How palliative care patients’ feelings of being a burden to others can motivate a wish to die. Moral challenges in clinics and families

The article explores the underlying reasons for patients’ self‐perception of being a burden (SPB) in family settings, including its impact on relationships when wishes to die (WTD) are expressed. In a prospective, interview‐based study of WTD in patients with advanced cancer and non‐cancer disease (organ failure, degenerative neurological disease, and frailty) SPB was an important emerging theme. In a sub‐analysis we examined (a) the facets of SPB, (b) correlations between SPB and WTD, and (c) SPB as a relational phenomenon. We analyzed 248 interviews with 62 patients, their family caregivers, and professionals using grounded theory and interpretive phenomenological analysis. SPB appeared as important empathic concern in care situations. Patients expressed many sorts of concerns for others, but also perceived an altered self‐understanding that did not meet mutual expectations within relationships. In SPB associated with WTD three constellations were found: (a) WTD to unburden others; (b) patients decided against hastening death to prevent being a further burden to others (in these cases, the SPB counteracted the wish to die); and (c) both wishes for and against dying were sustained by SPB. These patients often felt paralyzed and suffered deeply. Family caregivers felt emotionally touched by SPB and tried to unburden patients by caring and compassion. We concluded that the impact of SPB on a WTD and the various meanings the facets of SPB have in balancing relationships need to be worked out individually. An early palliative and narrative approach is warranted.     

Feeling like a burden to others and the wish to hasten death in patients with advanced illness: A systematic review

Studies that have explored the wish to hasten death (WTHD) in patients with advanced illness have found that the feeling of being a burden may trigger WTHD. Research suggests that both the feeling and the wish are indicators of multidimensional suffering whose meaning may depend on the patient's biographical background. Therefore, we carried out a systematic review and meta‐ethnography. Fourteen qualitative studies, reported in 16 articles, met the inclusion criteria. The analysis identified two themes: the personal and social dimensions that could help to explain the feeling of being a burden in these patients. These dimensions reveal how this feeling is linked to physical, psychological/emotional, existential and social factors. The feeling of being a burden cannot be understood without considering patients’ personal interpretation of their dependency or care needs, and hence it is also necessary to understand their biographical background. Such an understanding is crucial to inform clinical policies based on the moral duty to provide all patients with humane care.     

Self‐perceived burden to others as a moral emotion in wishes to die. A conceptual analysis

Patients at the end of their life who express a wish to die sometimes explain their wish as the desire not to be a burden to others. This feeling needs to be investigated as an emotion with an intrinsically dialogical structure. Using a phenomenological approach, two key meanings of the feeling of being a burden to others as a reason for a wish to die are identified. First, it is an existential suffering insofar as it contains the perception of a plight so desperate that it can only be relieved by the end of the patient’s existence. Second, it is an empathic concern that implies caring about those who bear the burden of caring for the person at the end of their life. It is therefore a moral emotion, encompassing a series of difficulties, including the subjective perception of a stark imbalance between giving and taking, the adequacy of the representation of the caregiver burden in the patient’s mind, and the danger of diminishing the worth of one’s life out of shame or self‐denigration. R. D. Laing’s terminology of crossed perspectives in interexperience is used to systematically distinguish the actual caregiver burden, the patient’s view of the caregiver burden, the stress for the patient in feeling that s/he is a burden to the caregiver, and the caregiver’s view of the patient’s stress. The sense of being a burden implies the belief that the caregiver feels burdened, and the fear that this burden could become unbearable.     

Relationships and burden: An empirical‐ethical investigation of lived experience in home nursing arrangements

Quantitative research has called attention to the burden associated with informal caregiving in home nursing arrangements. Less emphasis has been placed, however, on care recipients’ subjective feelings of being a burden and on caregivers’ willingness to carry the burden in home care. This article uses empirical material from semi‐structured interviews conducted with older people affected by multiple chronic conditions and in need of long‐term home care, and with informal and professional caregivers, as two groups of relevant others. The high burden of home‐care arrangements is unanimously stressed by all three groups involved in the triangle of care. An empirical‐ethical investigation of what can be legitimately expected from family members and informal caregivers, informed by Frith's symbiotic empirical ethics approach, was undertaken. Key tenets from the special goods theory and nursing professionalism are used as analytical tools. The study concludes that the current situation may hinder professional development and can reinforce feelings of being a burden to relevant others.     

