IDEAS home Printed from https://ideas.repec.org/a/eee/socmed/v71y2010i6p1094-1101.html
   My bibliography  Save this article

"I like to be an informed person but..." negotiating responsibility for treatment decisions in cancer care

Author

Listed:
  • Sinding, Christina
  • Hudak, Pamela
  • Wiernikowski, Jennifer
  • Aronson, Jane
  • Miller, Pat
  • Gould, Judy
  • Fitzpatrick-Lewis, Donna

Abstract

Social expectations surrounding sickness have undergone a transformation in Western welfare states. Emerging discourses about patients' roles and responsibilities do not however always map neatly onto patients' actions, experiences or desires. This paper emerges from a study in Ontario, Canada. Drawing on in-depth interviews with 5 women diagnosed with breast cancer we explore the activity and effort prompted for patients by the routine professional practice of outlining treatment options and encouraging patients to choose between them. We highlight research participants' complex responses to their responsibility for treatment decisions: their accepting, deflecting and reframing and their active negotiation of responsibility with professionals. The literature on treatment decision making typically characterizes people who resist taking an active role as overwhelmed, misinformed about the nature of treatment decisions, or more generally lacking capacity to participate. In this paper we suggest that patients' expressions of ambivalence about making treatment choices can be understood otherwise: as efforts to recast the identities and positions they and their physicians are assigned in the organization of cancer care. We also begin to map key features of this organization, particularly discourses of patient empowerment, and evidence-based medicine.

Suggested Citation

  • Sinding, Christina & Hudak, Pamela & Wiernikowski, Jennifer & Aronson, Jane & Miller, Pat & Gould, Judy & Fitzpatrick-Lewis, Donna, 2010. ""I like to be an informed person but..." negotiating responsibility for treatment decisions in cancer care," Social Science & Medicine, Elsevier, vol. 71(6), pages 1094-1101, September.
    • Handle: RePEc:eee:socmed:v:71:y:2010:i:6:p:1094-1101
    as

