|
Sign In to gain access to subscriptions and/or personal tools.
|
Who's caring for whom? Differing perspectives between seriously ill patients and their family caregivers
Joshua M. Hauser, MD
Chih-Hung Chang, PhD
Buehler Center on Aging, Feinberg School of Medicine, Northwestern University, Chicago, Illinois
Hillel Alpert, MS
Vital Science and Health, Newton, Massachusetts
DeWitt Baldwin, MD
Accreditation Council for Graduate Medical Education, Chicago, Illinois
Ezekiel J. Emanuel, MD, PhD
Department of Bioethics, National Institutes of Health, Bethesda, Maryland
Linda Emanuel, MD, PhD
Buehler Center of Aging, Feinberg School of Medicine, Northwestern University, Chicago, Illinois
Although clinicians and researchers often rely on family members' reports of a wide range of dying patients' symptoms and care preferences, available data indicate divergences between the two. We used a national sample to analyze patient-caregiver pairs to explore areas of concordance and nonconcordance about physical symptoms, communication with physicians, caregiving needs, andfuturefears. We also assessed whether identifiable patient or caregiver characteristics were associated with nonconcordance. Our data were from a national, random sample of 988 terminally ill patients, of whom 893 had caregivers who were also interviewed. Frequencies and types of nonconcordance were computed for patient-caregiverpairs. Bivariate associations between patient and caregiver reports on each item were tested Logistic and conditional logistic regression analyses assessed multiple predictors of nonconcordance for each item. Primary diagnoses included cancer (51.1 percent), heart disease (17. 7 percent), chronic obstructive pulmonary disease (10. 7percent), and other diseases (20.5 percent). The proportion of concordant reports among pairs ofpatients and caregivers ranged from 53 percent to 66 percent. Among pairs showing nonconcordant responses, caregivers reported higher levels of pain and disability than patients, lower caregiving needs, and different fears about thefuture. Few demographic or clinical predictors were associated with nonconcordance. Concordance between patients' and their caregivers' responses ranged widely, and there were important areas of nonconcordant responses. When responses differed, patients were more likely to express concern about domains that might impose on caregivers, while caregivers were more likely to express concern about patients' physical suffering. Consistent sociodemographic or clinical predictors of nonconcordant responses were not found These data suggest important ways that patient and caregiver reports of the samg e experience vary.
Key Words: care preferences • communication • concordance • nonconcordance
References
- l. Field M, Cassel C (eds): Approaching Death Washington, DC: Institute of Medicine, 1997.
- 2. Wellisch D: Family issues and palliative care. In Chochinov HM, Breitbart W (eds): Handbook ofPsychiatry in Palliative Medicine. Oxford: Oxford University Press, 2000.
- 3. Alpers A, Lo B: Avoiding family feuds: Responding to surrogate demands for lifesustaining interventions. JLaw Med Ethics. 1999; 27: 74-80.
- 4. Joan M, Teno J, Clarridge BR, et al.: Family perspectives on end-of-life care at the last place of care. JAMA. 2004; 291: 88-93.[Abstract/Free Full Text]
- 5. Saunders C: Care of the Dying. London: Macmillan, 1959.
- 6. Marvel MK, Epstein RM, Flowers K, et al.: Soliciting the patient's agenda: Have we improved? JAMA. 1999; 281: 283-287.[Abstract/Free Full Text]
- 7. Pearson C, Stubbs M: Parting Company: Understanding the Loss of a Loved One-The Caregive' Journey. Seattle: Seal Press, 1999.
- 8. Byock 1: Dying Well: Peace and Possibilities at the End-of-Life. New York: Berkeley Publishing Group, 1997.
- 9. Groopman J: The Measure of Our Days: New Beginnings at Life's End. New York: Viking Books, 1997.
- 10. Singer PA, Martin DK, Kelner M: Quality End-of-Life Care: Patients' Perspectives. JAMA 1999; 281: 163-168.[Abstract/Free Full Text]
- 11. Emanuel EJ, Emanuel LL: The promise of a good death. Lancet. 1998; 351(Suppl 2): S1121-S1129.[CrossRef]
- 12. Emanuel LL, Alpert HR, Emanuel EJ: Concise screening questions for clinical assessment of terminal care: The needs near the end-of-life screening tool. JPalliat Med 2001; 4(4): 465-474.
- 13. Emanuel EJ, Fairclough DL, Slutsman J, et al.: Assistance from family members, friends, paid caregivers, and volunteers in the care of terminally ill patients. N Engl J Med 1999; 341(13): 956-963.[Abstract/Free Full Text]
- 14. Schulz R, Beach SR: Caregiving as a risk factor for mortality. JAMA. 1999; 282: 2215-2219.[Abstract/Free Full Text]
- 15. Epstein AM, Hall JA, Tognetti J, et al.: Using proxies to evaluate the quality of life: can they provide valid information about patients' health status and satisfaction with medical care? Med Care. 1989; 27(Suppl): S91-S98.[Medline]
[Order article via Infotrieve]
- 16. Marbella AM, Desbiens NA, Mueller-Rizner N, et al.: Surrogates' agreement with patients' resuscitation preferences: effect of age, relationship, and SUPPORT intervention. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Crit Care. 1998; 13(3): 140-145.[CrossRef][Medline]
[Order article via Infotrieve]
- 17. SecklerAB, Meier DE, Mulvihill M, et al.: Substituted judgment: How accurate are proxy predictions? Ann Intern Med 1991; 115(2): 92-98.[Abstract/Free Full Text]
- 18. Kurtz ME, Kurtz JC, Given CC, et al.: Concordance of cancer patient and caregiver symptom reports. Cancer Pract. 1996; 4(4): 185-190.[Medline]
[Order article via Infotrieve]
- 19. Higginson I, Priest P, McCarthy M: Are bereaved family members a valid proxy for a patient's assessment of dying? Soc Sci Med 1994; 38: 553-557.[CrossRef][Medline]
[Order article via Infotrieve]
- 20. Trial M, Nelson JD, Van JN, et al.: A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression and their attitudes toward treatment options. JNeurol Sci. 2003; 209: 79-85.[CrossRef][Medline]
[Order article via Infotrieve]
- 21. Porter LS, Keefe FJ, McBride CM, et al.: Perceptions of patients self-efficacy for managing pain and lung cancer symptoms: Correspondence between patients and family caregivers. Pain. 2002; 98: 169-178.[CrossRef][Medline]
[Order article via Infotrieve]
- 22. Lobchuk MM, Kristjanson L: Perceptions of symptom distress in lung cancer patients: II. Behavioral assessment by primary family caregivers. JPain Sympt Mgmt. 1997; 14: 147-156.
- 23. Fried TR, Bradley EH, Towle VR: Valuing the outcomes of treatment: Do patients and caregivers agree? Arch Intern Med. 2003; 163: 2073-2078.[Abstract/Free Full Text]
American Journal of Hospice and Palliative Medicine®, Vol. 23, No. 2,
105-112 (2006)
DOI: 10.1177/104990910602300207
 CiteULike  Complore  Connotea  Del.icio.us  Digg  Reddit  Technorati  Twitter What's this?
|
|