Reef fish and habitat relationships in a Caribbean seascape: the importance of reef context

Marine protected area (MPA) effectiveness is contingent on understanding key ecological patterns and processes at appropriate spatial scales and may depend upon maintaining critical linkages among essential habitat patches to conserve reef-fish communities. Hypotheses were tested to investigate the importance of habitat linkages in the US Virgin Islands. As expected, reef context (the spatial pattern of surrounding habitat patches) was a strong predictor of reef fish assemblage structure. Specific relationships were functionally consistent with the ecology of the fishes of interest. For example, reefs with large amounts of seagrass nearby harbored the greatest numerical abundance of fishes, particularly mobile invertebrate feeders and the exploited fish families of Haemulidae (grunts) and Lutjanidae (snappers). Species richness for the entire fish community and within these fish groups was also strongly associated with reef context. Furthermore, reef fish mobility influenced how fishes related to reef context. Fish-habitat relationships were detected as far as 1 km from study reefs, suggesting that fish movements result in habitat encounter rates that may influence their patterns of distribution. Consequently, functional habitat connectivity of habitat patches appears important in structuring reef-fish assemblages, and suggests that landscape-scale metrics may provide insights useful to managers in the design of MPAs.     

The evolving landscape and climate of western Flores: an environmental context for the archaeological site of Liang Bua

The rapidly changing landscape of the eastern Indonesian archipelago has evolved at a pace dictated by its tropical climate and its geological and tectonic history. This has produced accelerated karstification, flights of alluvial terraces, and complex, multi-level cave systems. These cave systems sometimes contain a wealth of archaeological evidence, such as the almost complete skeleton of Homo floresiensis found at the site of Liang Bua in western Flores, but this information can only be understood in the context of the geomorphic history of the cave, and the more general geological, tectonic, and environmental histories of the river valley and region. Thus, a reconstruction of the landscape history of the Wae Racang valley using speleothems, geological structure, tectonic uplift, karst, cave, and terrace development, provides the necessary evidence to determine the formation, age, evolution, and influences on the site. This evidence suggests that Liang Bua was formed as two subterranean chambers ∼600 ka, but could not be occupied until ∼190 ka when the Wae Racang wandered to the southern side of the valley, exposing the chamber and depositing alluvial deposits containing artifacts. During the next ∼190 k.yr., the chambers coalesced and evolved into a multi-level and interconnected cave that was subjected to channel erosion and pooling events by the development of sinkholes. The domed morphology of the front chamber accumulated deep sediments containing well stratified archaeological and faunal remains, but ponded water in the chamber further prevented hominin use of the cave until ∼100 ka. These chambers were periodically influenced by river inundation and volcanic activity, whereas the area outside the cave was greatly influenced by glacial phases, which changed humid forest environments into grassland environments. This combined evidence has important implications for the archaeological interpretation of the site.     

Post‐trial obligations in the Declaration of Helsinki 2013: classification,reconstruction and interpretation

The general aim of this article is to give a critical interpretation of post‐trial obligations towards individual research participants in the Declaration of Helsinki 2013. Transitioning research participants to the appropriate health care when a research study ends is a global problem. The publication of a new version of the Declaration of Helsinki is a great opportunity to discuss it. In my view, the Declaration of Helsinki 2013 identifies at least two clearly different types of post‐trial obligations, specifically, access to care after research and access to information after research. The agents entitled to receive post‐trial access are the individual participants in research studies. The Declaration identifies the sponsors, researchers and host country governments as the main agents responsible for complying with the post‐trial obligations mentioned above. To justify this interpretation of post‐trial obligations, I first introduce a classification of post‐trial obligations and illustrate its application with examples from post‐trial ethics literature. I then make a brief reconstruction of the formulations of post‐trial obligations of the Declaration of Helsinki from 2000 to 2008 to correlate the changes with some of the most salient ethical arguments. Finally I advance a critical interpretation of the latest formulation of post‐trial obligations. I defend the view that paragraph 34 of ‘Post‐trial provisions’ is an improved formulation by comparison with earlier versions, especially for identifying responsible agents and abandoning ambiguous ‘fair benefit’ language. However, I criticize the disappearance of ‘access to other appropriate care’ present in the Declaration since 2004 and the narrow scope given to obligations of access to information after research.     

