Hostname: page-component-76fb5796d-dfsvx Total loading time: 0 Render date: 2024-04-25T17:35:52.843Z Has data issue: false hasContentIssue false
  • English
  • Français

Patients' priorities for treatment decision making during periods of incapacity: quantitative survey

Published online by Cambridge University Press:  02 October 2014

Annette Rid ,
Robert Wesley ,
Mark Pavlick ,
Sharon Maynard ,
Katalin Roth  and
David Wendler
Annette Rid*
Affiliation:
Department of Social Science, Health & Medicine, King's College London, London, United Kingdom
Robert Wesley
Affiliation:
Biostatistics & Clinical Epidemiology Service, The Clinical Center, National Institutes of Health, Bethesda, Maryland
Mark Pavlick
Affiliation:
St. Elizabeth's Hospital, Washington, District of Columbia
Sharon Maynard
Affiliation:
Nephrology Division, University of South Florida Morsani College of Medicine, Lehigh Valley Health Network, Allentown, Pennsylvania
Katalin Roth
Affiliation:
Department of Medicine, George Washington University Medical Faculty Associates, Washington, District of Columbia
David Wendler
Affiliation:
Department of Bioethics, The Clinical Center, National Institutes of Health, Bethesda, Maryland
*
Address correspondence and reprint requests to: Annette Rid, Department of Social Science, Health & Medicine, King's College London, East Wing Building, Strand, London WC2R 2LS, United Kingdom. E-mail: annette.rid@kcl.ac.uk
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Clinical practice aims to respect patient autonomy by basing treatment decisions for incapacitated patients on their own preferences. Yet many patients do not complete an advance directive, and those who do frequently just designate a family member to make decisions for them. This finding raises the concern that clinical practice may be based on a mistaken understanding of patient priorities. The present study aimed to collect systematic data on how patients prioritize the goals of treatment decision making.

Method:

We employed a self-administered, quantitative survey of patients in a tertiary care center.

Results:

Some 80% or more of the 1169 respondents (response rate = 59.8%) ranked six of eight listed goals for treatment decision making as important. When asked which goal was most important, 38.8% identified obtaining desired or avoiding unwanted treatments, 20.0% identified minimizing stress or financial burden on their family, and 14.6% identified having their family help to make treatment decisions. No single goal was designated as most important by 25.0% of participants.

Significance of Results:

Patients endorsed three primary goals with respect to decision making during periods of incapacity: being treated consistent with their own preferences; minimizing the burden on their family; and involving their family in the decision-making process. However, no single goal was prioritized by a clear majority of patients. These findings suggest that advance care planning should not be limited to documenting patients' treatment preferences. Clinicians should also discuss and document patients' priorities for how decisions are to be made. Moreover, future research should evaluate ways to modify current practice to promote all three of patients primary goals for treatment decision making.

