Caregiving for Advanced Chronic Illness Patients

Published in: Techniques in Regional Anesthesia and Pain Management, v. 9, no. 3, July 2005, p. 122-132

Posted on RAND.org on January 01, 2005

by Anne Wilkinson, Joanne Lynn

Read More

Access further information on this document at www.elsevier.com

This article was published outside of RAND. The full text of the article can be found at the link above.

The transfer of care from the hospital to home settings has shifted responsibility for the day-to-day care of the long-term, medically complex patient to the family. While family members have always provided care to seriously ill relatives, the care that is expected of family members in today's health care environment is vastly more complex than it was just 10 years ago. The chronic illness trajectory denotes the fluctuating, variable course of illness phases over time as well as the actions taken by various participants to shape or control that course. The course of the patient's illness--the illness trajectory--shapes the caregiver's experience. Three different trajectories of advanced, eventually fatal, chronic illness represent differing patient and family caregiver needs: (1) the long stable period followed by a rather abrupt, defined terminal phase and exemplified by cancer; (2) a trajectory marked by a long course of decline with periodic crises alternating with periods of stability, and with a sudden death, exemplified by congestive heart failure and chronic obstructive pulmonary disease; and (3) a long, slow decline with steadily progressive disability before dying of complications of old age, stroke, or dementia. Patients and families want good pain and symptom management for their loved one; accurate, timely, and adequate information (communication); emotional support from and accessibility to providers; and continuity care across settings. The health care system could be doing more to support family caregivers.

This report is part of the RAND Corporation External publication series. Many RAND studies are published in peer-reviewed scholarly journals, as chapters in commercial books, or as documents published by other organizations.

Our mission to help improve policy and decisionmaking through research and analysis is enabled through our core values of quality and objectivity and our unwavering commitment to the highest level of integrity and ethical behavior. To help ensure our research and analysis are rigorous, objective, and nonpartisan, we subject our research publications to a robust and exacting quality-assurance process; avoid both the appearance and reality of financial and other conflicts of interest through staff training, project screening, and a policy of mandatory disclosure; and pursue transparency in our research engagements through our commitment to the open publication of our research findings and recommendations, disclosure of the source of funding of published research, and policies to ensure intellectual independence. For more information, visit www.rand.org/about/research-integrity.

The RAND Corporation is a nonprofit institution that helps improve policy and decisionmaking through research and analysis. RAND's publications do not necessarily reflect the opinions of its research clients and sponsors.