International Society for Traumatic Stress Studies

Member Reflections: Trauma-Informed Care at the End of Life

07/31/2017
by Scott Janssen, LCSW
Post-traumatic stress disorder (PTSD) among medical patients often goes unrecognized by healthcare professionals despite the fact that medical care and the stress of dealing with an illness can exacerbate underlying posttraumatic stress. Rather than receiving appropriate and skillful support, such patients may be labelled as uncooperative or as having poor coping ability.

Nowhere are the challenges patients face more potentially problematic than for those with a terminal prognosis. Research conducted by Feldman and Periyakoil (2006) identified some of these challenges:
  1. The threat to life inherent in a terminal illness may mimic the original trauma, exacerbating previously mild PTSD symptoms and leading to significant distress;
  2. When key memories are trauma-related, the normal process of life review can lead to intense anxiety, sadness, guilt or anger;
  3. Avoidance symptoms and distrust of authority figures can lead to poor medical adherence and strained communication with one’s medical team; and
  4. Patients with PTSD may lack caregivers because of a history of social isolation and avoidance.
Elderly patients have been found to have a higher likelihood of exposure to trauma (Norris, 1992; Pietrzak, et al, 2012). Issues associated with aging such as the loss of a spouse, decreased physical or cognitive functioning, illness, or transfer to an institutional setting can cause PTSD, exacerbate existing posttraumatic stress or cause delayed-onset PTSD (Hyer, et al, 1995; Aarts et al, 1996; van Achterburg et al, 2001; Peters & Kaye, 2003; Ruzich et al, 2005; McLean & Hales, 2010; Wygant, Hui, & Bruera, 2011).
       
The same is true for medical care itself. Given the decontextualized, often dehumanizing environment of modern healthcare with its array of surreal and invasive technology and imperatives to respond quickly to crises, it is not surprising that patients undergoing cancer treatments, surgeries, dialysis, cardiac and intensive care unit (ICU) care have been found to exhibit higher than average symptoms of PTSD (Kaasa et al, 1993; Tagay et al, 2007; Hatch et al, 2011; Wake & Kitchiner, 2013; Tulloch, 2014; Hall & Hall, 2016).
       
As such, patients receiving end-of-life care are at an elevated risk for having unhealed psychological trauma and PTSD. As one’s proximity to death narrows it may bring an impulse toward life review which can unearth painful memories which had previously been avoided or repressed. Patients may find themselves in a veritable minefield of illness-related trauma triggers which can include the loss of meaningful roles and activities, diminished independence and physical function, symptoms such as pain, shortness of breath or immobility, difficult feeling states like fear or anger, cognitive impairment and ruptures in personal and/or psychological boundaries.
       
Psychological traumas often remain undisclosed to medical staff. Traumatized patients experiencing a sense of threat related to end of life may react with a range of distressing sensations, cognitions and/or behaviors. These can include intense emotions, hypervigilance, distrust, nightmares, anxiety, acute nervous system arousal, panic, intrusive memories, dissociation, emotional numbing or flooding, withdrawal and/or a sense of being overwhelmed.  
     
Without an awareness of the dynamics of trauma on the part of healthcare professionals, which is typically the case, patients who respond in these ways may be labelled as oppositional, paranoid, uncooperative, distrustful, unstable, passive-aggressive, overly dramatic, incommunicative, attention-seeking or as having poor emotion regulation or interpersonal skills.  

In addition, PTSD may undermine the completion of important end of life tasks. For example, a patient for whom life review brings up distressing memories may not be able to resolve issues related to meaning, legacy, or life integration. A patient who is hypervigilant may reject assistance, placing him or herself at risk for isolation, relational conflict, or issues related to safety and/or effective symptom management. Indeed, the classic re-experiencing, hyperarousal and avoidance symptoms associated with PTSD are often in direct opposition to the quest for a peaceful death.   

Complicating the clinical picture is the fact that PTSD can cause physical symptoms such as physical pain, shortness of breath, insomnia and chronic muscle tension, cognitive symptoms including memory loss or impaired concentration as well as systemic issues like suppression of the immune response and high blood pressure.

In the last two decades there has been a widening consensus about the need to develop a trauma-informed approach to care. In one of the few articles on trauma-informed care at the end of life, Ganzel (2016) points out that “many different types of hospice patients (not only veterans) are likely to have histories of psychological trauma, and that skillful awareness of this point improves patient care. In short, there is an overall need for hospice and palliative care to be trauma-informed.”

This applies not only to individual practitioners, but to the systems and organizations in which they work. The National Center for Trauma-Informed Care’s guidelines specify that organizations, in this case those such as hospices, hospitals, palliative inpatient units, skilled nursing facilities: (1) must recognize the widespread impact of trauma on the populations they serve; (2) recognize the signs and symptoms of trauma in clients, patients, families, and professional staff (who are at risk for secondary or vicarious trauma); and (3) respond by fully integrating knowledge about trauma into policies, procedures and practices, with an eye toward reducing distress, avoiding re-traumatization and accessing avenues for healing.