Keywords

Advance care planningAdvance directiveSurrogate decision makingIncapacitated patientsPatient priorities
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 5 , October 2015 , pp. 1165 - 1183
Copyright
Copyright © Cambridge University Press 2014 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Akabayashi, A., Slingsby, B.T. & Kai, I. (2003). Perspectives on advance directives in Japanese society: A population-based questionnaire survey. BMC Medical Ethics, 4, E5.CrossRefGoogle ScholarPubMed
Beauchamp, T.L. & Childress, J.F. (2013). Principles of biomedical ethics. New York: Oxford University Press.Google Scholar
Berger, J.T., DeRenzo, E.G. & Schwartz, J. (2008). Surrogate decision making: Reconciling ethical theory and clinical practice. Annals of Internal Medicine, 149, 48–53.CrossRefGoogle ScholarPubMed
Bomba, P.A., Kemp, M. & Black, J.S. (2012). POLST: An improvement over traditional advance directives. Cleveland Clinic Journal of Medicine, 79, 457–464.CrossRefGoogle ScholarPubMed
Buchanan, A.E. & Brock, D.W. (1989). Deciding for others: The ethics of surrogate decision making. New York: Cambridge University Press.Google Scholar
Burt, R.A. (2005). The end of autonomy. Hastings Center Report, 35(6), s9–s13.CrossRefGoogle Scholar
Case, S.M., Towle, V.R. & Fried, T.R. (2013). Considering the balance: Development of a scale to assess patient views on trade-offs in competing health outcomes. Journal of the American Geriatrics Society, 61, 1331–1336.CrossRefGoogle ScholarPubMed
Connors, A.F., Dawson, N.V., Desbiens, N.A., et al. (1995). A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators. The Journal of the American Medical Association, 274, 1591–1598.Google Scholar
Creswell, J.W. (2013). Research design: Qualitative, quantitative, and mixed-methods approaches. Thousand Oaks, CA: Sage.Google Scholar
Danis, M., Mutran, E., Garrett, J.M., et al. (1996). A prospective study of the impact of patient preferences on life-sustaining treatment and hospital cost. Critical Care Medicine, 24, 1811–1817.CrossRefGoogle ScholarPubMed
Daveson, B.A., Bausewein, C., Murtagh, F.E., et al. (2013). To be involved or not to be involved: A survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe. Palliative Medicine, 27, 418–427.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.CrossRefGoogle ScholarPubMed
Ditto, P.H., Druley, J.A., Moore, K.A., et al. (1996). Fates worse than death: The role of valued life activities in health-state evaluations. Health Psychology, 15, 332–343.CrossRefGoogle ScholarPubMed
Ditto, P., Hawkins, N. & Pizarro, D. (2005). Imagining the end of life: On the psychology of advance medical decision making. Motivation and Emotion, 29, 481–502.CrossRefGoogle Scholar
Doukas, D.J. & Gorenflo, D.W. (1993). Analyzing the values history: An evaluation of patient medical values and advance directives. The Journal of Clinical Ethics, 4, 41–45.CrossRefGoogle ScholarPubMed
Eliott, J. & Olver, I. (2007). Autonomy and the family as (in)appropriate surrogates for DNR decisions: A qualitative analysis of dying cancer patients' talk. The Journal of Clinical Ethics, 18, 206–218.CrossRefGoogle ScholarPubMed
Emanuel, L. (2008). Advance care planning for decisional incapacity: Keep it simple—find your patient's goal threshold in under five minutes. Medscape Journal of Medicine, 10, 240.Google Scholar
Fagerlin, A. & Schneider, C.E. (2004). Enough: The failure of the living will. Hastings Center Report, 34, 30–42.CrossRefGoogle ScholarPubMed
Fried, T.R. & Bradley, E.H. (2003). What matters to seriously ill older persons making end-of-life treatment decisions? A qualitative study. Journal of Palliative Medicine, 6, 237–244.CrossRefGoogle ScholarPubMed
Fried, T.R., Bradley, E.H., Towle, V.R., et al. (2002). Understanding the treatment preferences of seriously ill patients. The New England Journal of Medicine, 346, 1061–1066.CrossRefGoogle ScholarPubMed
Fried, T.R., Tinetti, M.E., Iannone, L., et al. (2011). Health outcome prioritization as a tool for decision making among older persons with multiple chronic conditions. Archives of Internal Medicine, 171, 1854–1856.CrossRefGoogle ScholarPubMed
