Pairing Self-Management with Palliative Care: Intervening in Life-Limiting Illness.

Approximately 2.5 million Americans die each year, the majority of whom live with chronic illnesses that become life-limiting such as cancer, advanced heart failure, and end stage liver disease (Steinhauser et al. 2002). These patients confront complex challenges to their physical health, psychosocial identity, spiritual integrity, and emotional well-being. Unfortunately, amidst these multi-dimensional challenges, many are left to navigate this course largely on their own with their needs being tended to by themselves or a family caregiver (Corbin & Strauss 1988). Patients living with life-limiting illness find themselves confronting the dual states of survivorship and limited mortality (Steinhauser et al. 2000, Steinhauser et al. 2006a; Steinhauser et al. 2006b). Health care providers have tended to treat these two concerns as competing states rather than a larger paradoxical whole, leaving patients to navigate a health care system in which treatments for life-limiting illness are offered in a bifurcated fashion; one is either fighting disease or dying. In reality, most patients seek to embrace the hope of survivorship, living as well as possible, while acknowledging that time may be limited. Regrettably, patients receive little guidance on how to approach this dilemma. Needed are systematic, evidence-based strategies of care that incorporate concerns of both survivorship and end of life, and empower patients through knowledge, skills, and self-efficacy. The patient self-management paradigm fosters such strategies (Corbin & Strauss 1988; Lorig et al. 1999; Holman & Lorig 2000; Lorig et al. 2001; Newman et al. 2001; Bodenheimer et al. 2002; Loring & Holman 2003; Newman et al. 2004; Chodosh et al. 2005; Coleman & Newton 2005). Acknowledging that many patients are already self-managing their illness experience, clinicians and researchers working in chronic illness have introduced an alternative model of explicit self-management. Together, the self-management techniques of skill building, problem-solving and self-efficacy, along with patient provider-partnership enable patients to make choices regarding how they will respond to illness. Strikingly little attention has been given to pairing this promising model with caring for those with life-limiting illness. Yet, the medical, emotional, and role demands of these later stages of illness trajectory produce patients and families in great need of the tools of self-management, namely tailored skill-building, empowerment, and self-efficacy. Life-limiting illness heightens the intensity and expands the spectrum of those needs. Symptoms such as pain, dyspnea, nausea and vomiting tend to be more severe and progressive over time. Coincident with these heightened medical concerns, role and emotional issues are intensified as well. Uncertainty regarding prognosis, future independence, time remaining, concern about burden or family well-being is relentless. Left unattended, emotional and role concerns, like medical needs, also can produce feelings of being alone and dependent. To operationalize this model, we established the Center for Self-Management in Life-Limiting Illness with a goal to develop, refine, and test self-management interventions across the trajectory of illness. Funded by the National Institute of Nursing Research under the P01 mechanism, the Center employs a high level of synergy among three intervention studies as it explores medical, emotional and role management intervention strategies. Together, these studies represent a comprehensive, mutually, reinforcing approach to the study of self-management in life-limiting illness while evaluating the need for self-management at various points in the trajectory of life-limiting illness, and discerning mechanisms of intervention failures or success. The three intervention studies are briefly described below.