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. Author manuscript; available in PMC: 2012 Mar 1.
Published in final edited form as: J Nurs Healthc Chronic Illn. 2011 Mar;3(1):1–3. doi: 10.1111/j.1752-9824.2011.01083.x

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

Donald E Bailey Jr 1, Karen Steinhauser 2, Cristina Hendrix 3, James A Tulsky 4
PMCID: PMC3107002  NIHMSID: NIHMS294121  PMID: 21643547

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.

Study 1: Enhanced Self-Efficacy Training for Informal Cancer Caregivers (Medical Management)

This study examines the effects of an Enhanced Caregiver Training protocol delivered to informal caregivers of cancer patients before hospital discharge. The primary aim is to test the effects of the training on caregivers’ self-efficacy in cancer symptom management and self-efficacy in self-management of stress. The participants are cancer patients and their informal caregivers, but the caregivers will be the primary recipients of the training.

Subjects in the treatment group receive an individualized experiential caregiver training in strategies for managing patient’s symptoms and in the use of pleasant imagery and muscle relaxation to manage stress, whereas subjects in the attention-control group receive an informational session about cancer and resources for caregiving. The study also looks at the effects of this training on caregiver outcomes (depression, anxiety, quality of life, caregiver stress) and patient outcomes (symptom distress and intensity, depression, anxiety, quality of life).

Study 2: Uncertainty Management in Patients Waiting for a Liver Transplant (Emotional Management)

This study tests the efficacy of an Uncertainty Management Intervention delivered via telephone by a nurse to the patient and caregiver. The overall goal of this project is to improve symptoms and quality of life for these patients and their caregivers by providing them with the resources and tools to self-manage their complex concerns. Participants have been diagnosed with end stage liver disease (ESLD), have no major cognitive impairment, are on the liver transplant wait list, and have a caregiver willing to participate.

The uncertainty intervention is based on the problems and concerns of patients with end stage liver disease who are awaiting liver transplant. Topics include coping skills training and symptom management. An educational control group of patients and caregivers receives a call designed to educate them about liver disease. The study will examine the effects of the intervention on patients’ and caregivers’ abilities to manage the symptoms and distress associated with end stage liver disease and the process of awaiting liver transplant.

Study 3: OUTLOOK – An Intervention to Improve Quality of Life in Serious Illness (Role Management)

This study tests an intervention that encourages patients with advanced disease to grapple with role issues of preparation and life completion. This study will demonstrate whether an end-of-life preparation and completion intervention reduces anxiety, depression, pain and other symptoms and improves functional status, spiritual well-being, and quality of life. The study focuses on patients with at least one of three life-limiting illnesses: Stage IV metastatic cancer, Congestive Heart Failure, or Chronic Obstructive Pulmonary Disease. Subjects in the treatment group meet with a facilitator three times for a period of forty-five minutes discussing topics including life review, forgiveness, and future goals and legacy. Participants in the attention-control arm, meet with a facilitator three times for a period of forty-five minutes each and listen to a non-guided relaxation CD.

Three Become One

Each trial, by itself, offers the potential to advance the literature and make a significant contribution. Yet, the purpose of conducting these studies concurrently is to create new knowledge that is more than the sum of its parts. First, all of the projects share common theoretical frameworks and behavioral tools for increasing patient and caregiver self-efficacy, and include practical coping skills, uncertainty, and how patients grow and maintain self despite living with advanced disease. However, each addresses different aspects of the self-management construct: medical, emotional or role management, demonstrating the efficacy in each of three crucial aspects of patient experience. Second, each study enrolls patients with life-limiting illness, but the patients in the different studies are at different points of the trajectory of disease. Some still hold out realistic hope for cure, whereas others are clearly at the end-stage of illness. Close examination of the three studies will inform us about the timing of interventions, and their acceptance across the trajectory of illness. Third, we use common outcome measures, wherever possible, across all three studies. This provides the opportunity to evaluate the relative effect of each of these interventions on important domains of care. In the conceptual schematic model (see Figure 1), we illustrate relationships of the studies to self-management components and outcomes. Most importantly, results obtained through three-study comparison will facilitate the development of a theory of how self-management strategies can be effectively utilized by people with life-limiting illness to reduce their suffering and promote quality in the remaining years of their lives.

Figure 1.

Figure 1

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Self-Management Intervention Conceptual Model

Summary

Individuals with life-limiting illness face significant challenges to their medical, emotional, and role integrity. Self-management interventions for patients and caregivers provide tools to address these challenges, thereby increasing autonomy and improving quality of life. Our Center for Self-Management in Life-Limiting Illness tests three innovative self-management interventions for this population. Together they will assist in developing a comprehensive model of self-management in life-limiting illness.

Acknowledgments

This study was supported by a research grant from the National Institute of Nursing Research (NIH/NINR: P01 NR010948, Tulsky PI).

Contributor Information

Donald E. Bailey, Jr., Senior Fellow, Duke Center for Aging Duke University School of Nursing DUMC P.O. Box 3322 Durham, North Carolina 27710 Telephone: 919-681-3003 Fax: 919-681-8899 chip.bailey@duke.edu.

Karen Steinhauser, Duke University School of Medicine & Center for Health Services Research in Primary Care Durham VAMC Durham, NC 27710 Telephone: 919 668-2148 Fax: 919 416-5836 stein020@mc.duke.edu.

Cristina Hendrix, Duke University School of Nursing & Nurse Investigator, GRICC Durham VAMC Durham, NC 27710 Telephone: (919) 684-9358 Fax: 919-681-8899 cristina.hendrix@duke.edu.

James A. Tulsky, Director of the Center for Palliative Care Duke University School of Medicine & Center for Health Services Research in Primary Care, Durham VAMC Durham, NC 27710 Telephone: 919 668-2362 Fax: 919 668-1300 jtulsky@duke.edu.

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