Abstract
This paper presents a systematic account of ethical issues actualised in different areas, as well as at different levels and stages of health care, by introducing organisational and other procedures that embody a shift towards person centred care and shared decision-making (PCC/SDM). The analysis builds on general ethical theory and earlier work on aspects of PCC/SDM relevant from an ethics perspective. This account leads up to a number of theoretical as well as empirical and practice oriented issues that, in view of broad advancements towards PCC/SDM, need to be considered by health care ethics researchers. Given a PCC/SDM-based reorientation of health care practice, such ethics research is essential from a quality assurance perspective.
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Notes
See also, as examples, the following webpages where PCC is framed in rather missionary as well as entrepeneurial contexts: Eric Haider (http://www.personcenteredcare.com), The Person Centered Care Advocate (http://www.personcenteredcareadvocate.org/), Ohio Person-Centered Care Coalition (http://www.centeredcare.org/), Institute for Patient- and Family-Centered Care (http://www.ipfcc.org/) and Foundation for Informed Medical Decision Making (http://www.informedmedicaldecisions.org/).
Several such ideas are presently being developed and tested in projects at the University of Gothenburg Center for Person Centered Care (GPCC).
Lack of consistently and regularly applied standard treatments also threatens making the cost-efficiency instrument itself inapplicable, or at least blunter than it is today, thus making it difficult to apply any sort of cost-efficiency requirement in the prioritarisation of health care resources. A possible remedy may be to develop more sensitive cost-efficiency instruments that relate to a minimally reasonable treatment standard and rate a number of modifications to be found in between this lower level and the best treatment standard. Presumably, such instruments would have to take into account statistics on compliance and adherence.
References
Bokhour, B. G., Pugh, M. J., Rao, J. K., Avetisyan, R., Berlowitz, D. R., & Kazis, L. E. (2009). Improving methods for measuring quality of care: A patient-centered approach in chronic disease. Medical Care Research and Review, 66(2), 147–166.
British Medical Journal (1999). 319(7212).
British Medical Journal (2000). 320(7227).
Breitsameter, C. (2010). Medical decision-making and communication of risk: An ethical perspective. Journal of Medical Ethics, 36, 349–352.
Brooker, D. (2007). Person centered dementia care: Making services better. London & Philadelphia: Jessica Kingsley Publishers.
Broyle, L. M., Colbert, A. M., & Erlen, J. A. (2005). Medication practice and feminist thought: A theoretical and ethical response to adherence in HIV/AIDS. Bioethics, 19, 362–378.
Clarke, A. (Ed.). (1994). Genetic counselling: Practice and principles. London & New York: Routledge.
Clarke, G., Hall, R., & Rosencrance, G. (2004). Physician—patient relations: No more models. American Journal of Bioethics, 4(2), W16–W19.
Charles, C., Gafni, A., & Whelan, T. (1997). Shared decision making in the medical encounter: What does it mean? (or it takes two to tango). Social Science and Medicine, 44(5), 681–692.
Charles, C., Gafni, A., & Whelan, T. (2000). How to improve communication between doctors and patients. Learning more about the decision making context is important. British Medical Journal, 320, 1220–1221.
Coulter, A. (1999). Paternalism or partnership? Patients have grown up—and there’s no going back. British Medical Journal, 319, 719–720.
Dubois, C. A., Singh, D., & Jiwani, I. (2008). The human resource challenge in chronic care. In E. Nolte & M. Mckee (Eds.), Caring for people with chronic conditions. A health system perspective (pp. 143–171). Berkshire: Open University Press.
Edvardsson, D., Winblad, B., & Sandman, P. O. (2008). Person-centred care of people with severe Alzheimer’s disease: Current status and ways forward. Lancet Neurology, 7, 362–367.
Elvyn, G., Edwards, A., Gwyn, R., & Grol, R. (1999). Towards a feasible model for shared decision making: Focus group study with general practice registrars. British Medical Journal, 319, 753–756.
