What Is Complicated About Grief? A Professional Approach
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Offices in Old Town Alexandria, VA 22314 and Bethesda, MD 20814
Tel. (703) 548-3866 and (240) 229-1893
By Dr. Ursula Weide
National Certified Counselor,
Fellow of Thanatology
Complicated Grief will, in all likelihood, become a new diagnosis in the DSM-V expected for May 2013. According to the Center for Disease Control and Prevention, there are roughly four million deaths in the United States each year involving three to five grievers. Research mainly led by Katherine Shear, MD (Columbia University, New York), indicates that approximately 85% of all the survivors experience grief which will be integrated fairly quickly. The remaining 15%, traumatized by death - a total of anywhere between two and three million new grievers each year - can benefit considerably from a research-informed, experience-based approach to their complicated grief.
Since the morbidity and mortality rates (including suicide) among survivors exceed by far the population averages, proper complicated grief therapy can not only assist the afflicted survivors with learning eventually to live better with the traumatic loss but also acts as preventive medicine through stress reduction. So where do we start?
The Complicated Grief Experience
After a few minutes on the phone with a potential new client, he almost screamed at me: “I am not suicidal, I am not suicidal!” To which I responded: “I know you are not!” Clearly, I was the first person who had really listened to him. His 42-year old wife had suddenly died of a heart attack. When he visited his physician, he was immediately hospitalized as a danger to himself and released after two weeks to partial hospitalization. Needless to say, for someone who did not belong on the psychiatric ward of a hospital, it only increased his symptoms of distress and functional impairment. When he came to my office, he was on five medications: an anti-convulsant, an anti-psychotic, an anti-depressant, a benzodiazepine, and sleep medication. None of them had controlled his grief symptoms nor – brought his wife back.
When I received the phone call that my husband had died of a heart attack in his forties while I was in my thirties, I was pushed into an emotional dimension so extreme that I could never have imagined it existed. In the morning, I fought waking up because I knew that there was a horror waiting for me too great to bear. Being a psychologist with years of experience was no help at all. And I was fully aware that the only way to escape the horror would be my own death. I call this wishful thinking: I wish I were dead so that the pain would end. Let’s face it: there are only two options – to commit suicide, or eventually to learn to live better with an experience which pushes our brains way beyond their natural capabilities to cope. Since most of us are not given to suicide we want to learn, preferably fast, as we and the rest of the world expect. Unfortunately, there is no button to push.
Is It Complicated Grief?
This is what I hear on a regular basis and which tells me in a few sentences that the survivor is suffering of what I really prefer to call “traumatic grief”: a spouse or partner, sibling, child of any age, or other very significant loved one has died either after a sudden or long illness, or in a violent fashion such as an accident, homicide, or suicide. For a child, the death of a parent is always traumatic. Often, there was a death in the ICU or the survivor participated in terminal care, two factors seldom recognized as traumatizing.
A tell-tale description of functional impairment through symptoms of post-traumatic stress in combination with other anxiety disorders and/or symptoms of depression often follows. Memory lapses, difficulty concentrating, feeling disconnected from self, others and reality, anger and irritability, difficulty breathing, chest tightness, insomnia, hyper-activation and vigilance, loss of appetite, every word and slow-motion movement requiring a superhuman effort: you get the picture.
Additional significant criteria are thoughts of one’s own impending death; waiting for “the other shoe to drop” such as the death of a child or, for a child, the death of the other parent; the sense of “going crazy”; a loss of purpose and meaning of life, the inability to conceive of any kind of future. The time frame – recently or several years ago – is not diagnostically significant even though there is no current agreement among researchers.
Physical complaints are common, either as recurrences of prior conditions or the development of new ones, and their stress-related symptoms often do not make sense to physicians. Survivors are running on adrenaline – on something they do not really have. Make sure that you are familiar with the neurobiology and neurophysiology of stress as a stressed brain, as seen on fMRIs, for example, is functionally and structurally different from an average brain which affects our entire organism.
Predisposing factors for complicated grief are childhood abuse and prior adult trauma. Explore in detail mental and physical health histories so that you can distinguish between prior symptoms, co-morbidities and complicated grief, and explain their interactions.
What Is So Complicated About Complicated Grief?
Complicated grief cuts across PTSD, other anxiety disorders and mood disorders but there is also “something else”, difficult to define for the DSM-V diagnosis. Historically, “grief counseling” developed from Kuebler-Ross’s attempts at conceptualizing a dimension of existence we continue to be unable to imagine. But today, we have advanced way beyond these initial steps. The first set of diagnostic “consensus criteria” was published in 2000 by Jacobs (Death Studies). As the DSM-V approaches, the criteria keep changing. Unfortunately, in research terms, there still is considerable reliance on grief questionnaires drawing heavily on traditional interpretations of grief, and validated close to twenty years ago mostly on elderly widows. Some researchers recognize, however, that these questionnaires can not be validly used for younger individuals which make up the majority of my practice.
Also, scoring is based on “symptoms” such as “yearning, missing the deceased”, all the standard assumptions made by society about the fall-out from a loved one’s death. But what do these terms really mean? What if these words have become meaningless to the survivor who has been traumatized into a dimension transcending common concepts? What if grief really is preverbal – and consists more of images than language?
Furthermore, no author differentiates between what I call “wishful thinking” such as “I wish I were dead so that this would be over” and suicidal ideation. After my husband died, I was very aware of the fact that this extreme emotional dimension I suddenly found myself in would only end if I were dead. My concern is that the current proposed “I have no future nor purpose” diagnostic criteria will be misinterpreted by inexperienced clinicians as “danger to self”, followed by unnecessary hospitalizations – see above – or medication.
