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Primary Care Patients Hastening Death by Voluntarily Stopping Eating and Drinking

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Primary Care Patients Hastening Death by Voluntarily Stopping Eating and Drinking Primary Care Patients Hastening Death by Voluntarily Stopping Eating and Drinking 1 Eva E. Bolt, MD ABSTRACT 1 Martijn Hagens, MSc PURPOSE Little is known about the role family physicians play when a patient Dick Willems, MD, PhD2 deliberately hastens death by voluntarily stopping eating and drinking (VSED). The purpose of this study was to gain more insight for family physicians when Bregje D. Onwuteaka-Philipsen, confronted with patients who wish to hasten death by VSED. We aimed to 1 PhD describe physicians’ involvement in VSED, to describe characteristics and motives 1Department of Public and Occupational of their patients, and to describe the process of VSED in terms of duration, as Health, EMGO Institute for Health and well as common symptoms in the last 3 days of life. Care Research, VUmc Expertise Center for Palliative Care, VU University Medical METHODS We undertook a survey of a random national sample of 1,100 family Center, Amsterdam, The Netherlands physicians (response rate 72%), and 500 of these physicians received questions about their last patient who hastened death by VSED. 2Department of General Practice, Section of Medical Ethics, Academic Medical Cen- RESULTS Of the 978 eligible physicians, 708 responded (72.4%); 46% had cared ter, University of Amsterdam, Amsterdam, for a patient who hastened death by VSED. Of the 500 physicians who received The Netherlands the additional questions, 440 were eligible and 285 (64.8%) responded; they described 99 cases of VSED. Seventy percent of these patients were aged older than 80 years, 76% had severe disease (27% with cancer), and 77% were depen- dent on others for everyday care. Frequent reasons for the patients’ death wish were somatic (79%), existential (77%), and dependence (58%). Median time until death was 7 days, and the most common symptoms before death were pain, fatigue, impaired cognitive functioning, and thirst or dry throat. Family physi- cians were involved in 62% of cases. CONCLUSIONS Patients who hasten death by VSED are mostly in poor health. It is not unlikely for family physicians to be confronted with VSED. They can play an important role in caring for these patients and their proxies by informing them of VSED and by providing support and symptom management during VSED. Ann Fam Med 2015;13:421-428. doi: 10.1370/afm.1814. INTRODUCTION atient autonomy and control are important themes at the end of life,1-3 and losing control and dependence are leading factors asso- Pciated with a desire to hasten death.4,5 Moreover, having control over the dying process is identified as a key attribute of a good death in Western society.1,2,6,7 For people who suffer unbearably and wish to hasten death, voluntary stopping of eating and drinking (VSED)8-11 is described as a feasible method for them to control the timing and circumstances of their death. Ivanovic´ et al defined VSED as “an action of a competent, capacitated person, who voluntarily and deliberately chooses to stop Conflicts of interest: authors report none. eating and drinking with the primary intention to hasten death because unacceptable suffering persists.”12 In contrast to physician-assisted suicide CORRESPONDING AUTHOR (PAS), approval and support of a physician is not necessary in VSED, Eva Elizabeth Bolt, MD expanding patient autonomy.13,14 Nevertheless, in practice patients who opt Dept. Public and Occupational Health, for VSED often require medical support.15,16 VUmc Physicians and nurses confronted with VSED may feel moral unease Van der Boechorstraat 7 15,17,18 1081 BT Amsterdam and can be reluctant to support the patient in a path leading to death. The Netherlands Most experts agree, however, that patients are free to refuse food and [email protected] fluid, much as they are free to refuse medical treatment. A physician who ANNALS OF FAMILY MEDICINE ✦ WWW.ANNFAMMED.ORG ✦ VOL. 13, NO. 5 ✦ SEPTEMBER/OCTOBER 2015 421 PATIENTS HASTENING DEATH is convinced that the decision is well-considered is METHODS morally obliged to honor it.8,9,15 Physicians may even Design and Population have a duty to become involved as caregivers, because This study was conducted among family physicians every person has the right to relief of distress.8,15,19 because they can report on cases in home settings, Involvement may consist of counseling and giving residential homes, and hospices. We expected family information about VSED, as well as symptom man- physicians to experience VSED infrequently, so we agement and support during VSED.9,19,20 Whether used a retrospective approach. We mailed a question- palliative sedation in case of refractory symptoms is naire to a random nationwide sample of 1,100 family acceptable is a subject of debate.16 physicians; of these physicians, we mailed 500 a more In 1993, Bernat et al described the need for system- detailed questionnaire. Addresses were obtained from atic