Emanuel, E. J., & Emanuel, L. L. (1992). Four models of the physician-patient relationship. Journal of the American Medical Association, 267(16), 2221–2226.
Epstein, K. R., Laine, C., Farber, N. J., Nelson, E. C., & Davidoff, F. (1996). Patients’ perceptions of office medical practice: Judging quality through the patients’ eyes. American Journal of Medical Quality, 11(2), 73–80.
Goodrich, J. (2009). Exploring the wide range of terminology used to describe care that is patient-centred. Nursing Times, 105(20), 14–17.
Haigh, R. (2000). Modern antipaternalism needs to be invigorated. British Medical Journal, 320(7227), 117.
Haynes, B. R., Taylor, W. R., & Sackett, D. L. (1979). Compliance in Health Care. Baltimore, MD: Johns Hopkins Univ. Press.
Hudson Jones, A. (1999). Narrative in medical ethics. British Medical Journal, 318, 253.
Joffe, S., Manocchia, M., Weeks, J. C., & Cleary, P. D. (2003). What do patients value in their hospital care? An empirical perspective on autonomy centered bioethics. Journal of Medical Ethics, 29, 103–108.
Juth, N. (2005). Genetic information. Values and rights. Göteborg: Acta Universitatis Gothoburgensis.
Kitwood, T., & Collins, M. B. (1997). Reconsidering dementia: The person comes first. London: Open University Press.
Kluge, E.-H. W. (2007). Secure e-health: Managing risks to patient health data. International Journal of Medical Informatics, 76(5), 402–406.
Koren, M. J. (2010). Person-centered care for nursing home residents: The culture-change movement. Health Affairs, 29(2), 312–317.
Lewin, S. A., Skea, Z. C., Entwistle, V., Zwarenstein, M., & Dick, J. (2001). Interventions for providers to promote a patient-centred approach in clinical consultations (Review). Cochrane Database of Systematic Reviews, 4, CD003267.
Lutfey, K. E., & Wishner, W. J. (1999). Beyond “compliance” is “adherence”. Improving the prospect of diabetes care. Diabetes Care, 22, 635–639.
Luxford, K., Piper, D., Dunbar, N., & Poole, N. (2010). Patient-centred care: Improving quality and safety by focusing care on patients and consumers. Sydney: Australian Commission of Quality and Safety in Health Care. Available online: http://www.safetyandquality.gov.au/internet/safety/publishing.nsf/Content/com-pubs_PCCC-ImpQandS-discusspaper [Last accessed 2011-05-05].
Marland, G. R. (1998). Atypical neuroleptics: Autonomy and compliance? Journal of Advanced Nursing, 29, 615–622.
McCarthy, P., LeRoy, B. S., & Bartels, D. M. (Eds.). (2003). Facilitating the genetic counselling process. London & New York: Springer.
McLean, A. (2006). The person in dementia: A study of nursing home care in the US. Toronto: University of Toronto Press.
McLeod, C. (2002). Self-trust and reproductive autonomy. London: MIT Press.
Mead, N., & Bower, P. (2000). Patient-centeredness: A conceptual framework and review of the empirical literature. Social Science and Medicine, 51, 1087–1110.
Munthe, C. (2008). The goals of public health: An integrated, multi-dimensional model. Public Health Ethics, 1(1), 39–52.
Nolte, E., & Mckee, C. M. (Eds.). (2008). Caring for people with chronic conditions. A health system perspective. Berkshire: Open University Press.
Pitkala, K. H., Strandberg, T. E., & Tilvis, R. S. (2007). Interest in healthy lifestyle and adherence to medications: Impact on mortality among elderly cardiovascular patients in the DEBATE Study. Patient Education and Counselling, 67, 44–49.
Rapp, R. (2000). Testing women, testing the fetus. The social impact of amniocentesis in America. London: Routledge.
Robinson, A., & Thomson, R. (2001). Variability in patient preferences for participation in medical decision making: Implication for the use of decision support tools. Quality in Health Care, 10(1), i34–i38.
