Academic journal article Annual Review of Gerontology & Geriatrics

Advance Care Planning and End-of-Life Decision Making

Academic journal article Annual Review of Gerontology & Geriatrics

Advance Care Planning and End-of-Life Decision Making

Article excerpt

ABSTRACT

Making critical treatment decisions when faced with life-threatening illness is often a very difficult, emotionally charged experience for individuals, families, and health care providers across various settings of care. Clinicians, researchers, and policy makers have made numerous efforts to promote individual self-determination and to improve communication and quality of care at the end-of-life (EOL), especially in the aftermath of the enactment of the Patient Self-Determination Act of 1990. Past research has provided important information documenting the complex interplay of various patient, family, and health care provider and system factors affecting how EOL decisions are made. This chapter reviews the current literature on advance care planning and decision making at the EOL. Specifically, this chapter describes the context in which older adults experience their illnesses and make important treatment decisions, and reviews what is known about health-related decision-making processes among older adults, the role of family members in the decision-making process, and how health care providers and care settings exert influence on these decisions. This chapter also reviews promising decision-support interventions developed to assist EOL decision making, gaps in current knowledge about EOL decision making, and implications for practice and future research.

INTRODUCTION

Of all of the challenges faced during the aging process, contending with failing health and ultimately death are among the most difficult to face. People vary in terms of how much they have considered end-of-life (EOL) issues and preferences before they are seriously ill; how much they have informally communicated their preferences with their families and health care professionals; and how much, if any, they have formalized expression of their preferences through advance directives. Family members, health care professionals, and acute- and long-term care settings also vary considerably in their understanding of the preferences of older adults and how well prepared they are to consider the varied options available when confronting the persons life-threatening illness.

A key theme in planning, communication, and decision making about EOL is that EOL issues can and should be addressed throughout the various phases of aging and disability and throughout the continuum of care. Indeed, the dying process can take from days to several months, or even years, because of varying trajectories and progression of different illnesses (Field & Cassel, 1997). This EOL period is marked with variability and changes in illness characteristics and needs for care, and requires a wide range of types of decisions to be made. These issues range from whether to transfer patients between nursing homes and hospitals to whether to initiate or withdraw life-sustaining treatments (LSTs) such as feeding tubes and ventilators. Making health care decisions in an ideal situation involves a straightforward process that takes place between a patient and a doctor based on the principle of informed consent. This principle assumes an ongoing process of obtaining consent from an informed, competent patient for all care provided and delivered over time, and with an understanding that treatments can be withdrawn at any time (Csikai & Chaitin, 2006). However, actual decision-making processes are much more complex and are influenced not only by clinical needs and preferences of the patient and family, but also by characteristics of health care providers and care settings (Mezey, Dubler, Mitty & Brody, 2002). Moreover, all too often, EOL care decisions occur without sufficient discussion and planning among patients, families, and providers. This circumstance could be improved through programs that educate and assist older adults, families, and health care providers on ways to plan for, communicate about, and implement appropriate care decisions at the EOL. …

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