Background: Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED.
Objective: To explore the experiences of caregivers who supported a patient through VSED.
Methods: Qualitative study with thematic analysis of transcripts of semistructured interviews with 24 U.S. caregivers for 20 individuals who had attempted VSED.
Results: Analysis produced four themes: (1) Caregivers believe that VSED is the best death available to the patient. (2) Caregivers act as advocates and worry that the patient's goals will be challenged by health care professionals, the community, or legal authorities; obtaining support from a hospice is an important way to legitimize VSED. (3) Through the VSED process itself, caregivers carry the responsibility for the patient's success as the patient becomes weaker and loses focus. (4) Because there is no social script to guide the VSED process, caregivers choose what roles to play during VSED, such as focusing on physical care or being emotionally present as the patient's spouse or child.
Conclusions: Caregivers face unique challenges in helping patients undertake VSED. Many are uncertain about whether they will receive support from clinicians or the community. Support from health professionals may improve caregiver confidence and reduce worry.
Voluntarily stopping eating and drinking is a means of hastening death. Unlike euthanasia or medical aid in dying, which are available only in certain jurisdictions and with assistance from health care
professionals, the ability to die by voluntarily stopping eating and drinking is determined by ongoing patient choice, although clinical and caregiver support is recommended. Few studies have examined the incidence of
patients choosing to stop eating and drinking; studies in the Netherlands and United States suggest patients hoosing this route have concerns about both physical and existential suffering. This article presents an
overview of voluntarily stopping eating and drinking, including guidance for clinicians, legal permissibility, and ethical discussions about whether the act constitutes suicide and how clinicians might respond to requests for information or support.
Advance care planning is important for all adults. To facilitate conversations about patients' preferences, clinicians need to be aware of how identities and relationships may shape priorities and concerns. This qualitative study solicited advance care planning priorities among lesbian, gay, bisexual, and transgender (LGBT) individuals to explore whether sexual orientation and gender identity shape concerns about care at the end of life. Data were collected from 30 LGBT adults on the east coast through focus groups and interviews using purposive sampling. Transcribed discussions were analyzed using grounded theory. Participants regarded end of life as any period after the loss of decision-making capacity and felt strongly that individuals in that state would need an advocate to ensure that they were cared for with respect and dignity; many lacked confidence that the health care system would do so without prompting. Participants who had partners or children hoped that family would serve as advocates but worried that they might outlive their partners; participants who were single worried that the advocate role was too great a burden to ask of friends or distant relatives. Providers can encourage open dialogue and more fully capture LGBT patients' needs through sensitive, respectful communication and by creating environmental signals of LGBT inclusivity.