Voluntarily Stopping Eating and Drinking: Systematic Review of Empirical Studies

Objective: To systematically review studies presenting quantitative data on the experiences of patients and providers engaged in VSED. Background: Voluntarily stopping eating and drinking (VSED) to purposefully accelerate the end of life is uncommon but likely accounts for thousands of deaths per year. A single systematic review of literature was published in 2014. Methods: We systematically searched English-language articles and books in MEDLINE/PubMed and reference lists of retrieved articles and books. Studies that provided empirical results from surveys or qualitative studies were selected. We obtained from each study publication year, study type, country, population source, sample size, outcomes, and results, and graded each on quality. Results: Of the 17 empirical publications not included in the 2014 review, 3 were conducted in the US. Eight surveys were rated as moderately high/high quality and six as moderately low/low quality. Incidence estimates ranged from 0.4%-1.7% of all deaths. VSED was generally attempted among the elderly, often 80+ year-olds. About half of participants had dementia or other conditions that would make them ineligible for medical aid in dying. Incapacitating depression was rare. The mean time to death was 10 days with a range of one to two weeks. Most experiences were considered satisfactory by the patient. Caregivers often found preparation for and the emotional toll from VSED challenging. Theoretical support for VSED was ubiquitous among health care professionals in Europe, who expressed the importance of palliative support. However, professional experience was lacking. Conclusion: VSED, albeit uncommon, still accounts for many, typically satisfactory, deaths. Little research to guide best practice is available, particularly in the United States. Caregivers and health care providers generally indicate support however, extensive preparation and caregiver assistance make the practice challenging. Practitioners express a need for training.