Garrett, J.M., Harris, R.P., Norburn, J.K., et al. (1993). Life-sustaining treatments during terminal illness: Who wants what? Journal of General Internal Medicine, 8,361–368.CrossRefGoogle Scholar
Halpern, S.D. (2012). Shaping end-of-life care: Behavioral economics and advance directives. Seminars in Respiratory and Critical Care Medicine, 33, 393–400.Google ScholarPubMed
Halpern, S.D., Loewenstein, G., Volpp, K.G., et al. (2013). Default options in advance directives influence how patients set goals for end-of-life care. Health Affairs (Project Hope), 32, 408–417.CrossRefGoogle ScholarPubMed
Hammes, B.J. & Rooney, B.L. (1998). Death and end-of-life planning in one midwestern community. Archives of Internal Medicine, 158, 383–390.CrossRefGoogle ScholarPubMed
Hastie, T., Tibshirani, R. & Friedman, J. (2009). The elements of statistical learning. New York: Springer.CrossRefGoogle Scholar
Hawkins, N.A., Ditto, P.H., Danks, J.H., et al. (2005). Micromanaging death: Process preferences, values, and goals in end-of-life medical decision making. The Gerontologist, 45, 107–117.CrossRefGoogle ScholarPubMed
Heyland, D.K., Dodek, P., Rocker, G., et al. (2006). What matters most in end-of-life care: Perceptions of seriously ill patients and their family members. CMAJ, 174, 627–633.CrossRefGoogle ScholarPubMed
High, D.M. (1988). All in the family: Extended autonomy and expectations in surrogate health care decision-making. The Gerontologist, 28(Suppl.), 46–51.CrossRefGoogle ScholarPubMed
Hosmer, D. & Lemeshow, S. (2013). Applied logistic regression. New York: John Wiley & Sons.Google Scholar
Kaldjian, L.C., Curtis, A.E., Shinkunas, L.A., et al. (2008). Goals of care toward the end of life: A structured literature review. The American Journal of Hospice & Palliative Care, 25, 501–511.CrossRefGoogle ScholarPubMed
Kelly, B., Rid, A. & Wendler, D. (2012). Systematic review: Individuals' goals for surrogate decision-making. Journal of the American Geriatrics Society, 60, 884–895.CrossRefGoogle ScholarPubMed
Kim, S.Y. (2014). Improving medical decisions for incapacitated persons: Does focusing on “accurate predictions” lead to an inaccurate picture? The Journal of Medicine and Philosophy, 39, 187–195.Google Scholar
Kirchhoff, K.T., Hammes, B.J., Kehl, K.A., et al. (2010). Effect of a disease-specific planning intervention on surrogate understanding of patient goals for future medical treatment. Journal of the American Geriatrics Society, 58, 1233–1240.CrossRefGoogle ScholarPubMed
Lynn, J. (1991). Why I don't have a living will. Law, Medicine & Health Care, 19, 101–104.Google Scholar
McMahan, R.D., Knight, S.J., Fried, T.R., et al. (2012). Advance care planning beyond advance directives: Perspectives from patients and surrogates. Journal of Pain and Symptom Management, 46(3), 355–365.Google Scholar
McMahan, R.D., Knight, S.J., Fried, T.R., et al. (2013). Advance care planning beyond advance directives: Perspectives from patients and surrogates. Journal of Pain and Symptom Management, 46, 355–365.CrossRefGoogle ScholarPubMed
Mead, G.E., O'Keeffe, S.T., Jack, C.I., et al. (1995). What factors influence patient preferences regarding cardiopulmonary resuscitation? Journal of the Royal College of Physicians of London, 29, 295–298.Google Scholar
Miyata, H., Shiraishi, H. & Kai, I. (2006). Survey of the general public's attitudes toward advance directives in Japan: How to respect patients' preferences. BMC Medical Ethics, 7, E11.CrossRefGoogle ScholarPubMed
Molloy, D.W., Guyatt, G.H., Russo, R., et al. (2000). Systematic implementation of an advance directive program in nursing homes: A randomized controlled trial. Journal of the American Geriatrics Society, 283, 1437–1444.Google ScholarPubMed
Moore, C.D., Sparr, J., Sherman, S., et al. (2003). Surrogate decision making: Judgment standard preferences of older adults. Social Work in Health Care, 37, 1–16.CrossRefGoogle ScholarPubMed
Patrick, D.L., Engelberg, R.A. & Curtis, J.R. (2001). Evaluating the quality of dying and death. Journal of Pain and Symptom Management, 22, 717–726.CrossRefGoogle ScholarPubMed
Pearlman, R.A., Cain, K.C., Starks, H., et al. (2000). Preferences for life-sustaining treatments in advance care planning and surrogate decision making. Journal of Palliative Medicine, 3, 37–48.CrossRefGoogle ScholarPubMed
