Death by PTSD AJN Off the Charts

“I pleaded with her to go to the hospital.” Don’s voice is suffused with sadness as he sits at the bedside of his dying 39-year-old partner, Clarisse. “She was terrified of medical tests and procedures. By the time she saw a doctor the cancer had spread. She was so overwhelmed she refused any treatments.”

Over the years, I’ve had several patients like Clarisse; younger people who refused to seek medical care or declined treatments that might have cured them. Some were depressed, others worried about the financial burden. But there was a common thread: all were intensely distrustful, avoidant, and afraid.

Depressive thoughts, distrust, avoidance, and fear are all common features of post-traumatic stress disorder (PTSD) and every one of these patients had either been diagnosed with PTSD or would have if they’d sought psychological care.

Effects of PTSD in patient response to health care.

Clarisse had survived childhood sexual abuse at the hands of one of her mother’s boyfriends. This had left her intensely sensitive to intrusions into her personal space, terrified of being touched or probed by medical staff, and distrustful of men and authority figures. There were a number other common effects of PTSD evident in my work with Clarisse.

  • Hypervigilance, which is a state of extreme alertness to threats and danger that keeps someone feeling unsafe and on guard. Imagine the experience of a hypervigilant person who awaits an exam, procedure, or test in the waiting room of a fast-paced clinic or hospital.
  • Hyperarousal refers to a pattern in which a person’s nervous system kicks into high gear (fight-flight-freeze or collapse) when in the presence of trauma reminders (triggers). This can cause intense emotional and behavioral reactions and can make it difficult to take in information. Possible trauma reminders for someone with a history of sexual violence include things like being examined, being naked, ruptures in boundaries, being in the dark, loss of control, procedures which inflict discomfort, emotions or sensations like fear or a racing heart, and thoughts or beliefs such as “I’m not safe.”
  • Negative thoughts and beliefs about one’s self, the world, or others, which can lead to a negativity bias in which one expects worst-case scenarios or assumes dire motives in others or in large systems. For Clarisse this had resulted in a sense of futility about medical care and catastrophic beliefs that it might actually harm, even kill her.

Poor support networks and other factors.

Some people with PTSD have poor support networks with few, if any, caregivers due to histories of relational stress or social isolation. Ganzel (2018) points out that “patient–staff collaboration and patient care may be compromised because patients struggling with trauma histories are more likely to be anxious, depressed, distrustful, angry, and/or avoidant of trauma reminders, which may include medical settings and medical personnel.”

Patients experiencing fear and vulnerability associated with post-traumatic stress may not adhere to medical recommendations and may have difficulty processing information intended to help them assess treatment options. Some may dissociate or zone out when overwhelmed; others may engage in fight-or-flight behaviors such as arguing or leaving the room.

Signs of trauma-related distress in patients.

For medical professionals encountering patients like Clarisse, it’s important to know that PTSD can affect anyone and that people often conceal trauma histories due to shame, stigma, or wanting to distance themselves from painful memories.

If a nurse fails to recognize signs of trauma-related distress, such patients may be negatively labeled as unintelligent, argumentative, in denial, or as having poor insight, coping, or emotion-regulation skills. Below are possible signs of acute trauma-related distress associated with medical care compiled by the Beacon Program at the University of North Carolina:

  • Patient is highly anxious, agitated, or “jumpy”
  • Appears tearful during exams, with no obvious cause
  • Physically withdraws, or becomes very quiet or “frozen”
  • Has difficulty concentrating, is very distractible, or seems disoriented
  • Minimizes symptoms that might require an intrusive exam
  • Cancels appointments or refuses needed care
  • Exhibits strong emotional reactions to relatively benign interactions (e.g., crying, panic, irritability, anger)
  • Experiences flashbacks or dissociates during appointments

Trauma-informed care.

If a patient is experiencing any of these, or other symptoms suggestive of trauma activation, it’s important to slow down and find ways to enhance a patient’s sense of safety, connection, and control. The Beacon Program offers these tips:

  • Ask the patient if they would like to take a break
  • Ask if they would like a safe family member or friend to be present
  • Prepare the patient ahead of time for the exam by telling them exactly what you are going to do before you do it
  • While performing exams tell the patient what you are doing step by step
  • Ask for permission to touch the patient and check in during exam to make sure they are still okay with you touching them
  • Be present and attentive

When working with patients like Clarisse there are plenty of things nurses cannot control and for which they are not responsible. We cannot force people with histories of psychological trauma to seek care or adhere to recommendations, but we can learn how triggers work, what trauma-related distress looks like, and how to respond.

Even the best care will not guarantee that hospice clinicians like me will no longer see patients like Clarisse now and then. But if we all practice in a trauma-informed way, maybe this will become less likely.

The author of this post, Scott Janssen, MA, MSW, LCSW, is a clinical social worker with UNC Health Care Hospice in Chapel Hill, North Carolina, and a member of the National Hospice and Palliative Care Organization’s Trauma-Informed Care Workgroup. His writing has appeared in publications that include the Journal of Palliative Medicine, Psychotherapy Networker, Washington Post, Reader’s Digest, and HuffPost.

(For an in-depth look at trauma-informed nursing care, read “Trauma-Informed Care in Nursing Practice,” a CE feature article that’s currently free to read.) 

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