You are seeing this message because your Web browser does not support basic Web standards. Find out more about why this message is appearing and what you can do to make your experience on this site better.


ABOUT JAMA
Advanced Search

Welcome   | My Account | E-mail Alerts | Access Rights | Sign In


  Vol. 272 No. 23, December 21, 1994 TABLE OF CONTENTS
  JAMA
  •  Online Features
  Original Contributions
 This Article
 •References
 •Full text PDF
 •Send to a friend
 • Save in My Folder
 •Save to citation manager
 •Permissions
 Citing Articles
 •Citation map
 •Citing articles on HighWire
 •Contact me when this article is cited
 Related Content
 •Similar articles in JAMA
 Social Bookmarking
  Add to CiteULike Add to Connotea Add to Del.icio.us Add to Digg Add to Reddit Add to Technorati Add to Twitter What's this?

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; SUPPORT Investigators; Rose Baker, MSHyg; Rosemarie Hakim, PhD; William A. Knaus, MD; Barbara Kreling; Detra K. Robinson, MA; Douglas Wagner, PhD; Jennie D. Dulac, BSN, RN; Joanne Lynn, MD, MA; Joan M. Teno, MD, MS; Beth Virnig, PhD; Marilyn Bergner, PhD; Albert Wu, MD, MPH; Yutaka Yasui, PhD; E. Francis Cook, ScD; Roger Davis, ScD; Lachlan Forrow, MD; Lee Goldman, MD, MPH; Mary Beth Hamel, MD, MPH; Linda Lesky, MD; Lynn Peterson, MD; Russell S. Phillips, MD; Joel Tsevat, MD, MPH; Alfred F. Connors, Jr, MD; 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.


Abstract

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)



Author Affiliations

ICU Research Unit, Washington University, Washington, DC; Dartmouth Medical School, Hanover, NH; The Johns Hopkins University, Baltimore, MD; Beth Israel Hospital, Boston, Mass; Case Western Reserve University at MetroHealth Medical Center, Cleveland, Ohio; Duke University Medical Center, Durham, NC; Marshfield (Wis) Medical Research Foundation; University of California at Los Angeles; Medical College of Wisconsin, Milwaukee; Ohio University, Athens; Presbyterian-St Luke's Medical Center, Denver, Colo

From the Division of General Medicine and Primary Care (Drs Covinsky and Phillips) and the Division of Clinical Epidemiology (Drs Covinsky, Goldman, Cook, and Phillips), Department of Medicine, Beth Israel Hospital, Boston, Mass; the UCLA School of Medicine, UCLA Medical Center, Los Angeles, Calif (Dr Oye); the Marshfield Medical Research Foundation/Marshfield Clinic, Marshfield, Wis (Drs Desbiens and Reding); the Duke University Medical Center, Durham, NC (Dr Fulkerson); Case Western Reserve University at MetroHealth Medical Center, Cleveland, Ohio (Dr Connors); the Dartmouth-Hitchcock Medical Center, Hanover, NH (Dr Lynn); and the SUPPORT Coordinating Center, George Washington University, Washington, DC. Dr Covinsky is currently affiliated with the Division of General Internal Medicine and Health Care Research, Cleveland Veterans Administration Hospital and University Hospitals of Cleveland, Case Western Reserve University School of Medicine, Cleveland, Ohio. A list of SUPPORT Investigators appears at the end of this article.


Footnotes

Presented, in part, at the annual session of the Society of General Internal Medicine, Washington, DC, April 29, 1993.

The opinions and findings contained herein are those of the authors and do not necessarily represent the views of the Robert Wood Johnson Foundation or their Board of Trustees.

Reprint requests to Division of General Internal Medicine and Primary Care, Beth Israel Hospital, Boston, MA 02215 (Dr Phillips).



Add to CiteULike CiteULike   Add to Connotea Connotea   Add to Del.icio.us Del.icio.us   Add to Digg Digg   Add to Reddit Reddit   Add to Technorati Technorati   Add to Twitter Twitter     What's this?

