Chapter 16: A Model: Supporting the Caregiver through the Crisis of Cancer

BACKGROUND AND INTRODUCTION

Cancer caregivers are a ubiquitous, stressed, and burdened population with little social or professional support. Estimated new cancer cases in the United States in 2009 as projected by the American Cancer Society¹ will affect 1,479,350 people. Of those newly diagnosed >1 million patients, 65% will likely survive at least 5 years, a notable improvement over previous survival rates of 50% of those diagnosed from 1974 to 1976 and 54% from 1983 to 1985.² Not too long ago, having cancer was considered an acute disease carrying a high mortality rate. At present, many of those same cancers are treated with various therapies that may extend a patient's life beyond previous medical expectations, enabling him or her to live with a chronic disease with a fluctuating level of quality of life. Given that patients are now living longer and, in some cases, sicker, the role of and need for caregiving is extended. There are now over 22.4 million families caring for their chronically medically ill loved ones as a result of earlier hospital discharges in an attempt to control costs.³ Because of these attempts to control medical costs by shortening hospital stays as well as lengthened survival rates, the home has become an outpatient medical care setting. The caregiver, although in most cases not formally medically trained, is providing the bulk of daily medical care from the initial diagnosis to the end of life for many patients. Caregivers are now performing complex medical tasks that not too long ago were performed solely by highly trained and experienced inpatient nurses.

A caregiver is "a person who is responsible for attending to the needs of a child or dependent adult."⁴ This is a simple explanation fraught with diversified minefields, such as "a person," which likely translates into one unpaid immediate family member shouldering most of the physical, emotional, financial, and medical caregiving burden. The reference to "responsible for attending to the needs of a … dependent adult" conceals the scope of adaptations to this role change and assumption of tasks in the daily life of a caregiver. It is little wonder that the literature points to a high level of distress among cancer caregivers, who often feel overwhelmed with physical and emotional fatigue as a result of the unrelenting and cumulative burden of providing ongoing comprehensive care for their loved one. This includes assuming an array of responsibilities for provision of direct and indirect care, symptom and comfort management, synthesis of medical information, and maintenance of hope in the face of patient discouragement.⁵ The assumption of these responsibilities almost always begins immediately on learning of their loved one's new cancer diagnosis. With just a few words, "your loved one has cancer," caregivers rapidly learn that life as they knew it is changed forever. Future tomorrows, mornings, afternoons, holidays, nightfalls, and summers will be colored differently from that moment on.

Caregiver distress is ...