Humanisation of healthcare cannot be separated from dignity in a patient-centered care model. The International Research Project for the Humanization of Intensive Care Units (Proyecto HU-CI) was initiated in 2014 with the aim of changing the current paradigm of intensive care towards a more human-centered care model. Patients, families, and professionals (everyday stakeholders) were asked to describe their ideal intensive care unit (ICU). Using their opinions, eight areas of interest to improve the culture of ICUs and change the reality of care delivery throughout the world were highlighted. These include: an open-door visitation policy, enhanced communication, a clear focus on patient well-being, presence and participation of relatives in care delivery, care for healthcare professions, recognition and prevention of the post-intensive care syndrome, humanized infrastructure, and comprehensive end-of-life care.

Patient- and Family-Centered Care (PFCC) is fundamental to high-quality healthcare, benefiting patients, families, and clinicians alike. The complex environment of critical care, with its technical demands, often risks dehumanizing patients and families, making PFCC both challenging and vital. Success in PFCC within the ICU depends on intentionally nurturing respectful, humanizing interactions among patients, families, and clinicians. Current PFCC initiatives focus on recognizing patient individuality, promoting patient- and family-centered communication, and enhancing family presence, support, and participation. However, the impact of healthcare disparities on PFCC and its potential to promote health equity need further exploration. Achieving optimal PFCC requires authentic engagement with patients and families from diverse backgrounds, providing crucial insights for improving quality and research. As we pursue these goals, creating a humanistic ICU environment is not only beneficial for patients but a shared responsibility that enhances the well-being of all involved. By fostering a humanistic ICU, we transcend technical aspects, reaffirming the shared humanity that connects patients, families, and clinicians in the pursuit of compassionate and comprehensive critical care.

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.

To use Ronald Dworkin’s well-known phrase, moral equality is usually taken to be the ‘egalitarian plateau’ on which theories of social justice (including theories of social equality) are built. If this is right, then people living with dementia must be our moral equals, in the sense of possessing the same basic moral standing, if we are to have duties of social justice towards them. Yet there are a number of influential moral philosophers who hold that severe cognitive disability, including advanced dementia, can strip a person of this status. This chapter defends the moral equality of people living with dementia, at all stages of progression, and thereby also defends the weight of their claims to social justice.