OBJECTIVE: We aimed to determine how often patients who choose voluntary stopping of eating and drinking (VSED) are accompanied by Swiss family physicians, how physicians classify this process, and physicians' attitudes and professional stance toward VSED.
METHODS: We conducted a cross-sectional study between August 2017 and July 2018 among 751 practicing family physicians in Switzerland (response rate 74%; 70.7% men; average age 58 (±9) years). We used a standardized evidence-based questionnaire for the survey.
RESULTS: VSED is well-known among family physicians (81.9%), and more than one-third (42.8%) had accompanied at least one patient during VSED. In 2017, 1.1% of all deaths that occurred in Swiss nursing homes or in a private home were owing to VSED. This phenomenon was classified as a natural dying process (59.3%), passive euthanasia (32.0%), or suicide (5.3%).
CONCLUSIONS: Although about one in three Swiss family physicians have accompanied a person during VSED, family physicians lack sufficient in-depth knowledge to address patients and their relatives in an appropriate manner during the process. Further training and development of practice recommendations are needed to achieve more standardized accompaniment of VSED.
BACKGROUND: Eating and drinking are essential also in social life. Nutrition and hydration (N&H) at end of life are often a source of discussion and distress. Stopping eating and drinking is a defining element of the dying phase, however, this time point is not well defined. The aim of this retrospective analysis was to investigate whether such a time point can be detected, whether there are specific characteristics associated.
METHODS: The time point when patients stopped oral intake was analyzed in relation to time until death on a specialist palliative care ward (sPCW) of a tertiary comprehensive cancer center. This "tipping point" (TP) was defined as the time point when total food intake fell below 25% of normal solid intake (TP-S) and "tipping point fluid" (TP-F) when fluid intake fell below 500 ml/day (oral/intravenous/subcutaneous). Demographic and medical data, the N&H-module in the electronic patient management system and the daily multiprofessional treatment notes at TP (±3 days) were analyzed in all patients cared on the sPCW between 1/15 and 9/17.
RESULTS: In these 32 months, of 1194 treated patients 683 (57%) died on the ward. A TP-S was identified in 291 patients prior to dying on the ward (43%) with a median time of six days from to TP-S death. In 75% of these patients, TP-S occurred within two weeks prior to death (range: 0-5 weeks). A TP-F was detected in 202 patients (30%) with a median TP-F-time of two days prior to death. In 75% of these patients, the TP-F was within three days prior to death (range: 0-14 days). The cancer entities in patients in whom TPs could be detected were heterogeneous. No specific disease-related or sociodemographic characteristics for patients with TPs could be determined. In the daily treatment notes, oral and swallowing problems, taste alterations and discussions about stopping artificial nutrition were mentioned.
CONCLUSION: In less than half of dying patients a definitive TP could be detected. In these patients, TP-S occurred within two weeks and TP-F within few days before death. No specific characteristics of patients with TPs could be observed. This indicates the individual nature of the trajectory at end of life.
AIM: To better understand the participation of nursing staff in end-of-life nutrition and hydration decision-making in an American nursing home.
DESIGN: A qualitative exploration with ethnographic focus.
METHODS: In April 2017, in-person, semi-structured interviews were performed with 19 nursing staff members in a nursing home located in the south-eastern United States. Additional information was gathered through participant observation during interviews and review of organizational and regulatory policies. Transcripts were coded and analysed using qualitative methods described by Roper and Shapira (2000).
RESULTS: Three primary themes relating to nursing staff participation in end-of-life nutrition and hydration decision-making were identified: (a) Formal decision-making: decisions made and implemented by persons with the authority to make legal and binding care decisions in the nursing home setting; (b) Informal decision-making: decisions not requiring medical orders; and (c) Influential factors: factors that influence actions of nursing staff.
CONCLUSION: A variety of factors have an impact on nursing staff participation in end-of-life nutrition and hydration decision-making. Participation is closely aligned with the type of decision, whether formal or informal, and role, whether Certified Nursing Assistant/Aide, Licensed Practical/Vocational Nurse, or Registered Nurse.
IMPACT: End-of-life nutrition and hydration decision-making in nursing homes differs from decision-making in other care settings and presents a challenge globally. Interventions that support the participation of nursing staff in end-of-life nutrition and hydration decision-making have the potential to positively impact the experiences of residents and family members faced with these issues in the nursing home setting.
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.
Purpose: To characterize the practice of subcutaneous hydration provision in the Beer-Sheva home care hospice unit. We also explore the potential connection between the provision of subcutaneous hydration and the incidence of death rattle.
Methods: This was a prospective observational study involving 120 hospice patients. During the 6 days before death, hospice staff recorded whether or not fluids were administered orally and/or subcutaneously; the duration, timing, and quantity of fluid administration; the incidence, timing, and duration of death rattle; and whether medications that can affect death rattle were given.
