Exploring Primary Palliative Care Needs in Survivors of Critical Illness

Background: Survivors of critical illness often experience profound changes in their lives after the intensive care unit (ICU). Although there is promise seen in the increased survival of ICU patients, there are numerous, troubling long-term consequences for these survivors. Given the substantial impairment seen, critical illness survivors possess care needs that are clearly within the scope of palliative care, however the role of palliative care has yet to be clearly defined in critical illness survivors. Purpose: The purpose of this project was: (1) to explore palliative care needs of critical illness survivors in the post-ICU clinic setting through the lens of both survivors and post-ICU clinic interprofessional clinicians, and (2) provide further insight into the overall symptom burden in this population and its effects on health-related quality of life. Methods: Aims 1 and 2 utilized semi-structured interviews and framework analysis to explore the broader experience of surviving critical illness and the impact of these factors on other health care planning. Aim 1 interviewed a diverse group of 17 critical illness survivors and Aim 2 interviewed 29 international post-intensive care unit (ICU) clinic interprofessional clinicians. Aim 3 utilized a retrospective, patient-level cross-sectional observational design of 170 critical illness survivors (aged > 18 years) seen during an initial post-intensive care unit (ICU) outpatient clinic visit between June 2018 and March 2020. De-identified patient demographics, clinical characteristics, and functional status were abstracted, along with self-reported symptom burden using PEACE Tool. These data were evaluated for symptom prevalence and severity and its effect on overall health score reporting. Exploratory factor analysis (EFA) was used to identify symptom clusters measured approximately 1 month after hospital discharge and hierarchical regression analysis was used to examine relationships between the identified symptom clusters and overall health score reporting (EQ-VAS) controlling for age, current in-clinic Lawton IADL score and current Clinical Frailty Scale (CFS). Results: Important themes in the critical illness survivor interviews highlighted persistent symptom burden, patient-centered goals for care, spiritual change and significance, understanding and interpreting illness, and a list of multifaceted social needs. Interviews with interprofessional clinicians identified palliative needs for ICU survivors and their families, however, some confusion persists among clinicians regarding the complete definition of palliative care and how it can be incorporated into their current post-ICU clinic practice. Key elements of palliative care for ICU survivors identified included: revisiting goals of care, symptom management, patient and family support, communication (e.g., medical interpretation, expectation management), spiritual support, and provision of goal-concordant care. For Aim 3, the most prevalent symptoms included weakness/low energy (79.4%), diminished level of function (70.0%), pain (76.5%), and sleep disturbance (67.1%). Symptoms with highest level of severity included pain (6.15 +/- 2.88), incontinence (5.72 +/- 3.12), and sleep disturbance (5.71 +/- 2.65). Additionally, unmet social needs, such as not feeling prepared/fear of future (51.2%), ineffective coping/not in control of care (48.8%), and perceived lack of support (35.9%) were reported. Spiritual distress was reported in 13.5% of patients. The EFA model identified 3 symptom clusters: the stress response cluster, the fatigue/sleep disturbance cluster, and the anxiety/depression cluster. Factor 3 (fatigue/sleep disturbance symptom cluster) and factor 4 (anxiety/depression cluster) were strong predictors of overall health score reporting, along with age and current CFS score. Conclusions: Survivors of critical illness suffer an extensive symptom burden beyond the typically reported manifestations of post-intensive care syndrome (PICS). In addition to symptoms in physical, cognitive, and psychological domains, symptoms associated with social needs are widespread. These findings support standardization of symptom assessment and management in patient surviving critical illness. Additionally, these finding suggest that both critical illness survivors and post-ICU clinicians recognize ongoing holistic care needs which may be well managed by applying a primary palliative care approach to address these unresolved and wide-ranging concerns