THIS ARTICLE HAS BEEN CITED BY OTHER ARTICLES

Patient-Specific, Time-Varying Predictors of Post-ICU Informal Caregiver Burden: The Caregiver Outcomes After ICU Discharge Project
Van Pelt et al.
Chest 2010;137:88-94.
ABSTRACT | FULL TEXT  

Beyond Polarization, Public Preferences Suggest Policy Opportunities to Address Aging, Dying, and Family Caregiving
Byock et al.
AM J HOSP PALLIAT CARE 2009;26:200-208.
ABSTRACT  

Defining distinct caregiver subpopulations by intensity of end-of-life care provided
Abernethy et al.
Palliat Med 2009;23:66-79.
ABSTRACT  

Impact of perception of socioeconomic burden on advocacy for patient autonomy in end-of-life decision making: a study of societal attitudes
Kwon et al.
Palliat Med 2009;23:87-94.
ABSTRACT  

Depression in Family Caregivers of Cancer Patients: The Feeling of Burden As a Predictor of Depression
Rhee et al.
JCO 2008;26:5890-5895.
ABSTRACT | FULL TEXT  

Dementia of the Alzheimer Type
Jalbert et al.
Epidemiol Rev 2008;30:15-34.
ABSTRACT | FULL TEXT  

Practical Guidance for Evidence-Based ICU Family Conferences
Curtis and White
Chest 2008;134:835-843.
ABSTRACT | FULL TEXT  

Meeting Physicians' Responsibilities in Providing End-of-Life Care
Shanawani et al.
Chest 2008;133:775-786.
ABSTRACT | FULL TEXT  

Review article: Financial stress and strain associated with terminal cancer a review of the evidence
Hanratty et al.
Palliat Med 2007;21:595-607.
ABSTRACT  

Dying of cancer in Italy: impact on family and caregiver. The Italian Survey of Dying of Cancer
Rossi et al.
J. Epidemiol. Community Health 2007;61:547-554.
ABSTRACT | FULL TEXT  

Factors associated with depressive distress among Taiwanese family caregivers of cancer patients at the end of life
Siew Tzuh Tang et al.
Palliat Med 2007;21:249-257.
ABSTRACT  

A Communication Strategy and Brochure for Relatives of Patients Dying in the ICU
Lautrette et al.
NEJM 2007;356:469-478.
ABSTRACT | FULL TEXT  

Epidemiology and Outcomes of Acute Lung Injury
Rubenfeld and Herridge
Chest 2007;131:554-562.
ABSTRACT | FULL TEXT  

Informal Caregiver Burden among Survivors of Prolonged Mechanical Ventilation
Van Pelt et al.
Am. J. Respir. Crit. Care Med. 2007;175:167-173.
ABSTRACT | FULL TEXT  

Clinical and Ethical Issues in Palliative Care
Block
Focus 2007;5:393-397.
ABSTRACT | FULL TEXT  

Palliative care for frail older adults: "there are things I can't do anymore that I wish I could . . . ".
Boockvar and Meier
JAMA 2006;296:2245-2253.
ABSTRACT | FULL TEXT  

Long-term Neurocognitive Function After Critical Illness.
Hopkins and Jackson
Chest 2006;130:869-878.
ABSTRACT | FULL TEXT  

Why Do Patients Choose Chemotherapy Near the End of Life? A Review of the Perspective of Those Facing Death From Cancer
Matsuyama et al.
JCO 2006;24:3490-3496.
ABSTRACT | FULL TEXT  

Psychological Distress Experienced by Families of Cancer Patients: Preliminary Findings from Psychiatric Consultation of a Cancer Center Hospital
Akechi et al.
Jpn J Clin Oncol 2006;36:329-332.
ABSTRACT | FULL TEXT  

Lower utilization of primary, specialty and preventive care services by individuals residing with persons in poor health.
Chaix et al.
Eur J Public Health 2006;16:209-216.
ABSTRACT | FULL TEXT  

Medication Utilization in an Urban Homebound Population
Kronish et al.
J Gerontol A Biol Sci Med Sci 2006;61:411-415.
ABSTRACT | FULL TEXT  

Looking Back From Death: The Value of Retrospective Studies of End-of-Life Care
Earle and Ayanian
JCO 2006;24:838-840.
FULL TEXT  

Relief of Suffering Is the Business of Every Discipline
Emanuel
Arch Intern Med 2006;166:149-150.
FULL TEXT  

Preferences for Mechanical Ventilation Among Survivors of Prolonged Mechanical Ventilation and Tracheostomy
Guentner et al.
Am J Crit Care 2006;15:65-77.
ABSTRACT | FULL TEXT  

Psychiatric Disorders and Mental Health Service Use Among Caregivers of Advanced Cancer Patients
Vanderwerker et al.
JCO 2005;23:6899-6907.
ABSTRACT | FULL TEXT  

