The right to the return of personal effects belonging to loved ones after sudden death requires both protection and promotion. It is a fragile ‘right’ that can easily be undermined, and may require support from policy and legislation. The author has championed the return of personal effects after bereavement throughout her career in disaster response and was influenced by early examples of poor treatment and destruction. This article provides an evaluation of the historic picture and a reflection on the ongoing work to ensure that property is protected and restored. It also discusses whether the UK now has an ‘ethic of care’ in this area. This piece considers a number of recent case studies drawing on the author’s own experiences of working on incidents between 2001 and the present day, with specific examination of the work of the Metropolitan Police’s Property Restoration Team in 2005.
In 1900, most Americans gave birth and died at home, with minimal medical intervention. By contrast, most Americans today begin and end their lives in hospitals. The medicalization we now see is due in large part to federal and state policies that draw patients away from community-based providers, such as birth centers and hospice care, and toward the most intensive and costliest kinds of care. But the evidence suggests that birthing and dying people receive too much—even harmful—medical intervention.
In The Medicalization of Birth and Death, political scientist Lauren K. Hall describes how and why birth and death became medicalized events. While hospitalization provides certain benefits, she acknowledges, it also creates harms, limiting patient autonomy, driving up costs, and causing a cascade of interventions, many with serious side effects. Tracing the regulatory, legal, and financial policies that centralize care during birth and death, Hall argues that medicalization reduces competition, stifles innovation, and prevents individuals from accessing the most appropriate care during their most vulnerable moments. She also examines the profound implications of policy-enforced medicalization on informed consent and shows how medicalization challenges the healthcare community's most foundational ethical commitments.
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This special issue contents : a report of physicians’ beliefs about physician-assisted suicide: a national study ; respecting autonomy and promoting the patient’s good in the setting of serious terminal and concurrent mental illness ; after-death functions of cell death; selective neuronal death in neurodegenerative diseases: the ongoing mystery ; practice variability in determination of death by neurologic criteria for adult patients ; mortal responsibilities: bioethics and medical-assisted dying ; anticipation, accompaniment, and a good death in perinatal care ; pros and cons of physician aid in dying ; brain death criteria: medical dogma and outliers ; dying well-informed: the need for better clinical education surrounding facilitating end-of-life conversations ; looking back at withdrawal of life-support law and policy to see what lies ahead for medical aid-in-dying.
Physicians around the world are trained to promote health, detect and prevent diseases in early stages to avoid their progression and improve quality of life for patients when a disease has reached its advanced stages. However, when doctors face terminally ill patients who develop surgical emergencies due to complications of an underlying condition, it becomes a challenging, sensitive and ethical problem to decide between proceeding with aggressive surgical intervention or providing palliative care. The clinical case discussed here depicts one such situation and underlines the important role that an anesthesiologist fulfills during the final decision-making process.
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.
While care is often either implicitly or explicitly conceived in terms of "doing good," the morality of care is more complex than this association would suggest. Nursing home care, in particular, is both characterized by institutional demands for regulation and standardization, and the subjective practices of care workers. These can represent different notions of good care. Based on ethnographic fieldwork among people with dementia, family members and professional caregivers in nursing homes in the Netherlands, I present a case of a resident's sudden death, which revealed a fallacy of care. A fallacy of care refers to an uncritical approach to the "good" in care that overlooks its potentially harmful outcomes. I show that recognizing such fallacies is not only a matter of recognizing the "bad" that may result from "good" care, but of the friction between multiple "goods." In this case, protocols and care practices advocate different notions of the good that coexist, compete, and exclude one another, producing moral distress and forming hierarchical, if contested relations.
The addition of a do-not-operate (DNO) section to current medical orders for life-sustaining treatment (MOLST) and physician orders for life-sustaining treatment (POLST) medical order forms would more completely document patients' wishes for invasive interventions at the end of life. We propose a modification of the MOLST and POLST forms, in addition to hospital and electronic medical records, to include a DNO section, in addition to preexisting do-not-resuscitate (DNR) and do-not-intubate (DNI) orders, with the goal of reducing suffering from nonbeneficial surgical interventions in patients with severe illness at the end of life.
BACKGROUND: Decisions of withholding or withdrawing life-sustaining treatment are frequent in emergency departments (ED) and patients are often unable to communicate their wishes concerning end of life desires.