The effect of minority status and social context on the development of depression and anxiety: a longitudinal study of Puerto Rican descent youth

Few longitudinal studies have explored to date whether minority status in disadvantaged neighborhoods conveys risk for negative mental health outcomes, and the mechanisms possibly leading to such risk. We investigated how minority status influences four developmental mental health outcomes in an ethnically homogeneous sample of Puerto Rican youth. We tested models of risk for major depressive disorder (MDD) and generalized anxiety disorder (GAD), depressive and anxiety symptoms (DAS), and psychological distress, as Puerto Rican youth (aged 5‐13 years) transitioned to early adulthood (15‐29 years) in two sites, one where they grew up as a majority (the island of Puerto Rico), and another where they were part of a minority group (South Bronx, New York). At baseline, a stratified sample of 2,491 Puerto Rican youth participated from the two sites. After baseline assessment (Wave 1), each youth participant and one caregiver were assessed annually for two years, for a total of three time points (Waves 1‐3). From April 2013 to August 2017, participants were contacted for a Wave 4 interview, and a total of 2,004 young people aged 15 to 29 years participated in the assessment (response rate adjusted for eligibility = 82.8%). Using a quasi‐experimental design, we assessed impacts of minority status on MDD, GAD, DAS and psychological distress. Via mediation analyses, we explored potential mechanisms underlying the observed relationships. Data from 1,863 Puerto Rican youth (after exclusion of those with MDD or GAD during Waves 1‐3) indicated links between minority status and higher rates of lifetime and past‐year GAD, DAS and past 30‐day psychological distress at Wave 4, and a marginal trend for MDD, even after adjustments. Childhood social support and peer relationships partially explained the differences, as did intercultural conflict, neighborhood discrimination, and unfair treatment in young adulthood. The experience of growing up as a minority, as defined by context, seemingly elevates psychiatric risks, with differences in social relationships and increased social stress as mediators of this relationship. Our findings suggest that interventions at the neighborhood context rather than at the individual level might be important levers to reduce risks for the development of mood disorders in minority youth.     

The balancing of virtues—Muslim perspectives on palliative and end of life care: Empirical research analysing the perspectives of service users and providers

In this paper, I will share findings from a qualitative study that offers a thematic analysis of 76 interviews with Muslim patients and families as well as doctors, nurses, allied health professionals, chaplains and community faith leaders across the United Kingdom. The data show that for many Muslims, Islam—its texts and lived practice—is of central importance when they are deliberating about death and dying . Central to these deliberations are virtues rooted within Islamic theology and ethics, the traditions of adab (virtue) and aqhlaq (proper conduct). Themes analysed include theological and moral understandings around the virtues of hope and acceptance. The study provides an analysis of these themes in relation to the experiences of Muslim patients and families arriving at meaning making around death and dying and how this interfaces with their interaction with biomedicine and healthcare. The study shows that the juxtaposition of different values and moral frameworks require careful negotiation when Muslim patients and families encounter the healthcare system. The study also describes how healthcare professionals and staff of other faiths and no faith encounter Muslim beliefs and practices, and the challenges they face in interpreting virtues and values rooted in faith, especially when these are perceived to be mutually opposed or inconsistent.     

The Double Helix: Applying an Ethic of Care to the Duty to Warn Genetic Relatives of Genetic Information

Genetic testing reveals information about a patient's health status and predictions about the patient's future wellness, while also potentially disclosing health information relevant to other family members. With the increasing availability and affordability of genetic testing and the integration of genetics into mainstream medicine, the importance of clarifying the scope of confidentiality and the rules regarding disclosure of genetic findings to genetic relatives is prime. The United Nations International Declaration on Human Genetic Data urges an appreciation for principles of equality, justice, solidarity and responsibility in the context of genetic testing, including a commitment to honoring the privacy and security of the person tested. Considering this global mandate and recent professional statements in the context of a legal amendment to patient privacy policies in Australia, a fresh scrutiny of the legal history of a physician's duty to warn is warranted. This article inquiries whether there may be anything ethically or socially amiss with a potential future recommendation for health professionals or patients to universally disclose particular cancer predisposition genetic diagnosis to genetic family members. While much of the discussion remains applicable to all genetic diagnosis, the article focuses on the practice of disclosure within the context of BRCA1/2 diagnosis. An ‘ethic of care’ interpretation of legal tradition and current practice will serve to reconcile law and medical policy on the issue of physician disclosure of genetic results to family members without patient consent.     

The effects of fire on ant communities in north-western Patagonia: the importance of habitat structure and regional context

Abstract. We investigated the effects of recent fires on the native ant communities in two habitats of north-west Patagonia that differ in vegetation structural complexity. Using bait traps, we sampled ants in replicated scrub and steppe areas including paired burned and unburned sites. Fires significantly reduced plant cover and ant diversity only in scrub sites. The drop in diversity was due to (a) a reduction in the abundance of rare species associated with woody vegetation, and (b) an increase in the abundance of the dominant species, which thrive in more xeric microclimatic conditions. Consequently, ant assemblage structure of burned scrub approaches that of steppe sites. Our findings suggest that the effects of disturbances on ant assemblages depends both on habitat characteristics, which in turn determine the extent of the changes induced by the disturbance, and on the regional context of the ant fauna, which in turn determines the ability of the ants to deal with the post-disturbance conditions.     

