A qualitative phenomenological study incorporating Photovoice was conducted to gain insight into the lived experience of patients with end-stage heart failure (ESHF). Seven participants were recruited and in-depth open-ended interviews were conducted with all participants. Three of the seven informants also opted to take part in the Photovoice portion of the project. “Working to preserve a sense of self” emerged as the essence of living with ESHF and was supported by three themes: i) the work of managing a failing and unreliable body, ii) the work of choreographing daily living; and iii) the work of charting the final chapter of one’s life. The findings from this study provide healthcare professionals with empirically grounded information and insights about the needs and everyday challenges individuals living with ESHF experience, and how clinicians can best support them. Such information is essential in order to plan meaningful, holistic, evidence-based care for ESHF patients.

A qualitative phenomenological study incorporating Photovoice was conducted to gain insight into the lived experience of patients with end-stage heart failure (ESHF). Seven participants were recruited and in-depth open-ended interviews were conducted with all participants. Three of the seven informants also opted to take part in the Photovoice portion of the project. “Working to preserve a sense of self” emerged as the essence of living with ESHF and was supported by three themes: i) the work of managing a failing and unreliable body, ii) the work of choreographing daily living; and iii) the work of charting the final chapter of one’s life. The findings from this study provide healthcare professionals with empirically grounded information and insights about the needs and everyday challenges individuals living with ESHF experience, and how clinicians can best support them. Such information is essential in order to plan meaningful, holistic, evidence-based care for ESHF patients.

Continuous-flow left ventricular assist devices provide mechanical circulatory assistance for patients suffering from end-stage heart failure that are awaiting or ineligible for heart transplantation. Although actuarial survival and quality of life with these devices is comparable to allograft transplant, they are associated with severe adverse events, including cerebrovascular accidents. Recent advances in continuous-flow technology aim to mitigate the risk of stroke by including design features that minimize flow stasis, turbulence and endothelial dysfunction, as well as promote near-normal pulse pressures. The proposed study is a multicenter, prospective, randomized clinical trial that aims to compare the stroke-free survival and associated incidence and risk of cerebrovascular accidents between three continuous-flow left ventricular assist devices in patients with refractory, end-stage heart failure planning to undergo bridge-to-transplant or destination therapy. Patients will be randomized to receive one of three devices (HeartMate II, Thoratec Corporation, Pleasanton, CA; HeartWare HVAD, HeartWare International Inc., Framingham, MA; HeartMate III, Thoratec Corporation, Pleasanton, CA). Patients will be monitored for stroke-free survival and incidence of cerebrovascular accident for 24 months post-implantation. Investigators will compare stroke-free survival with Kaplan-Meier survival curves and log-rank testing; in addition, investigators will examine each device’s level of risk for causing a cerebrovascular accident with chi square and odds ratio analysis. The data from this study will be used to guide treatment paradigms, device assignment and future development of technologies that mitigate stroke risk in this high-risk population.

This thesis is about cultural aspects of advanced medical technology for treating end-stage heart failure. New medical technologies like mechanical help-hearts save lives, but they also bring new uncertainties, risks, and challenges. Based on nine months of ethnographic field work in a Swedish academic hospital, this study examines the ways of managing uncertainties of end-stage heart failure and of high-tech treatment, and also how these practices tie into the shared understandings of life-threatening chronic illness, the body, and medical technology’s role. This study draws on anthropological discussions of healing rituals as an analytical tool to make sense of social and cultural dimensions of mechanical help-heart implantation treatment. Viewed as a ritual, this treatment creates and maintains hope as a virtue through which possibilities of new medical technology are justified as culturally approved ways of handling the uncertainties of severe heart failure and mechanical help-heart treatment. Ultimately, even when treatment is regarded as successful, the patients may be saved but are never really ‘cured’ and remain, thus, permanently tied to the world of medicine. This new mode of existence is characterized by paradoxical permanent transit between uncertainty and hope. / Avhandlingen fokuserar på de kulturella aspekterna av den medicinska teknologin som används vid behandling av svår hjärtsvikt. Samtidigt som ny medicinsk teknologi som mekaniska hjälphjärtan räddar liv för den även med sig ovisshet och nya utmaningar som ofta är svåra att förutse. Baserat på nio månaders etnografiskt fältarbete vid ett universitetssjukhus i Sverige undersöks hur denna ovisshet och dessa utmaningar hanteras av medicinskt personal och patienter. I avhandlingen behandlas också sambanden mellan medicinska praktiker och de lokalt delade uppfattningarna om livshotande kroniska sjukdomar, den mänskliga kroppen och teknologins roll. Utifrån diskussioner inom antropologin om ’helande ritualer’ analyseras i avhandlingen de sociala och kulturella aspekterna av behandling med mekaniskt hjälphjärta. Studien visar att genom de rituella aspekterna av denna behandling, genereras och upprätthålls hoppet som en dygd. Den nya medicinska teknologins möjligheter rättfärdigas på så sätt som ett kulturellt accepterat sätt att hantera ovissheten vid svår hjärtsvikt och behandling med mekaniskt hjälphjärta. Även vid lyckade behandlingar, då patienternas liv räddas, blir de trots allt inte riktigt ’botade’ utan förblir bundna till den medicinska världen. Detta nya levnadssätt karakteriseras av en paradoxal och livslång balansgång mellan ovisshet och hopp.