Heart failure (HF) affects >6 million Americans, and most forms of HF tend to present in older age (Benjamin et al., 2019). Advanced age and non-cardiac morbidities make older adults ineligible for heart transplantation, leading to an increased number of individuals with advanced heart failure (AHF) being considered for a left ventricular assist device (LVAD).
The goal of a LVAD is to extend life expectancy, improve physical strength and quality of life, and allow individuals to be discharged home. As a standard practice, most LVAD programs require individuals to appoint a family member or close friend as the designated caregiver before a LVAD implant (Kitko et al., 2013; Magid et al., 2016). What makes LVAD caregiving a unique and challenging task is the intensive and complex demands of caregiving requiring specialized training and a long-term commitment (Bidwell et al., 2018).
The aim of this guest editorial is to apply an existential philosophical perspective to address the following questions: What influences the motives of decision making among LVAD caregivers? What are the ethical considerations in the caregiver decision-making process? How can nurse scientists facilitate a better understanding of caring experience for individuals with a LVAD?
Existentialism emphasizes the individual's unique position as a self-determining agent. Existential philosophy is concerned with the meaning of human experience (Kim, 2006). Key concepts in existential philosophy include The Other, the influence of culture on thinking, and the influence of ethics on decision making.
Jean-Paul Sartre (2007), a French existential philosopher, adapted the phenomenological concept of The Other, including any entities outside of the individual, such as any human being, institution, social interaction, social influence, or value system (Corey & McCurry, 2017). Existential philosophy recognizes the significant influence of social and societal expectations in caregiving decision making. In AHF, do designated caregivers have a choice when their loved ones need a LVAD? Caregivers choose the most socially acceptable action based on what they interpret is acceptable in the eyes of The Other. As AHF progresses, some caregivers do not perceive a LVAD implant as “a decision.” Instead, a LVAD is the only option to sustain their loved one's life (Birriel et al., 2019).
The existential perspective acknowledges the tension between making choices freely while assuming responsibilities and the natural consequence of human actions (Farran, 1997). When making decisions for a family member to receive a LVAD, caregivers are asked to confront a sophisticated technology with not only the potential to extend life expectancy and improve quality of life but also risks for complications and burdens. Existentialism concedes that individuals' values, meanings, individualism, and relationship with The Other are shaped by individuals' culture. The caregiver may place different values on the quality of life (e.g., symptoms, physical function, social interactions) and burdens of therapy (e.g., lifestyle adjustment, independency, direct and indirect costs, caregiver burden) than the values of The Other. In the process of LVAD caregiving decision making, the choice and motive to assume the caregiver responsibilities are a complex mixture of love, social expectations, obligation, responsibility, values of improving length and quality of life, and powerlessness.
Existentialism provides insights into the extrinsic influences of caregivers in health care decision making. Under emergent clinical situations, ethical consideration should be applied when caregivers are required to decide on a life versus death option. Kirkpatrick et al. (2015) found that some caregivers had to “make” a decision for their loved ones to receive a LVAD in the critical care unit with heavy emotional weight. Is it ethical to ask caregivers to make critical life-sustaining decisions under such circumstances? In caregivers, this perceived lack of choice and feelings of powerlessness were associated with high levels of burden and adverse health consequences (Quinn et al., 2012). Perhaps alternative approaches, such as use of temporary treatment options (e.g., percutaneous ventricular support, extracorporeal membranous oxygenation), would allow for stabilization of patients and provide time for informed medical decision making to occur.
In nursing science, the existential perspective provides valuable insight into the caregiver experience, caregiving needs, and how nurses might meet these needs (Corey & McCurry, 2017). When caregivers struggle to make decisions about their own health, commitment to long-term responsibility of LVAD caregiving, and the “best” option for their loved ones, the nurse viewed as The Other is in an undeniable position of influencing caregiver experience and actions, both in positive and negative fashion. Using an existential philosophical approach will allow clinicians to recognize the individual experience as a caregiver, the complexity of the caregiving demands, and recognize their own role as The Other in influencing caregiver decision making. Through an existential philosophical lens, nurse scientists could explore and articulate the meaning and essence of the individual experience and gain an in-depth understanding of caregiver experiences while caring for individuals with a life-sustaining device.
The number of older adults with AHF requiring a LVAD will continue to grow. When assuming the role of LVAD caregiving, caregivers are in the midst of searching for a balance while coping with occurring adjustment and transitions. For some caregivers, lack of knowledge of caregiving responsibilities, financial resources, and social support are additional burdens (Bidwell et al., 2018; Kirkpatrick et al., 2015; Marcuccilli et al., 2014; Marcuccilli & Casida, 2011).
Current evidence indicates that caregivers of LVAD recipients experience high levels of strain, psychological stress, and reduced health-related quality of life (Bidwell et al., 2017, 2018; Kirkpatrick et al., 2015; Marcuccilli et al., 2014; Marcuccilli & Casida, 2011). However, no studies have been published exploring interventions to address burdens and health-related needs of caregivers. Future studies could include: (1) how to best promote positive caregiver health-related outcomes, including the identification of strategies that caregivers can use to adapt to the caregiving role; (2) exploration of approaches clinicians can implement to support caregiver health and well-being; and (3) exploration of caregiver needs at different points in time after device implant. We care, as clinicians and scientists, to address LVAD caregiving challenges in navigating the complex and intensive decision-making process, obligations, and responsibilities.
Tao Zheng, MN, RN, CCRN-CSC-CMC,
PhD in Nursing Science Student and
Omics and Symptom Science Training
University of Washington, School of Nursing
University of Washington Medical Center
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