Alternatives to Standard Trauma Treatment for Veterans at End of Life
When it comes to nonpharmacological treatments for PTSD, the VA has a longstanding preference for cognitive processing (CP) and prolonged exposure (PE) therapies. These approaches assume a willingness and ability on the part of a veteran to talk about the details of his or her trauma and confront associated thoughts, emotions, symptoms, and behaviors in order to gain perspective and control. But what about terminally ill veterans who are unable or unwilling to engage in this kind of processing but whose underlying posttraumatic stress is being intensified or activated by issues associated with medical care and/or the end of life?
Medical care and issues stemming from illness can intensify existing PTSD symptoms or activate posttraumatic stress associated with earlier psychological traumas leading, in some cases, to delayed-onset PTSD. In fact, medical care can actually cause PTSD or its symptoms (referred to as medical trauma).
Veterans facing the end of life often find themselves awash in potential trauma triggers. Disease-related sensations such as physical pain, intense feeling states, loss of control or physical function, altered mental status, relocation, ruptures in personal boundaries, situational stressors, or impulses toward life review can all trigger or exacerbate posttraumatic stress.
Given these factors, terminally ill veterans may have an especially difficult time when it comes to managing PTSD. But there is a world of difference between a traumatized veteran motivated to come to a VA clinic for psychological care and one who arrives because of a medical diagnosis with no interest in spending what time remains focusing on painful traumatic material.
Because these veterans have not come seeking trauma treatment, their focus may be on end-of-life tasks, medical intervention, getting better, or coping with disease effects. In such circumstances, PE, which systematically pushes a veteran to recall painful memories in detail, is contraindicated. Attempting to use this strategy could damage the therapeutic relationship and elevate the risk of heightening a person's distress.
In terms of CP, some may benefit, but there are potential limitations that should be considered. Patients may be resistant to structured psychological processing of traumatic wounds given the confluence of other stressors and challenges associated with illness that compete for attention or reinforce existing defensive patterns. Terminally ill patients may experience increasing, sometimes sudden, deficits in energy that can undermine these efforts. Impaired memory and concentration related to stress, illness, or medication side effects could obstruct an approach reliant on examining cognitions and cognitive restructuring. Poor social support or environmental issues such as lack of privacy may undermine a sense of safety to process traumatic material. There may be disease-related cognitive or communication impairments that undermine CP or complex symptom management needs that supersede a sustained focus on PTSD.
CP and PE require time, energy, motivation, and a capacity to handle distress. Unfortunately, time and energy for terminally ill veterans are uncertain. Beginning an exploration of psychological trauma with a patient whose condition may change rapidly or who may need increasingly high doses of analgesics runs the risk of leaving patients with increased distress at the very time they are facing reduced energy and additional crises related to illness and mortality.
When developing care plans for traumatized terminally ill veterans it is important to consider a person's prognosis, likely disease trajectory, anticipated needs, and symptomatology. It is equally important to involve patients, respecting goals and choices about how they want to spend what time remains even if this means avoiding trauma-related material.
Veterans facing the dual challenges of PTSD and terminal illness may find that these challenges compete for time and energy. In fact, PTSD can interfere with normal end-of-life tasks. For example, a veteran who is hypervigilant may resist analgesics out of fear of compromising alertness thus setting him- or herself up for unmanaged pain.
When these strategies work sufficiently, Feldman advises against moving to the third stage that encompasses a direct exploration of traumatic material. In such cases I have often found it useful to shift the focus of counseling toward end-of-life concerns, issues related to meaning, family communication, life integration, focusing on patient's strengths, and so on.
In some cases triggers are so persistent and/or trauma-related distress so bedeviling that these first-line interventions are not enough. Death and psychological trauma can unearth spiritual, existential, and moral pain; shame; or complex grief that can seem intractable to interventions of stages one and two.
This is where Feldman adds a third stage involving direct exploration of traumatic material provided the patient agrees and has a prognosis of months to years. Consistent with VA clinical guidelines, he recommends using PE, CP, or eye movement desensitization and reprocessing (EMDR). Though he acknowledges that counseling staff may wish to alter the procedures of these approaches depending on circumstances, he is vague about what this might look like.