Russell, S., Daly, J., Hughes, E., & Hoog Co, C. (2003). Nurses and ‘difficult’ patients: Negotiating non-compliance. Journal of Advanced Nursing, 43, 281–287.
Sandman, L. (2009). The concept of negotiating in shared decision-making. Health Care Analysis, 17(3), 236–243.
Sandman, L., & Munthe, C. (2009). Shared decision making and patient autonomy. Theoretical Medicine and Bioethics, 30(4), 289–310.
Sandman, L., & Munthe, C. (2010). Shared decision making, paternalism and patient choice. Health Care Analysis, 18(1), 60–84.
Sandman, L., Granger, B. B., Ekman, I., & Munthe, C. (2011). Adherence, shared decision-making and patient autonomy. Medicine, Health Care and Philosophy. doi 10.1007/s11019-011-9336-x.
Segal, J. Z. (2007). “Compliance” to “concordance”: A critical view. Journal of Medical Humanities, 28, 81–96.
Segall, S. (2010). Health, luck and justice. Princeton: Princeton University Press.
Silverman, R. D. (2003). Current legal and ethical concerns in telemedicine and e-medicine. Journal of Telemedicine and Telecare, 9, 67–69.
Stiggelbout, A. M., Molewijk, A. C., Otten, W., Timmermans, D. R. M., van Bockel, J. H., & Kievit, J. (2004). Ideals of patient autonomy in clinical decision making: A study of the development of a scale to assess patients’ and physicians’ views. Journal of Medical Ethics, 30, 268–274.
Thaler, R. H., & Sunstein, C. R. (2008). Nudge: Improving decisions about health wealth and happiness. New Haven & London: Yale University Press.
Thomson, J., Schofield, P., Mileshkin, E., Agalianos, E., Savulescu, J., Zalcberg, J., et al. (2006). Do oncologists discuss expensive anti-cancer drugs with their patients? Annals of Oncology, 17(4), 702–708.
Timms, N., & Lowes, L. (1999). Autonomy or non-compliance in adolescent diabetes? British Journal of Nursing, 8, 794–797–794–800.
Van Royen, P., Beyer, M., Chevallier, P., Eilat-Tsanani, S., Lionis, C., Peremans, L., et al. (2010). The research agenda for general practice/family medicine and primary health care in Europe. Part 3. Results: Person centred care, comprehensive and holistic approach. European Journal of General Practice, 16, 113–119.
Van Dam, H. A., Van der Horst, F., Van den Borne, B., Ryckman, R., & Crebolder, H. (2003). Provider-patient interaction in diabetes care: Effects on patient self-care and outcomes. A systematic review. Patient Education and Counseling, 51, 17–28.
WHO. (2003). Adherence to long-term therapies. Evidence for action. Geneva: World Health Organisation.
Wolf, D. M., Lehman, L., Quinlin, R., Zullo, T., & Hoffman, L. (2008). Effect of patient-centered care on patient satisfaction and quality of care. Journal of Nursing Care Quality, 23(4), 316–321.
Ågård, A., Löfmark, R., Edvardsson, N., & Ekman, I. (2007). Views of patients with heart failure about their role in the decision to start implantable cardioverter-defibrillator treatment: prescription rather than participation. Journal of Medical Ethics, 33, 514–518.
Acknowledgment
This work was supported by University of Gothenburg Centre for Person-Centred Care (GPCC), Sweden. GPCC is funded by the Swedish Government’s grant for Strategic Research Areas, Care Sciences [Application to Swedish Research Council nr 2009-1088] and co-funded by University of Gothenburg, Sweden.
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Munthe, C., Sandman, L. & Cutas, D. Person Centred Care and Shared Decision Making: Implications for Ethics, Public Health and Research. Health Care Anal 20, 231–249 (2012). https://doi.org/10.1007/s10728-011-0183-y
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DOI: https://doi.org/10.1007/s10728-011-0183-y