Allow natural death versus do-not-resuscitate: titles, information contents, outcomes, and the considerations related to do-not-resuscitate decision.

BACKGROUND: As the "do not resuscitate" (DNR) discussion involves communication, this study explored (1) the effects of a title that included "allow natural death", and of information contents and outcomes of the decision; and (2) the information needs and consideration of the DNR decision, and benefits and barriers of the DNR discussion. METHODS: Healthy adults (n = 524) were presented with a scenario with different titles, information contents, and outcomes, and they rated the probability of a DNR decision. A questionnaire including information needs, consideration of the decision, and benefits and barriers of DNR discussion was also used. RESULTS: There was a significantly higher probability of signing the DNR order when the title included "allow natural death" (t = - 4.51, p < 0.001), when comprehensive information was provided (F = 60.64, p < 0.001), and when there were worse outcomes (F = 292.16, p < 0.001). Common information needs included remaining life period and the prognosis. Common barriers were the families' worries and uncertainty about future physical changes. CONCLUSION: The title, information contents, and outcomes may influence the DNR decisions. Health-care providers should address the concept of natural death, provide comprehensive information, and help patients and families to overcome the barriers.

Voluntary Stopping Eating and Drinking.

Voluntary stopping of eating and drinking (VSED) is a deliberate, self-initiated attempt to hasten death in the setting of suffering refractory to optimal palliative interventions or prolonged dying that a person finds intolerable. Individuals who consider VSED tend to be older, have a serious but not always imminently terminal illness, place a high value on independence, and have significant illness burden. VSED can theoretically be performed independent of clinician assistance and therefore avoids many of the ethical and legal concerns associated with physician-assisted dying or other palliative measures of last resort, However, VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers, so VSED is best supervised by an experienced, well-informed clinician who can provide appropriate pre-intervention assessment, anticipatory guidance, medical treatment of symptoms, and emotional support. Before initiation of VSED, clinicians should carefully screen for inadequately treated psychiatric conditions, unaddressed symptoms, existential suffering, and evidence of coercion-consultation from palliative medicine, psychiatry, or ethics is often indicated. The most common symptoms encountered after starting VSED are extreme thirst, hunger, dysuria, progressive disability, delirium, and somnolence. Although physiologically similar to cessation of artificial nutrition and hydration, the onset and management of symptoms is often different. We propose an organized system for evaluating individual appropriateness for VSED, anticipatory guidance, and management of symptoms associated with VSED. A brief review of ethical and legal considerations follows.

Storytelling in the Early Bereavement Period to Reduce Emotional Distress Among Surrogates Involved in a Decision to Limit Life Support in the ICU: A Pilot Feasibility Trial.

OBJECTIVES: Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative self-disclosure (storytelling) reduces emotional distress after other traumatic experiences. We sought to assess the feasibility, acceptability, and tolerability of storytelling among bereaved surrogates involved in a decision to limit life support in the ICU. DESIGN: Pilot single-blind trial. SETTING: Five ICUs across three hospitals within a single health system between June 2013 and November 2014. SUBJECTS: Bereaved surrogates of ICU patients. INTERVENTIONS: Storytelling and control conditions involved printed bereavement materials and follow-up assessments. Storytelling involved a single 1- to 2-hour home or telephone visit by a trained interventionist who elicited the surrogate's story. MEASUREMENTS AND MAIN RESULTS: The primary outcomes were feasibility (rates of enrollment, intervention receipt, 3- and 6-mo follow-up), acceptability (closed and open-ended end-of-study feedback at 6 mo), and tolerability (acute mental health services referral). Of 53 eligible surrogates, 32 (60%) consented to treatment allocation. Surrogates' mean age was 55.5 (SD, 11.8), and they were making decisions for their parent (47%), spouse (28%), sibling (13%), child (3%), or other relation (8%). We allocated 14 to control and 18 to storytelling, 17 of 18 (94%) received storytelling, 14 of 14 (100%) and 13 of 14 (94%) control subjects and 16 of 18 (89%) and 17 of 18 (94%) storytelling subjects completed their 3- and 6-month telephone assessments. At 6 months, nine of 13 control participants (69%) and 16 of 17 storytelling subjects (94%) reported feeling "better" or "much better," and none felt "much worse." One control subject (8%) and one storytelling subject (6%) said that the study was burdensome, and one control subject (8%) wished they had not participated. No subjects required acute mental health services referral. CONCLUSION: A clinical trial of storytelling in this study population is feasible, acceptable, and tolerable.

Court applications for withdrawal of artificial nutrition and hydration from patients in a permanent vegetative state: family experiences.

