The Impact of Serious Illness on Patients' Families

Kenneth E. Covinsky, MD, MPH; Lee Goldman, MD, MPH; E. Francis Cook, ScD; Robert Oye, MD; Norman Desbiens, MD; Douglas Reding, MD; William Fulkerson, MD; Alfred F. Connors Jr, MD; Joanne Lynn, MD, MA; Russell S. Phillips, MD; Rose Baker, MSHyg; Rosemarie Hakim, PhD; William A. Knaus, MD; Barbara Kreling; Detra K. Robinson, MA; Douglas Wagner, PhD; Jennie D. Dulac, BSN, RN; Joan M. Teno, MD, MS; Beth Virnig, PhD; Marilyn Bergner, PhD; Albert Wu, MD, MPH; Yutaka Yasui, PhD; Roger Davis, ScD; Lachlan Forrow, MD; Mary Beth Hamel, MD, MPH; Linda Lesky, MD; Lynn Peterson, MD; Joel Tsevat, MD, MPH; Claudia Coulton, PhD; Neal V. Dawson, MD; Mary Kennard, MSN; C. Seth Landefeld, MD; Mary Joan Roach, PhD; Theodore Speroff, PhD; Stuart Youngner, MD; Carlos Alzola, MS; Robert M. Califf, MD; William J. Fulkerson Jr, MD; Frank E. Harrell Jr, PhD; Peter Kussin, MD; Lawrence H. Muhlbaier, PhD; Maria Winchell, MS; Steven K. Broste, MS; Norman A. Desbiens, MD; Marilyn Follen, RN, MSN; Michael J. Kryda, MD; Douglas J. Reding, MD; Humberto J. Vidaillet Jr, MD; Paul E. Bellamy, MD; H. Gill Cryer III, MD; James W. Davis, MD; Jonathan R. Hiatt, MD; HongHu Liu, PhD; Robert K. Oye, MD; Neil S. Wenger, MD; Peter M. Layde, MD, MSc; Hal R. Arkes, PhD; Donald J. Murphy, MD
JAMA. 1994;272(23):1839-1844. doi:10.1001/jama.1994.03520230049037.
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Objective.  —To examine the impact of illness on the families of seriously ill adults and to determine the correlates of adverse economic impact.

Design.  —Data were collected during the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), a prospective cohort study of outcomes, preferences, and decision making in seriously ill hospitalized adults and their families.

Setting.  —Five tertiary care hospitals in the United States.

Participants.  —The 2661 seriously ill patients in nine diagnostic categories who survived their index hospitalization and were discharged home were eligible for this analysis. Surrogate and/or patient interviews about the impact of illness on the family were obtained for 2129 (80%) of these patients (mean age, 62 years; 43% women; 6-month survival, 75%).

Outcome Measures.  —Surrogates and patients were surveyed to determine the frequency of adverse caregiving and economic burdens. Multivariable analyses were performed to determine correlates of loss of family savings.

Results.  —One third (34%) of patients required considerable caregiving assistance from a family member. In 20% of cases, a family member had to quit work or make another major life change to provide care for the patient. Loss of most or all of the family savings was reported by 31% of families, whereas 29% reported loss of the major source of income. Patient factors independently associated with loss of the family's savings on multivariable analysis included poor functional status (odds ratio [OR], 1.40; 95% confidence interval [CI], 1.10 to 1.78 for patients needing assistance with three or more activities of daily living), lower family income (OR, 1.74; 95% CI, 1.37 to 2.21 for those with annual incomes below $25 000), and young age (OR, 2.85; 95% CI, 2.13 to 3.82 for those younger than 45 years compared with those 65 years or older).

Conclusions.  —Many families of seriously ill patients experience severe caregiving and financial burdens. Families of younger, poorer, and more functionally dependent patients are most likely to report loss of most or all of the family's savings.(JAMA. 1994;272:1839-1844)


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