Experiences of caregivers who support a patient who elects voluntarily stopping eating and drinking (VSED) to hasten death

Abstract

Background Voluntarily stopping eating and drinking (VSED) is an ongoing choice to forego food and hydration to hasten death. VSED does not require clinician involvement, but caregiving is necessary as patients become weak and lose concentration as a result of dehydration. This study is the first to explore the experiences of VSED caregivers. Aim The aim of this thesis is to explore the experiences of informal caregivers (family or friends) who supported a patient through VSED, with supporting objectives to evaluate VSED caregiving against theoretical models of end-of-life caregiving and to compare VSED caregivers’ experiences with caregivers who have aided patients at the end of life, including other forms of hastened death. Methods The study included interviews with 24 caregivers of 20 individuals who attempted VSED. Inductive and deductive thematic analysis were used to analyse the experiences of VSED caregivers. These experiences are compared with results of two systematic reviews of studies on end-of-life and hastened death caregiving. Findings Caregivers believe that VSED is the best death available to the patient. Caregivers act as advocates and worry that the patient’s goals will be challenged by healthcare or legal authorities. Obtaining support from hospice helps legitimise VSED. Through the VSED process, caregivers carry the responsibility for the patient’s success as the patient becomes weaker. Finally, caregivers note that there is no social script to guide someone aiding a person who is slowly, deliberately trying to die: caregivers choose what roles to play, such as focusing on physical care or being emotionally present as the patient’s spouse or child. Conclusion Caregivers take responsibility for VSED patients’ success. Caregivers’ interaction with clinicians, community, and legal structures exceeds the scope of available caregiving theories. A socio-ecological model and the theory of bio-power can help illustrate how each layer of society affects VSED caregivers’ experience.