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Trauma-Informed End of Life Care

By J. Scott Janssen, MSW, LCSW

In recent years there has been an increasing awareness about the prevalence and impact of traumatic stress reactions and PTSD in the general population. More than one-half of the adults in the United States experience at least one psychological trauma in their lifetime and approximately 25% of those who have will develop PTSD (Feldman, 2006). This has led many social workers to alter their practice in the interests of becoming trauma informed in order to better identify when clients are being triggered by situations that activate (often undisclosed) traumatic stress, and to respond in ways that help them stabilize and move toward healing.

Such a trauma-informed orientation is important when working with clients struggling with terminal illness. In one of the few studies to date exploring the intersection of terminal illness and unresolved PTSD, Feldman and Periyakoil (2006) argue that existing PTSD can complicate the dying process in a number of ways, including the following:

• The threat to life inherent in terminal illness may mimic the original trauma, exacerbating previously mild PTSD symptomatology and leading to significant distress.
• When key memories are trauma related, the normal process of life review can lead to intense anxiety, sadness, guilt, or anger.
• Avoidance symptoms and distrust of authority figures can lead to poor medical adherence and strained communication with the medical team.
• Patients with PTSD may lack caregivers because of a history of social isolation and avoidance.

A terminal diagnosis can shatter familiar routines, undermine coping strategies, raise death fear, cause intense states of emotion and sensation, loss of privacy and/or independence, as well as physical pain, shifting roles, altered mental states, an increased sense of vulnerability, and loss of meaning, any of which can exacerbate underlying traumatic stress.

Studies of combat veterans have found that the life review process that often occurs at the end of one’s life, as well as stressors related to illness, can reactivate old traumas and even cause delayed onset PTSD (Davison et al, 2016; Davison et al., 2006; Ruzich, M et al., 2005). As implied by Feldman and Periyakoil, this type of traumatic reactivation is not exclusive to combat veterans and can occur with other kinds of unresolved psychological traumas.   

Patients with terminal illnesses are likely to have had recent encounters within medical settings and are thus at higher risk for medical trauma. These include surgeries, cardiac resuscitation, being restrained or intubated, trips to the emergency department, or perceived threats to safety. As with life review, such medical traumas can intensify and add fuel to the psychic and emotional pain of old traumas, creating additional challenges at the end of life.

Though patients may have suppressed or silently coped with the persistent impact of unhealed trauma, when faced with an incurable diagnosis, indications of traumatic stress reactions, including PTSD, may emerge in the form of fight, flight, or freeze responses. These can include, among other things, intense emotional reactions, such as fear, anger, or helplessness, that seem disproportionate to the situation, avoidance behaviors, hypervigilance, anxiety, intrusive memories, dissociation, panic, nightmares, emotional numbing, withdrawal, or becoming easily overwhelmed.

Other signs may be less obvious and are often attributed to organic or psychological conditions. Symptoms such as impaired memory, difficulty concentrating, hypo- or hypersensitivity to physical sensations, distrust, loss of motivation, and physical pain or somatic complaints for which no organic cause can be found. 

Inwardly, trauma may have altered one’s sense of self and bent the course of one’s life in painful directions. Complex feeling states and inner narratives about one’s self and the world can create a persistent inner experience of feeling unsafe or unwanted. Intense emotions, automatic thoughts, and reactive behaviors may have caused a history of relational conflict or created a hidden spiral of shame, negative self-judgment, loneliness, or a sense of being flawed.
In the attempt to numb the psychic and relational pain some may have abused alcohol or drugs, or contemplated suicide.

Professional Recognition

If hospice professionals fail to recognize the traumatic activation that can occur amidst the stress of terminal illness, patients with existing trauma-related anxiety and PTSD may wind up being labeled as “problem patients,” oppositional, noncompliant, emotionally unstable, in denial, avoidant, socially inept, hypochondriacs, or as having poor coping and impulse control. Physical symptoms stemming from trauma such as respiratory or digestive distress or somaticized pain may be covered over with medications without having the underlying causes addressed.

One of the aspects of trauma that has become better understood in recent years is its biological impact. It literally alters a person’s central nervous system, keeping them in a constant state of preparedness to respond to perceived threats, whether real or imagined. Peter Levine (2008) puts it this way: “When a situation is perceived to be life-threatening, both mind and body mobilize a vast amount of energy in preparation to fight or escape.” When that energy cannot be released due to an overwhelming threat such as an automobile collision or an inescapable attack, “the brain just continues to release high levels of adrenaline and cortisol, and the body holds onto its high energy, ramped-up state.” Thus, whenever the limbic regions of the brain perceive a threat associated in any way with images, sensations, or emotions of the trauma, the nervous system instantly generates a tremendous amount of survival energy, creating what Levine calls a trauma vortex.

Another aspect of this physiological impact is that, where trauma is concerned, the brain does not appear to differentiate between past and present. In other words, if a patient’s subcortical brain perceives a threat associated in some way with a past trauma, it will react as though that trauma is occurring in the present moment. For example, a patient with residual psychological trauma from a head injury long ago that temporarily left his mind foggy may suddenly experience the same profound helplessness that occurred during this event when the side effects of a new analgesic medication kick in. A patient who survived a fire after inhaling smoke may suddenly experience the same feelings of terror when she becomes short of breath from a respiratory disease.

