The Counseling, Self-Care, Adherence Approach to Person-Centered Care and Shared Decision Making: Moral Psychology, Executive Autonomy, and Ethics in Multi-Dimensional Care Decisions

ABSTRACT

This article argues that standard models of person-centred care (PCC) and shared decision making (SDM) rely on simplistic, often unrealistic assumptions of patient capacities that entail that PCC/SDM might have detrimental effects in many applications. We suggest a complementary PCC/SDM approach to ensure that patients are able to execute rational decisions taken jointly with care professionals when performing self-care. Illustrated by concrete examples from a study of adolescent diabetes care, we suggest a combination of moral and psychological considerations to support the claim that standard PCC/SDM threatens to systematically undermine its own goals. This threat is due to a tension between the ethical requirements of SDM in ideal circumstances and more long-term needs actualized by the context of self-care handled by patients with limited capacities for taking responsibility and adhere to their own rational decisions. To improve this situation, we suggest a counseling, self-care, adherence approach to PCC/SDM, where more attention is given to how treatment goals are internalized by patients, how patients perceive choice situations, and what emotional feedback patients are given. This focus may involve less of a concentration on autonomous and rational clinical decision making otherwise stressed in standard PCC/SDM advocacy.

Acknowledgments

This study is an outcome of the project “Organizing Person-Centered Care in Pediatric Diabetes: Communication, Decision-making, Ethics and Health.” The authors are grateful for the contributions to the data collection used in this study by Cajsa Ottesjö (Department of Philosophy, Lingusitics, and Theory of Science) and Ann-Katrine Karlsson (Göteborg Pediatric Growth Research Center), as well as the input to analytical discussions by Mats Eklöf (Department of Psychology), Thomas Hartvigsson (Department of Philosophy, Lingusitics, and Theory of Science) and Ewa Wikström (School of Business, Economics, and Law), all at the University of Gothenburg.

Funding

This work was supported by the Royal Society of Arts and Sciences in Gothenburg, Stiftelsen Olle Engkvist Byggmästare, Forte Marie Curie International Postdoc Fellowship Program (contract number 2014–2724), the Swedish Research Council (VR) and the Swedish Research Council for Health, Working Life and Welfare (FORTE), contract no. 2014–4024, and the 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.

Notes

¹ Also other notions have been used to denote more or less the same thing, like consumer-, family-, or relationship-centered care (see, e.g., Ekman et al., 2011; Luxford et al., 2010; Munthe et al., 2012).

² This fits many chronic conditions and conditions in need of long-standing outpatient management, but by itself this is not a decisive factor.

³ Adherence problems may, of course, also occur when the assumptions of standard PCC/SDM are met, in which case they can be dealt with within this framework (Sandman et al., 2012).

⁴ This has been held out as a general ethical problem for PCC/SDM advocacy addressing such areas (Munthe et al., 2012), and also has been problematized in connection to specific cases (Birchley, 2014; Delaney & Galvin, 2014; Pelto-Piri, Engström, & Engström, 2013; Seibel et al., 2014).

⁵ Regional ethics review board of Gothenburg, registration number 532–10.

⁶ All names are proxies introduced to increase readability.

⁷ The form of testing may vary, where, of course, a bona fide randomized controlled trial (RCT)—possibly by comparable centers with comparable populations respectively applying the standard or CSA approach—would be the ideal.

Additional information

Funding

This work was supported by the Royal Society of Arts and Sciences in Gothenburg, Stiftelsen Olle Engkvist Byggmästare, Forte Marie Curie International Postdoc Fellowship Program (contract number 2014–2724), the Swedish Research Council (VR) and the Swedish Research Council for Health, Working Life and Welfare (FORTE), contract no. 2014–4024, and the 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.