A funny thing happened when I wrote my last post for White Coats, Paper Gowns: I became inspired by some of the very advice that I was criticizing. After reading hundreds of tips designed to help patients become empowered, I took charge of my own health care.
I’d been seeing a doctor for tendinitis in my left foot. A month later, the pain and stiffness felt worse, and I’d started limping. On top of that, my podiatrist said he had nothing else to offer me after the drug that he’d prescribed made me ill.
I found another physician and sought a second opinion. The new doctor strapped a brace around my ankle and sent me to physical therapy. That quickly soothed my pain and eased my walking.
What Patients Want
Taking charge helped me heal, but I wince when health-care agencies tell patients to do so in order to receive better care (http://www.sharp.com/grossmont/take-charge-health-care.cfm http://healthfinder.gov/HealthTopics/Category/doctor-visits/talking-with-the-doctor/take-charge-of-your-health-care). They seem to be missing a key point of patient-centered care: the idea that patients should receive care that meets their needs and respects their preferences.
Most patients want a say in treatment decisions. They also want more useful information than their doctors provide. Even so, many people prefer not to take charge of their care.
For instance, roughly 16 percent of cancer patients show little desire to seek information about their illness. Typically, these patients rely on their doctors to tell them what they need to know; they trust medical experts to decide on their care. Far from passive, these patients believe in carrying out their doctors’ recommendations.
Patients with little desire to seek cancer information fall into two groups. The first group includes those who want minimize the effects of cancer on their daily lives. They would rather take care of their families or work at their jobs than read about radiation treatment. They want to stay in control of their lives, not let everything fall apart while they focus on their cancer.
Patients in the second group try to avoid information that might worry them. They prefer to keep their spirits up and their hope alive.
Both groups cope with a scary illness as they see fit. Their ways differ from my usual coping style and, like mine, might not suit every situation. Still, patient-centered care involves respecting patients and helping them reach their treatment goals, even when patients act differently than health-care professionals deem wise. When health agencies tell patients to “do” health care in a particular way or risk the consequences, it reminds me of the authoritarian ways of old, except that “The doctor knows best” has given way to “Take charge of your health care.”
Alas, much of the guidance on how to get good health care recognizes only one kind of patient. True patient-centered care respects patients as individuals. It comes in at least as many forms as they do.
Photo copyright yasemin/123rf.com stock photo
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References:
U.S. Department of Health and Human Services (undated). Take charge of your health care. Healthfinder.gov, http://healthfinder.gov/HealthTopics/Category/doctor-visits/talking-with-the-doctor/take-charge-of-your-health-care. Accessed on 5/9/14.
National Academy of Sciences (2001 March). Crossing the Quality Chasm: A New Health System for the 21st Century. Report brief. Institute of Medicine, http://www.iom.edu/Reports/2001/Crossing-the-Quality-Chasm-A-New-Health-System-for-the-21st-Century.aspx. Accessed on 8/18/2014.
Chewning B, Bylund CL, Shah B, et al. (2012 Jan). Patient preferences for shared decisions: A systematic review. Patient Education and Counseling, 86(1):9-18. Epub 2011 Apr 7. http://dx.doi.org/10.1016/j.pec.2011.02.004.
Levinson W, Kao A, Kuby A, et al. (2005 Jun). Not all patients want to participate in decision making. A national study of public preferences. Journal of General Internal Medicine, 20(6):531-535. http://dx.doi.org/10.1111/j.1525-1497.2005.04101.x.
Bensing J, Rimondini M, Visser A (2013 Mar). What patients want. Patient Education and Counseling, 90(3):287-290. http://dx.doi.org/10.1016/j.pec.2013.01.005.
Nagler RH, Gray SW, Romantan A, et al. (2010 Dec). Differences in information seeking among breast, prostate, and colorectal cancer patients: Results from a population-based survey. Patient Education and Counseling, 81S1:S54-S62. Epub 2010 Oct 8. http://dx.doi.org/10.1016/j.pec.2010.09.010.
Eheman C, Berkowitz Z, Lee JW, et al. (2009 Jul-Aug). Information-seeking styles among cancer patients before and after treatment by demographics and use of information sources. Journal of Health Communication, 14(5):487-502. http://dx.doi.org/10.1080/10810730903032945.
Germeni E, Schulz PJ (2014 May 10). Information seeking and avoidance throughout the cancer patient journey: two sides of the same coin? A synthesis of qualitative studies. Psycho-Oncology. Epub ahead of print. http://dx.doi.org/10.1002/pon.3575.
Lambert SD, Loiselle CG, Macdonald ME (2009 Jan-Feb). An in-depth exploration of information-seeking behavior among individuals with cancer. Part 2: Understanding patterns of information disinterest and avoidance. Cancer Nursing, 32(1):26-36. http://dx.doi.org/10.1097/01.NCC.0000343373.01646.91.
Anderson RM, Funnell MM (2010 June). Patient empowerment: Myths and misconceptions. Patient Education and Counseling, 79(3):277-282.Epub 2009 Aug 13. http://dx.doi.org/10.1016/j.pec.2009.07.025.
Brom L, Hopmans W, Pasman HRW, et al. (2014 Apr 3). Congruence between patients’ preferred and perceived participation in medical decision-making: a review of the literature. BMC Medical Informatics and Decision Making, 14:25. http://dx.doi.org/10.1186/1472-6947-14-25.
Thorne S, Oliffe JL, Stajduhar KI (2013 Mar). Communicating shared decision-making: Cancer patient perspectives. Patient Education and Counseling, 90(3):291-296. Epub 2012 Mar 30. http://dx.doi.org/10.1016/j.pec.2012.02.018
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