Because of advances in technology and the provision of critical care, an increasing number of patients are surviving critical illness; this growing population of survivors of critical illness is characterized by heightened vulnerability to a host of adverse health outcomes and by the development of multidimensional impairments that significantly impact their quality of life and societal participation. Post-intensive care syndrome (PICS) is defined as new or worsening impairments in physical, cognitive, or mental health status arising after a critical illness and persisting beyond acute care hospitalization. PICS-Family describes the psychological and social impairments that family members, loved ones, and caregivers can develop as a consequence of their loved one’s critical illness. Survivors of critical illness are a heterogeneous patient population, and considerable variation exists with respect to the breadth, depth, duration, and mutability of their symptoms and impairments. This chapter explores the clinical manifestations of PICS, its incidence and prevalence, the co-occurrence of impairments in multiple domains, duration and severity of impairments, risk factors for its development, prediction tools, prevention strategies, screening and diagnosis, and treatment options. Additional topics include the biophysical model of disability, functional trajectories following critical illness, and the lack of communication about post-ICU problems.

This chapter serves to identify barriers and solutions for PICS clinic formation and success. Systematic identification of patients with PICS risk factors and their stakeholders in care can facilitate education about the pathophysiology of PICS during hospitalization. Early clinic team contact with the patient and their care stakeholders increases clinic recruitment and reduces attrition through clarifying the need and purpose of the clinic. Secondary to the patient’s medical complexity and progression through hospitalization, rehabilitation, and home, there are inherent risks for gaps in care. These gaps can be bridged with an interdisciplinary screening process and transition of care plan.

While much of this book has been focused on describing post-intensive care syndrome (PICS) in objective terms, is if often the personal stories of survivors of critical illness and their loved ones that are so much more revealing than the distance walked during 6 minutes or a score on a cognitive test. It was not until I began seeing patients in my ICU follow-up clinic that I truly appreciated how life-changing an experience surviving critical illness could be. Understanding the real-life impact of the physical, functional, cognitive, psychiatric, and social impairments that those suffering from PICS face is a profoundly moving and motivating experience. For that reason, I wanted to close this book with stories of survivors of critical illness and their loved ones, allowing the reader to synthesize and contextualize the objective data that has heretofore been presented in neatly parsed, individual chapters and to more deeply appreciate how that data translates into a much more impactful lived experience.

Effective post-ICU recovery requires empathetic exploration of the ICU experience and a detailed evaluation of the unique challenges and symptoms faced by survivors of critical illness. Utilizing palliative care techniques in this evaluation helps clinicians identify unmet needs and coordinate post-ICU management around patient-centered goals. Several palliative care tools and techniques may be used by ICU follow-up clinic providers without specialized palliative care training. Screening tools like the Edmonton Symptom Assessment Scale and Palliative Performance Scale may help clarify post-intensive care syndrome (PICS) symptoms and prognosis, while communication techniques like Ask-Tell-Ask and NURSE emotional response statements may offer insight into patient values and expectations in the post-ICU setting. The implementation of primary palliative care techniques in ICU follow-up clinics may additionally aid in the completion of documents like Advance Directives, which help clarify patient wishes. Specialized palliative care referral may be considered in situations with unmet needs, such as severe physical symptoms, existential distress, and prognosis less than one year. Integration of palliative care principles into the evaluation and management of PICS may ultimately facilitate meaningful recovery in survivors while fostering the concept of post-traumatic growth after critical illness.

Intensive care unit (ICU) admissions create immense psychological challenges for patients and their loved ones. With increasing recognition of the psychological impact of an ICU admission, qualified psychologists have been incorporated into the care team both to address acute psychological stress during the admission and to help prevent continuing psychological difficulties after hospital discharge. This chapter describes the direct work that ICU psychologists do with patients, the support they provide for families, and other indirect ways they contribute to improving communication, psychological understanding, and the therapeutic environment in the ICU. Psychologists use a range of evidence-based approaches in their ICU work, including interventions based on cognitive behavioral therapy (CBT). Research into the most effective ways of delivering psychological interventions in the ICU is still in its infancy and should be prioritized now that psychological professionals are increasingly engaged with ICU teams.

An intensive care unit admission (ICU) can have a profound impact on patients and their families and loved ones. Most people experience heightened emotions, both negative and positive, during their time in the ICU. We know that the experiences that patients have in the ICU affect their psychological recovery and quality of life after hospital discharge. Risk factors for later psychological difficulties include acute stress and disturbing memories associated with the ICU; clinical factors, such as duration of sedation and delirium; and socio-demographic factors, such as age, gender, and socio-economic status. Patients have to deal with a range of challenges in the ICU, including illness-related, environment-related, and interpersonal stressors. ICU staff, including psychologists, should recognize common sources of distress and aim to alleviate patients’ stress through enhanced communication techniques and psychological interventions. Studying the coping strategies of patients who have a more positive experience during their time in the ICU is a promising way to help reduce stress and improve outcomes of intensive care.