Missed Opportunities during Family Conferences about End-of-Life Care in the Intensive Care Unit
Curtis et al.
Am. J. Respir. Crit. Care Med. 2005;171:844-849.
ABSTRACT | FULL TEXT  

Application of Community-Based Participatory Research Methods to a Study of Complementary Medicine Interventions at End of Life
Williams et al.
Complementary Health Practice Review 2005;10:91-104.
ABSTRACT  

Burden of Illness in Cancer Survivors: Findings From a Population-Based National Sample
Yabroff et al.
JNCI J Natl Cancer Inst 2004;96:1322-1330.
ABSTRACT | FULL TEXT  

Palliative Care
Morrison and Meier
NEJM 2004;350:2582-2590.
FULL TEXT  

Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers
Grunfeld et al.
CMAJ 2004;170:1795-1801.
ABSTRACT | FULL TEXT  

The quality of medical care at the end-of-life in the USA: existing barriers and examples of process and outcome measures
Yabroff et al.
Palliat Med 2004;18:202-216.
ABSTRACT  

Prevalence and Outcomes of Caregiving After Prolonged ("=" BORDER="0"> 48 Hours) Mechanical Ventilation in the ICU
Im et al.
Chest 2004;125:597-606.
ABSTRACT | FULL TEXT  

Supporting Family Caregivers at the End of Life: "They Don't Know What They Don't Know"
Rabow et al.
JAMA 2004;291:483-491.
ABSTRACT | FULL TEXT  

Life Support Withdrawal: Communication and Conflict
Norton et al.
Am J Crit Care 2003;12:548-555.
ABSTRACT | FULL TEXT  

Measuring and Improving the Quality of Dying and Death
Patrick et al.
ANN INTERN MED 2003;139:410-415.
ABSTRACT | FULL TEXT  

Risk Assessment for Inpatient Survival in the Long-term Acute Care Setting After Prolonged Critical Illness
Dematte D'Amico et al.
Chest 2003;124:1039-1045.
ABSTRACT | FULL TEXT  

Nature of Conflict in the Care of Pediatric Intensive Care Patients With Prolonged Stay
Studdert et al.
Pediatrics 2003;112:553-558.
ABSTRACT | FULL TEXT  

Caregivers of Long-term Ventilator Patients: Physical and Psychological Outcomes
Douglas and Daly
Chest 2003;123:1073-1081.
ABSTRACT | FULL TEXT  

Impact of a Prolonged Surgical Critical Illness on Patients' Families
Swoboda and Lipsett
Am J Crit Care 2002;11:459-466.
ABSTRACT | FULL TEXT  

Understanding Costs and Cost-Effectiveness in Critical Care . Report from the Second American Thoracic Society Workshop on Outcomes Research
Am. J. Respir. Crit. Care Med. 2002;165:540-550.
ABSTRACT | FULL TEXT  

Costs of Occupational COPD and Asthma
Leigh et al.
Chest 2002;121:264-272.
ABSTRACT | FULL TEXT  

Physician-Assisted Suicide
Snyder et al.
ANN INTERN MED 2001;135:209-216.
ABSTRACT | FULL TEXT  

Estimating the Cost of Informal Caregiving for Elderly Patients With Cancer
Hayman et al.
JCO 2001;19:3219-3225.
ABSTRACT | FULL TEXT  

Psychological Considerations, Growth, and Transcendence at the End of Life: The Art of the Possible
Block
JAMA 2001;285:2898-2905.
ABSTRACT | FULL TEXT  

Caregiver Strain Associated With Tracheostomy in Chronic Respiratory Failure
Rossi Ferrario et al.
Chest 2001;119:1498-1502.
ABSTRACT | FULL TEXT  

High Short-term Mortality in Hospitalized Patients With Advanced Dementia: Lack of Benefit of Tube Feeding
Meier et al.
Arch Intern Med 2001;161:594-599.
ABSTRACT | FULL TEXT  

Attitudes and Desires Related to Euthanasia and Physician-Assisted Suicide Among Terminally Ill Patients and Their Caregivers
Emanuel et al.
JAMA 2000;284:2460-2468.
ABSTRACT | FULL TEXT  

Gaps in End-of-Life Care
Emanuel et al.
Arch Fam Med 2000;9:1176-1180.
ABSTRACT | FULL TEXT  

The Quest for the Therapeutic Organization
Bulger
JAMA 2000;283:2431-2433.
FULL TEXT  

