Although unanimity exists on using palliative sedation (PS) for controlling refractory physical suffering in end-of-life situations, using it for controlling refractory existential suffering (PS-ES) ...is controversial. Complicating the debate is that definitions and terminology for existential suffering are unclear, ambiguous, and imprecise, leading to a lack of consensus for clinical practice.
To systematically identify, describe, analyze, and discuss ethical arguments and concepts underpinning the argument-based bioethics literature on PS-ES.
We conducted a systematic search of the argument-based bioethics literature in PubMed, CINAHL, Embase®, The Philosopher's Index, PsycINFO®, PsycARTICLES®, Scopus, ScienceDirect, Web of Science, Pascal-Francis, and Cairn. We included articles published in peer-reviewed journals till December 31, 2016, written in English or French, which focused on ethical arguments related to PS-ES. We used Peer Review of Electronic Search Strategies protocol, Preferred Reporting Items for Systematic Reviews and Meta-Analyses, and The Qualitative Analysis Guide of Leuven for data extraction and synthesis of themes.
We identified 18 articles that met the inclusion criteria. Our analysis revealed mind-body dualism, existential suffering, refractoriness, terminal condition, and imminent death as relevant concepts in the ethical debate on PS-ES. The ethical principles of double effect, proportionality, and the four principles of biomedical ethics were used in argumentations in the PS-ES debate.
There is a clear need to better define the terminology used in discussions of PS-ES and to ground ethical arguments in a more effective way. Anthropological presuppositions such as mind-body dualism underpin the debate and need to be more clearly elucidated using an interdisciplinary approach.
•Ethical arguments and grounding concepts on care robot use in aged care are diverse.•Deeper understanding of the ethical debate on care robot use is provided.•Deontology, principlism, object-list ...theory, or care ethics motivate most ethical arguments.•Authors’ view of care robots reveals their understanding of the ethical landscape and vice versa.•Ethical assessments and reasoning strengthen each other but need to be distinguished.
As care robots become more commonplace in aged-care settings, the ethical debate on their use becomes increasingly important. Our objective was to examine the ethical arguments and underlying concepts used in the ethical debate on care robot use in aged care.
We conducted a systematic literature search for argument-based ethics publications focusing on care robot use in aged-care practices. We used an innovative methodology that consisted of three steps: (a) identifying conceptual-ethical questions, (b) conducting a literature search, and (c) identifying, describing and analyzing the ethical arguments in connection with the conceptual-ethical questions.
Twenty-eight appropriate publications were identified. All were published between 2002 and 2016. Four primary ethical approaches were distinguished: (a) a deontological, (b) a principlist, (c) an objective-list, and (d) a care-ethical. All approaches were equally represented across the articles, and all used similar concepts that grounded their diverse ethical arguments. A small group of publications could not be linked to an ethical approach.
All included publications presented a strong ethical rationale based on fully elaborated normative arguments. Although the reviewed studies used similar grounding concepts, the studies’ arguments were very diverse and sometimes diametrically opposed. Our analysis shows how one envisions care robot use in aged-care settings is influenced by how one views the traditional boundaries of the ethical landscape in aged care. We suggest that an ethical analysis of care robot use employs “democratic spaces,” in which all stakeholders in aged care, especially care recipients, have a voice in the ethical debate.
Objectives: The aim of this review was to gain a better understanding of how older adults experience, perceive, think, and feel about the use of socially assistive robots (SARs) in aged care ...settings.
Method: We conducted a literature search for studies that used a qualitative or a mixed-method approach having a significant qualitative element. Pubmed, Cinahl, Embase, Scopus, and Web of Science electronic databases were queried. Candidate articles published in journals and conference proceedings were considered for review. Two independent reviewers assessed the included studies for methodological quality using the Critical Appraisal Skills Program, after which data on subjects' self-reported opinions and perceptions were extracted and synthesized using thematic analyses.
Results: Seventeen studies producing 23 publications were included. Based on the opinions of older adults, four themes emerged in relation to the use of SARS: (1) roles of a SAR; (2) interaction between the older adult and the SAR, which could be further subdivided into (a) the technical aspect of the interaction and (b) the human aspect of the interaction; (3) appearance of the SAR; and (4) normative/ethical issues regarding the use of SARs in aged care.
Conclusions: Older adults have clear positive and negative opinions about different aspects of SARs in aged care. Nonetheless, some opinions can be ambiguous and need more attention if SARs are to be considered for use in aged care. Understanding older adults' lived experiences with SARs creates the possibility of using an approach that embeds technological innovation into the care practice itself.