Survivors of critical illness frequently experience dyspnea. While often multifactorial, dyspnea may result from various pulmonary and diaphragmatic complications. Early detection and targeted interventions are crucial for managing these complications effectively. Due to the diverse nature of the respiratory conditions that patients encounter following critical illness, establishing universal instruments to evaluate pulmonary function in the post-ICU setting is challenging. Spirometry, plethysmography, diffusing capacity of the lung for carbon monoxide, and the six-minute walk test are commonly used measures; howevber, it is important that these measures be interpreted in the context of patient-centered outcomes, such as health-related quality of life. This chapter proposes a framework for effective pulmonary follow-up in an ICU follow-up clinic, focusing on individualized care through a multidisciplinary approach.

Despite surviving critical illness, limitations in physical function can be present for months to years following hospital discharge. Physical disability in survivors of critical illness may present as an impairment in a single body function or as multiple deficits by affecting several body structures and domains. Physical therapists should utilize performance-based and self-report outcome measures to assess physical disability in individuals surviving critical illness; assessment should occur early during recovery and be repeated based on individual needs. This chapter reviews the literature highlighting the frequency and severity of physical impairment and disability related to post-intensive care syndrome and describes physical therapy approaches for screening, assessment, and interventions for survivors of critical illness. In this chapter, we use the term physical disability to be inclusive of the physical symptoms, impairments, and limitations in physical function commonly experienced in survivors of critical illness.

For decades, the belief in the critical care community was that survival alone was a good outcome, and although that remains relatively true, it is also clear that survivors of critical illness face numerous debilitating symptoms, physical and neuropsychological morbidities, and functional impairments that require long-term management. As both the number of survivors and recognition of the burden of survivorship have increased significantly over the last 25 years, clinicians and researchers have paid considerably more attention to outcomes beyond mortality. The late 1990s and the early 2000s witnessed a period of significant growth in recognition of and research interest in long-term outcomes after critical illness. Major scientific meetings included significant content on survivorship following critical illness, particularly after the 2002 Brussels Roundtable issued a call to improve critical care research by investigating long-term, patient-centered outcomes beyond mortality alone. The field took a significant leap forward in 2010, when the term post-intensive care syndrome (PICS) was coined to describe the impairments in physical, cognitive, and mental health arising after a critical illness and persisting beyond hospital discharge. Although important in focusing the field, the definition of PICS does not address severity, duration, or impact on other domains of health.

Developing and sustaining ICU follow-up clinics to address PICS in survivors of critical illness and their loved ones pose significant challenges, and clinics need to be tailored to the physical, personnel, and financial resources available at a given institution. Although no standard recipe guarantees a successful ICU aftercare program, emerging clinics need to address a common set of hurdles, including securing an adequate space; assembling an invested, multidisciplinary staff; and procuring the necessary equipment, technological, and financial support to be successful. Although certain risk factors for the development of PICS are defined, there remains no consensus on screening tools to determine which patients would derive most benefit, and recruitment strategies for clinic participants remain institution-dependent. Although there is expert consensus on some screening tools to detect PICS, significant additional investigation is needed to refine these recommendations. Benefits derived by patients and their families, feedback mechanisms to improve in-ICU care at the organizational and clinician level, and the general lack of awareness of PICS among the critical care, medical, and lay communities demand that motivated clinicians with a commitment to interprofessional teamwork, defined operational processes, and creative problem-solving skills continue their efforts to further refine the promise of ICU follow-up clinics.

Key Learning Points

1. 1. Long-term physical and non-physical sequelae following critical care illness in patients are increasingly recognised.

2. 2. Sequelae may include changes in cognition, psychology and physical well-being.

3. 3. Meticulous attention to the ‘ABCDEF care bundle’ can help improve long-term function.

4. 4. Individualised rehabilitation programmes should be developed for patients at risk of morbidity.

5. 5. Services must be provided to support critical care patients beyond their acute admission.

Key Learning Points

1. 1. Post-intensive care syndrome (PICS) affects between 40 and 60 per cent of critical illness survivors, and manifests as new impairments of cognitive, psychological and/or physical function.

2. 2. Major risk factors for PICS include >72 hours of mechanical ventilation, prolonged ICU delirium, maternal/obstetric critical illness and baseline physical and mental health co-morbidities.

3. 3. The typical service model of follow-up care includes a face-to-face outpatient review approximately 2–3 months following discharge home, with follow-up visits at 6 and 12 months where required.

4. 4. Physical, cognitive, psychological and global clinical outcomes should be evaluated using domain-specific tools and assessments.

5. 5. Critical care recovery clinics provide an important opportunity to reconnect with patients and ‘re-humanise’ the ICU care delivered.