Result: Fifty-three percent of the patients received subcutaneous hydration. The mean daily volume administered in the hydration group was 434 ml. There was a significant association between the duration of treatment in the hospice unit and provision of subcutaneous hydration (mean of 51 days in hydration group vs. 31 days in non-hydration group, p = 0.03). Although not statistically significant, males were more likely to receive subcutaneous hydration than females (62% of males vs. 46% of females, p = 0.09). There was a higher incidence of death rattle in men compared to women (54.7% in men vs. 32.8% in women, p = 0.025). A statistically significant association between death rattle and the provision of subcutaneous hydration wasn’t demonstrated.
Conclusion: The decision of whether to provide subcutaneous hydration is individualized taking into consideration the values of the patients and their families. The provision of 500 ml per day of subcutaneous saline during the last 6 days of life does not significantly increase the incidence of death rattle.
Increased attention is being paid to "dementia directives," advance directives tailored to persons with dementia that outline what treatments an individual with dementia might wish to receive or forgo should they lose capacity. Particular focus has been placed on the request to have assisted oral feedings withheld, the so-called Stopping of Eating and Drinking by Advance Directive (SED by AD), the purpose of which is to hasten death. This article reviews the available literature regarding the practice of SED by AD and explores the clinical and ethical aspects as they present at the bedside. Our review aims to show that practical, clinically applicable ways to approach such requests must be developed in order to balance the fundamental principles at play.
OBJECTIVE: The objective of this paper is to explore the ethical and legal validity of advance directives that request the voluntary stopping of eating and drinking against a backdrop of late-stage dementia.
METHOD: Doctrinal research and analysis of primary and secondary materials including Australian legislation, Australian case law and journal articles was undertaken.
RESULTS: There is legal uncertainty in Australia around whether an advance directive to voluntarily stop eating and drinking will be followed should the adult become incompetent.
CONCLUSION: Voluntary stopping of eating and drinking should be viewed in law as a form of "treatment" that competent adults can nominate in advance directives, thereby providing dementia patients with the opportunity to choose in advance, if they wish, to end their life legally, with dignity and comfort, and in a manner that does not implicate others in criminal behaviour such as assisted suicide, acceleration of death or euthanasia.
AIMS: To assess the incidence of voluntary stopping of eating and drinking in long-term care and to gain insights into the attitudes of long-term care nurses about the voluntary stopping of eating and drinking.
DESIGN: A cross-sectional study.
METHODS: Heads of Swiss nursing homes (535; 34%) answered the Online-Survey between June and October 2017, which was evaluated using descriptive data analysis.
RESULTS: The incidence of patients who died in Swiss nursing homes by voluntarily stopping eating and drinking is 1.7% and 67.5% of participants consider this phenomenon highly relevant in their daily work. Most participants (64.2%) rate voluntary stopping of eating and drinking as a natural death accompanied by health professionals and patients are also granted the right to care (91.9%). This phenomenon is expected by the participants less at a young age and more in old age.
CONCLUSION: Participants' overall views on the voluntary stopping of eating and drinking are very positive, whereas it is assumed that voluntary stopping of eating and drinking is a phenomenon of old age. Professionals still lack sufficient knowledge about this phenomenon, which could be clarified through training. International Registered Report Identifier (IRRID): DERR1-10.2196/10358.
IMPACT: Voluntary stopping of eating and drinking is much discussed interprofessional, but there is a lack of knowledge on how this is perceived in the context of long-term care and about the incidence of the phenomenon. Voluntary stopping of eating and drinking is rare but noticeable end-of-life practises that is considered by professionals to be mainly dignified and peaceful, although moral concerns make it difficult to accompany. These findings call on long-term care institutions to discuss voluntary stopping of eating and drinking as an end-of-life practice. Positioning on the issue provides clarity for staff and patients and promotes to develop standardized care.
The Ethics Subcommittee of AMDA-The Society for Post-Acute and Long-Term Care Medicine ("The Society") presents arguments for and against Stopping Eating and Drinking by Advance Directives (SED by AD). SED by AD is a type of advance directive in which a proxy is instructed to stop offering food and fluids to a person when they reach a certain stage of dementia. Although most conversations regarding SED by AD focus on patient autonomy and the right to determine one's care, we propose that the ethical principle of justice-the obligation to treat all individuals equally regardless of race, gender, and physical or cognitive ability-is the decisive principle in this controversy. We also suggest that implementing SED by AD can violate a physician's obligation to beneficence and nonmaleficence. On the other hand, we identify with the families of our patients who see the refusal to follow an advance directive as an injustice of the highest order. In the end, The Society is convinced that no choice can be made here without practicing an injustice: if one refuses to implement SED by AD, one violates the autonomy of the person who drew up the advance directive. If, on the other hand, one refuses food and fluid to a resident who still accepts food, one risks practicing an injustice against that person as they are now. Recognizing that we have the greatest responsibility to our patients as they present to us in the residential setting, The Society recommends against implementing SED by AD in residents who still accept food and fluids, implementing instead, a policy of comfort feeding for those with advanced dementia.