    Download full text from publisher

    File URL: http://www.sciencedirect.com/science/article/pii/S0277-9536(10)00471-5
    Download Restriction: Full text for ScienceDirect subscribers only
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Charles, Cathy & Gafni, Amiram & Whelan, Tim, 1997. "Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)," Social Science & Medicine, Elsevier, vol. 44(5), pages 681-692, March.
    2. Noerreslet, Mikkel & Jemec, Gregor B.E. & Traulsen, Janine M., 2009. "Involuntary autonomy: Patients' perceptions of physicians, conventional medicines and risks in the management of atopic dermatitis," Social Science & Medicine, Elsevier, vol. 69(9), pages 1409-1415, November.
    3. Entwistle, Vikki & Prior, Maria & Skea, Zoe C. & Francis, Jillian J., 2008. "Involvement in treatment decision-making: Its meaning to people with diabetes and implications for conceptualisation," Social Science & Medicine, Elsevier, vol. 66(2), pages 362-375, January.
    4. Mykhalovskiy, Eric & Weir, Lorna, 2004. "The problem of evidence-based medicine: directions for social science," Social Science & Medicine, Elsevier, vol. 59(5), pages 1059-1069, September.
    5. Ziebland, Sue, 2004. "The importance of being expert: the quest for cancer information on the Internet," Social Science & Medicine, Elsevier, vol. 59(9), pages 1783-1793, November.
    6. Lupton, Deborah, 1997. "Consumerism, reflexivity and the medical encounter," Social Science & Medicine, Elsevier, vol. 45(3), pages 373-381, August.
    7. Mendick, Nicola & Young, Bridget & Holcombe, Christopher & Salmon, Peter, 2010. "The ethics of responsibility and ownership in decision-making about treatment for breast cancer: Triangulation of consultation with patient and surgeon perspectives," Social Science & Medicine, Elsevier, vol. 70(12), pages 1904-1911, June.
    8. Lindbladh, Eva & Lyttkens, Carl Hampus & Hanson, Bertil S. & Östergren, P. -O., 1998. "Equity is out of fashion? An essay on autonomy and health policy in the individualized society," Social Science & Medicine, Elsevier, vol. 46(8), pages 1017-1025, April.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Brown, Patrick & de Graaf, Sabine & Hillen, Marij & Smets, Ellen & van Laarhoven, Hanneke, 2015. "The interweaving of pharmaceutical and medical expectations as dynamics of micro-pharmaceuticalisation: Advanced-stage cancer patients' hope in medicines alongside trust in professionals," Social Science & Medicine, Elsevier, vol. 131(C), pages 313-321.
    2. May, Carl, 2013. "Agency and implementation: Understanding the embedding of healthcare innovations in practice," Social Science & Medicine, Elsevier, vol. 78(C), pages 26-33.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Smith, Sian K. & Dixon, Ann & Trevena, Lyndal & Nutbeam, Don & McCaffery, Kirsten J., 2009. "Exploring patient involvement in healthcare decision making across different education and functional health literacy groups," Social Science & Medicine, Elsevier, vol. 69(12), pages 1805-1812, December.
    2. Stacey, Clare Louise & Henderson, Stuart & MacArthur, Kelly R. & Dohan, Daniel, 2009. "Demanding patient or demanding encounter?: A case study of a cancer clinic," Social Science & Medicine, Elsevier, vol. 69(5), pages 729-737, September.
    3. Diamond-Brown, Lauren, 2016. "The doctor-patient relationship as a toolkit for uncertain clinical decisions," Social Science & Medicine, Elsevier, vol. 159(C), pages 108-115.
    4. Greenfield, Geva & Pliskin, Joseph S. & Feder-Bubis, Paula & Wientroub, Shlomo & Davidovitch, Nadav, 2012. "Patient–physician relationships in second opinion encounters – The physicians’ perspective," Social Science & Medicine, Elsevier, vol. 75(7), pages 1202-1212.
    5. Shachar, Leeor, 2022. "“You become a slightly better doctor”: Doctors adopting integrated medical expertise through interactions with E-patients," Social Science & Medicine, Elsevier, vol. 305(C).
    6. Will, Catherine M. & Weiner, Kate, 2015. "The drugs don't sell: DIY heart health and the over-the-counter statin experience," Social Science & Medicine, Elsevier, vol. 131(C), pages 280-288.
    7. Diamond-Brown, Lauren, 2018. "“It can be challenging, it can be scary, it can be gratifying”: Obstetricians’ narratives of negotiating patient choice, clinical experience, and standards of care in decision-making," Social Science & Medicine, Elsevier, vol. 205(C), pages 48-54.
    8. Hyojung Tak & Gregory Ruhnke & Ya-Chen Shih, 2015. "The Association between Patient-Centered Attributes of Care and Patient Satisfaction," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 8(2), pages 187-197, April.
    9. Miller, Nancy & Weinstein, Marcie, 2007. "Participation and knowledge related to a nursing home admission decision among a working age population," Social Science & Medicine, Elsevier, vol. 64(2), pages 303-313, January.
    10. Timmermans, Stefan & Almeling, Rene, 2009. "Objectification, standardization, and commodification in health care: A conceptual readjustment," Social Science & Medicine, Elsevier, vol. 69(1), pages 21-27, July.
    11. Locock, Louise & Nettleton, Sarah & Kirkpatrick, Susan & Ryan, Sara & Ziebland, Sue, 2016. "‘I knew before I was told’: Breaches, cues and clues in the diagnostic assemblage," Social Science & Medicine, Elsevier, vol. 154(C), pages 85-92.
    12. Odette Wegwarth & Wolfgang Gaissmaier & Gerd Gigerenzer, 2011. "Deceiving Numbers," Medical Decision Making, , vol. 31(3), pages 386-394, May.
    13. Karnieli-Miller, Orit & Eisikovits, Zvi, 2009. "Physician as partner or salesman? Shared decision-making in real-time encounters," Social Science & Medicine, Elsevier, vol. 69(1), pages 1-8, July.
    14. Paul C. Schroy III & Karen Emmons & Ellen Peters & Julie T. Glick & Patricia A. Robinson & Maria A. Lydotes & Shamini Mylvanaman & Stephen Evans & Christine Chaisson & Michael Pignone & Marianne Prout, 2011. "The Impact of a Novel Computer-Based Decision Aid on Shared Decision Making for Colorectal Cancer Screening," Medical Decision Making, , vol. 31(1), pages 93-107, January.
    15. Mei-Chun Cheung & Derry Law & Joanne Yip & Jason Pui Yin Cheung, 2022. "Adolescents’ Experience during Brace Treatment for Scoliosis: A Qualitative Study," IJERPH, MDPI, vol. 19(17), pages 1-10, August.
    16. Margaret Gerteis & Rosemary Borck, "undated". "Shared Decision-Making in Practice: Lessons from Implementation Efforts," Mathematica Policy Research Reports f802e52b8442486594ecda927, Mathematica Policy Research.
    17. Mark Sculpher & Amiram Gafni, 2001. "Recognizing diversity in public preferences: The use of preference sub‐groups in cost‐effectiveness analysis," Health Economics, John Wiley & Sons, Ltd., vol. 10(4), pages 317-324, June.
    18. Lee, Yin-Yang & Lin, Julia L., 2010. "Do patient autonomy preferences matter? Linking patient-centered care to patient-physician relationships and health outcomes," Social Science & Medicine, Elsevier, vol. 71(10), pages 1811-1818, November.
    19. Coast, Joanna, 2018. "A history that goes hand in hand: Reflections on the development of health economics and the role played by Social Science & Medicine, 1967–2017," Social Science & Medicine, Elsevier, vol. 196(C), pages 227-232.
    20. Setti Rais Ali & Paul Dourgnon & Lise Rochaix, 2018. "Social Capital or Education: What Matters Most to Cut Time to Diagnosis?," Working Papers halshs-01703170, HAL.

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:eee:socmed:v:71:y:2010:i:6:p:1094-1101. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Catherine Liu (email available below). General contact details of provider: http://www.elsevier.com/wps/find/journaldescription.cws_home/315/description#description .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.