Objectives
- •Describe the types of caregiving needed by individuals electing VSED.
- •Describe the experiences of "family" caregivers supporting an individual who elects VSED.
Original Research Background
Voluntarily stopping eating and drinking (VSED) is a method for individuals with serious illness to control the timing and means of their death. The process requires clinical and social support, but no research has investigated the experience of caregivers supporting someone through VSED.
Research Objectives
To explore the experiences of individuals who have supported a patient through VSED.
Methods
This qualitative study involved semi-structured interviews with 24 former VSED caregivers in the United States between November 2018 and June 2019. Interviews represented 20 VSED attempts (19 deaths) between 2009-2018. Interviews were transcribed and analyzed using thematic analysis.
Results
Caregivers included spouses, adult children, and neighbors. Patients' diagnoses included cancer, COPD, ALS, and early dementia. All patients were enrolled in hospice or hired professional health aides. Caregivers supported patients' decision to choose a “less bad” death. Types of care included help with medical and legal preparations, physical assistance such as help toileting or turning in bed, symptom management for thirst and anxiety, medication management, and support and encouragement to refrain from ingesting fluids. Caregivers frequently had time to prepare for VSED and had agency in choosing their role (e.g. full caregiving vs focus on being present as spouse). The duration of VSED (median = 10 days, range 2-28) offered opportunities for closure, but caregivers remained vigilant for events that could derail the patient's efforts (e.g. falls requiring emergency care). Caregivers perceived deaths as comfortable and consistent with patients' wishes and felt relieved and grateful to have helped.
Conclusion
VSED requires intensive, hands-on caregiving, but the certainty of death offers opportunity for closure.
Implications for Research, Policy or Practice
Little is known about the VSED process. These findings may inform practice for clinicians caring for individuals with serious illness, including early dementia, who plan to control the timing and means of their death.
Article info
Identification
Copyright
© 2019 Published by Elsevier Inc.
User license
Elsevier user license | How you can reuse 
Elsevier's open access license policy
Elsevier user license
Permitted
For non-commercial purposes:
- Read, print & download
- Text & data mine
- Translate the article
Not Permitted
- Reuse portions or extracts from the article in other works
- Redistribute or republish the final article
- Sell or re-use for commercial purposes
Elsevier's open access license policy