Perkins, H.S. (2007). Controlling death: The false promise of advance directives. Annals of Internal Medicine, 147, 51–57.CrossRefGoogle ScholarPubMed
Phillips, R.S., Wenger, N.S., Teno, J., et al. (1996). Choices of seriously ill patients about cardiopulmonary resuscitation: Correlates and outcomes. Study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). The SUPPORT Principal Investigators. The American Journal of Medicine, 100, 128–137.CrossRefGoogle Scholar
Rid, A. & Wendler, D. (2010). Can we improve medical treatment decision-making for incapacitated patients? Hastings Center Report, 40, 36–45.Google Scholar
Rid, A. & Wendler, D. (2014 a). Use of a patient preference predictor to help make medical treatment decisions for incapacitated patients. The Journal of Medicine and Philosophy, 39, 104–129.CrossRefGoogle ScholarPubMed
Rid, A. & Wendler, D. (2014 b). Treatment decision making for incapacitated patients: Is development and use of a patient preference predictor feasible? The Journal of Medicine and Philosophy, 39, 130–152.Google Scholar
Rosenfeld, K.E., Wenger, N.S. & Kagawa-Singer, M. (2000). End-of-life decision making: A qualitative study of elderly individuals. Journal of General Internal Medicine, 15, 620–625.CrossRefGoogle ScholarPubMed
Schenker, Y., White, D.B. & Arnold, R.M. (2014). What should be the goal of advance care planning? JAMA Internal Medicine, 174, 1093–1094.CrossRefGoogle ScholarPubMed
Scheunemann, L.P., Arnold, R.M. & White, D.B. (2012). The facilitated values history: Helping surrogates make authentic decisions for incapacitated patients with advanced illness. American Journal of Respiratory and Critical Care Medicine, 186, 480–486.CrossRefGoogle ScholarPubMed
Sehgal, A., Galbraith, A., Chesney, M., et al. (1992). How strictly do dialysis patients want their advance directives followed? Journal of the American Geriatrics Society, 267, 59–63.Google ScholarPubMed
Silveira, M.J., Kim, S.Y. & Langa, K.M. (2010). Advance directives and outcomes of surrogate decision making before death. The New England Journal of Medicine, 362, 1211–1218.CrossRefGoogle ScholarPubMed
Singer, P.A., Martin, D.K., Lavery, J.V., et al. (1998). Reconceptualizing advance care planning from the patient's perspective. Archives of Internal Medicine, 158, 879–884.CrossRefGoogle ScholarPubMed
Singer, P.A., Martin, D.K. & Kelner, M. (1999). Quality end-of-life care: Patients' perspectives. Journal of the American Geriatrics Society, 281, 163–168.Google ScholarPubMed
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., et al. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. Journal of the American Geriatrics Society, 284, 2476–2482.Google ScholarPubMed
Sudore, R.L. & Fried, T.R. (2010). Redefining the “planning” in advance care planning: Preparing for end-of-life decision making. Annals of Internal Medicine, 153, 256–261.CrossRefGoogle ScholarPubMed
Sudore, R.L., Schillinger, D., Knight, S.J., et al. (2010). Uncertainty about advance care planning treatment preferences among diverse older adults. Journal of Health Communication, 15(Suppl. 2), 159–171.CrossRefGoogle ScholarPubMed
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.CrossRefGoogle ScholarPubMed
Teno, J.M., Licks, S., Lynn, J., et al. (1997). Do advance directives provide instructions that direct care? SUPPORT Investigators. Study to understand prognoses and preferences for outcomes and risks of treatment. Journal of the American Geriatrics Society, 45, 508–512.Google Scholar
Torke, A.M., Alexander, G.C. & Lantos, J. (2008). Substituted judgment: The limitations of autonomy in surrogate decision making. Journal of General Internal Medicine, 23, 1514–1517.CrossRefGoogle ScholarPubMed
White, D.B. & Arnold, R.M. (2011). The evolution of advance directives. Journal of the American Geriatrics Society, 306, 1485–1486.Google ScholarPubMed
Winzelberg, G.S., Hanson, L.C. & Tulsky, J.A. (2005). Beyond autonomy: Diversifying end-of-life decision-making approaches to serve patients and families. Journal of the American Geriatrics Society, 53, 1046–1050.Google Scholar
Wendler, D. & Rid, A. (2011). Systematic review: The effect on surrogates of making treatment decisions for others. Annals of Internal Medicine, 154, 336–346.CrossRefGoogle ScholarPubMed