Withdrawal of artificially delivered nutrition and hydration (ANH) from patients in a permanent vegetative state (PVS) requires judicial approval in England and Wales, even when families and healthcare professionals agree that withdrawal is in the patient's best interests. Part of the rationale underpinning the original recommendation for such court approval was the reassurance of patients' families, but there has been no research as to whether or not family members are reassured by the requirement for court proceedings or how they experience the process. The research reported here draws on in-depth narrative interviews with 10 family members (from five different families) of PVS patients who have been the subject of court proceedings for ANH-withdrawal. We analyse the empirical evidence to understand how family members perceive and experience the process of applying to the courts for ANH-withdrawal and consider the ethical and practice implications of our findings. Our analysis of family experience supports arguments grounded in economic and legal analysis that court approval should no longer be required. We conclude with some suggestions for how we might develop other more efficient, just and humane mechanisms for reviewing best interests decisions about ANH-withdrawal from these patients.

End-of-life decisions in perinatal care: A view from health-care providers in Mexico.

OBJECTIVE: To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. MATERIALS AND METHODS: An anonymous questionnaire was administered to physicians, social workers, and nurses in perinatal care. Differences were evaluated using the chi square and Student's t tests. RESULTS: When considering severely ill fetuses and newborns, 82% and 93% of participants, respectively, opted for providing palliative care, whereas 18% considered feticide as an alternative. Those who opted for palliative care aimed to diminish suffering and those who opted for intensive care intended to protect life or sanctity of life. There was poor knowledge about the laws that regulate these decisions. CONCLUSIONS: Although there is no consensus on what decisions should be taken with severely ill fetuses or neonates, most participants considered palliative care as the first option, but feticide or induced neonatal death was not ruled out.

End-of-life decisions in perinatal care: A view from health-care providers in Mexico / Decisiones sobre el final de la vida en la atención perinatal: Una visión del equipo de salud en México

Objective. To examine the opinions of a perinatal health team regarding decisions related to late termination of pregnancy and severely ill newborns. Materials and Methods. An anonymous questionnaire was administered to physicians, social workers, and nurses in perinatal care. Differences were evaluated using the chi square and Student's t tests. Results. When considering severely ill fetuses and newborns, 82% and 93% of participants, respectively, opted for providing palliative care, whereas 18% considered feticide as an alternative. Those who opted for palliative care aimed to diminish suffering and those who opted for intensive care intended to protect life or sanctity of life. There was poor knowledge about the laws that regulate these decisions. Conclusions. Although there is no consensus on what decisions should be taken with severely ill fetuses or neonates, most participants considered palliative care as the first option, but feticide or induced neonatal death was not ruled out.

Objetivo. Explorar la opinión del equipo de salud sobre las decisiones relacionadas con la atención de fetos y neonatos gravemente enfermos. Material y métodos. Se aplicó un cuestionario anónimo a médicos, trabajadoras sociales y enfermeras perinatales. Las diferencias se evaluaron con las pruebas chi cuadrada y t de Student. Resultados. Al tratar fetos y neonatos gravemente enfermos, 82 y 93% de los participantes optaron, respectivamente, por atención paliativa. El 18% consideró el feticidio como alternativa. Quienes optaron por atención paliativa, lo hicieron para disminuir el sufrimiento, mientras que los que eligieron cuidados intensivos lo hicieron para proteger la vida o la sacralidad de la vida. Nuestro estudio mostró un pobre conocimiento de las leyes que regulan estas decisiones. Conclusiones. Aun cuando no existe un consenso sobre las decisiones que deben tomarse con fetos o neonatos gravemente enfermos, la mayoría consideró como primera opción los cuidados paliativos, aunque el feticidio y la muerte neonatal inducida no se descartaron.

Primary care patients hastening death by voluntarily stopping eating and drinking.

PURPOSE: Little is known about the role family physicians play when a patient deliberately hastens death by voluntarily stopping eating and drinking (VSED). The purpose of this study was to gain more insight for family physicians when confronted with patients who wish to hasten death by VSED. We aimed to describe physicians' involvement in VSED, to describe characteristics and motives of their patients, and to describe the process of VSED in terms of duration, as well as common symptoms in the last 3 days of life. METHODS: We undertook a survey of a random national sample of 1,100 family physicians (response rate 72%), and 500 of these physicians received questions about their last patient who hastened death by VSED. RESULTS: Of the 978 eligible physicians, 708 responded (72.4%); 46% had cared for a patient who hastened death by VSED. Of the 500 physicians who received 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 dependent 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 physicians 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.

Withdrawal of artificial nutrition: influence of prior experience on the perception of caregivers.

CONTEXT: In spite of the existence of clinical guidelines and a legal framework in France, the withdrawal of artificial nutrition (AN) in palliative care remains a difficult situation for caregivers who are confronted with this reality. OBJECTIVES: To describe the perception of caregivers on the withdrawal of AN and to compare this perception between caregivers who have already been confronted with this situation and those who have not. METHODS: Cross-sectional survey questionnaire of nurses and nurses' aides (n = 274) working in medicine, surgery, and palliative care departments of a regional hospital. RESULTS: Of the caregivers, 59.5% declared having been confronted with the withdrawal of AN in their professional practice. This was associated with a better perception by these caregivers even if their knowledge on the criteria to be considered in the decision was not significantly modified. CONCLUSION: The coherence of the withdrawal of AN with the personal beliefs of the caregivers, already high in the absence of being confronted with this practice, is better among caregivers who have been confronted with this situation. The lack of information perceived by caregivers should prompt us to develop additional training on the withdrawal of AN, its objectives, and its clinical consequences.

