Voluntary stopping of eating and drinking at the end of life – a ‘systematic search and review’ giving insight into an option of hastening death in capacitated adults at the end of life

Abstract

BackgroundThe terminally ill person’s autonomy and control are important in preserving the quality of life in situations of unbearable suffering. Voluntary stopping of eating and drinking (VSED) at the end of life has been discussed over the past 20 years as one possibility of hastening death. This article presents a ‘systematic search and review’ of published literature concerned with VSED as an option of hastening death at the end of life by adults with decision-making capacity.MethodsElectronic databases PubMed, EBSCOhost CINAHL and Ovid PsycINFO were systematically searched. Additionally, Google Scholar was searched and reference lists of included articles were checked. Data of the included studies were extracted, evaluated and summarized in narrative form.ResultsOverall, out of 29 eligible articles 16 were included in this review. VSED can be defined as an action by a competent, capacitated person, who voluntarily and deliberately chooses to stop eating and drinking with the primary intention of hastening death because of the persistence of unacceptable suffering. An estimated number of deaths by VSED was only provided by one study from the Netherlands, which revealed a prevalence of 2.1% of deaths/year (on average 2800 deaths/year). Main reasons for patients hastening death by VSED are: readiness to die, life perceived as being pointless, poor quality of life, a desire to die at home, and the wish to control the circumstances of death. The physiological processes occurring during VSED and the supportive care interventions could not be identified through our search.ConclusionsThe included articles provide marginal insight into VSED for hastening death. Research is needed in the field of theory-building and should be based on qualitative studies from different perspectives (patient, family members, and healthcare workers) about physiological processes during VSED, and about the prevalence and magnitude of VSED. Based on these findings supportive care interventions for patients and family members and recommendations for healthcare staff should be developed and tested.

Primary Care Patients Hastening Death by Voluntarily Stopping Eating and Drinking

“…Ivanović et al defined VSED as "an action of a competent, capacitated person, who voluntarily and deliberately chooses to stop eating and drinking with the primary intention to hasten death because unacceptable suffering persists." 12 In contrast to physician-assisted suicide (PAS), approval and support of a physician is not necessary in VSED, expanding patient autonomy. 13,14 Nevertheless, in practice patients who opt for VSED often require medical support.…”

“…9 Two decades later this call has hardly been answered, even though VSED occurs quite frequently (0.4% to 2.1% of deaths in the Netherlands). 12,21,22 Although much has been written on VSED, the literature mostly comprises commentaries and case reports rather than original research. 3,9,10,12,15,20 Most authors draw a positive picture of VSED, but they also describe the need for palliative care.…”

“…12,21,22 Although much has been written on VSED, the literature mostly comprises commentaries and case reports rather than original research. 3,9,10,12,15,20 Most authors draw a positive picture of VSED, but they also describe the need for palliative care. 9,11,15,23 They mention possible serious complications, such as a prolonged dying phase, thirst or hunger, agitation, delirium, and overburdened family members.…”

“…10,11,14,17,24 There are no data, however, on the prevalence of symptoms for which palliative care is indicated. 12 The only studies reporting data on multiple patients choosing death by VSED have been results of surveys by Chabot 11 and Ganzini et al 23 They have reported a comfortable death within 15 days for most patients, but they did not describe complications or physician involvement. Duration until death may be associated with the patient's health condition.…”

“…Because of the autonomous nature of VSED, patients might not involve their physicians, 11 physicians might be reluctant to become involved, 10,18 and physicians might lack knowledge of how to care for these patients. 12 Concerns about the risk of patients not receiving appropriate care prompted us to undertake this exploratory study to gain insight into current practices.…”