BACKGROUND: Thirst is prevalent among patients in intensive care units. A research-based "thirst bundle" was shown to significantly decrease thirst in these patients.
OBJECTIVE: To implement a research-based thirst intervention performed by intensive care unit nurses and patients' family members.
METHODS: Nurses and family members were taught the thirst intervention through video training and project team reinforcement. The intervention was performed by nurses for 123 patients and by family members for 13 patients. Thirst was measured with a numeric rating scale of 0 to 10, a word scale of 0 to 3, or "yes/no" answers, whichever was easiest for the patient. Inferential statistics were used to assess changes in thirst scores over time. Also assessed were nurse and family member burden levels, family level of satisfaction, and patient enjoyment.
RESULTS: Thirst scores on the numeric rating scale decreased significantly: from a mean (SD) of 7.9 (2.0) before to 3.9 (2.7) after the intervention for nurses (P < .001); and from 9.2 (1.5) to 5.3 (2.6) for family members (n = 13; P = .002). Word scale scores also decreased significantly, from a median (interquartile range) of 3 (3-3) before to 2 (1-2) after the intervention for nurses (P < .001). Most patients (96%) reported enjoying the procedure. Median burden levels were less than 2 on a numeric rating scale of 0 to 10.
CONCLUSIONS: The palliative "thirst bundle" significantly alleviated patients' thirst and resulted in little caregiver burden. Further efforts are warranted to incorporate this intervention into intensive care unit practice.
OBJECTIVES: At the end of life oral fluid intake is often reduced. Consensus about the most appropriate management for terminally ill patients with limited oral fluid intake is lacking. The objective of this study is to investigate to what extent the amount of fluid intake, preceding and during the dying phase, is related to the occurrence of death rattle and terminal restlessness.
METHODS: A multicentre prospective observational study was performed. Data on the occurrence of death rattle and terminal restlessness, fluid intake and opioid use of patients expected to die within a few days or hours were collected.
RESULTS: 371 patients were included. Death rattle was reported at least once in 40% (n=149) of patients during the dying phase. Death rattle occurrence was not associated with the amount of fluid intake during the days before dying. Terminal restlessness was reported in 26% of patients (n=96). Terminal restlessness was not associated with a lower amount of fluid intake during the days before dying. Terminal restlessness during the last 24 hours of life was associated with a higher amount of fluid (ie, >250 mL/day) during 48–25 hours before death.
CONCLUSIONS: Caution with fluid intake to prevent development of death rattle does not seem to be necessary. Our study suggests that a higher amount of fluid intake during 48–25 hours before death may be associated with the occurrence of terminal restlessness during the last 24 hours of life. These results suggest that actively providing dying patients with artificial fluid may not be beneficial.
Palliative care concentrates on preventing and relieving suffering by reducing the severity of disease symptoms. Consistent treatment of pain and distress must therefore be an integral component of every palliative care concept. In this review non-pharmacological and pharmacological measures for pain and distress management in the context of palliative neonatal care are summarised. Furthermore, recommendations are given focusing on two special palliative neonatal care settings: compassionate extubation and withdrawing artificial nutrition and hydration.
The number of people living with Alzheimer disease and other dementias continues to grow because of the aging of the US population. Increasingly, the issue of patient- and/or surrogate-directed withholding of oral, hand-fed food and fluids in cases of late-stage dementia is confronting caregivers. Major media outlets have covered several cases wherein patients with explicit directives or clear surrogate decision making were not allowed to face the end of their lives according to their wishes. Ethical and legal scholars, as well as many end-of-life advocacy groups, are working to develop a framework and provide guidance in these cases. A local hospice organization was faced with these ethical deliberations when an activated proxy decision maker advocated for caregivers to stop hand feeding an incapacitated patient with end-stage dementia. In this article, this case is summarized, and this important ethical issue is presented in the setting of a literature review and nursing implications.
Les personnes en état végétatif permanent posent des questions éthiques, sociétales notamment sur la poursuite ou non de la nutrition et de l'hydratation artificielles. Dans cet article, l'auteur explore les processus décisionnels à l'oeuvre dans ces situations.
