TR allows for children and adolescents and what ICD-11 uses for all patients in their version of the PGD criteria. Six months is a long time to live with pervasive grief that involves persistent longing, yearning, and/or preoccupation with the deceased, which is the second criterion for PGD.
TCPR: What does that longing look like?
Dr. Shear: People can’t stop thinking about the deceased, wanting and longing for them to be back. This takes up most of their time, and if they are able to go ahead in their life, they feel disconnected, or as patients put it “half there and half not,” “like an automaton,” “putting on a mask.” They have lots of thoughts and memories of the deceased, and they want to share them, but people around them get tired of listening. People start telling them, “You should move on. You’re just torturing yourself.”
TCPR: After those first two criteria, there is a list of eight symptoms, of which the patient must have at least three. Walk us through them.
Dr. Shear: The first is identity disruption. “I don’t feel like myself. I feel like a part of myself died and I don’t know what’s left. I don’t know what I care about anymore.” This is different from normal grief, where a person might feel their identity is changed but not lost, as in “I’m not the same person I was before the death, but I am still engaged in my life, just in a very different way.” When people have identity disruption, we need to probe for suicidal thoughts like “I’m not here fully, so I might as well be gone” (see the “Summary of Criteria for Prolonged Grief Disorder” table).
TCPR: What does a “marked sense of disbelief” about the death look like in practice?
Dr. Shear: It’s very difficult for people to understand that someone who has been so integral to their life is gone and not coming back. This is a normal part of grief, and most people learn the new reality experientially over time. In PGD, the disbelief stays.
TCPR: The next criterion is “avoidance of reminders” that the person is gone.
Dr. Shear: Patients avoid anything that can activate their grief, like going to the supermarket where they used to shop with the person. Often, they are afraid of getting emotional in public places. Another way we see avoidance is when they hold on to things that make them feel the person is still with them, like keeping all the person’s clothes. They’ll spend a lot of time looking at pictures or videos, or smelling the person’s clothes. Sometimes people will hold their own hand to comfort themselves.
TCPR: How is this different from avoidance in PTSD?
Dr. Shear: The two disorders can occur together, particularly if the patient witnessed a traumatic death. In PTSD, the avoidance is focused on the event of the death. In PGD, the avoidance is about the loss of the person. They often avoid things that hold very positive memories for them, which is different from the fear-based avoidance of PTSD.
TCPR: Can you tell us about the “intense emotional pain” criterion?
Dr. Shear: This can come in sudden, intense bursts, often interspersed with long periods of emotional numbing, which is the sixth criterion. The emotional pain is similar to what we see in normal grief, but it persists for longer.
TCPR: Another criterion is about “difficulty reintegrating” back into their lives. What does that look like?
Dr. Shear: This is related to the disruption of identity. They don’t know what they want to do anymore. They lack direction and don’t know how to move on. This often goes along with the next two criteria—intense loneliness, and the feeling that life is meaningless.
TCPR: Does “loneliness” mean they are socially isolated?
Dr. Shear: That can happen, but more often we see emotional loneliness, which is when people feel alone even when they have relationships. They feel disconnected from others. That’s different from social loneliness, where there is a lack of social relationships.
TCPR: Tell us about complicated grief treatment, the therapy you helped develop for this disorder.
Dr. Shear: We start by explaining what grief is, as that basic understanding is often missing in our culture. “Losing someone close is one of life’s greatest stressors, and grief is a stress response. There are other stressors we have to cope with in addition to the person being gone. Friendships you shared with that person may change. People start avoiding you. Invitations to parties dry up. They treat you like grief is contagious. Grief also affects us physically. When you lose someone who was a safe haven, someone pleasant and pleasurable to be around, it has an impact on psychologic and physiologic functions.”
TCPR: Do you say anything more specific about PGD?
Dr. Shear: Yes, I’ll start by explaining how grief changes over time, because the real question is “Why doesn’t grief stay intense like that for everyone?” The answer is that people adapt to all the changes that come with the loss. They find a way to accept that the person is not coming back and learn to have a different relationship with the deceased. We still have a relationship with people who’ve died, and being able to accept that different relationship is part of adapting. At the same time, a bereaved person needs to bring their own self back into ongoing life—to restore the capacity to experience happiness, feel joy, and renew meaningful relationships with their community, family, and friends.
TCPR: How does complicated grief treatment differ from traditional therapy for grief?
Dr. Shear: The therapy is time-limited and is delivered in a planned sequence with planned procedures. This is unusual for grief therapy. For example, we include an exposure-based component called imaginal revisiting. We ask people to close their eyes and visualize themselves at the time when they first learned of the death. I think this helps the brain comprehend the reality of the loss. People with PGD miss out on this implicit learning because they avoid thinking about it or they spend time telling themselves many ways that the death could have gone differently.
TCPR: How does that differ from exposure therapy for PTSD?
