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

Importance of reconnection with ICU survivors to ICU recovery program clinicians

No abstract available

Enablers and Barriers to Implementing ICU Follow-Up Clinics and Peer Support Groups Following Critical Illness: The Thrive Collaboratives

OBJECTIVES: Data are lacking regarding implementation of novel strategies such as follow-up clinics and peer support groups, to reduce the burden of postintensive care syndrome. We sought to discover enablers that helped hospital-based clinicians establish post-ICU clinics and peer support programs, and identify barriers that challenged them. DESIGN: Qualitative inquiry. The Consolidated Framework for Implementation Research was used to organize and analyze data. SETTING: Two learning collaboratives (ICU follow-up clinics and peer support groups), representing 21 sites, across three continents. SUBJECTS: Clinicians from 21 sites. MEASUREMENT AND MAIN RESULTS: Ten enablers and nine barriers to implementation of "ICU follow-up clinics" were described. A key enabler to generate support for clinics was providing insight into the human experience of survivorship, to obtain interest from hospital administrators. Significant barriers included patient and family lack of access to clinics and clinic funding. Nine enablers and five barriers to the implementation of "peer support groups" were identified. Key enablers included developing infrastructure to support successful operationalization of this complex intervention, flexibility about when peer support should be offered, belonging to the international learning collaborative. Significant barriers related to limited attendance by patients and families due to challenges in creating awareness, and uncertainty about who might be appropriate to attend and target in advertising. CONCLUSIONS: Several enablers and barriers to implementing ICU follow-up clinics and peer support groups should be taken into account and leveraged to improve ICU recovery. Among the most important enablers are motivated clinician leaders who persist to find a path forward despite obstacles

Key mechanisms by which post-ICU activities can improve in-ICU care: results of the international THRIVE collaboratives

Objective: To identify the key mechanisms that clinicians perceive improve care in the intensive care unit (ICU), as a result of their involvement in post-ICU programs. Methods: Qualitative inquiry via focus groups and interviews with members of the Society of Critical Care Medicine’s THRIVE collaborative sites (follow-up clinics and peer support). Framework analysis was used to synthesize and interpret the data. Results: Five key mechanisms were identified as drivers of improvement back into the ICU: (1) identifying otherwise unseen targets for ICU quality improvement or education programs—new ideas for quality improvement were generated and greater attention paid to detail in clinical care. (2) Creating a new role for survivors in the ICU—former patients and family members adopted an advocacy or peer volunteer role. (3) Inviting critical care providers to the post-ICU program to educate, sensitize, and motivate them—clinician peers and trainees were invited to attend as a helpful learning strategy to gain insights into post-ICU care requirements. (4) Changing clinician’s own understanding of patient experience—there appeared to be a direct individual benefit from working in post-ICU programs. (5) Improving morale and meaningfulness of ICU work—this was achieved by closing the feedback loop to ICU clinicians regarding patient and family outcomes. Conclusions: The follow-up of patients and families in post-ICU care settings is perceived to improve care within the ICU via five key mechanisms. Further research is required in this novel area

Caring for the critical illness survivor current practices and the role of the nurse in intensive care unit aftercare

The success of critical care medicine has historically been gauged by short-term mortality outcome. With technological advances, many patients now survive what were previously fatal critical illnesses, generating an expanding population of critical care survivors. Many survivors suffer with new or worsening impairments in physical, cognitive or mental health status arising after a critical illness and persisting beyond acute care hospitalization which has been termed Post Intensive Care Syndrome (PICS). This term can be applied to a survivor or a family member who often experiences significant social & psychiatric burdens caring for a survivor of critical illness. It is estimated that PICS develops in greater than 2.4 million Americans who survive critical illness each year, including approximately two-thirds of Medicare beneficiaries who survive critical illness. As a consequence of both an aging population and the dramatic improvement in mortality rates in those suffering from critical illness, PICS is rapidly becoming a major public health concern. For these survivors, new impairments after critical illness can have dramatic impacts on their quality of life or ability to be employed, and may persist for months or years after hospital discharge. This review of the will examine emerging practices in relation to ICU after care for both patients and caregivers, with specific emphasis on the critical role of the nurse

Evolution in care delivery within critical illness recovery programs during the COVID-19 pandemic: A qualitative study

Rationale: There are limited data on the impact of the COVID-19 pandemic on intensive care unit (ICU) recovery clinic care delivery practices. Objectives: We sought to better understand the patient-level factors affecting ICU recovery clinic care and changing clinical thinking during the COVID-19 pandemic. We also sought to understand how the COVID-19 pandemic sparked innovation within ICU recovery clinics. Methods: A multicenter qualitative study was conducted with ICU recovery clinic interprofessional clinicians involved with the Critical and Acute Illness Recovery Organization (CAIRO) between February and March 2021. Data were collected using semi-structured interviews and were analyzed using thematic analysis. Key themes were organized in a working analytical framework. Results: Twenty-nine participants from fifteen international sites participated in the study. Participants identified three patient-level key themes which influenced care delivery in ICU recovery programs: 1) social isolation; 2) decreased emotional reserve in patients and families; and 3) substantial social care needs. Changes in ICU recovery clinic care delivery occurred at both clinician-level (e.g., growing awareness of healthcare disparities and inequities, recognition of financial effects of illness, refinement of communication skills, increased focus on reconstructing the illness narrative) and practice-level (e.g., expansion of care delivery modes, efforts to integrate social care) in response to each of the patient-level themes. Identified gaps in ICU recovery clinic care delivery during the COVID-19 pandemic included a need for multidisciplinary team members, access to care issues (e.g., digital poverty, health insurance coverage, language barriers), and altered family engagement. Conclusion: Our study demonstrated that addressing patient-level factors such as efforts to integrate social care, address financial needs, refine provider communication skills (e.g., empathic listening), and enhance focus on reconstructing the illness narrative became important priorities during the ICU recovery clinic visit during the COVID-19 pandemic. We also identified several ongoing gaps in ICU recovery clinic care delivery which highlight the need for interventions focused on the integration of social and clinic services for critical care survivors