But most of us are not given to suicide and eventually realize that the only other option is to learn to live better with the death, the goal of grief therapy. There is no such thing as “getting over it” or “moving on”, as society would like us to. We can only learn to manage the grief.
The Basics of Complicated Grief Therapy
Please do not ask me “Just tell us what to do”, as during a presentation I gave to mental health professionals. There is no cookbook answer, no alphabet soup of treatments, not even a solid research-based consensus of what complicated grief really is. The main characteristic of CGT is – that it does not exist. In spite of Katherine Shear’s ground-breaking first clinical study published in 2005 (Yes! Remember Freud’s “grief work” from the late 19th century?), testing a particular treatment protocol, we do not know in a systematic fashion what works and what does not. The greatest fear of humankind is the fear of death, reflected in our reluctance to study the impact of traumatic death and to develop a treatment foundation.
Working with a traumatized survivor is not intuitive, even for those who have been there. I still needed training and received most of it from the International Critical Incident Stress Foundation (icisf.org) and the Association for Death Education and Counseling (adec.org). It took me years to be certain that I would be able to draw the invisible line required between our own experiences and needs and those of our clients. But here are some basics to prevent your survivors from running for the hills:
A. Do not make any assumptions. My survivors are often told, “I know how you feel because I am divorced.” Or a friend goes into a long description of a grandmother’s death. I certainly have seen these across-the-board assumptions about “grief and loss” in both the lay and professional literature, and my clients have reported them on the part of prior therapists. Also do not assume that, because you have read a book about debriefing or exposure therapy or any of the literature describing tasks, stages and “meaning making” as the goal of grief therapy, you know how to approach a traumatized griever.
Do make the assumption that behind the symptoms is a dimension of horror you can not gauge unless you have been there. And treat the survivor with the respect owed to someone whose experience bypasses yours by far. Awareness of our ignorance is not failure!
B. Do not attempt to change the survivor’s belief system. “Just think of all the years you had together as a couple.” “Focus on all the good moments you still have with your mom instead of the fact that she is dying of dementia.” “Think of all the positive things in your life and those who are much worse off.” “You are so young and attractive, there is someone else out there for you!” Your clients will walk out. They have heard all of this before and know it does not apply to their reality.
Do accept where the client is at. There is nothing wrong with using your prior therapy experience whenever appropriate, adapting it to what you are hearing. But your client is the expert – not you. Unless you have been there, you are in different worlds. And there is a communication gap: the same words no longer have the same meaning. Nor is common language adequate to describe the dimension of horror your client is going through. Sometimes there is no language at all, just images. Remember: there is a reason for the term “speechless.” And pay close attention to the images your clients express - integrate them into your approach instead of what you have read in books.
C. Do not make any comparisons. “Losing a child is so much worse than any other kind of death.” “Because it was a suicide this must be so much more traumatic.” “She was only your fiancée, not even your wife!” Or: “You never even met – you only knew her through e-mails!” And this is what I heard myself: “You were not present when your husband died – I know someone who was so what is your problem?”
Do avoid basing your therapeutic approach on the differences still perceived by society as distinguishing one kind of traumatic death from another. I look at the way the survivor is affected – this is where we all come together. Individual circumstances matter, of course, and will guide you in supporting the survivor with the development of new coping skills and the discovery of those already in place.
D. Do not insist on “debriefing” or “exposure treatment.” The main difference between the Iraq vet and your survivor is that the trauma was caused by the death of a loved one. Survivors are constantly surrounded by triggers, reminders of the deceased who was part of their lives and bringing with them the incessant confrontation with reality.
Do go with where the survivor is at and be gentle. “Retelling” (Edward Rynearson, MD, 2001) will occur naturally and facing reality, as painful as it is, eventually will rob it of some of its emotional impact. As a new client recently put it, “I did not want to constantly be asked to talk about what happened, I wanted to focus on the future so I did not return to my initial therapist.” Wanting a future, already a great coping skill! He will let me know what happened in his own time. I do know one thing: she is dead.
Contrary to a common belief, I do not work in geriatrics. Most of my clients are young, ranging from four years to into their sixties. Most often, the survivor is self-referred after having read my website. I always spend time over the phone to begin establishing a therapeutic alliance even if the caller eventually decides not to make an appointment. And once someone comes to my office, the person immediately recognizes me from my photograph on the website when I enter the waiting room. A common wavelength has been established, providing a sense of safety from the often hurtful – and oh so well-intentioned! – efforts of an uncomprehending environment.
An additional word of caution: if you have been there and “want to help” or “give something back”, do not rush. You may be trying to meet your own needs. The common wavelength between my clients and myself – my credibility as a “grief counselor” - is in part based on more self-disclosure than usual in therapy because it normalizes the clients’ experience. But I have a constantly heightened awareness of my thoughts and feelings to make sure that I am keeping my therapeutic distance.
And please – do not jump on the wagon of a media-hyped death, using a parent surviving a teenage suicide, for example, for your notoriety by supporting him to engage in public behavior he will regret for the rest of his life. Our judgment after a deadly tragedy is clouded, and no one is prepared for the alterations of thought, emotions and actions we suddenly experience. “Wanting to help others”, in this case through the disclosure of private information about the dead child, is an early but eventually counterproductive reaction.
Recently, I attended a convention and was leaving the hotel with another participant to share a cab to the airport. She was concerned that we would not make our plane on time. My response: “We may never make it.” To my clients, this sounds perfectly natural. We will always be different but over time we learn to live better with the sense of “being members of a club we did not sign up for”, the awareness that there is an unanticipated dimension to ourselves and our lives. So please, be respectful when working with those who have experienced the ultimate loss of control and the certainty that we are not masters of what matters most in life. But that we can learn to survive.