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Patient and caregiver characteristics related to completion of advance directives in terminally ill patients

Published online by Cambridge University Press:  30 May 2016

Grace W.K. Ho ,
Lauren Skaggs ,
Gayane Yenokyan ,
Anela Kellogg ,
Julie A. Johnson ,
Mei Ching Lee ,
Katherine Heinze ,
Mark T. Hughes ,
Daniel P. Sulmasy  and
Joan Kub
...Show all authors
Grace W.K. Ho*
Affiliation:
Johns Hopkins University School of Nursing, Baltimore, Maryland
Lauren Skaggs
Affiliation:
Johns Hopkins University School of Nursing, Baltimore, Maryland
Gayane Yenokyan
Affiliation:
Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
Anela Kellogg
Affiliation:
Johns Hopkins University School of Nursing, Baltimore, Maryland
Julie A. Johnson
Affiliation:
Center for Research Informatics, The University of Chicago, Chicago, Illinois
Mei Ching Lee
Affiliation:
University of Maryland School of Nursing, Baltimore, Maryland
Katherine Heinze
Affiliation:
Johns Hopkins University School of Nursing, Baltimore, Maryland
Mark T. Hughes
Affiliation:
Johns Hopkins University School of Medicine and Berman Institute of Bioethics, Baltimore, Maryland
Daniel P. Sulmasy
Affiliation:
Department of Medicine, the Divinity School, and the MacLean Center for Clinical Medical Ethics, The University of Chicago, Chicago, Illinois
Joan Kub
Affiliation:
Johns Hopkins University School of Nursing, Baltimore, Maryland
Peter B. Terry
Affiliation:
Johns Hopkins Hospital Department of Medicine, Baltimore, Maryland
Alan B. Astrow
Affiliation:
Maimonides Cancer Center, Brooklyn, New York
Jing Zheng
Affiliation:
Sun Yat-sen University School of Nursing, Guangdong, China
Lisa Soleymani Lehmann
Affiliation:
Brigham and Women's Hospital Department of Medicine and Harvard Medical School, Boston, Massachusetts
Marie T. Nolan
Affiliation:
Johns Hopkins University School of Nursing, Baltimore, Maryland
*
Address correspondence and reprint requests to: Grace W.K. Ho, The Hong Kong Polytechnic University School of Nursing, Hung Hom, Kowloon, HKSAR. E-mail: grace.wk.ho@polyu.edu.hk.
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Abstract

Objective:

There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney.

Method:

A convenience sample of 206 caregiver–patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion.

Results:

Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place.

Significance of results:

Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill.

Keywords

Advance directivesAdvance care planningCaregiverTerminally ill patients
Type
Original Articles
Information
Palliative & Supportive Care , Volume 15 , Issue 1 , February 2017 , pp. 12 - 19
Copyright
Copyright © Cambridge University Press 2016 

