Abstract
It is commonplace that care should be patient-centered. Nevertheless, no universally agreed-upon definition of patient-centered care exists. By consequence, the relation between patient-centered care as such and ethical principles cannot be investigated. However, some research has been performed on the relation between specific models of patient-centered care and ethical principles such as respect for autonomy and beneficence. In this article, I offer a detailed case study on the relationship between specific measures of patient-centered care and the ethical principle of respect for autonomy. Decision Quality Instruments (DQIs) are patient-centered care measures that were developed by Karen Sepucha and colleagues. The model of patient-centered care that guided the development of these DQIs pays special attention to the ethical principle of respect for autonomy. Using Jonathan Pugh’s theory of rational autonomy, I will investigate how the DQIs relate to patient autonomy. After outlining Pugh’s theory of rational autonomy and framing the DQIs accordingly (Part I), I will investigate whether the methodological choices made while developing these DQIs align with respect for autonomy (Part II). My analysis will indicate several tensions between DQIs and patient autonomy that could result in what I call “structural paternalism.” These tensions offer us sufficient reasons, especially given the importance of the ethical principle of respect for autonomy, to initiate a more encompassing debate on the normative validity of Decision Quality Instruments. The aim of the present paper is to highlight the need for, and to offer a roadmap to, this debate.
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05 December 2022
A Correction to this paper has been published: https://doi.org/10.1007/s11019-022-10131-x
Notes
Besides, many terminological differences exist as well. Related terms such as “person-centered care” and “family-centered medicine” have been coined (e.g. Louw et al. 2017). As “patient-centered care” is the term used in the case and I have no ambition to review differences and similarities between “patient-centered care” and its cognates, I will restrict myself to that term.
I take the latter use implicitly for granted in what follows.
As I suggested elsewhere, similar tools might also be used to evaluate some effects of Clinical Decision Support Systems (CDSS) (Debrabander and Mertes 2021)
In what follows I use “decisional autonomy” as shorthand for “the decisional dimension of autonomy.”
The picture is slightly more complex as theoretical rationality not only concerns the beliefs about the choice options, but also the evaluative beliefs a person holds (e.g. how important is longevity to me?). By consequence, theoretical and practical rationality are “not entirely separate domains” as the former is in part about the evaluative beliefs in light of which the practical rationality of people’s choices is judged (Pugh 2020, p. 43). Still, they are independent in the sense that the degree of theoretical rationality does not influence the degree of practical rationality and vice versa (Pugh 2020, pp. 21–25).
For the remainder of this paper, I use patients’ “goals,” “values” and “preferences” interchangeably, unless indicated otherwise.
Nevertheless, they are not unambiguous on this point. In the same article, they note that “The purpose of the Breast Cancer Surgery Decision Quality Instrument is to provide a comprehensive assessment of the extent to which patients make informed decisions and receive treatments that match their goals” (Sepucha et al. 2012a, p. 7; my emphasis).
Further considerations on setting a threshold for well-informedness will be mentioned at the end of Section “Relating knowledge and concordance”.
Even if known cognitive biases could explain the low knowledge scores, the possibility to mitigate the influence of these biases should not be overlooked, albeit I am aware of the limited success of such “debiasing strategies” (Blumenthal-Barby 2021, pp. 107–109).
One might wonder whether the inclusion of value items such as “spouse’s goals” would not legitimate problematic influences of patients’ spouses, thereby reinforcing problematic power imbalances between partners. In my opinion, including such a value item might, quite to the contrary, allow us to trace some of these power imbalances given that they could result in problematically high scores for that value item. I thank an anonymous reviewer for raising this point.
In this paragraph I use “treatment preference” to indicate the preference a patient has with regard to a treatment (e.g. mastectomy or lumpectomy plus radiation). This contrasts with the previous use of “preference” as interchangeable with “value” and “goal”, indicating the importance of an aspect or consequence of a treatment (e.g. survival rate, impact on quality of life, …).
References
Ahmed, Sadia, Andrea Djurkovic, Kimberly Manalili, Balreen Sahota, and Maria J. Santana. 2019. A qualitative study on measuring patient-centered care: Perspectives from clinician-scientists and quality improvement experts. Health Science Reports. https://doi.org/10.1002/hsr2.140.
Alexandrova, Anna. 2017. A philosophy for the science of well-being. Oxford: Oxford University Press.
Alexandrova, Anna, and Daniel M. Haybron. 2016. Is construct validation valid? Philosophy of Science 83 (5): 1098–1109. https://doi.org/10.1086/687941.
Banner, Natalie F., and George Szmukler. 2013. “Radical interpretation” and the assessment of decision-making capacity: “Radical interpretation” and decision-making capacity. Journal of Applied Philosophy 30 (4): 379–394. https://doi.org/10.1111/japp.12035.
Barry, Michael J., Susan Edgman-Levitan, and Karen Sepucha. 2018. Shared decision-making: Staying focused on the ultimate goal. NEJM Catalyst. https://doi.org/10.1056/CAT.18.0097.