Barriers to provision of dental care in long-term care facilities: the confrontation with ageing and death

Objective: The aim of the study was to reveal barriers to providing dental care for residents in long‐term care (LTC) facilities. Design: Participants were selected randomly from the dentist register in Berlin and Saxony, Germany. The sample consisted of 60 self‐employed and 60 employed dentists, a further 60 dentists worked in their own dental practice but also part‐time in an LTC facility. In semi‐structured interviews a questionnaire with 36 statements concerning working conditions, administration and cost, insecurity concerning treatment decisions as well as confrontation with ageing and death was employed. Subsequently, the study participants were asked to rank the four dimensions concerning their impact on the decision against providing dental care in an LTC facility. Results: The random sample was representative in age and gender for the dental register in Berlin and Saxony. Fifty‐six per cent of the participants (63% of the men and 51% of the women; 52% of the self‐employed, 60% of the employed and 56% of the consultant dentists) indicated unfavourable working conditions as biggest obstacle in providing dental care in an LTC‐facility. Thirty‐two per cent of participants rated administration and cost, 7% the insecurity in treatment decisions as major hindrance. Only 5% of the participants rated the confrontation with age and death as substantial barrier. There were no age and gender differences. Dentists in Berlin seemed more concerned about administration and cost of a consultancy activity and less secure in their therapy decisions than the colleagues from Saxony (p < 0.001). Dentists who work partly in LTC facilities were the least concerned about the confrontation with ageing and death (not significant), employed dentist showed the least secure in their treatment decisions (p > 0.001). Conclusion: It can be concluded that the awareness of infra‐structural and financial aspects in providing dental care in LTC facilities should be raised with health politicians and that these aspects should be considered when inaugurating or re‐structuring the consultancy services to LTC facilities. Further it would be desirable to establish more postgraduate training programmes to increase clinical and ethical competence in the area of gerodontology.     

The potential importance of podocysts to the formation of scyphozoan blooms: a review

Podocysts are cysts with stored reserves of organic compounds produced beneath the pedal discs of polyps of scyphozoans in the orders Rhizostomae (suborder Dactyliophorae) and Semaeostomae. They excyst small polyps that develop into fully active polyps (scyphistomae) capable of further podocyst production and of medusa production by strobilation. They contribute to increasing the number of polyps and also to survival through seasonal periods of reduced food availability or predation. These attributes may help support scyphozoan blooms, but as yet there are few quantitative data. Guest editors: K. A. Pitt & J. E. Purcell Jellyfish Blooms: Causes, Consequences, and Recent Advances     

Ectogenesis,abortion and a right to the death of the fetus

Many people believe that the abortion debate will end when at some point in the future it will be possible for fetuses to develop outside the womb. Ectogenesis, as this technology is called, would make possible to reconcile pro‐life and pro‐choice positions. That is because it is commonly believed that there is no right to the death of the fetus if it can be detached alive and gestated in an artificial womb. Recently Eric Mathison and Jeremy Davis defended this position, by arguing against three common arguments for a right to the death of the fetus. I claim that their arguments are mistaken. I argue that there is a right to the death of the fetus because gestating a fetus in an artificial womb when genetic parents refuse it violates their rights not to become a biological parent, their rights to genetic privacy and their property rights. The right to the death of the fetus, however, is not a woman's right but genetic parents’ collective right which only can be used together.     

The response of stream periphyton to Pacific salmon: using a model to understand the role of environmental context

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Local floral composition and the behaviour of pollinators: attraction to and foraging within experimental patches

1. Understanding how foraging decisions take place at the local scale is relevant because they may directly affect the fitness of individual plants. However, little is known about how local diversity and density affect the foraging behaviour of most pollinator groups. 2. By introducing two potted plant species (Salvia farinacae and Tagetes bonanza) into two populations of Taraxacum officinale, we investigated how plant identity, the mixtures of these plant species, and total plant density affected the attraction to and the foraging within a patch for six pollinator groups. 3. The foraging behaviour was mainly driven by the availability of the preferred plant species, and secondly by patch diversity and density. In general, dense patches and those containing the three‐species mixture were preferred by all insect groups for arrival, although muscoid and hover flies responded less to local floral composition than bees. Local diversity and density had, however, a weaker effect on foraging behaviour within patches. Site dependence in response to floral treatments could be attributable to differences between sites in pollinator assemblage and Taraxacum density. 4. Studies like ours will help to understand how foraging decisions occur at the local scale and how foraging patterns may differ between pollinators and sites.