Deciding to Live (or Not) With a Left Ventricular Assist Device-a Thematic Analysis Exploring Factors Influencing the Decision-Making Process in Advanced Heart Failure Patients in Singapore

Abstract

Background: It is often difficult for patients with advanced heart failure (HF) to decide whether to live with a left ventricular assist device (LVAD) or not. Little is known about their decisional needs prior to LVAD implantation and if these needs were met in the Asian cultural setting. Aims: We aimed to explore the influences, concerns, and needs surrounding the decision-making process of the LVAD implantation among multi-ethnic Asian patients with HF. Methods: Semi-structured interviews with HF patients and caregivers were conducted, based upon the grounded theory approach. Participants were purposively recruited from the inpatient and outpatient setting of the National Heart Centre Singapore. Results: A total of 31 patients and 11 caregivers participated. Mindsets that shaped decision-making ranged from “having no choice,” “being reflective,” “taking a gamble,” and “fighting on.” Instead of making a sole decision, many patients reported that decisions were shared with the family or medical team. Current LVAD patients who acted as patient ambassadors were also strong influences. Spiritual support was pivotal to decision-making for some participants. Goals influencing decision-making including protecting the family and life prolongation improving quality of life. Values held close included sanctity of life, trusting in a higher power, believing in pre-destination or karma, and preserving family harmony. Participants had concerns about cost, employment, and health outcomes. Conclusions: Asian LVAD patients and caregivers had culturally specific mindsets, goals, and values and concerns around decision-making. Our findings have implications for the design of interventions and supportive care models.

How Values Are Discussed, Reflected Upon, and Acted On by Patients and Family Caregivers in the Context of Heart Failure: A Scoping Review

“…24,25,33–38 Three studies 23,32,33 did not specify FCG ages. Eight papers 24–26,30,32,33,37,38 included only patients with HF, 7 included patients with HF and their FCGs, 23,27–29,32,33,36 and 1 included only FCGs. 31 FCGs were primarily spouses or family members.…”

“…Twelve 24–27,30,32,34–38 of 16 papers reported on how patient values are discussed, reflected upon, or acted on; 3 papers 23,29,33 reported both patient and FCGs values; and 1 paper 31 reported exclusively on FCG values. In 2 papers, 27,32 patient values were reported, although it was unclear if FCG values were also discussed, reflected upon, or acted on.…”

“…Most values discussions occurred among patients with a range of HF severity, including ACC/AHA stage C/D HF categorized as NYHA class II–IV. 23,29,32,33,35,37 The remaining papers included patients with ACC/AHA stage D, 27 INTERMACS levels 1 to 4, 36 and NYHA class I–III. 25 One paper 24 did not specify HF stage.…”

“…25 One paper 24 did not specify HF stage. Among LVAD studies, values discussions occurred among participants offered bridge-to-transplant (BTT) or destination therapy (DT) LVAD 27,36 and BTT, DT, or bridge-to-decision LVAD. 23 One study 29 did not specify LVAD indication.…”

“…Of these, 4 included only researchers and patients, 24,25,35,37 2 held discussions with patients and FCGs together, 33,36 and 3 conducted separate discussions with patients and FCGs. 23,27,29 In 1 paper, 32 it was unclear whether FCG values were discussed. One intervention study 36 reported values discussions between patients, family members, and board-certified palliative care clinicians.…”