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Care as a mutual endeavour: Experiences of a multiple sclerosis patient and her healthcare professionals

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Abstract

In Dutch healthcare policy patients are seen as informed, autonomous experts and active decision makers with control over their illness and care. Healthcare professionals are expected to operate as providers of information. The purpose of this article is to argue that the consumerist approach of the patient–professional relationship is not a productive way to envision the patient–professional relationship. We argue that an interpretive/deliberative model is a more productive way to envision this relationship, especially in the care for people with a chronic illness. This is illustrated with a case study. It concerns a study of the experiences of a Multiple Sclerosis (MS) patient and healthcare professionals involved in her care. The presented stories show that the participants did not act in line with the roles and responsibilities embodied in the consumerism rhetoric in Dutch healthcare policy. Expectations of patients and healthcare professionals are better met when care is redefined as mutual endeavour in which the caring abilities of healthcare professionals and the vulnerability of chronically ill patients are taken into account.

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References

  • Abma T.A., Oeseburg B., Goldsteen M., Widdershoven G.A.M. and Verkerk M.A. (2005). Two Women with Multiple Sclerosis and Their Caregivers: Conflicting Normative Expectations. Nursing Ethics 12(5): 479–492

    Article  PubMed  Google Scholar 

  • Anderson J.M. (1996). Empowering Patients: Issues and Strategies. Social Science and Medicine 43(5): 697–705

    Article  CAS  PubMed  Google Scholar 

  • Badcott D. (2005). The Expert Patient: Valid Recognition or False Hope?. Medicine, Health Care and Philosophy 8(2): 173–178

    Article  Google Scholar 

  • Barry C.A., Bradley C.P., Britten N., Stevenson F.A. and Barber N. (2000). ‘Patients’ Unvoiced Agendas in General Practice Consultations: Qualitative Study. British Medical Journal 320(7244): 1246–1250

    Article  CAS  PubMed  Google Scholar 

  • Barry C.A., Stevenson F.A., Britten N., Barber N. and Bradley C.P. (2001). Giving Voice to the Lifeworld. Social Science and Medicine 53(4): 487–505

    Article  CAS  PubMed  Google Scholar 

  • Beauchamp T.L. and Childress J.F. (1994). Principles of Biomedical Ethics. Oxford University Press, New York, Oxford

    Google Scholar 

  • Bissell P., May C.R. and Noyce P.R. (2004). From Compliance to Concordance: Barriers to Accomplishing a Re-framed Model of Healthcare Interactions. Social Science and Medicine 58(4): 851–862

    Article  PubMed  Google Scholar 

  • Britten N., Stevenson F.A., Barry C.A., Barber N. and Bradley C.P. (2000a). Misunderstandings in Prescribing Decisions in General Practice: Qualitative Study. British Medical Journal 320(7233): 484–488

    Article  CAS  Google Scholar 

  • Britten N., Stevenson F.A., Barry C.A., Barber N. and Bradley C.P. (2000b). Misunderstandings in Prescribing Decisions in General Practice: Qualitative Study. British Medical Journal 321(7269): 1160–1161

    Article  Google Scholar 

  • Bury M. (2004). ‘Researching Patient–Professional Interactions’ Journal of Health Services Research and Policy 9(Suppl 1): 48–54

    Article  PubMed  Google Scholar 

  • Charles C., Gafni A. and Whelan T. (1997). Shared Decision-Making in the Medical Encounter: What Does It Mean? (or it Takes at Least Two to Tango). Social Science and Medicine 44(5): 681–692

    Article  CAS  PubMed  Google Scholar 

  • Charles C., Gafni A. and Whelan T. (2000). How to Improve Communication Between Doctors and Patients. Learning More About the Decision Making Context Is Important. British Medical Journal 320(7244): 1220–1221

    Article  CAS  PubMed  Google Scholar 

  • Cox K., Stevenson F., Britten N. and Dundar Y. (2003). A Systematic Review of Communication Between Patients and Healthcare Professionals About Medicine Taking and Prescribing. GKT Concordance Unit, King’s College, London

    Google Scholar 

  • Department of Health. (2001). The Expert Patient: A New Approach to Chronic Disease Management in the 21st Century. Stationery Office, London

    Google Scholar 

  • Dutch Ministry of Health, Welfare and Sport. (2001). Met zorg kiezen (in Dutch). Den Haag: Dutch Ministry of Health, Welfare and Sport (Ministerie van Volksgezondheid Welzijn en Sport), Den Haag

    Google Scholar 

  • Emanuel E.J. and Emanuel L.L. (1992). Four Models of the Physician–Patient Relationship. The Journal of the American Medical Association 267: 2221–26

    Article  CAS  Google Scholar 

  • Guadagnoli E. and Ward P. (1998). Patient Participation in Decision-Making. Social Science and Medicine 47(3): 329–39

    Article  CAS  PubMed  Google Scholar 

  • Kennedy I. (2003). Patients Are Experts in Their Own Field. British Medical Journal 326(7402): 1276–77

    Article  PubMed  Google Scholar 

  • Kodner, D.L.: 2003, ‘Consumer-Directed Services: Lessons and Implications for Integrated Systems of Care’ International Journal of Integrated Care 3, www.ijic.org.

  • Kraft G.H. (1999). Rehabilitation Still the Only Way to Improve Function in Multiple Sclerosis. Lancet 354(9195): 2016–17

    Article  CAS  PubMed  Google Scholar 

  • Lewin, S.A., Z.C. Skea, V. Entwistle, M. Zwarenstein and J. Dick: 2001, ‘Interventions for Providers to Promote a Patient Centred Approach in Clinical Consultations’ Cochrane Database Systematic Review 4, CD003267.