Respect for autonomy is a key concept in contemporary bioethics and end-of-life ethics in particular. Despite this status, an individualistic interpretation of autonomy is being challenged from the ...perspective of different theoretical traditions. Many authors claim that the principle of respect for autonomy needs to be reconceptualised starting from a relational viewpoint. Along these lines, the notion of relational autonomy is attracting increasing attention in medical ethics. Yet, others argue that relational autonomy needs further clarification in order to be adequately operationalised for medical practice. To this end, we examined the meaning, foundations, and uses of relational autonomy in the specific literature of end-of-life care ethics.
Using PRESS and PRISMA procedures, we conducted a systematic review of argument-based ethics publications in 8 major databases of biomedical, philosophy, and theology literature that focused on relational autonomy in end-of-life care. Full articles were screened. All included articles were critically appraised, and a synthesis was produced.
Fifty publications met our inclusion criteria. Twenty-eight articles were published in the last 5 years; publications were originating from 18 different countries. Results are organized according to: (a) an individualistic interpretation of autonomy; (b) critiques of this individualistic interpretation of autonomy; (c) relational autonomy as theoretically conceptualised; (d) relational autonomy as applied to clinical practice and moral judgment in end-of-life situations.
Three main conclusions were reached. First, literature on relational autonomy tends to be more a 'reaction against' an individualistic interpretation of autonomy rather than be a positive concept itself. Dichotomic thinking can be overcome by a deeper development of the philosophical foundations of autonomy. Second, relational autonomy is a rich and complex concept, formulated in complementary ways from different philosophical sources. New dialogue among traditionally divergent standpoints will clarify the meaning. Third, our analysis stresses the need for dialogical developments in decision making in end-of-life situations. Integration of these three elements will likely lead to a clearer conceptualisation of relational autonomy in end-of-life care ethics. This should in turn lead to better decision-making in real-life situations.
Vulnerability is a key concept in traditional and contemporary bioethics. In the philosophical literature, vulnerability is understood not only to be an ontological condition of humanity, but also to ...be a consequence of contingent factors. Within bioethics debates, vulnerable populations are defined in relation to compromised capacity to consent, increased susceptibility to harm, and/or exploitation. Although vulnerability has historically been associated with older adults, to date, no comprehensive or systematic work exists on the meaning of their vulnerability. To fill this gap, we analysed the literature on aged care for the meaning, foundations, and uses of vulnerability as an ethical concept. Using PRISMA guidelines, we conducted a systematic review of argument-based ethics literature in four major databases: PubMed, EmbaseR, Web of ScienceTM, and Philosopher's Index. These covered biomedical, philosophy, bioethical, and anthropological literature. Titles, abstracts, and full texts of identified papers were screened for relevance. The snowball technique and citation tracking were used to identify relevant publications. Data analysis and synthesis followed the preparatory steps of the coding process detailed in the QUAGOL methodology. Thirty-eight publications met our criteria and were included. Publication dates ranged from 1984 to 2020, with 17 publications appearing between 2015 and 2020. Publications originated from all five major continents, as indicated by the affiliation of the first author. Our analyses revealed that the concept of vulnerability could be distinguished in terms of basic human and situational vulnerability. Six dimensions of older adults' vulnerability were identified: physical; psychological; relational/interpersonal; moral; sociocultural, political, and economic; and existential/spiritual. This analysis suggested three ways to relate to older adults' vulnerability: understanding older adults' vulnerability, taking care of vulnerable older adults, and intervening through socio-political-economic measures. The way in which vulnerability was conceptualised in the included publications overlaps with distinctions used within contemporary bioethics literature. Dimensions of aged care vulnerability map onto defining features of humans, giving weight to the claim that vulnerability represents an inherent characteristic of humans. Vulnerability is mostly a value-laden concept, endowed with positive and negative connotations. Most publications focused on and promoted aged care, strengthening the idea that care is a defining practice of being human.
Respect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to ...align well with patients' preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of 'relational autonomy' may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized. This article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices.
Abstract
Background
One of the most important and ethically challenging decisions made for children with life-limiting conditions is withholding/withdrawing life-sustaining treatments (LST). As ...important (co-)decision-makers in this process, physicians are expected to have deeply and broadly developed views. However, their attitudes and experiences in this area remain difficult to understand because of the diversity of the studies. Hence, the aim of this paper is to describe physicians’ attitudes and experiences about withholding/withdrawing LST in pediatrics and to identify the influencing factors.
Methods
We systematically searched Pubmed, Cinahl®, Embase®, Scopus®, and Web of Science™ in early 2021 and updated the search results in late 2021. Eligible articles were published in English, reported on investigations of physicians’ attitudes and experiences about withholding/withdrawing LST for children, and were quantitative.