In hospice patients, where there is a life expectancy of six months or less, I advise categorically against using PE. Given the potential dynamics and unpredictability of disease progression, the risks of needlessly increasing distress, retraumatization, or being derailed in the middle of treatment are just too high. A short-term cognitive approach might help but, given potential limitations, the merits of EMDR demand further exploration as a potential psychotherapeutic resource.
Social worker Barbara Ganzel (2016) believes that EMDR has advantages for terminally ill patients. She points out that EMDR does not require a patient to spend a prolonged time delving into a painful trauma narrative in order to gain a positive effect. Additionally, "EMDR therapy is brief; there is no homework and no need for detailed description of the trauma, and EMDR is documented to also reduce symptoms of depression, anxiety, physical pain, and anger." She also notes that EMDR may be modified for use with individuals who have cognitive impairments including dementia.
Though the effectiveness of EMDR has been established in physically healthy clients, studies with terminally ill patients have not yet been done. Indeed, it is difficult to conceptualize a methodology for a randomized controlled study of traumatized veterans who are dying.
Given the methodological challenge, we must also consider the evidence available in the direct experiences and observations of frontline VA social workers. In 2009 the VA implemented its Comprehensive End-of-Life Care Initiative that has significantly increased the number of veterans using hospice and palliative care services. With its ability to train social workers in innovative modalities such as EMDR and systematically gather information (both quantitative and qualitative), along with its variety of inpatient and outpatient settings and longstanding leadership in the area of PTSD research, the VA and its social work staff are well positioned to gather important clinical data.
These explorations should not be limited to EMDR. I have found, for example, that Somatic Experiencing (SE), a body-centered modality developed specifically for treating trauma, can be helpful and is complimentary with cognitive approaches like CP. Using a somatically based approach with veterans requires caution. Many have spent their lives bracing against or numbing intense physiological states and sensations. Many have learned to repress and somaticize emotional pain or anxiety. Illness may have compromised their bodies in ways that expose painful vulnerabilities. Some may carry physiological wounds from combat. But many elements of SE are perfectly suited for a trauma-focused support of terminally ill veterans who have little energy, reduced stress tolerance, and ambivalence about the value of processing, but who are struggling with high trauma activation.
Some of these elements include "working from the periphery" (approaching the trauma narrative from a point of relatively low intensity rather than pushing too quickly into highly-charged material), "titration" (taking charged material in small bits), "pendulation" (helping patients move into, then out of material in a way that begins to reregulate a dysregulated nervous system and underscores control and safety), and "resourcing" (teaching patients how to remain connected with strengths, perspective, and meaning as they remember and process difficult material).
When working with confused or communication-impaired patients, or those with little motivation to discuss traumatic memories, I have found that the emphasis SE places on subtle observational tracking of the autonomic nervous system (ANS) is helpful in gauging a patient's inward state, whether the indications are physical, e.g., elevated respiration, gestures, or impulses toward movement.
Because of its strong somatic component, various strategies can be taught for grounding and ANS regulation. In fact, it is not even necessary within the SE framework to talk explicitly about trauma material in order to help a patient learn to reduce trauma-related ANS activation.
Presently there is much we do not understand about the challenges of facing the end of life and PTSD simultaneously. Given the potential limitations of CP with terminally ill patients and what I would recommend as a general avoidance of PE when a prognosis is limited to months, we need research and we need to know what frontline counseling staff have been finding helpful in situations where standard de-escalation and stabilization strategies have been insufficient.
Soon a generation of Vietnam veterans will need hospice and palliative care services. Many will have PTSD or underlying traumatic stress symptomatology. Given this, and the fact that the context and dynamics of terminal illness can undermine the effectiveness of CP and PE, we need to focus on this issue now. And VA social workers can lead the way.
— J. Scott Janssen, MSW, LCSW, is a social worker with the Hospice and Palliative Care Center of Alamance-Caswell in Burlington, NC.
Feldman, D. B. (2017). Stepwise psychosocial palliative care: A new approach to the treatment of posttraumatic stress disorder at the end of life (in press). Journal of Social Work in End-of-Life & Palliative Care. doi: 10.1080/15524256.2017.1346543.
Ganzel, B. L. (2016). Trauma-informed hospice and palliative care (in press). The Gerontologist. doi: 10.1093/geront/gnw146.