Blumenthal-Barby, Jennifer S. 2021. Good ethics and bad choices: The relevance of behavioral economics for medical ethics. Cambridge: MIT Press.
Christman, John Philip. 2009. The politics of persons: Individual autonomy and socio-historical selves. Cambridge: Cambridge University Press.
Debrabander, Jasper, and Heidi Mertes. 2021. Watson, autonomy and value flexibility: Revisiting the debate. Journal of Medical Ethics. https://doi.org/10.1136/medethics-2021-107513.
Dowie, Jack, and MetteKjer Kaltoft. 2020. Decision quality is a preference-sensitive formative concept: How do some existing measures compare? In Digital personalized health and medicine, ed. Pape-Haugaard, et al., 562–566. Amsterdam: IOS Press.
Durand, Marie-Anne., Renata W. Yen, A. James O’Malley, Danielle Schubbe, Mary C. Politi, Catherine H. Saunders, Shubhada Dhage, et al. 2021. What matters most: Randomized controlled trial of breast cancer surgery conversation aids across socioeconomic strata. Cancer 127 (3): 422–436. https://doi.org/10.1002/cncr.33248.
Ells, Carolyn, Matthew R. Hunt, and Jane Chambers-Evans. 2011. Relational autonomy as an essential component of patient-centered care. IJFAB: International Journal of Feminist Approaches to Bioethics 4 (2): 79–101. https://doi.org/10.3138/ijfab.4.2.79.
Elwyn, Glyn, Benjamin Elwyn, and Talya Miron-Shatz. 2009. Measuring “decision quality”: Irresolvable difficulties and an alternative proposal. In Shared decision-making in health care. Achieving evidence-based patient choice, ed. Adrian Edwards and Glyn Elwyn, 143–149. Oxford: Oxford University Press.
Faden, Ruth R., Tom L. Beauchamp, and Nancy M. P. King. 1986. A history and theory of informed consent. New York: Oxford University Press.
Giusti, Alessandra, Kennedy Nkhoma, Ruwayda Petrus, Inge Petersen, Liz Gwyther, Lindsay Farrant, Sridhar Venkatapuram, and Richard Harding. 2020. The empirical evidence underpinning the concept and practice of person-centred care for serious illness: A systematic review. BMJ Global Health 5 (12): e003330. https://doi.org/10.1136/bmjgh-2020-003330.
Grisso, Thomas, Paul S. Appelbaum, and Carolyn Hill-Fotouhi. 1997. The MacCAT-T: a clinical tool to assess patients’ capacities to make treatment decisions. Psychiatric Services 48 (11): 1415–1419. https://doi.org/10.1176/ps.48.11.1415.
Hansson, Sven Ove, and Barbro Fröding. 2021. Ethical conflicts in patient-centred care. Clinical Ethics 16 (2): 55–66. https://doi.org/10.1177/1477750920962356.
Hawley, Sarah T., Yun Li, Lawrence C. An, Kenneth Resnicow, Nancy K. Janz, Michael S. Sabel, Kevin C. Ward, et al. 2018. Improving breast cancer surgical treatment decision making: The icandecide randomized clinical trial. Journal of Clinical Oncology 36 (7): 659–666. https://doi.org/10.1200/JCO.2017.74.8442.
Institute of Medicine. 2001. Envisioning the national health care quality report. Washington: National Academies Press. https://doi.org/10.17226/10073.
Kaltoft, Mette Kjer, Jesper Bo Nielsen, Glenn Salkeld, and Jack Dowie. 2015. Who should decide how much and what information is important in person-centred health care? Journal of Health Services Research & Policy 20 (3): 192–195. https://doi.org/10.1177/1355819614567911.
Krumins, Peter E., Stephan D. Fihn, and Daniel L. Kent. 1988. Symptom severity and patients’ values in the decision to perform a transurethral resection of the prostate. Medical Decision Making 8 (1): 1–8. https://doi.org/10.1177/0272989X8800800101.
Louw, Jakobus M., Tessa S. Marcus, and Johannes F.M.. Hugo. 2017. Patient- or person-centred practice in medicine?—A review of concepts. African Journal of Primary Health Care & Family Medicine. https://doi.org/10.4102/phcfm.v9i1.1455.
Louw, Jakobus M., Tessa S. Marcus, and Jannie Hugo. 2020. How to measure person-centred practice—An analysis of reviews of the literature. African Journal of Primary Health Care & Family Medicine. https://doi.org/10.4102/phcfm.v12i1.2170.
MGH Health Decision Sciences Center. 2021a. Decision quality instruments. https://mghdecisionsciences.org/tools-training/decision-quality-instruments/. Accessed November 22, 2021.
MGH Health Decision Sciences Center. 2021b. Decision quality. https://mghdecisionsciences.org/tools-training/decision-quality/. Accessed November 22, 2021.