Dr. Shear: There are many similarities to prolonged exposure for PTSD, which was the primary influence on our grief therapy. As in prolonged exposure, we record the story they tell, send it home with them, and ask them to listen to it every day. We also follow the telling of the story by spending time reflecting on it. “What was it like to tell the story? What did you notice in telling it?” Through that conversation, we often discover troubling thoughts about the death or ways of thinking like self-blaming or other counterfactual thoughts. Then we ask the patient to set the story aside and plan a rewarding activity.
TCPR: What is counterfactual thinking?
Dr. Shear: It’s self-talk focused on alternative scenarios that are better (upward) or worse (downward) ways of imagining what could have happened. Most bereaved people focus on upward counterfactuals, like “If only this had happened, they wouldn’t have died.” For example, someone whose son who got hit by a car while crossing the street might think “If he had left home five minutes later or five minutes earlier, or if he had turned down a different street, or if he had stopped to talk to someone, he wouldn’t have died.” This kind of thinking can be a way of trying to come to terms with the reality of the loss and/or of keeping the reality at bay for a while. Other people often try to comfort the bereaved with downward counterfactuals like “It could have been worse.” However, this usually backfires and comes across as insensitive or even cruel to the person who is bereaved.
TCPR: Is telling the story of the death difficult for patients?
Dr. Shear: Yes. That’s why it’s important to explain the rationale for the imaginal and situational revisiting exercises early in the therapy. “We’re going to want you to start doing things that are painful—gradually, not all at once. These exercises help you learn what it means that your loved one is gone, and they also free you to move around in the world—so you won’t have to stop yourself from going to certain places just because they might activate your grief. They also provide access to positive memories those places hold.”
TCPR: Do you ask patients to bring in photos of the deceased, or is the problem that they spend too much time looking at photos?
Dr. Shear: We do ask people to bring their favorite picture to a session. Some people will actually avoid looking at all photos or avoid photos from a certain time. They might be fine looking at baby pictures, but they don’t want to see the last picture that was taken before the person died. Looking at pictures is one of the most effective things we do, especially for people who are avoiding them. It usually takes very little time for them to be smiling and telling stories after sharing a picture.
TCPR: Any other unique techniques?
Dr. Shear: Near the end of the 16-session therapy course, we invite the patient to imagine a conversation in which they are speaking to the person right after they died. Then they take the deceased person’s role and respond. They go back and forth like that for 10 or 15 minutes, and then we reflect on what it was like to do that. Another unique aspect of this therapy is that we think of the work in terms of six milestones, each introduced sequentially, with a targeted procedure (see the table “Six Milestones of Grief”).
TCPR: Can you tell us more about those milestones?
Dr. Shear: People come to us wanting help with their grief, but we consider grief to be the natural response to loss. We want them to accept their grief—not try to change it. We provide psychoeducation about grief and adapting to loss and explain how adapting can be difficult. Grief is not the problem. Adapting is. We use grief monitoring to help patients get to know their grief. In addition, they often have difficulty managing both emotional pain and positive emotions, so we also help them do that. For example, people can have positive feelings about something new in their life, and that often triggers survivor guilt as if they are betraying the deceased. Next, we help them start to see the future in a positive way. To do this, we are guided by self-determination theory, and we use a modification of motivational interviewing goals. To begin strengthening existing relationships, we encourage them to bring someone to one of our early sessions and use this opportunity, among other things, to provide psychoeducation that will help the visiting friend or family be a better support. We put these three steps first because they help people build some energy and enthusiasm to come to terms with the painful reality of the loss.
TCPR: Tell us about the last three milestones: imaginal revisiting, situational revisiting, and imaginal conversation.
Dr. Shear: We help them narrate a story of the death that makes sense to them and that they can share with others. We call this imaginal revisiting, or making the unthinkable thinkable. Then, we help them learn to live with reminders of the person who died (situational revisiting). The last piece is to help them feel a connection with the memory of the person who died (imaginal conversation).
TCPR: It sounds like difficult work.
Dr. Shear: I wouldn’t call it difficult as much as painful. It can be pretty emotionally activating for patients. It is often activating for the therapist as well—especially in the beginning. As a therapist learns this therapy, they might start to feel very aware that they could lose someone close, and that isn’t a good feeling. It puts death center stage, including one’s own death. Therapists need to work through this. Another thing is that many of the procedures we do in this therapy are counterintuitive—to therapists as well as to the clients. Clients always push back in one way or another. Therapists need to come to terms with this, too. This therapy has a definite planned sequence and specific procedures, but active listening is still the centerpiece of the work. Therapists need to guide patients and also need to provide empathy, support, and validation. Once therapists learn to work with grief and loss, it’s some of the most gratifying work they can do. After all, grief is the form love takes when someone we love dies.
TCPR: Thank you for your time, Dr. Shear.
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