[Attitudes towards euthanasia: The impact of experiencing end-of-life care]. / Einstellungen zur Sterbehilfe.Welchen Einfluss hat die Pflege eines sterbenskranken Angehörigen?

BACKGROUND: It is a matter of debate whether euthanasia should be part of medical practice. OBJECTIVES: The current study investigates the attitudes of bereaved family members of cancer patients towards euthanasia. MATERIALS AND METHODS: We conducted a survey with 211 people who had recently lost a close relative to cancer. Participants were asked whether euthanasia should be part of medical practice.Two logistic regression models were calculated in order to determine the factors influencing the attitude towards active euthanasia and assisted suicide. RESULTS: About 70% and 75% of the respondents approved active euthanasia and assisted suicide, respectively. Religious denomination and psychological distress had a significant impact on the attitude towards active euthanasia. About 10%of the deceased patients had asked for active euthanasia. CONCLUSIONS: There was no difference between bereaved family members and the general population regarding the acceptance of euthanasia. Attitudes towards active euthanasia are associated with psychological distress and shaped by cultural values rather than by the experience of end-of-life care.

Emergent use of mechanical circulatory support devices: ethical dilemmas.

PURPOSE OF REVIEW: Mechanical Circulatory Support (MCS) devices are 'life-sustaining devices' placed as a bridge to decision, either recovery, transplantation or a lifetime tether with the device. Cardiogenic shock may compromise patient autonomy, or the right for an individual patient to determine his own care. This review addresses an ethical dilemma in the context of complex clinical medical decision-making, during marked uncertainty for outcomes. RECENT FINDINGS: The language in an advanced directive is often imprecise and may not provide clear guidance, especially for emergent decisions related to MCS devices. Despite improving outcomes, application of MCS in critical illness is associated with excessive morbidity and quality of life-limiting adverse outcomes. Several cohort experiences now exist that define deactivation of Left Ventricular Assist Devices (LVADs) in futility as now deemed as morally and ethically appropriate. In contradistinction to euthanasia, deactivation of an LVAD does not introduce new intervention or an additional surgical injury, thereby allowing the patient to die from their original disorder. SUMMARY: Clinicians must maintain the principle of patient autonomy, ensure the viability of an appropriate informed consent process and facilitate surrogate judgment. An interdisciplinary team-based approach is required, and, in some cases, assisted by formal ethics consultations in vexing situations.

Israeli Dying Patient Act: physician knowledge and attitudes.

OBJECTIVES: The recently enacted Israeli Dying Patient Act was designed to strike balance between enhancing patient autonomy in end-of-life decision making and cultural/religious norms that are in opposition to active euthanasia and physician-assisted suicide (PAS). The current study evaluated physician attitudes regarding active and passive euthanasia, and their knowledge of specific aspects of the law. METHODS: A survey was administered to a convenience sample of hospital-based physicians treating terminal patients. Physicians were queried about their attitudes regarding euthanasia and PAS. Physicians were also queried about specific aspects of the law and whether they had sufficient resources to uphold the law. RESULTS: Surveys were distributed to 270 physicians and 100 were returned and evaluated (37%). Nearly all physicians supported passive euthanasia (withholding treatment), whereas over 40% maintained that active forms of euthanasia should be allowed for terminal patients in severe physical pain. Multivariate analysis showed a negative relationship between support for more active forms of euthanasia and physicians' self-reported religiosity. Physicians cited lack of time as a reason for not complying with the new law. Physicians had a familiarity with the general aspects of the new legislation, but a large proportion was not aware of the specifics of the law. CONCLUSIONS: Compared with previous surveys, a larger number of physicians support passive euthanasia. A sizable percentage of physicians would be willing to participate in active euthanasia and even PAS. Attitudes toward euthanasia are influenced by religious factors.

Causes and consequences of disproportionate care in intensive care medicine.

PURPOSE OF REVIEW: Increased use of advanced life-sustaining measures in patients with poor long-term expectations secondary to more chronic organ dysfunctions, comorbidities and/or a poor quality of life has become a worrying trend over the last decade. This can lead to futile, disproportionate or inappropriate care in the ICU. This review summarizes the causes and consequences of disproportionate care in the ICU. RECENT FINDINGS: Disproportionate care seems to be common in European and North American ICUs. The initiation and prolongation of disproportionate care can be related to hospital facilities, healthcare providers, the patient and his/her representatives and society. This can have serious consequences for patients, their relatives, physicians, nurses and society. SUMMARY: Disproportionate care is common in western ICUs. It can lead to violation of basic bioethical principles, suffering of patients and relatives and compassion fatigue and moral distress in healthcare providers. Avoiding inappropriate use of ICU resources and disproportionate care in the ICU should have high priority for ICU managers but also for every healthcare provider taking care of patients at the bedside.