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References

REFERENCES

American Joint Committee on Cancer (2002). Cancer staging handbook, 6th ed. New York: Springer.Google Scholar
Astrow, A.B., Sood, J.R., Nolan, M.T., et al. (2008). Decision-making in patients with advanced cancer compared with amyotrophic lateral sclerosis. Journal of Medical Ethics, 34(9), 664–668.Google Scholar
Bravo, G., Dubois, M.F. & Paquet, M. (2003). Advance directives for health care and research: Prevalence and correlates. Alzheimer Disease and Associated Disorders, 17(4), 215–222.Google Scholar
del Aguila, M.A., Longstreth, W.T., McGuire, V., et al. (2003). Prognosis in amyotrophic lateral sclerosis. Neurology, 60(5), 813–819.Google Scholar
Detering, K.M., Hancock, A.D., Reade, M.C., et al. (2010). The impact of advance care planning on end-of-life care in elderly patients: Randomised controlled trial. BMJ, 340, c1345.Google Scholar
de Vita, V.T., Hellman, S. & Rosenberg, S.A., eds. (2001). Cancer: Principles and practice of oncology, 6th ed. Philadelphia: Lippincott.Google Scholar
Emanuel, L.L., Barry, M.J., Stoeckle, J.D., et al. (1991). Advance directives for medical care: A case for greater use. The New England Journal of Medicine, 324(13), 889–895.Google Scholar
Garrido, M.M. & Prigerson, H.G. (2014). The end-of-life experience: Modifiable predictors of caregivers' bereavement adjustment. Cancer, 120(6), 918–925.Google Scholar
Garrido, M.M., Balboni, T.A., Maciejewski, P.K., et al. (2014). Quality of life and cost of care at the end of life: The role of advance directives. Journal of Pain and Symptom Management, 49(5), 828–835. doi: 10.1016/j.jpainsymman.2014.09.015. Epub ahead of print December 11.Google Scholar
Halpern, N.A., Pastores, S.M., Chou, J.F., et al. (2011). Advance directives in an oncologic intensive care unit: A contemporary analysis of their frequency, type, and impact. Journal of Palliative Medicine, 14(4), 483–489.Google Scholar
Hirschman, K.B., Abbott, K.M., Hanlon, A.L., et al. (2012). What factors are associated with having an advance directive among older adults who are new to long term care services? Journal of the American Medical Directors Association, 13(1), e7–e11.Google Scholar
Holley, J.L., Hines, S.C., Glover, J.J., et al. (1999). Failure of advance care planning to elicit patients' preferences for withdrawal from dialysis. American Journal of Kidney Diseases, 33(4), 688–693.Google Scholar
Institute of Medicine (2014). Dying in America: Improving quality and honoring individual preferences near the end of life. Available from http://www.iom.edu/Reports/2014/Dying-In-America-Improving-Quality-and-Honoring-Individual-Preferences-Near-the-End-of-Life.aspx.Google Scholar
Johnson, K.S., Kuchibhatla, M. & Tulsky, J.A. (2008). What explains racial differences in the use of advance directives and attitudes toward hospice care? Journal of the American Geriatrics Society, 56(10), 1953–1958.Google Scholar
Kumar, A., Aronow, WS., Alexa, M., et al. (2010). Prevalence of use of advance directives, health care proxy, legal guardian, and living will in 512 patients hospitalized in a cardiac care unit/intensive care unit in 2 community hospitals. Archives of Medical Science, 6(2), 188–191.Google Scholar
Kwak, J. & Haley, W.E. (2005). Current research findings on end-of-life decision making among racially or ethnically diverse groups. The Gerontologist, 45(5), 634–641.Google Scholar
MacIver, J., Rao, V., Delgado, D.H., et al. (2008). Choices: A study of preferences for end-of-life treatments in patients with advanced heart failure. The Journal of Heart and Lung Transplantation, 27(9), 1002–1007.Google Scholar
Morhaim, D.K. & Pollack, K.M. (2013). End-of-life care issues: A personal, economic, public policy, and public health crisis. American Journal of Public Health, 103(6), e8–e10.Google Scholar
Parker, S.M., Clayton, J.M., Hancock, K., et al. (2007). A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/caregiver preferences for the content, style, and timing of information. Journal of Pain and Symptom Management, 34(1), 81–93.Google Scholar
Pfeiffer, E. (1975). A short portable mental status questionnaire for the assessment of organic brain deficit in elderly patients. Journal of the American Geriatrics Society, 23, 433–441.Google Scholar
Picard, R.R. & Cook, R.D. (1984). Cross-validation of regression models. Journal of the American Statistical Association, 79(387), 575–583.Google Scholar
Rabow, M.W., Hauser, J.M. & Adams, J. (2004). Supporting family caregivers at the end of life: “They don't know what they don't know.” The Journal of American Medical Association, 291(4), 483–491.Google Scholar
Rao, J.K., Anderson, L.A., Lin, F.C., et al. (2014). Completion of advance directives among U.S. consumers. American Journal of Preventive Medicine, 46(1), 65–70.Google Scholar
Rosnick, C.B. & Reynolds, S.L. (2003). Thinking ahead: Factors associated with executing advance directives. Journal of Aging and Health, 15(2), 409–429.Google Scholar
StataCorp (2013). Stata statistical software: Release 13. College Station, TX: StataCorp LP.Google Scholar
Sulmasy, D.P., Hughes, M.T., Thompson, R.E., et al. (2007). How would terminally ill patients have others make decisions for them in the event of decisional incapacity? A longitudinal study. Journal of the American Geriatrics Society, 55, 1981–1988.Google Scholar
Tajouri, T.H., Ottenberg, A.L., Hayes, D.L., et al. (2012). The use of advance directives among patients with implantable cardioverter defibrillators. Pacing and Clinical Electrophysiology, 35(5), 567–573.Google Scholar
Teno, J.M., Gruneir, A., Schwartz, Z., et al. (2007). Association between advance directives and quality of end-of-life care: A national study. Journal of the American Geriatrics Society, 55(2), 189–194.CrossRefGoogle ScholarPubMed
Tierney, W.M., Dexter, P.R., Gramelspacher, G.P., et al. (2001). The effect of discussions about advance directives on patients' satisfaction with primary care. Journal of General Internal Medicine, 16(1), 32–40.Google Scholar
Triplett, P., Black, B.S., Phillips, H., et al. (2008). Content of advance directives for individuals with advanced dementia. Journal of Aging and Health, 20(5), 583–596.Google Scholar
Wilkinson, A., Wegner, N. & Shugarman, L.R. (2007). Literature review on advance directives. Prepared for the Office of the Assistant Secretary for Planning and Evaluation & Office of Disability, Aging and Long-Term Care Policy, U.S. Department of Health and Human Services. Available from https://aspe.hhs.gov/pdf-report/literature-review-advance-directives.Google Scholar
Zaide, G.B., Pekmezaris, R., Nouryan, C.N., et al. (2013). Ethnicity, race, and advance directives in an inpatient palliative care consultation service. Palliative & Supportive Care, 11(1), 5–11.Google Scholar