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Assessing for PTSD in Terminally Ill Patients

by Scott Janssen MA, MSW, LCSW

     Over the course of a lifetime, most people will experience at least one potentially traumatizing event. Some will develop posttraumatic stress disorder (PTSD); others will experience lingering after-effects, such as situational anxiety, hypervigilance, or patterns of avoidance. Underlying posttraumatic stress can accrue and be intensified by issues associated with aging, medical care, and terminal illness. Social workers working with such patients in geriatric, hospice, and palliative care settings may encounter challenges for patients that run counter to conventional end-of-life goals, such as effective symptom management, good communication, and a peaceful death.

    Identifying such patients can be difficult. Symptoms of posttraumatic stress are often misattributed to personality or disease-related factors. Patients may be unaware that they are experiencing posttraumatic stress or may be reluctant to disclose this because of the fear of stigma, stoicism, or a preference to avoid painful memories. Limited energy and cognitive changes may hamper a patient’s ability to provide information. Symptom management concerns or other end-of-life goals may take priority. Although information may emerge during conversations about concerns or coping, there may be issues related to privacy or trust that render assessment through direct inquiry problematic.

    Standard PTSD assessment tools may send the wrong message to some patients who are sensitive to psychiatric labels or perceived inferences that they are being judged as having a psychiatric disorder. Social workers familiar with the many validated measures of assessing for PTSD may be able to adapt these with patients who are receptive, but what about patients with cognitive impairment, high levels of distrust, or who prefer to avoid the topic?

    In such cases, the best approach may be a blend of trauma-sensitive observation and inquiry within the larger context of ongoing end-of-life care. Such an approach includes an awareness of patients whose life experiences place them at elevated risk for trauma exposure, identifying behaviors and symptoms suggestive of PTSD, recognizing trauma triggers and elevated nervous system responses, and the potential assessment-related uses of life review.  

High-Risk Populations

    An obvious way to stay alert for trauma histories is to be aware of patients whose life experiences place them at elevated risk for PTSD. Many think immediately of veterans, but there are many professions that can place one at risk for direct or indirect exposure to potentially traumatizing events. These include first responders and those working in corrections, acute medical and veterinary care, as well as a variety of social work settings.

    Those who have been incarcerated, struggled with psychiatric issues, or who have histories of substance use also have elevated risks of PTSD. So do individuals in groups marked by historical persecution or social injustice, as well as those who have survived serious accidents, domestic abuse, physical assault, or who have experienced a traumatic loss. Some groups are broad, such as those who have survived adverse events during childhood development. Others, such as Holocaust survivors, are narrower.

    It’s useful to be aware when patients’ life experiences place them at higher risk for traumatization, but it’s also important to avoid stereotypes. Just because someone is a veteran, it does not mean they have PTSD. Conversely, just because someone does not belong to an identified high-risk population, this doesn’t mean they have not been exposed to traumatizing events.         

Assessing for Behavioral and Psychological Indications of PTSD

    Another way to gather information is by assessing for PTSD symptoms. Although this may be done by direct inquiry, for patients who are unable or reluctant to discuss the topic, it can be done through observation. PTSD symptoms are organized into four constellations: re-experiencing, avoidance behaviors, hyper-arousal, and negative thoughts and mood.

    Re-experiencing refers to the ways a traumatic event intrudes into one’s life and causes distress. These include things like intrusive memories, nightmares, flashbacks, and emotional distress caused by images or sensations connected with the trauma.

    Avoidance behavior refers to ways a patient may try to avoid reminders of the trauma through social withdrawal or steering clear of certain situations. It can also include attempts to suppress troubling thoughts, feelings, or physiological sensations.

    Hyper-arousal symptoms are characterized by a heightened state of reactivity and nervous system arousal related to trauma reminders. These include hypervigilance, exaggerated startle response, emotional flooding, insomnia, anxiety, and irritability.

     Last, there are negative thoughts and feelings that began after the trauma. This might look like negative beliefs about one’s self, others, or the world; difficulty trusting or feeling positive emotions; shame; depression; cynicism; or catastrophic thoughts about the future.

    None of these symptoms by themselves necessarily indicate PTSD. A terminally ill patient may have anxiety about disease symptomatology, for example, or nightmares related to fears of death. Another may become hypervigilant as physical weakness creates a sense of vulnerability. But if a patient has multiple symptoms, such as anxiety, nightmares, and hypervigilance, the potential for underlying posttraumatic stress should be considered more likely and warrant further investigation

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Triggers and Trauma Reminders

    PTSD doesn’t just affect behaviors, thoughts, and emotions. It is a physiological event that changes a person’s nervous system. After a traumatizing experience, the entire body, especially the central nervous system, goes on permanent high alert and begins searching, often outside a patient’s awareness, for threats associated in some way with the original trauma.

    When such an association is identified, it causes an acute and instantaneous nervous system response that can create reactive behaviors, intense feeling states, and/or strong physical sensations. These associations, called triggers or trauma reminders, can be any stimulus that was paired with the traumatic event, whether a patient remembers this connection or not.