OBJECTIVE: To evaluate the participation of general practitioners (GPs) during the decision-making process of withholding or withdrawing life-sustaining treatments in ED.
DESIGN: Prospective observational multicenter study.
PATIENTS: We included patients for whom a decision of withdrawing or withholding life-sustaining treatments was made in ED. For each patient, we enrolled one general practitioner.
MAIN MEASURES: GPs were interviewed about their perception of end of life patient's management and the communication with ED and families.
KEY RESULTS: There were 109 potential patient participants. We obtained answers from 54 (49.5%) of the patient's associated GPs. Only 4 (7.4%) GPs were involved during the decision-making process of withholding or withdrawing life-sustaining treatments. Among GPs, 29 (53.7%) were contacted by family after the decision, most often to talk about their difficult experience with the decision. A majority (94%) believed their involvements in these decisions were important and 68% wished to "always" participate in end of life decisions despite the fact that they usually don't participate in these decisions. Finally, 66% of GPs believed that management of end of life in the emergency department was a failure and should be anticipated.
CONCLUSIONS: GPs would like to be more involved and barriers to GP involvement need to be overcome. We do not have any outcome data to suggest that routine involvement of GPs in all end of life patients improves their outcomes. Moreover, it requires major system and process-based changes to involve all primary care physicians in ED decision-making.
NIH TRIAL REGISTRY NUMBER: NCT02844972.
Objective: To quantitatively assess the factors associated with non-beneficial treatments (NBTs) in hospital admissions at the end of life.
Design: Retrospective multicentre cohort study.
Setting Three large, metropolitan tertiary hospitals in Australia.
Participants: 831 adult patients who died as inpatients following admission to the study hospitals over a 6-month period in 2012.
Main outcome measures: Odds ratios (ORs) of NBT derived from logistic regression models.
Results: Overall, 103 (12.4%) admissions involved NBTs. Admissions that involved conflict within a patient’s family (OR 8.9, 95% CI 4.1 to 18.9) or conflict within the medical team (OR 6.5, 95% CI 2.4 to 17.8) had the strongest associations with NBTs in the all subsets regression model. A positive association was observed in older patients, with each 10-year increment in age increasing the likelihood of NBT by approximately 50% (OR 1.5, 95% CI 1.2 to 1.9). There was also a statistically significant hospital effect.
Conclusions: This paper presents the first statistical modelling results to assess the factors associated with NBT in hospital, beyond an intensive care setting. Our findings highlight potential areas for intervention to reduce the likelihood of NBTs.
BACKGROUND: Research has shown that do not resuscitate (DNR) and do not intubate (DNI) orders may be construed by physicians to be more restrictive than intended by patients. Previous studies of physicians found that DNR/DNI orders are associated with being less willing to provide invasive care.
OBJECTIVES: The purpose of this study was to assess the influence of code status on emergency residents' decision-making regarding offering invasive procedures for those patients with DNR/DNI compared with their full code counterparts.
METHODS: We conducted a nationwide survey of emergency medicine residents using an instrument of 4 clinical vignettes involving patients with serious illnesses. Two versions of the survey, survey A and survey B, alternated the DNR/DNI and full code status for the vignettes. Residency leaders were contacted in August 2018 to distribute the survey to their residents.
RESULTS: Three hundred and three residents responded from across the country. The code status was strongly associated with decisions to intubate or perform CPR and influenced the willingness to offer other invasive procedures. DNR/DNI status was associated with less frequent willingness to place central venous catheters (88.2% for DNR/DNI vs. 97.2% for full code, p < 0.001), admit patients to the intensive care unit (89.9% vs. 99.0%, p < 0.001), offer dialysis (79.3% vs. 98.0%, p < 0.001), and surgical consultation (78.7% vs. 94.2%, p < 0.001).
CONCLUSIONS: In a nationwide survey, emergency medicine residents were less willing to provide invasive procedures for patients with DNR/DNI status, including the placement of central venous catheters, admission to the intensive care unit, and consultation for dialysis and surgery.