Given the countless trauma triggers that may occur during the course of a terminal illness related to situations such as medical care, loss of control, a sense of foreshortened future, or the experience of helplessness and dependency, these kinds of automatic unconscious associations with earlier trauma can become a prevalent and troubling feature of a patient’s experience.

One of the daunting aspects of facing death with the added burden of unresolved traumatic stress is the way trauma can run in opposition to conventional end of life goals. For example, a person with history of being sexually molested as a child may become withdrawn or enraged when the nurse suggests that the patient needs more assistance with bathing and toileting. The combat veteran who learned to suppress his feelings amidst the brutal stress and grief of war may become isolated and incommunicative when faced with the intense stress of a life-threatening illness.

If unrecognized, the aftereffects of trauma can impede hopes for the peaceful death envisioned by many families and hospice professionals. Given the emotional intensity that can characterize end of life conversations and the plentiful stressors that go along with physical decline and impending death, it is easy to see how unresolved trauma can make a difficult situation more challenging by adding the powerful charge of a dysregulated nervous system constantly on guard for perceived threats.

Power of Awareness

The good news is that there are many points where working with trauma survivors and hospice patients converge. These include an emphasis on creating safety, building trust, and establishing a therapeutic pace that does not overwhelm patients and respects their boundaries and defenses. Both recognize the power of relationships as a source of meaning and healing, the possibilities for growth and transformation during times of suffering, and the need to optimize patient and family strengths and resilience.   

Though hospice counselors may decide to work directly with traumatic memory, it is not necessary in order to assist with healing. By simply being aware of when a patient is going into a fight, flight, or freeze response, regardless of whether there is a known trauma history, and helping them learn to shift into a calm state, we are working with traumatic patterns and helping reregulate the nervous system.

Even when a trauma history is known, there may be reasons not to make it a focus when working with terminally ill patients. For example, the material may simply be too highly charged, the patient may prefer to focus on other matters, there may be changes in mentation or context-based issues that undermine safety or trust or issues related to a patient’s energy, or the time available with which to make direct explorations.

Given the magnitude and complexity of trauma’s aftermath and the fact that those who are dying have limited time and energy, going directly into intense trauma material may not be advisable. Doing so too quickly can surface a cascade of overwhelming thoughts, feelings, and memories that may send patients and families into a state of crisis. When such material does arise, it is important to remember that conventional notions about therapeutic processing in which thoughts and memories are recounted, rationally explored, released, and reframed may be contraindicated with traumatic memories and may even cause retraumatization.

Feldman and associates (2011; 2014) advocate an approach that progresses in stages depending on a patient’s needs, goals, motivation, symptomatology, and prognosis. These stages begin with concrete interventions to reduce stress through such things as enhanced psychosocial support, avoidance of triggers, and environmental modifications and progress to education about traumatic stress and developing skills to improve coping and increase a sense of control and overall psychological well-being. 

One of the values of a trauma-informed approach is that each situation can be approached in a way that allows patient’s choice and control. Having direct conversations about traumatic material can be helpful, and some patients will be motivated to do so, but these require skill and training. A trauma-informed approach to end of life care would include a solid foundation for all staff on the basics of trauma, de-escalation, patient tracking, and grounding. It would also require those directly involved with counseling to gain additional training and, ideally, become familiar with at least one of the increasing number of psychotherapeutic models shown to be effective in treating trauma.   

There is much that we need to learn when it comes to working with patients at the end of their lives who carry unhealed traumatic wounds. Hospice professionals are usually not trained to assess for and intervene with patients who have PTSD or longstanding issues with traumatic stress; professionals who work with trauma survivors often do not have the background to understand the potential issues related to the end of life. Yet, when these respective areas overlap in patients’ lives, it can create intense challenges and concerns for which we need to be ready to respond effectively, and about which we need to be informed.   

— J. Scott Janssen, MSW, LCSW, is a social worker with the Hospice and Palliative Care Center of Alamance-Caswell in Burlington, NC.

Davison, E.H., Kaiser, A.P., Spiro, A., Moye, J., King, L.A., & King, D.W. (2016). From late-onset stress symptomatology to later-adult trauma reengagement in aging combat veterans: taking a broader view. The Gerontologist. 56(1), 14-21.

Davison, E.H., Pless, A.P., Gugliucci, M.R., King, L.A., King, D.W., Salgado, D.M., et al. (2006). Late-life emergence of early-life trauma: the phenomenon of late-onset stress symptomatology among aging combat veterans. Research on Aging, 28(1), 84-114.

Feldman, D.B., & Periyakoil, V.S. (2006). Posttraumatic stress disorder at the end of life. Journal of Palliative Medicine, 9(1), 213-218.

Feldman, D.B. (2011). Posttraumatic stress disorder at the end of life: extant research and proposed psychosocial treatment approach. Palliative and Supportive Care, 9(4), 407-418.

Feldman, D.B., Sorocco, K.H., & Bratkovich, K.L. (2014). Treatment of posttraumatic stress disorder at the end-of-life: application of the Stepwise Psychosocial Palliative Care model. Palliative and Supportive Care, 12(3), 233-243.

Levine, P. (2005). Healing Trauma. Boulder, CO: Sounds True.