Catálogo de publicaciones - libros

Changes in the demographics and healthcare needs of the U.S. population have forced a shift in the types of healthcare services that people want and need. Hospitals are faced with the challenge of meeting the needs of an increasingly older and frailer population. An American born in 2000 can expect to live to nearly 77 years old; a 65 years old can expect to live another 18 years (Federal interagency forum on aging-related statistics, 2002). In addition, technological advancements have allowed individuals to live longer with chronic, advanced illness. For example, the elderly often experience chronic, progressive diseases that they will live with for three to six years before death (Fried, 2000). These changes have placed pressures on the healthcare system to design practices and programs that best meet the needs of the population. Table 1.1. highlights some of the demographic and care needs that hospitals must address.

In America and other wealthy countries, the average life expectancy has increased and the burden of acute illness has decreased dramatically during the twentieth century (Covinsky et al ., 1994). Contemporary Americans overwhelmingly die from chronic, progressive diseases (Glaser and Strauss, 1968). In their last years, chronic disease(s) and increasing disability challenge the resources of most Americans. Changes in the family structure (including smaller size), increased likelihood that children live at some distance from their parents, and the fact that most families require that two people work in order to be financially viable, mean that family members are less likely than in prior generations to be able to provide the increased levels of care required by aging relatives (Lynn and Adamson, 2003). Data from the Study to Understand Prognosis and Preferences for Outcomes and Risk of Treatments (SUPPORT) study indicate that when family members do provide this care, it requires significant sacrifices: almost one third of families spend down to poverty in order to care for their dying loved ones (Lunney et al ., 2003). Despite the evident need for assistance, family members received inadequate information about existing community services to which they were entitled. Managing the current patterns of old age and death requires changes in the way health care is conceived, delivered and financed. Here we primarily focus on the role of Palliative Care in the changes in the conception and delivery of health services.

A crisis is looming in the American health care system. The population of the United States is ageing. Over the next quarter century, the number of people older than 85 years will double. The massive generation of baby boomers is moving rapidly toward old age, and the reality that 65 million Americans will grow old and face the end of life together over the next thirty years is cause for national alarm. At the heart of the crisis is not only, the fear that the cost of caring for these Americans may bankrupt an already fragile health care system, but also the fear that the kind of care provided at the end of life for all patients, regardless of age, is wholly inadequate and ineffective in meeting end of life health care needs. Over the past twenty-five years a little known program – hospice – has revolutionized at least one part of the health care system – end of life care. Hospice has become the health care system’s safety net for the last phase of life. Unfortunately, it is also the most under-utilized benefit in the American health care system.

Rehabilitation too often remains clinically marginalized in the care of cancer patients. The perception that only patients capable of full community and vocational pursuits with unrestricted life spans stand to benefit from rehabilitation is inaccurate. Although physical medicine and rehabilitation, or physiatry, was initially dedicated to transitioning individuals with anatomically devastating injuries back to productive lives, the field has broadened considerably. This increased scope is a response to medical advances that have radically altered the prognoses of many formerly fatal diseases. Integration of rehabilitation services in the care of patients with far-advanced pulmonary and cardiac disease is standard. Comparable services are rarely offered to cancer patients, even in the early stages of disease. The purpose of rehabilitation as outlined in this chapter is to improve the quality of life irrespective of etiology or anticipated survival.

The past two decades have seen both the emergence of AIDS as a new, lifethreatening illness and its conversion from a rapidly fatal to a manageable chronic disease. This pattern has been most marked in industrialized countries where the promise of HIV-specific therapies has been realized for many individuals living with HIV. However, even in the era of ’highly active antiretroviral therapy’ (HAART), AIDS remains an important cause of morbidity and mortality in many young adult populations, and attention to chronic disease and palliative care issues remains an essential aspect of clinical care and program planning.

Chronic Obstructive Pulmonary Disease (COPD) is a major public health problem in the United States and throughout the world with a global prevalence estimated at 9.3 per 1000 males and 7.3 per 1000 females (all ages). (Vital and Health Statistics, 1996; Murray and Lopez, 1997). COPD was ranked as the sixth most common cause of death worldwide in 1990, and the Global Burden of Disease Study predicted that it would become the third most common cause by 2020 (Lopez and Murray, 1998).

Congestive heart failure is a serious and ultimately fatal illness, and there is currently no cure except for cardiac transplantation. Congestive heart failure (CHF) is a leading cause of morbidity and mortality. It is associated with marked impairments in health related quality of life, emotional and physical wellbeing. It is a leading cause of admission to acute care hospitals and subsequent readmission. Despite the high prevalence and high physical and psychosocial burden patients with CHF are underserved by palliative care and hospice programs. In this chapter we will describe the pathophysiological processes that underlie the functional complications of congestive heart failure, describe the natural history of congestive heart failure, the modes of demise of patients with CHF, its major subcategories: diastolic and systolic dysfunction. We will make recommendations for appropriate timing of referral to palliative care and hospice and describe the potential benefits for the inclusion of palliative care teams in the provision of care to patients with CHF and their families.

Alzheimer’s Dementia (AD) is the most prevalent progressive neurodegenerative disease. It begins with minute memory impairment and ultimately leads to the loss of all mental and physical function. A person with AD lives an average of eight years from diagnosis and could live as many as 20 years (Odle, 2003 ). By the year 2000, there were about 4.5 million in the U.S. population with A.D, with one in 10 persons over the age of 65, and nearly half of those over 85 having AD By 2050, the number is projected to increase to 13.2 million (Hebert et al ., 2003). Since there is no cure for AD, “persons with AD need interventions that are directed to relief of suffering, pain control, and comfort, often associated with ’palliative’ rather than . . . curative measures.’ This chapter is intended to assist health care administrators, health care planners, and public policy professionals to make policy decisions that may improve quality of life for those afflicted with AD and that may minimize the burden of care on family and loved ones. The authors trace the illness through transition points and discuss advance care planning and palliative care-focusing on issues specific to patients with AD.

In 1993, Pediatric Palliative Care (PCC) was defined by the World Health Organization (WHO) as compassionate and all-inclusive care when curative treatment is no longer possible. Since then however, PCC has broadened into family-centered care aimed at enhancing quality of life and minimizing suffering of all children with life-threatening conditions, no matter what the outcome of the illness (Field and Behrman, 2003). As described by the American Academy of Pediatrics (AAP, 2000), the goal of PCC is to add life to the child’s years, not simply years to the child’s life.