Driving decisions after critical illness: qualitative analysis of patient-provider reviews during ICU recovery clinic assessments

Background: Driving a vehicle is a functional task requiring a threshold of physical, behavioral and cognitive skills. Objective: To report patient-provider evaluations of driving status and driving safety assessments after critical illness. Design: Qualitative secondary analysis of driving-related dialog drawn from a two-arm pilot study evaluating telemedicine delivery of Intensive Care Unit Recovery Clinic assessments. Multidisciplinary providers assessed physical, psychological, and cognitive recovery during one-hour telemedicine ICU-RC assessments. Qualitative secondary analysis of patient-provider dialog specific to driving practices after critical illness. Setting and Patients: Multidisciplinary Intensive Care Unit Recovery clinic assessment dialog between 17 patients and their providers during 3-week and/or 12-week follow-up assessments at a tertiary academic medical center in the Southeastern United States. Main Measures and Key Results: Thematic content analysis was performed to describe and classify driving safety discussion, driving status and driving practices after critical illness. Driving-related discussions occurred with 15 of 17 participants and were clinician-initiated. When assessed, driving status varied with participants reporting independent decisions to resume driving, delay driving and cease driving after critical illness. Patient-reported driving practices after critical illness included modifications to limit driving to medical appointments, self-assessments of trip durations, and inclusion of care partners as a safety measure for new onset fatigue while driving. Conclusion: We found that patients are largely self-navigating this stage of recovery, making subjective decisions on driving resumption and overall driving status. These results highlight that driving status changes are an often underrecognized yet salient social cost of critical illness. Trial Registration: Clinicaltrials.gov: NCT0392653

Driving decisions after critical illness: Qualitative analysis of patient-provider reviews during ICU recovery clinic assessments.

BACKGROUND: Driving a vehicle is a functional task requiring a threshold of physical, behavioral and cognitive skills. OBJECTIVE: To report patient-provider evaluations of driving status and driving safety assessments after critical illness. DESIGN: Qualitative secondary analysis of driving-related dialog drawn from a two-arm pilot study evaluating telemedicine delivery of Intensive Care Unit Recovery Clinic assessments. Multidisciplinary providers assessed physical, psychological, and cognitive recovery during one-hour telemedicine ICU-RC assessments. Qualitative secondary analysis of patient-provider dialog specific to driving practices after critical illness. SETTING AND PATIENTS: Multidisciplinary Intensive Care Unit Recovery clinic assessment dialog between 17 patients and their providers during 3-week and/or 12-week follow-up assessments at a tertiary academic medical center in the Southeastern United States. MAIN MEASURES AND KEY RESULTS: Thematic content analysis was performed to describe and classify driving safety discussion, driving status and driving practices after critical illness. Driving-related discussions occurred with 15 of 17 participants and were clinician-initiated. When assessed, driving status varied with participants reporting independent decisions to resume driving, delay driving and cease driving after critical illness. Patient-reported driving practices after critical illness included modifications to limit driving to medical appointments, self-assessments of trip durations, and inclusion of care partners as a safety measure for new onset fatigue while driving. CONCLUSION: We found that patients are largely self-navigating this stage of recovery, making subjective decisions on driving resumption and overall driving status. These results highlight that driving status changes are an often underrecognized yet salient social cost of critical illness. TRIAL REGISTRATION: Clinicaltrials.gov: NCT03926533

Hospital factors that influence ICU admission decision-making: a qualitative study of eight hospitals

PURPOSE: Some hospitals in the United States (US) use intensive care 20 times more than others. Since intensive care is lifesaving for some but potentially harmful for others, there is a need to understand factors that influence how intensive care unit (ICU) admission decisions are made. METHODS: A qualitative analysis of eight US hospitals was conducted with semi-structured, one-on-one interviews supplemented by site visits and clinical observations. RESULTS: A total of 87 participants (24 nurses, 52 physicians, and 11 other staff) were interviewed, and 40 h were spent observing ICU operations across the eight hospitals. Four hospital-level factors were identified that influenced ICU admission decision-making. First, availability of intermediate care led to reallocation of patients who might otherwise be sent to an ICU. Second, participants stressed the importance of ICU nurse availability as a key modifier of ICU capacity. Patients cared for by experienced general care physicians and nurses were less likely to receive ICU care. Third, smaller or rural hospitals opted for longer emergency department patient-stays over ICU admission to expedite interhospital transfer of critically ill patients. Fourth, lack of clarity in ICU admission policies led clinicians to feel pressured to use ICU care for patients who might otherwise not have received it. CONCLUSION: Health care systems should evaluate their use of ICU care and establish institutional patterns that ensure ICU admission decisions are patient-centered but also account for resources and constraints particular to each hospital