Mulley, Albert G. 1989. Assessing patients’ utilities: Can the ends justify the means? Medical Care 27 (Supplement): S269–S281. https://doi.org/10.1097/00005650-198903001-00021.
Pugh, Jonathan. 2020. Autonomy, rationality, and contemporary bioethics. Oxford: Oxford University Press.
Schwalm, Jon-David., Dawn Stacey, Dan Pericak, and Madhu K. Natarajan. 2012. Radial artery versus femoral artery access options in coronary angiogram procedures: Randomized controlled trial of a patient-decision aid. Circulation: Cardiovascular Quality and Outcomes 5 (3): 260–266. https://doi.org/10.1161/CIRCOUTCOMES.111.962837.
Sepucha, Karen R., Floyd J. Fowler, and Albert G. Mulley. 2004. Policy support for patient-centered care: the need for measurable improvements in decision quality: Documenting gaps in patients’ knowledge could stimulate rapid change, moving decisions and care closer to a patient-centered ideal. Health Affairs 23 (Suppl2): 54–62. https://doi.org/10.1377/hlthaff.var.54.
Sepucha, Karen, Elissa Ozanne, Kerry Silvia, Ann Partridge, and Albert G. Mulley. 2007. An approach to measuring the quality of breast cancer decisions. Patient Education and Counseling 65 (2): 261–269. https://doi.org/10.1016/j.pec.2006.08.007.
Sepucha, Karen R., Jeffrey K. Belkora, Yuchiao Chang, Carol Cosenza, Carrie A. Levin, Beverly Moy, Ann Partridge, and Clara N. Lee. 2012a. Measuring decision quality: Psychometric evaluation of a new instrument for breast cancer surgery. BMC Medical Informatics and Decision Making 12 (1): 51. https://doi.org/10.1186/1472-6947-12-51.
Sepucha, Karen R., Sandra Feibelmann, William A. Abdu, Catharine F. Clay, Carol Cosenza, Stephen Kearing, Carrie A. Levin, and Steven J. Atlas. 2012b. Psychometric evaluation of a decision quality instrument for treatment of lumbar herniated disc. Spine 37 (18): 1609–1616. https://doi.org/10.1097/BRS.0b013e3182532924.
Sepucha, Karen R., Daniel D. Matlock, Celia E. Wills, Mary Ropka, Natalie Joseph-Williams, Dawn Stacey, ChirkJenn Ng, et al. 2014. “It’s valid and reliable” is not enough: Critical appraisal of reporting of measures in trials evaluating patient decision aids. Medical Decision Making 34 (5): 560–566. https://doi.org/10.1177/0272989X14528381.
Solberg, Leif I., Stephen E. Asche, Louise H. Anderson, N. Karen Sepucha, Marcus Thygeson, Joan E. Madden, Larry Morrissey, and Karen K. Kraemer. 2009. Evaluating preference-sensitive care for uterine fibroids: It’s not so simple. Journal of Women’s Health 18 (7): 1071–1079. https://doi.org/10.1089/jwh.2008.0948.
Stacey, Dawn, France Légaré, Krystina Lewis, Michael J. Barry, Carol L. Bennett, Karen B. Eden, Margaret Holmes-Rovner, et al. 2017. Decision aids for people facing health treatment or screening decisions. Edited by Cochrane Consumers and Communication Group. Cochrane Database of Systematic Reviews. https://doi.org/10.1002/14651858.CD001431.pub5.
Tanenbaum, Sandra J. 2015. What is patient-centered care? A typology of models and missions. Health Care Analysis 23 (3): 272–287. https://doi.org/10.1007/s10728-013-0257-0.
Trenaman, Logan, Jesse Jansen, Jennifer Blumenthal-Barby, Mirjam Körner, Joanne Lally, Daniel Matlock, Lilisbeth Perestelo-Perez, et al. 2021. Are we improving? Update and critical appraisal of the reporting of decision process and quality measures in trials evaluating patient decision aids. Medical Decision Making 41 (7): 954–959. https://doi.org/10.1177/0272989X211011120.
Winn, Karen, Elissa Ozanne, and Karen Sepucha. 2015. Measuring patient-centered care: An updated systematic review of how studies define and report concordance between patients’ preferences and medical treatments. Patient Education and Counseling 98 (7): 811–821. https://doi.org/10.1016/j.pec.2015.03.012.
Acknowledgements
I would like to thank Heidi Mertes, Seppe Segers, Erik Weber and two anonymous reviewers for their valuable comments on earlier drafts.
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This research was made possible by grant BOFSTG2020002501 of Ghent University’s Special Research Fund.
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The original online version of this article was revised: In the original publication of the article, the name of the corresponding author was published incorrectly as “Debrabander Jasper”. The correct author name should read as “Jasper Debrabander”.
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Debrabander, J. On the relation between decision quality and autonomy in times of patient-centered care: a case study. Med Health Care and Philos 25, 629–639 (2022). https://doi.org/10.1007/s11019-022-10108-w
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DOI: https://doi.org/10.1007/s11019-022-10108-w