Self-Management for Patients with Progressive, Life-Threatening Diseases and Their Family Caregivers

We are in the midst of a paradigm shift from paternalistic healthcare to more participatory healthcare, where patients’ autonomy and self-determination are increasingly valued. Patients are more and more expected to be in charge of their health. Yet, patient engagement in care is not always self-evident, especially when patients can no longer be cured and care needs are high. Learning that one’s disease has progressed to an advanced and incurable stage is for most patients and their relatives an overwhelming experience that often includes shifting ones goals from curative treatments to focusing on quality of life. Managing the physical, psychosocial and lifestyle consequences of severe illness often includes making complex decisions and navigating through a complex healthcare arena, with care delivered by healthcare professionals from a variety of disciplines. Patient self-management can be supported by healthcare professionals. Still, most of the time, patients, together with their relatives, need to manage a huge part of their life and care themselves. In this chapter, we provide comprehensive insight into self-management for patients with progressive, life-threatening diseases. We describe the concept of self-management and its domains in this population, the role of the family, determinants and outcomes of self-management, the current state of affairs of self-management support programs, and possible innovations for the future.