Courts in England and Wales, Australia, and New Zealand have insisted the question of when it is acceptable to withdraw or withhold life-sustaining medical treatment from a child must be considered on a case-by-case basis. Over the last 40 years a number of cases have considered whether treatment is objectively in the child's best interests. This article seeks to identify whether there are factors identified and weighed in a consistent manner across cases. Thirty cases involving decisions about the provision of life-sustaining medical treatment to children three years old or younger were identified. Judges regularly refer to the need to weigh benefits and burdens and these factors were identified and assigned scores. Eight key factors were identified, and a scoring range was assigned to each. The factors focus on the condition and position of the child and the burdens of invasive medical treatment. The review demonstrates there are factors consistently identified and despite criticisms of the indeterminacy of the best interests test, there may be a broadly consistent approach to decision-making. Cognitive capacity and unavoidably imminent death appear to be the two most influential factors in determining whether life-sustaining treatment should be provided.
BACKGROUND: End-of-life (EOL) decision-making in the intensive care unit (ICU) can be emotionally challenging for both doctors and nurses, who are sometimes placed in difficult positions where they are required to make decisions on behalf of patients. With an ageing population and advances in medical technology, there is an increase in such decisions being made in ICUs.
OBJECTIVES: The objective of this study was to explore the perspectives of doctors and nurses involved in the EOL decision-making process in an ICU.
METHODS: This study used a qualitative methodology based on naturalistic inquiry. Intensive care nurses and doctors from a large Sydney metropolitan public hospital were purposively selected, and data saturation was reached after a total of eight nurses and four doctors were interviewed. Data were collected through semistructured interviews, either face-to-face or over the telephone. Interviews were then transcribed verbatim, and themes were identified and coded through a line-by-line analysis of each transcript (manual thematic analysis).
FINDINGS: The findings revealed two main themes: 'Doctors' and nurses' roles in decision-making' and 'Managing family expectations'. These themes highlighted key differences in decision-making processes, in that doctors tended to aim to meet the family's needs, while the nurses tended to advocate on behalf of the patient and what they interpreted as the patient's best interests. Furthermore, nurses tended to feel undervalued in decision-making during family conferences, when in reality, the doctors were making decisions based on all information obtained, primarily from nursing staff.
CONCLUSIONS: EOL decision-making is complex and affects doctors and nurses involved in different ways. More emphasis on interprofessional education and collaboration between the two disciplines may enhance future decision-making processes.
BACKGROUND: Locked-in syndrome (LIS) characterizes individuals who have experienced pontine lesions, who have limited motor output but with preserved cognitive abilities. Despite their severe physical impairment, individuals with LIS self-profess a higher quality of life than generally expected. Such third-person expectations about LIS are shaped by personal and cultural factors in western countries.
OBJECTIVE: We sought to investigate whether such opinions are further influenced by the cultural background in East Asia. We surveyed attitudes about the ethics of life-sustaining treatment in LIS in a cohort of medical and non-medical Chinese participants.
RESULTS: The final study sample included 1545 respondents: medical professionals (n=597, 39%), neurologists (n=303, 20%), legal professionals (n=276, 18%) and other professionals (n=369, 24%), including 180 family members of individuals with LIS. Most of the participants (70%), especially neurologists, thought that life-sustaining treatment could not be stopped in individuals with LIS. It might be unnecessary to withdraw life-sustaining treatment, because the condition involved is not terminal and irreversible, and physical treatment can be beneficial for the patient. A significant proportion (59%) of respondents would like to be kept alive if they were in that condition; however, older people thought the opposite. Families experience the stress of caring for individuals with LIS. The mean (SD) quality of life score for relatives was 0.73 (2.889) (on a -5,+5 scale), which was significantly lower than that of non-relatives, 1.75 (1.969) (P<0.001).
CONCLUSIONS: Differences in opinions about end of life in LIS are affected by personal characteristics. The current survey did not identify a dissociation between personal preferences and general opinions, potentially because of a social uniformity in China where individualism is less pronounced. Future open-ended surveys could identify specific needs of caregivers so that strategic interventions to reduce ethical debasement are designed.
BACKGROUND: In the last two decades, nursing authors have published ethical analyses of palliative sedation-an end-of-life care practice that also receives significant attention in the broader medical and bioethics literature. This nursing literature is important, because it contributes to disciplinary understandings about nursing values and responsibilities in end-of-life care.
RESEARCH AIM: The purpose of this project is to review existing nursing ethics literature about palliative sedation, and to analyze how nurses' moral identities are portrayed within this literature.