  • Lieblich A., Tuval-Mashiach R. and Zilber T. (1998). Narrative Analysis, Reading, Analysis and Interpretation. Sage, Thousand Oaks

    Google Scholar 

  • Lincoln Y.S. and Guba E.G. (1985). Naturalistic Inquiry. Sage, Beverly Hills

    Google Scholar 

  • Mackenzie C. and Stoljar N. (2000). Relational Autonomy: Feminist Perspectives on Autonomy, Agency and the Social Self. Oxford Press, New York/Oxford

    Google Scholar 

  • May C., Allison G., Chapple A., Chew-Graham C., Dixon C., Gask L., Graham R., Rogers A. and Roland M. (2004). Framing the Doctor–Patient Relationship in Chronic Illness: A Comparative Study of General Practitioners’ Accounts Patients Want to Treat as a Whole Person and Were Also Important. Sociology Health and Illness 26(2): 135–158

    Article  Google Scholar 

  • Meadows L.M. and Morse J.M. (2001). Constructing Evidence Within a Qualitative Project. In: Morse, J.M., Swanson, J.M. and Kuzel, A.J. (eds) The Nature of Qualitative Evidence, pp. Sage, Thousand Oaks

    Google Scholar 

  • McKinley R.K. and Middleton J.F. (1999). What Do Patients Want from Doctors?. British Journal of General Practice 49(447): 796–800

    CAS  PubMed  Google Scholar 

  • Mechanic D. and Meyer S. (2000). Concepts of Trust Among Patients with Serious Illness. Social Science and Medicine 51(5): 657–668

    Article  CAS  PubMed  Google Scholar 

  • (1997). The Family Doctor. In: Schrijvers, A.J.P. (eds) Health and Healthcare in the Netherlands A Critical Self-assessment of Dutch Experts in Medical and Health Sciences, pp. Elsevier/De Tijdstroom, Maarssen

    Google Scholar 

  • Mol A. (1997). Klant, burger, zieke. Het goede in drie talen (in Dutch). In: Verkerk, M.A. (eds) Denken over zorg, pp. (in Dutch) Utrecht, Elsevier/De Tijdstroom

    Google Scholar 

  • O’Connor, A.M., D. Stacey, V. Entwistle, H. Llewellyn-Thomas, D. Rovner, M. Holmes-Rovner, V. Tait, J. Tetroe, V. Fiset, M. Barry and J. Jones: 2003, ‘Decision Aids for People Facing Health Treatment or Screening Decisions’ The Cochrane Database of Systematic Reviews Issue 1, Art. No: CD001431.

  • Reissman C.K. (1993). Narrative Analysis. Qualitative Research Methods Series No. 30. Sage, Newbury Park, CA

    Google Scholar 

  • Rycroft-Malone J., Latter S., Yerrell P. and Shaw D. (2001). Consumerism in Healthcare: The Case of Medication Education. Nursing Management 9(4): 221–230

    Article  CAS  Google Scholar 

  • Say R.E. and Thomson R. (2003). The Importance of Patient Preferences in Treatment Decisions Challenges for Doctors. British Medical Journal 327(7414): 542–545

    Article  PubMed  Google Scholar 

  • Schwandt T.A. (1999). On Understanding Understanding. Qualitative Inquiry 5(4): 451–464

    Article  Google Scholar 

  • Stake R.E. (1994). Case Studies. In: Denzin, N.K. and Lincoln, Y.S. (eds) The Handbook for Qualitative Research, pp. Sage, Thousand Oaks

    Google Scholar 

  • The Council for Public Health and Healthcare. (2003). Van patiënt tot klant (in Dutch). The Council for Public Health and Healthcare (Raad voor de Volksgezondheid en Zorg), Zoetermeer

    Google Scholar 

  • Thorne S. and Paterson B. (1998). Shifting Images of Chronic Illness. Image Journal of Nursing Scholarship 30(2): 173–78

    Article  CAS  Google Scholar 

  • Tronto J.C. (1993). Moral Boundaries. Routledge, New York/London

    Google Scholar 

  • Tyreman S. (2005a). The Expert Patient: Outline of UK Government Paper. Medicine, Health Care and Philosophy 8(2): 149–151

    Article  Google Scholar 

  • Tyreman S. (2005b). An Expert in What?: The Need to Clarify Meaning and Expectations in The Expert Patient. Medicine, Health Care and Philosophy 8(2): 153–157

    Article  Google Scholar 

  • Walker M.U. (1998). Moral Understandings: A Feminist Study in Ethics. Routledge, New York/London

    Google Scholar 

  • Widdershoven G.A.M. (1999). Care, Cure and Interpersonal Understanding. Journal of Advanced Nursing 29(5): 1163–69

    Article  CAS  PubMed  Google Scholar 

  • Willems D. (2000). Managing Body Using Self-management Techniques Practicing Autonomy. Theoretical Medicine and Bioethics 21(1): 23–38

    Article  CAS  PubMed  Google Scholar 

Download references

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Authors and Affiliations

  1. Department of Health Sciences, Northern Centre for Healthcare Research, University Medical Center Groningen, University of Groningen, De Brug 606, 196, 9700, AD, Groningen, The Netherlands

    Barth Oeseburg

  2. Department of Healthcare Ethics and Philosophy, University Maastricht, Maastricht, The Netherlands

    Tineke A. Abma

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  1. Barth Oeseburg
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  2. Tineke A. Abma
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Correspondence to Barth Oeseburg.

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Oeseburg, B., Abma, T.A. Care as a mutual endeavour: Experiences of a multiple sclerosis patient and her healthcare professionals. Med Health Care Philos 9, 349–357 (2006). https://doi.org/10.1007/s11019-006-0003-6

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