Assessment of patients' and caregivers' informational and decisional needs for left ventricular assist device placement: Implications for informed consent and shared decision-making

JOURNAL OF HEART AND LUNG TRANSPLANTATION

卷:34

Article

Blumenthal-Barby, Jennifer S.¹  Kostick, Kristin M.¹  Delgado, Estevan D.¹  Volk, Robert J.²  Kaplan, Holland M.¹  Wilhelms, L. A.¹  McCurdy, Sheryl A.³  Estep, Jerry D.^4,5  Loebe, Matthias^4,5  Bruce, Courtenay R.¹ 

[1] Baylor Coll Med, Ctr Med Ethics & Hlth Policy, Houston, TX 77030 USA

[2] Univ Texas Houston, MD Anderson Canc Ctr, Dept Hlth Serv Res, Houston, TX 77030 USA

[3] Univ Texas Houston, Sch Publ Hlth, Houston, TX USA

[4] Houston Methodist DeBakey Heart & Vasc Ctr, Houston, TX USA

[5] Houston Methodist Hosp, JC Walter Jr Transplant Ctr, Houston, TX USA

关键词: ventricular assist device;    shared decision making;    informed consent;    decision making;    heart failure;    transplant;    caregivers;   

DOI  :  10.1016/j.healun.2015.03.026

来源: Elsevier

【 摘 要 】

BACKGROUND: Several organizations have underscored the crucial need for patient-centered decision tools to enhance shared decision-making in advanced heart failure. The purpose of this study was to investigate the decision-making process and informational and decisional needs of patients and their caregivers regarding left ventricular assist device (LVAD) placement. METHODS: In-depth, structured interviews with LVAD patients, candidates and caregivers (spouse, family members) (n = 45) were conducted. We also administered a Decisional Regret Scale. RESULTS: Participants reported LVAD decision-making to be quick and reflexive (n = 30), and deferred heavily to clinicians (n = 22). They did not perceive themselves as having a real choice (n = 28). The 2 most prevalent informational domains that participants identified were lifestyle issues (23 items), followed by technical (drive-line, battery) issues (14 items). Participants easily and clearly identified their values: life extension; family; and mobility. Participants reported the need to meet other patients and caregivers before device placement (n = 31), and to have an involved caregiver (n = 28) to synthesize information. Some participants demonstrated a lack of clarity regarding transplant probability: 9 of 15 patients described themselves as on a transplant trajectory, yet 7 of these were destination therapy patients. Finally, we found that decisional regret scores were low (1.307). CONCLUSIONS: Informed consent and shared-decision making should: (a) help patients offered highly invasive technologies for life-threatening disease get past the initial anything to avoid thinking about death reaction and make a more informed decision; (b) clarify transplant status; and (c) focus on lifestyle and technical issues, as patients have the most informational needs in these domains. (C) 2015 International Society for Heart and Lung Transplantation. All rights reserved.

【 授权许可】

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