Very little research has been done on specific types of interventions which might be useful for terminally ill patients struggling with the dual, at times conflicting, challenges of facing death and posttraumatic stress. Though advanced psychological interventions and counseling should be left to those who are trained in this area, all medical professionals should know the basics when it comes to PTSD (and traumatic stress symptomatology generally) as well as strategies for building trust and helping patients self-regulate.

One of the benefits of a trauma-informed approach is simply that it raises one’s awareness of the prevalence of psychological trauma and PTSD in patients. It also sensitizes medical staff to factors which may explain troubling behaviors and issues with emotion-regulation or communication, mitigating the risks that these patients will be overlooked or stigmatized.

Unfortunately, many hospices and palliative care teams do not provide substantive, ongoing training in this area. Many struggle with how to assess, identify and respond to these patients, other do not even try.

This is not acceptable. Patients who have struggled with unhealed PTSD may bring painful histories of relational stress, shame, depression or a sense of being alone, unsafe, misunderstood, even flawed. When they enter the often frightening world of modern medical care or are given a terminal diagnosis, old traumatic wounds and defensive patterns may become activated. Those who are working in end-of-life care may be the last hope for some measure of peace before the last breath is taken. But to bring this peace, provider working in end-of-life care must become trauma-informed.    

About the Author

Scott Janssen, LCSW, is a hospice social worker trained in Somatic Experiencing and trauma-focused CBT. An Editorial Adviser for the magazine Social Work Today, he has published widely on issues relating to hospice care, psychological trauma and working with veterans. His book, Standing at Lemhi Pass: Archetypal Stories for the End of Life and Other Challenging Times, explores the use of storytelling with terminally ill patients and their caregivers. He is a member of ISTSS and can be reached at scott@hospiceac.org.

References

Aarts, P. G. H., den Velde, W. O., Falger, P. R. Hovens, J. E., De Groen, J. H. M., & Van Duijin, H. (1996). Late onset of posttraumatic stress disorder in aging resistance veterans in the Netherlands. In Ruskin, P. E., & Talbott, J. A. (Eds.), Aging and posttraumatic stress disorder (pp. 56-76). Washington: DC: American Psychiatric Press.

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

Ganzel, B. (advance access publication December 6, 2016). Trauma-Informed hospice and palliative Care. The Gerontologist. gnw146. doi: 10.1093/geront/gnw146.

Hall, M. F. & Hall, S. E. (2016). Managing the psychological impact of medical trauma. New York: Springer.

Hatch, R, McKechnie, S. & Griffiths, J. (2011). Psychological intervention to prevent ICU-related PTSD: Who, when and for how long? Critical Care, 15:141.

Hyer, L., Summers, M. N., Braswell, L. & Boyd, S. (1995).Posttraumatic stress disorder: Silent problem among older combat veterans. Psychotherapy, 32, 348-364.

Kaasa, S., Malt, U., Hagen, S., Wist, E., Moum, T., & Kvikstad, A. (1993). Psychological stress in cancer patients with advanced disease. Radiotherapy and Oncology, 27(3), 193-197.

McLean, L. M., & Hales, s. (2010). Childhood trauma, attachment style, and a couple’s experience of terminal cancer: Case study. Palliative and Supportive Care, 8, 227-233.

Norris, F. H. (1992). Epidemiology of trauma. Journal of Counseling and Clinical Psychology, 60, 409-418.

Peters, J., & Kaye, L. W. (2003). Childhood sexual abuse; a review of its impact on older women entering institutional settings. Clinical Gerontologist, 26, 29-53.

Pietrzak, R. H., Goldstein, R. B., Southwick, S. M., & Grant, B. F. (2012). Psychiatric comorbidity of full and partial posttraumatic stress disorder among older adults in the United States. The American Journal of Geriatric Psychiatry, 20, 380- 390.

Ruzich, M. J., Looi, J. C. L., & Robertson, M. D., (2005) Delayed onset of posttraumatic stress disorder among male combat veterans. American Journal of Geriatric Psychiatry, 123, 424-427.

Tagay, S., Kribben, A. Hohenstein, A, Mewes, R, & Senf, W. (2007) Posttraumatic stress disorder in hemodialysis patients. American Journal of Kidney Disorders, 50(4), 594-601.

Tulloch, H., Greenman, P., & Tasse, V. (2015). Post-traumatic stress disorder among cardiac patients: prevalence, risk factors, and considerations for assessment and treatment. Behavioral Sciences (Basel). March, 5(1), 27-40.

Van Achterberg, M. E., Rohrbaugh, R. M., Southwick, S. M. (2001), Emergence of PTSD in trauma survivors with dementia. Journal of Clinical Psychiatry, 62, 206-207.

Wake, S, & Kitchiner, D. (2013) Post-traumatic stress disorder after intensive care. British Medical Journal, 346.

Wygant, C., Hui, D., & Bruera, E. (2011). Childhood sexual abuse in advanced cancer patients in the palliative care setting. Journal of Pain and Symptom Management, 42, 290-295.
 

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