Results
In 23 included articles, overall, physicians stated that withholding/withdrawing LST can be ethically legitimate for children with life-limiting conditions. Physicians tended to follow parents’ and parents-patient’s wishes about withholding/withdrawing or continuing LST when they specified treatment preferences. Although most physicians agreed to share decision-making with parents and/or children, they nonetheless reported experiencing both negative and positive feelings during the decision-making process. Moderating factors were identified, including barriers to and facilitators of withholding/withdrawing LST. In general, there was only a limited number of quantitative studies to support the hypothesis that some factors can influence physicians’ attitudes and experiences toward LST.
Conclusion
Overall, physicians agreed to withhold/withdraw LST in dying patients, followed parent-patients’ wishes, and involved them in decision-making. Barriers and facilitators relevant to the decision-making regarding withholding/withdrawing LST were identified. Future studies should explore children’s involvement in decision-making and consider barriers that hinder implementation of decisions about withholding/withdrawing LST.
Abstract
Background
With paediatric patients, deciding whether to withhold/withdraw life-sustaining treatments (LST) at the end of life is difficult and ethically sensitive. Little is understood ...about how and why physicians decide on withholding/withdrawing LST at the end of life in paediatric patients. In this study, we aimed to synthesise results from the literature on physicians’ perceptions about decision-making when dealing with withholding/withdrawing life-sustaining treatments in paediatric patients.
Methods
We conducted a systematic review of empirical qualitative studies. Five electronic databases (Pubmed, Cinahl®, Embase®, Scopus®, Web of Science™) were exhaustively searched in order to identify articles published in English from inception through March 17, 2021. Analysis and synthesis were guided by the Qualitative Analysis Guide of Leuven.
Results
Thirty publications met our criteria and were included for analysis. Overall, we found that physicians agreed to involve parents, and to a lesser extent, children in the decision-making process about withholding/withdrawing LST. Our analysis to identify conceptual schemes revealed that physicians divided their decision-making into three stages: (1) early preparation via advance care planning, (2) information giving and receiving, and (3) arriving at the final decision. Physicians considered advocating for the best interests of the child and of the parents as their major focus. We also identified moderating factors of decision-making, such as facilitators and barriers, specifically those related to physicians and parents that influenced physicians’ decision-making.
Conclusions
By focusing on stakeholders, structure of the decision-making process, ethical values, and influencing factors, our analysis showed that physicians generally agreed to share the decision-making with parents and the child, especially for adolescents. Further research is required to better understand how to minimise the negative impact of barriers on the decision-making process (e.g., difficult involvement of children, lack of paediatric palliative care expertise, conflict with parents).
Nurses are frequently confronted with ethical dilemmas in their nursing practice. As a consequence, nurses report experiencing moral distress. The aim of this review was to synthesize the available ...quantitative evidence in the literature on moral distress experienced by nurses. We appraised 19 articles published between January 1984 and December 2011. This review revealed that many nurses experience moral distress associated with difficult care situations and feel burnout, which can have an impact on their professional position. Further research is required to examine worksite strategies to support nurses in these situations and to develop coping strategies for dealing with moral distress.
As pediatricians play a vital role in pediatric palliative care (PPC), understanding their perspectives toward PPC is important. PPC is established for a long time in Belgium, but has a shorter ...tradition in China, although it is growing in the last decade. Sampling and comparing the perspectives of these pediatricians could be insightful for both countries. Therefore, we sampled and compared perspectives of pediatricians in China and Belgium toward PPC, and explored factors influencing their perspectives.
We conducted a cross-sectional online survey using the validated Pediatric Palliative Care Attitude Scale (PPCAS). Over a five-month period, we recruited pediatricians practicing in China (C) and Flanders (F), Belgium. Convenience sampling and snowballing were used. We analyzed data with descriptive statistics, and evaluated group differences with univariate, multivariate and correlation tests.
440 complete surveys were analyzed (F: 115; C: 325). Pediatricians in both regions had limited PPC experience (F: 2.92 ± 0.94; C: 2.76 ± 0.92). Compared to Flemish pediatricians, Chinese pediatricians perceived receiving less unit support (F: 3.42 ± 0.86; C: 2.80 ± 0.89); perceived PPC less important (F: 4.70 ± 0.79; C: 4.18 ± 0.94); and faced more personal obstacles while practicing PPC (F: 3.50 ± 0.76; C: 2.25 ± 0.58). Also, select socio-demographic characteristics (e.g., experiences caring for children with life-threatening condition and providing PPC) influenced pediatricians' perspectives. Correlational analyses revealed that pediatricians' PPC experiences significantly correlated with perceived unit support (ρ
= 0.454; ρ
0.661).
Chinese pediatricians faced more barriers in practicing PPC. Expanding PPC experiences can influence pediatricians' perspectives positively, which may be beneficial for the child and their family.
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