Understanding Economic and Other Burdens of Terminal Illness: The Experience of Patients and Their Caregivers
Emanuel et al.
ANN INTERN MED 2000;132:451-459.
ABSTRACT | FULL TEXT  

Attitudes and Practices Concerning the End of Life: A Comparison Between Physicians From the United States and From the Netherlands
Willems et al.
Arch Intern Med 2000;160:63-68.
ABSTRACT | FULL TEXT  

Human Values in the Care of the Surgical Patient
Peterson
Arch Surg 2000;135:46-50.
ABSTRACT | FULL TEXT  

Private and Public Choices in End-of-Life Care
Sloan and Taylor
JAMA 1999;282:2078-2078.
FULL TEXT  

Assistance from Family Members, Friends, Paid Care Givers, and Volunteers in the Care of Terminally Ill Patients
Emanuel et al.
NEJM 1999;341:956-963.
ABSTRACT | FULL TEXT  

Home Sweet Hospital: The Nature and Limits of Private Responsibilities for Home Health Care
Levine
J Aging Health 1999;11:341-359.
ABSTRACT  

Outcomes after Long-Term Acute Care . An Analysis of 133 Mechanically Ventilated Patients
CARSON et al.
Am. J. Respir. Crit. Care Med. 1999;159:1568-1573.
ABSTRACT | FULL TEXT  

Lessons learned and not learned from the SUPPORT project
Teno
Palliat Med 1999;13:91-93.
 

Public Information and Private Search: Evaluating the Patient Self-Determination Act
Bradley and Rizzo
Journal of Health Politics, Policy and Law 1999;24:239-273.
ABSTRACT  

Attitudes of Patients with Amyotrophic Lateral Sclerosis and Their Care Givers toward Assisted Suicide
Ganzini et al.
NEJM 1998;339:967-973.
ABSTRACT | FULL TEXT  

Comparing Generalist and Specialty Care: Discrepancies, Deficiencies, and Excesses
Donohoe
Arch Intern Med 1998;158:1596-1608.
ABSTRACT | FULL TEXT  

What Are the Potential Cost Savings from Legalizing Physician-Assisted Suicide?
Emanuel and Battin
NEJM 1998;339:167-172.
FULL TEXT  

Outcomes of Acute Exacerbation of Severe Congestive Heart Failure: Quality of Life, Resource Use, and Survival
Jaagosild et al.
Arch Intern Med 1998;158:1081-1089.
ABSTRACT | FULL TEXT  

Health Values of Hospitalized Patients 80 Years or Older
Tsevat et al.
JAMA 1998;279:371-375.
ABSTRACT | FULL TEXT  

Fair Allocation of Intensive Care Unit Resources
Am. J. Respir. Crit. Care Med. 1997;156:1282-1301.
FULL TEXT  

Aggressive Medical Care at the End of Life: Does Capitated Reimbursement Encourage the Right Care for the Wrong Reason?
Curtis and Rubenfeld
JAMA 1997;278:1025-1026.
ABSTRACT  

End-of-Life Care
Sulmasy and Lynn
JAMA 1997;277:1854-1855.
 

Is Economic Hardship on the Families of the Seriously Ill Associated With Patient and Surrogate Care Preferences?
Covinsky et al.
Arch Intern Med 1996;156:1737-1741.
ABSTRACT  

Cost Savings at the End of Life: What Do the Data Show?
Emanuel
JAMA 1996;275:1907-1914.
ABSTRACT  

The Value of Service Dogs for People With Severe Ambulatory Disabilities: A Randomized Controlled Trial
Allen and Blascovich
JAMA 1996;275:1001-1006.
ABSTRACT  

A Controlled Trial to Improve Care for Seriously III Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT)
SUPPORT Principal Investigators et al.
JAMA 1995;274:1591-1598.
ABSTRACT  

Medicine--Molecular, Monetary, or More Than Both?
Eisenberg
JAMA 1995;274:331-334.
ABSTRACT  

Serious Illness Often Bankrupts Families
JWatch Psychiatry 1995;1995:14-14.
FULL TEXT  

SERIOUS ILLNESS OFTEN BANKRUPTS FAMILIES
JWatch General 1994;1994:2-2.
FULL TEXT  





HOME | CURRENT ISSUE | PAST ISSUES | TOPIC COLLECTIONS | CME | SUBMIT | SUBSCRIBE | HELP
CONDITIONS OF USE | PRIVACY POLICY | CONTACT US | SITE MAP
 
© 1994 American Medical Association. All Rights Reserved.