Anorexia, weight loss and muscle wasting commonly affect people approaching the end of life. It is critical that clinicians caring for people with advanced illness and progressive frailty can assess the nutritional and hydration needs of these people, engage them in shared decision making and support them to plan ahead regarding their nutritional care preferences as their health deteriorates.
BACKGROUND: "To die with dignity" has reached the significance of a core value in democratic societies. Based on this unconditional value, people require autonomy and care. "Voluntary stopping of eating and drinking" (VSED) represents an alternative to assisted suicide because no one else is involved in the action of death fastening, even though from outside, it might be considered as an extreme form of passive euthanasia. However, there are no data available about the prevalence and frequency of either explicit VSED or the implicit reduction of food and liquid in Switzerland. The responsible and independent ethics committee of the Greater Region of Eastern Switzerland (EKOS 17/083) approved this study.
OBJECTIVE: The objectives of the study were to research the prevalence and frequency of different types (implicit and explicit) of VSED in Switzerland; to explore the experiences, attitudes, handling and recommendations made by palliative care experts; to develop a practical recommendation about VSED, which will be validated by experts in Delphi rounds.
METHODS: This protocol describes a convergent mixed-method design to answer the research questions. In the first step, a cross-sectional trilingual survey (in German, French, and Italian) will be carried out to obtain a comprehensive representative picture of VSED in Switzerland. In the second step, qualitative research will be carried out by focus group interviews with palliative care experts. The interviews will be recorded, transcribed, and analyzed using generic coding, and embedded in an explorative descriptive qualitative approach. Based on the results of the first two steps, a practical recommendation will be developed. Experts will validate the practical recommendation in Delphi rounds.
RESULTS: The enrolment was completed in summer of 2018. Data analysis is currently underway and the first results are expected to be submitted for publication in the end of 2019.
CONCLUSIONS: The results of this study will provide important information about the prevalence and frequency of VSED as well as the interpretation of palliative care experts about handling VSED in daily work. Furthermore, the practice recommendation will help professionals and institutions to improve the quality of care in patients and their relatives who made the decision to fasten death by VSED.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/10358.
Background: Chronically ill persons experience conditions of life that can become unbearable, resulting in the wish to end their life prematurely. Relatives confronted with this wish experience ambivalence between loyalty to the person's desire to die and the fear of losing this person. Caring for a person during the premature dying process can be morally challenging for nurses. One way to end one's life prematurely is Voluntary Stopping of Eating and Drinking (VSED).
Methods: This embedded single case study explored the experiences of registered nurses (embedded units of analysis: ward manager, nursing manager, nursing expert) and relatives who accompanied a 49-year-old woman suffering from multiple sclerosis during VSED in a Swiss long-term care institution (main unit of analysis). By means of a within-analysis, we performed an in-depth analysis of every embedded unit of analysis and elaborated a central phenomenon for each unit. Afterwards, we searched for common patterns in a cross-analysis of the embedded units of analysis in order to develop a central model.
Results: The following central concept emerged from cross-analysis of the embedded units of analysis: As a way of ending one's life prematurely, VSED represents an unfamiliar challenge to nurses and relatives in the field of tension between one's personal attitude and the agents' concerns, fears and uncertainties. Particularly significant is the personal attitude, influenced on the one hand by one's own experiences, prior knowledge, role and faith, on the other hand by the VSED-performing person's age, disease and deliberate communication of the decision. Depending on the intention of VSED as either suicide or natural dying, an accepting or dismissing attitude evolves on an institutional and personal level.
Conclusions: To deal professionally with VSED in an institution, it is necessary to develop an attitude on the institutional and personal level. Educational measures and quality controls are required to ensure that VSED systematically becomes an option to hasten death. As VSED is a complex phenomenon, it is necessary to include palliative care in practice development early on and comprehensively. There is a high need of further research on this topic. Particularly, qualitative studies and hypothesis-testing approaches are required.
Some residents of long-term care (LTC) facilities with lethal or serious chronic illnesses may express a wish to hasten their death by voluntarily stopping eating and drinking (VSED). LTC facility clinicians, administrators, and staff must balance resident safety, moral objections to hastened death, and other concerns with resident rights to autonomy, self-determination, and bodily integrity. Initially, requests for hastened death, including VSED must be treated as opportunities to uncover underlying concerns. After a concerted effort to address root causes of suffering, some residents will continue to request hastened death. Rigorous resident assessment, interdisciplinary care planning, staff training, and clear and complete documentation are mandatory. In addition, an independent second opinion from a consultant with palliative care and/or hospice expertise is indicated to help determine the most appropriate response. When VSED is the only acceptable option to relieve suffering of residents with severe chronic and lethal illnesses, facilitating VSED requests honors resident-centered care. The author offers practice suggestions and a checklist for LTC facilities and staff caring for residents requesting and undergoing VSED.