RESEARCH DESIGN: We reviewed discussion papers, written by nurses about the ethics of palliative sedation, which were cited in MEDLINE, CINAHL, Nursing and Allied Health, or Philosopher's Index (search date March 2018). Twenty-one papers met selection criteria. We performed a comprehensive review and analysis (using the Qualitative Analysis Guide of Leuven), of the values, responsibilities, and relationships reflected in authors' portrayal of the nursing role.
FINDINGS: Two different tones are apparent in the extant nursing ethics literature. One is educational, while the other is critically reflective. Irrespective of tone, all authors agree on the alleviation of suffering as a fundamental nursing responsibility. However, they differ in their analysis of this responsibility in relation to other values in end-of-life care, including those that depend on consciousness. Finally, authors emphasize the importance of subjective and experience-based understandings of palliative sedation, which they argue as depending on nurses' proximity to patients and families in end-of-life care.
DISCUSSION AND CONCLUSION: Based on our findings, we develop three recommendations for future writing by nurses about palliative sedation. These relate to the responsibility of recognizing how consciousness might matter in (some) peoples' moral experiences of death and dying, to the importance of moral reflectiveness in nursing practice, and to the value of a relational approach in conceptualizing the nursing ethics of palliative sedation.
BACKGROUND: Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.
METHODS: An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.
RESULTS: One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant's life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant's ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment.
CONCLUSION: Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents' decisions. These findings may be useful when constructing guidelines for clinical practice.
The opportunity for a critically ill patient to be an organ donor depends on a complex interplay of factors (the Donation Process), one of which is the treating medical team's perspective of the importance and priority of donation during end-of-life care. Medical providers frequently are hesitant to administer treatments to preserve organ function in patients whose death is imminent for fear of invoking a conflict of interest. The basis of the perceived conflict is that organ donation is a process done for the sole benefit of organ transplant recipients and not for the donor, and therefore care directed toward donation prior to death is not for the donor patient's benefit. In this report, it is argued that the Donation Process is indeed a patient-centered process for the potential organ donor, and that organ donation serves the donor's best interests. In addition, key elements of the Donation Process are described.
The aim of this article is to explore the concept of medical futility and the withdrawal of care for children in intensive care units. There have been several recent cases where medical staff have considered that there was no possibility of recovery for a child, yet their clinical judgments were challenged by the parents. The private anguish of these families became public, social media heightened emotions and this was followed by political and religious intrusion. Innovations in medical treatment and technological advances raise issues for all those involved in the care of children and young people especially when decisions need to be made about end of life care. Healthcare professionals have a moral and legal obligation to determine when treatment should cease in cases where it is determined to be futile. The aim should be to work collaboratively with parents but all decisions must be made in the best interests of the child. However, medical staff and parents may have differing opinions about care decisions. In part, this may be as a result of their unique relationships with the child and different understanding of the extent to which the child is in discomfort or can endure pain.
All articles in May 2019's special issue of Bioethics offer profound insights into the issue of "being a burden to others" in relation to wishes to die, which are highly relevant for ethical debates about end-of-life care and physician-assisted dying. In this reply, we wish to stress the importance of acknowledging and analyzing the sociopolitical context of the phenomenon "being a burden" in relation to wishes to die and we will show how this analysis could benefit from a care ethical approach. As discussions in care ethics have made clear, caring practices are both social and political practices. An empirical and ethical analysis of "being a burden" therefore needs to take institutional and societal norms and structures into account, in addition to first-person experiences and concepts such as caring needs, relational autonomy, and interdependency. Besides the relevance of the sociopolitical context for the phenomenon "being a burden" as such, the sociopolitical context also seems relevant for the investigation of the phenomenon, which we will illustrate by reflecting on "being a burden" in relation to the practice of physician-assisted dying in the Netherlands.
L’objectif de l’étude était de décrire les pratiques des obstétriciens français face au choix des parents de poursuivre la grossesse après l’annonce d’une pathologie fœtale de particulière gravité, non curable. L’étude était une étude descriptive, transversale et nationale par questionnaires anonymes. La majorité des obstétriciens n’ont pas de formation spécifique en soins palliatifs ou éthique et ne disposent pas d’un protocole encadrant ces prises en charge, mais jugent ce document utile. Les obstétriciens jouent un rôle important dans ces situations.