Academic journal article Generations

Quality of Life at the End of Life: The Public Health Perspective

Academic journal article Generations

Quality of Life at the End of Life: The Public Health Perspective

Article excerpt

For the community and the individual.

The promotion of quality of life for dying individuals and their survivors is integral to the achievement of the Healthy People 2010 goal of increasing the quality and years of healthy life. With death from chronic terminal illness common, individuals and families frequently experience the negative consequences of terminal decline for long periods of time, and our healthcare system often does not adequately address these consequences. In this article we discuss ongoing efforts and programs to promote higher quality of life for dying individuals and their families/significant others, and we propose an expanded public health paradigm that recognizes the birth-to-death need for public health surveillance, education, and intervention.

The major achievements in the U.S. Public Health system from 1900-1999 highlight the importance of activities that prevent illness and disability and premature mortality and promote health (Morbidity and Mortality Weekly Report, 1999). These activities have resulted in improved quality of life and longer life expectancies and thus can be said to have contributed to human flourishing, which is at the core the goal of medicine and public health. But what about the specific challenges to quality of life in the last years of life? Because Americans are dying at older ages and avoiding premature deaths from infectious diseases and other conditions, they are now dying from chronic terminal illnesses, which frequently are characterized by a long and uncertain path toward death. This path is often fraught with difficulties for dying individuals and their families, ranging from physical and emotional distress to financial ruin. It is imperative that healthcare providers, communities, state and local public health departments, and other government entities promote high-quality end-of-life care so that the negative consequences of living with and dying from chronic terminal illness can be prevented. From a public health perspective, monitoring the quality of end-of-life care in communities by looking at care and outcomes and promoting improvement of this care can result in higher quality of life for dying individuals and in more years of healthy life for community populations.

THE POPULATION IMPERATIVE AND CONSEQUENCES

While death is of course a universal experience, death is more likely to occur among people in older age groups, with chronic disease and frailty the likely cause of death. In 2000, three-quarters or all deaths in the United States were of people 65 years of age and older, and one-third of these deaths were from (chronic) heart disease (National Center for Health Statistics, 2003). Nearly a quarter of nonrraumatic deaths in 2001 occurred in nursing homes. Hospitals (and their emergency rooms) were the site of death for 49.5 percent among this group, homes in the community (including residential care and assisted living) for 2;.2 percent, and other locations were the site of death for 3.9 percent of decedents older than 65 (Brown University Center for Gerontology and Health Care Research, 2004). Connor (1999) estimates that 66 percent of all deaths are from conditions with prior periods of medical treatments or dependency.

There is no one definition of a good death, hut high levels of patient symptom distress and caregiver burden have been identified by consumers as characteristics of "bad dying" (Steinhaaser et al., 2000). Thus, the high prevalence of physical symptoms associated with chronic terminal illness and the increased severity of many symptoms as death nears result in management of physical symptoms being of foremost concern in end-of-life care. In fact, higher assessments of quality of life have been shown to be associated with fewer symptoms or with a lesser severity of symptoms (Portenoy et al., 1994). However, research has also shown quality of life for dying people and the needs of their significant others to be aligned with what patients, families, and providers deem important; quality of life encompasses more than the health-related domains and also is related to emotional, social, and spiritual consequences of terminal illness, as well as the survivor's experience of the illness (Steinhauser et al. …

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