research on the process of VSED to help physi- a national databank.25 Inclusion criteria were working cians understand patients’ needs.9 Two decades later as family physician in the Netherlands in the last year, this call has hardly been answered, even though VSED and having a registered work address. According to occurs quite frequently (0.4% to 2.1% of deaths in the Dutch law, the study did not require review by an eth- Netherlands).12,21,22 Although much has been written on ics committee because participants were not subjected VSED, the literature mostly comprises commentaries to procedures or required to follow rules of behavior.26 and case reports rather than original research.3,9,10,12,15,20 Most authors draw a positive picture of VSED, but Data Collection they also describe the need for palliative care.9,11,15,23 The questionnaire was pilot tested with 12 physi- They mention possible serious complications, such as cians. Data collection took place from October 2011 a prolonged dying phase, thirst or hunger, agitation, to June 2012, and 2 reminders were sent to nonre- delirium, and overburdened family members.10,11,14,17,24 sponders. The questionnaires were unnumbered and There are no data, however, on the prevalence of anonymous. In the questionnaire, VSED was defined symptoms for which palliative care is indicated.12 The as “deliberately stopping eating and drinking with the only studies reporting data on multiple patients choos- explicit intention to die (not in the context of anorexia ing death by VSED have been results of surveys by or cachexia due to terminal disease).” All physicians Chabot11 and Ganzini et al.23 They have reported a were asked whether a patient had ever died as a con- comfortable death within 15 days for most patients, sequence of VSED. They were further asked whether but they did not describe complications or physician it was conceivable that they would apply (or had ever involvement. Duration until death may be associated applied) palliative sedation for such a patient, and with the patient’s health condition.22 whether they had ever suggested the possibility of Patients who elect to die by VSED may be at risk VSED to a patient with a wish for PAS. Finally, the of not receiving appropriate palliative care. Because of questionnaire included questions on age, sex, religion, the autonomous nature of VSED, patients might not work experience, additional expertise on palliative involve their physicians,11 physicians might be reluc- care, and experience with (and attitude toward) PAS. tant to become involved,10,18 and physicians might lack We collected data on individual VSED cases from knowledge of how to care for these patients.12 Con- a subsample of 500 of the initial respondents. These cerns about the risk of patients not receiving appropri- 500 family physicians received additional questions ate care prompted us to undertake this exploratory about the last case of VSED in which they were the study to gain insight into current practices. primary treating physician. This questionnaire included First, we wanted to describe VSED. Such information multiple-choice questions about their patients’ charac- can be used by family physicians to counsel and inform teristics: age, marital status, place of residence, Eastern patients and proxies, and to help physicians understand Cooperative Oncology Group (ECOG) performance patients’ needs during VSED. We further wanted to status,27 life expectancy (before VSED), diagnosis understand which patients hasten death by VSED and (cancer, another physical disease, psychiatric disease, their motives, as well as what happens during VSED in early-stage dementia, or no severe physical/psychiatric terms of symptoms and duration of the dying process disease), and level of mental competence (competent, and what factors are associated with time until death. somewhat competent, incompetent, don’t know). Second, we aimed to describe the involvement of Questions regarding patients’ decisions to elect family physicians in VSED. We were interested to find VSED related to motives for wanting to die (derived out how many family physicians have experienced from studies on euthanasia requests),28,29 whether the VSED, what role they play in VSED, and whether fam- family physicians suggested the possibility of VSED, ily physicians find it conceivable to administer pallia- whether the patients had previously requested PAS, and tive sedation in VSED. whether the family physicians agreed with the patients’ ANNALS OF FAMILY MEDICINE ✦ WWW.ANNFAMMED.ORG ✦ VOL. 13, NO. 5 ✦ SEPTEMBER/OCTOBER 2015 422 PATIENTS HASTENING DEATH decision (yes/mostly or no/barely). The physicians were Reasons for exclusion were: untraceable (70), no longer asked about involvement of others, whether the family working as family physician (46), being on leave (3) and physicians were informed in advance, and whether they death (3). The response rate was 72.4% (n = 708). Of the and/or proxies were involved before or during VSED 270 physicians who did not complete the questionnaire, (including palliative sedation).
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