The Voice that Is Missing: The Evolving Role of Patients and Families in Escalation of Care

Rapid response systems have been created as a response to the widely acknowledged and publicized failure to rescue patients who are deteriorating while being cared for in hospital. This chapter sets out to investigate the changing role of patients and their families in the creation of safer systems in hospitals, emergency departments, and beyond. Emphasis on the family role in different parts of the world over the past 20 years has been influenced by national policies and evolving concepts of health equity, patient rights, and healthcare providers’ responsibilities in communication. Families of children who have died have led the way in reforms around rescue of deteriorating patients, with two major themes being patient- and family-activated escalation and public awareness of sepsis. Cases from Australia and the USA are presented as raising the practical and ethical questions brought to light by attempts to address the problem of failure to rescue, the contributions that families have made, the potential for expanding the concept of patient rescue, and the centrality of the patient voice.