Hospitalization Experiences of People with Serious Illness and Traumatic Stress: A Qualitative Pre-Implementation Pilot Study to Inform Trauma-Informed Palliative Care

Background and Purpose: More than two-thirds of patients with serious illness experience post-traumatic stress symptoms (PTSS). PTSS during serious illness is associated with increased pain, anxiety, and difficulty engaging in treatment decisions and end-of-life planning. Due to the invasive and medicalized nature of hospitalization, inpatient serious illness care can trigger traumatic memory and serve as a source of retraumatization. National palliative care (PC) guidelines recommend that PC teams deliver trauma-informed care (TIC) to interrupt and prevent cycles of PTSS during healthcare delivery. Current research about TIC focuses on provider attitudes, beliefs, and knowledge. There is limited understanding of the patient’s perspective of PTSS during hospitalization. Using a pre-implementation qualitative approach, the purpose of this pilot study is to address this gap by exploring hospitalization experiences of people with serious illness and PTSS.

Methods: Using purposive sampling, we conducted semi-structured interviews with 14 participants who met the following criteria: 1) admitted at one of two teaching hospitals in Philadelphia; 2) received PC services during hospital admission; 3) screened positive for active PTSS with a score of 4+ on the Abbreviated Posttraumatic Stress Checklist – Civilian Screening Instrument (PCL-C). Patients were excluded if they demonstrated cognitive difficulties or if they were actively dying. We used a conceptual framework combining the Social Ecological Model of Trauma and the Consolidated Framework for Implementation Research (CFIR) to guide our thematic analysis. Analysis combined deductive-inductive coding with both a priori and in vivo codes to identify final themes. We organized final themes by CFIR ecological levels to further specify mechanisms of hospital harm and retraumatization.

Results: Of the 14 participants, 71% were women, 57% were Black/African American, and the mean age was 47.5 years (range = 29 – 63 years). Nearly half (43%) of participants reported high levels of active PTSS (PCL-C score of 9-10), approximately one-third (29%) reported moderate levels (PCL-C score of 6-8), and the remaining reported low levels of PTSS. Most participants (86%) identified past hospital harm during serious illness care. We identified three key themes: 1) sources of harm or retraumatization; 2) PTSS outcomes; and 3) conditions intervening on PTSS. There were four sub-themes of retraumatization across three ecological levels: 1) loss of bodily control at the individual level; 2) fear of suffering and/or death at the individual level; 3) surveillance at the interpersonal and environmental levels; and 4) dehumanization at the interpersonal and environmental levels. There were three sub-themes of PTSS outcomes at the individual level: 1) emotional, 2) cognitive, and 3) bodily distress. The third theme of intervening conditions included two sub-themes: 1) connection and trust at interpersonal and environmental levels, and 2) ongoing, regular emotional support at individual and interpersonal levels.

Conclusions and Implications: Findings suggest that many patients in this study experienced ongoing and cyclical hospital harms as a source of traumatic stress during serious illness care. These experiences cut across individual, interpersonal, and environmental levels of hospitalization. Findings can be used to inform future TIC intervention pilot testing and modification.