    For a patient with a cardiac condition, for example, a racing heartbeat could be coupled unconsciously with a traumatic event during which that patient’s heart was racing. So that racing heartbeat might trigger intense fear, helplessness, or defensive behaviors. A patient who survived a sexual assault may become enraged or go into a state of collapse when touched during personal care in a way that feels, consciously or unconsciously, unsafe.

    Triggers are multisensory. Virtually any internal or external sensation may be a trigger, depending on how it was associated with a traumatic event. The smell of alcohol, for example, may be a trigger for someone who grew up with a parent who became abusive when drunk. The glare of bright lights may be a trigger for someone with medical trauma who woke up restrained and intubated under the lights of an ICU.

    Triggers include memories, images, or thoughts associated with a trauma, as well as intense emotional states, such as fear, anger, or helplessness. They include situations—for example, having one’s space violated, being talked to in a particular tone of voice, or having someone standing above one’s bed.  

    The potential triggers for terminally ill patients are endless. A partial list includes the loss of meaningful roles and activities, diminished independence, impaired physical function, immobility, symptoms such as pain or shortness of breath, cognitive impairment or altered consciousness, ruptures in personal boundaries, falls, being in the dark, or relocation to an institutional environment. They may include things like the sight or smell of blood and other body fluids, conversations about death, or troubling thoughts like “I’m not safe,” “I can’t protect myself,” or “I’m going to die.”

Nervous System Arousal

    One of the keys to recognizing triggering dynamics is for social workers to attune to signs that a patient’s autonomic nervous system is being activated. This is what mobilizes the body’s fight-flight-freeze response and prepares us for responding to perceived threats.  

    Nervous system elevation may be indicated by physiological cues like rapid respirations, sweating, or dilated pupils. Signs may also be behavioral, such as agitation, withdrawal, muscle clenching, protective gestures, and impulses toward movement. They can be cognitive changes, like increased or decreased alertness and focus, dissociation,  “zoning out,” loss of concentration, or impaired memory. There may also be sudden intense emotions or a numbing and shutting off of emotion.

    Although these signs can be dramatic, they can also be subtle. As such, they can be missed or misattributed to other factors, such as poor coping skills or psychiatric dysfunction. Social workers who understand how triggers work, and who can recognize indications of nervous system arousal, will be better able to identify and assist patients struggling with undisclosed posttraumatic stress.

Life Review

    Many patients at the end of life have an impulse to engage in life review. Facilitating this process can build relational trust and help trauma survivors identify strengths and lessons learned, as well as place painful experiences into the context of a larger life journey. On the other hand, traumatic memory is not like ordinary narrative memory. Though some elements may be hyper-vivid, they can also be fragmented and highly physiologically and emotionally charged. As such, life review with patients who have PTSD requires sensitivity and skill, as trauma-related memories can lead to intense anxiety, sadness, shame, anger, or distressing physiological sensations.  

    Life review can also provide an avenue of assessing for traumatic experiences. By paying careful attention to the content of a patient’s memories, what they decide to focus on and what they leave out, as well as associated emotional states and narrative tone, social workers will find opportunities to identify areas that suggest the possibility of trauma.

     For example, if a social worker notes the appearance of intense emotions or negative beliefs about one’s self or the world, she might gently ask a patient to elaborate. Hidden trauma might be revealed by incongruities between a patient’s words and affect, the emergence of troubling themes, or repeated phrases suggesting hurt or distrust. Patterns of repeating or avoiding painful material may also provide useful clues.

    When a patient does not have the cognitive ability or energy for life review, this process can be facilitated with a caregiver or as part of a shared experience in which a caregiver and patient participate to the extent that the patient is able.

     Below are examples of the kinds of questions that may be helpful:

     While assessing for underlying posttraumatic stress, social workers can also look for opportunities to provide education about PTSD using language and metaphors appropriate for the patient. It’s also helpful to be aware of other challenges that have been correlated with PTSD, such as depression, anxiety, alcohol and substance use, and elevated risk of suicide. Patients with histories of psychological trauma may have negative self-esteem and difficulty trusting, which can place them at risk for poor social support and lack of adherence to plans of care.

    Some may be struggling with moral injury, which, although typically associated with combat veterans, can occur across a broad range of traumatic experiences. The driver of a car during an accident in which another was killed may experience moral injury. The patient who believes he or she failed to protect a sibling from an abusive parent when they were young may also experience this.

      Taking a multi-dimensional, ongoing approach to PTSD assessment in terminally ill patients that combines direct inquiry, when possible, with observations of behavioral and psychological indications of posttraumatic stress, can be an effective strategy for identifying patients in need of support. This approach is flexible enough to allow information to be gathered irrespective of a patient’s ability or motivation to provide relevant information, and it allows frontline clinicians to make judgments about the timing, context, and language of any trauma-specific explorations.

Scott Janssen MA, MSW, LCSW, has been a hospice social worker for more than 25 years and is trained in working with people who have PTSD. He is working with a National Hospice and Palliative Care Organization team on developing and implementing a trauma-informed approach to hospice and palliative care. His book, Standing at Lemhi Pass—Archetypal Stories for the End of Life and Other Challenging Times, explores the use of storytelling with hospice patients and their families.

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