Shared decision-making (SDM) is defined as “an approach where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve informed preferences.”1 It is a meeting of two experts, where the doctor is the expert on the medical issues and available treatment options, while the patient is the expert on their own values and preferences. SDM was codified in the 2010 Affordable Care Act and was endorsed by the Seventh World Symposium on Pulmonary Hypertension and the American Heart Association to improve patient and clinical outcomes.2,3 With 15 approved therapies from the US Food and Drug Administration for pulmonary arterial hypertension (PAH), treatment selection is a complex decision for which SDM should be implemented.
“I already practice SDM!”
The three key components of SDM include: (1) clearly communicated, unbiased medical evidence on the risks and benefits of the medical intervention and reasonable alternatives, including no intervention; (2) clinical expertise tailored to individual patients; and (3) inclusion of patient values, goals, and preferences, as well as treatment burdens, in the decision process.4 Clinicians (70%-90%) and patients (60%-80%) overestimate the perceived rate of SDM occurrence when compared with researchers (20%-40%) observing videotaped encounters.5 Most clinicians have not received formal SDM training, and most patients are unaware and unsure of how to approach SDM. The inherent power imbalance between clinicians and patients further impedes SDM implementation.6,7
“I don’t have time for SDM!”
Clinicians and patients are aware of time constraints during clinical encounters. However, a study of SDM discussions with surgical patients showed that SDM could be achieved in a median time of 17.8 minutes, compared with 15.4 minutes for appointments without SDM.8
“Is SDM achievable in PAH?”
Yes! Clinician and patient training regarding SDM in PAH is key.9 Multiple SDM resources are available, including the SHARE approach by the Agency for Healthcare Research and Quality, the Three-Talk Model, and the Ottawa Decision Support Framework.1,10 SDM in PAH is currently being evaluated by the authors using CollaboRATE, a three-question survey that assesses the perception of SDM during PAH therapy selection. Use of decision-aids and option grids specific to PAH may accelerate SDM.4 For SDM to be incorporated into daily practice—and to bring the utopian ideal to life—there must be: (1) policy-level changes that foster SDM, (2) payor buy-in that incorporates SDM, (3) adjustment of productivity metrics that include SDM, and (4) formal clinician training and adoption of SDM methodologies and tools.
Katrina Barry, MPH, a patient and researcher on quadruple PAH therapy, said, “I really identify with the elements of SDM, recognizing treatment burdens for me with continuous intravenous prostacyclin therapy and my personal preferences around swimming and caregiver assistance during therapy initiation. As a patient, I understand there are time constraints; but, with SDM, I feel I am being prioritized.”
In Sir William Osler’s words, “The good physician treats the disease; the great physician treats the patient who has the disease.”
References
1. Elwyn G, Frosch D, Thomson R, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27(10):1361-1367. doi: 10.1007/s11606-012-2077-6
2. Chin KM, Gaine SP, Gerges C, et al. Treatment algorithm for pulmonary arterial hypertension. Eur Respir J. 2024;64(4):2401325. doi: 10.1183/13993003.01325-2024
3. Dennison Himmelfarb CR, Beckie TM, Allen LA, et al. Shared decision-making and cardiovascular health: a scientific statement from the American Heart Association. Circulation. 2023;148(11):912-931. doi: 10.1161/CIR.0000000000001162
4. National Standards for the Certification of Patient Decision Aids. National Quality Forum. 2016.
5. Driever EM, Stiggelbout AM, Brand PLP. Patients’ preferred and perceived decision-making roles, and observed patient involvement in videotaped encounters with medical specialists. Patient Educ Couns. 2022;105(8):2702-2707. doi: 10.1016/j.pec.2022.03.025
6. Légaré F, Stacey D, Turcotte S, et al. Interventions for improving the adoption of shared decision making by healthcare professionals. Cochrane Database Syst Rev. 2014:(9):CD006732. doi: 10.1002/14651858.CD006732.pub3
7. Joseph-Williams N, Edwards A, Elwyn G. Power imbalance prevents shared decision making. BMJ. 2014;348:g3178. doi: 10.1136/bmj.g3178
8. Braddock C III, Hudak PL, Feldman JJ, Bereknyei S, Frankel RM, Levinson W. “Surgery is certainly one good option”: quality and time-efficiency of informed decision-making in surgery. J Bone Joint Surg Am. 2008;90(9):1830-1838. doi: 10.2106/JBJS.G.00840
9. Graarup J, Ferrari P, Howard LS. Patient engagement and self-management in pulmonary arterial hypertension. Eur Respir Rev. 2016;25(142):399-407. doi: 10.1183/16000617.0078-2016
10. Stacey D, Légaré F, Boland L, et al. 20th anniversary Ottawa Decision Support Framework: part 3 overview of systematic reviews and updated framework. Med Decis Making. 2020;40(3):379-398. doi: 10.1177/0272989X20911870