One barrier to optimal pain management in the neonatal intensive care unit (NICU) is how the healthcare community perceives, and therefore manages, neonatal pain. In this paper, we emphasise that healthcare professionals not only have a professional obligation to care for neonates in the NICU, but that these patients are intrinsically worthy of care. We discuss the conditions that make neonates worthy recipients of pain management by highlighting how neonates are (1) vulnerable to pain and harm, and (2) completely dependent (...) on others for pain management. We argue for a relational account of ethical decision-making in the NICU by demonstrating how an increase in vulnerability and dependence may be experienced by the healthcare community and the neonate’s family. Finally, an ethical framework for decisions around neonatal pain management is proposed, focussing on surrogate decision-making and the importance of compassionate action through both a reflective and an affective empathy. As empathy can be highly motivating against pain, we propose that, in addition to educational programs that raise awareness and knowledge of neonatal pain and pain management, healthcare professionals must cultivate empathy in a collective manner, where all members of the NICU team, including parents, are compassionate decision-makers. (shrink)

Background Healthcare services are increasingly being shifted to home settings for patients nearing end-of-life. Consequently, the burden on family caregivers is significant. Their vulnerable situation remains poorly understood and there is little information available regarding their experiences of dignity. Aim This study seeks to understand the experiences of family caregivers related to dignity and loss of dignity, aiming to provide a deeper insight into their situation when caring for a home-dwelling family member nearing end-of-life. Research design and participants This exploratory (...) study consists of a second analysis combining data from two primary studies, including 24 family caregivers of a family member nearing end-of-life, and is founded upon Gadamer’s philosophical hermeneutics. Ethical considerations Approval was obtained from the Norwegian Agency for Shared Services in Education and Research and was based on voluntary participation, informed consent, and confidentiality. Results The following three main themes were identified: Having a meaningful existence within the living environment, being seen and valued as a family caregiver in relation with others and suffering in a space of loneliness. These contextual, relational, and existential perspectives were found to be closely interrelated. Conclusion and final considerations The dignity of family caregivers was closely tied to being seen as unique individuals, not merely caregivers, thereby requiring healthcare professionals (HCPs) to understand their personal needs. This study highlights the emotional distress and loneliness family caregivers feel in their dual role within the healthcare system, thereby calling for HCPs to adopt an attitude of gentleness and recognition to impart dignity-preserving care in homecare practices. (shrink)

Quality of Life Reach in Medical Care Alcance da qualidade de vida no atendimento médico The term quality of life has increasingly widespread use in biomedical practice, especially in end-of-life situations. Experience shows that the expression is often used with very different —and sometimes conflicting— scopes. The present article presents the results of a literature review that show diverse positions, while delimitating the subject. The analysis compares the terms “quality of life,” “human dignity,” and “value of human life.” Para citar (...) este artículo / To reference this article / Para citar este artigo Páez G, López-Gabeiras MP, Moreno-D’Anna M. Alcance de la “calidad de vida” en atención médica. Pers Bioet. 2020;24:14-27. DOI: https://doi.org/10.5294/pebi.2020.24.1.2 Recibido: 06/11/2019 Aceptado: 04/03/2020 Publicado: 07/05/2020. (shrink)

Background Clinical empathy is an essential part of healthcare, and patient-centered care models require clinical empathy to be established. Despite this, little is known about its measurement in the neonatal scenario. Research Aim To measure clinical empathy in health professionals who work with medium and high-risk neonates and build a construct of this empathy. Research Design Single-center survey study. Participants and Research Context The Jefferson Scale of Empathy for Health Professionals questionnaire was applied to health professionals who work in an (...) intensive care unit and a medium-risk unit, in Brazil. Analysis was done using descriptive statistics and a factor analysis model, to build the construct of empathy. Overall empathy was calculated, and the domains’ punctuations were analyzed and compared to the maximum punctuation possible. The study followed the STROBE checklist. Ethical Considerations This study was approved by the Research Ethics Committee of the institution. All participants signed the informed consent form. Participants’ confidentiality and anonymity were protected. Findings Median empathy was 117 (IQR 113–124). The domain of Walking in the Patient’s Shoes had lower scores and represented 77.6% of the maximum punctuation possible. The factor analysis included three factors named Understanding, Experiences, and Treatment, and Emotional Relationships, explaining 64.3% of the overall variance. The domain Walking in the Patient’s Shoes was not included in the model. Conclusions In this scenario, clinical empathy should improve. There is a need to improve the domain of Walking in the Patient’s Shoes, in this case, the neonate, and provide more empathic care to them. (shrink)

Scholars have demonstrated that common ways of performing charitable food aid in high-income countries maintain a powerless and alienated status of recipients. Aiming to protect the dignity of recipients, alternative forms of food aid have taken shape. However, an in-depth understanding of dignity in the context of food aid is missing. We undertook a scoping review to outline ways in which the dignity of recipients is violated or protected across various forms of food aid in high-income countries. By bringing scientific (...) results together through a social dignity lens, this paper offers a complex understanding of dignity in the context of food aid. The online database Scopus was used to identify scientific literature addressing food aid in relation to the dignity of recipients in high-income countries. The final selection included 37 articles representing eight forms of food aid in twelve countries. Across diverse forms of food aid, the selected studies report signs of (in)dignity concerning five dimensions: access to food aid, social interactions, the food, the physical space, and needs beyond food. Research gaps are found in the diversity of forms of food aid studied, and the identification of social standards important for recipients. Bringing the results of 37 articles together through a social dignity lens articulates the complex and plural ways in which the dignity of recipients is violated or protected. In addition, this review has demonstrated the usefulness of a social dignity lens to understand dignity across and in particular food aid contexts. (shrink)

Dignity is a universal principle that requires us to treat every person as having worth beyond who a particular person is or what they do. Dignity is a complex and sometimes contested idea, that at times can be compromised in health care and allegedly also within the practice of outdoor therapy. Outdoor therapies comprise a range of therapeutic approaches including nature-based therapy, adventure therapy, animal-assisted therapy, forest therapy, wilderness therapy, surf therapy, and more. Within the literature of outdoor therapies there (...) has been limited research on ethics related to common understandings of care concepts such as relational dignity and human rights. The aim of this paper is therefore to unravel briefly whether dignity in general, and relational qualities of dignified care more particularly, might be a useful concept to apply in order to support an ethical practice in outdoor therapies. (shrink)

Dignified care is a central issue in the nursing care of older adults. Nurses are expected to treat older adults with dignity, and older adults wish to be treated in a dignified manner. Researchers have recommended investigating the concept of dignity based on specific contexts and population groups. This meta-synthesis study aims to explore the understandings of dignity from the perspective of older adults in the Nordic countries. Synthesising findings from qualitative studies on older adults’ experiences of dignity has provided (...) important insight into what can be essential for dignified care in a Nordic context. The importance of visibility and recognition for the experience of dignity is an overarching theme in all the studies. The participants’ descriptions mostly implicated an existence dominated by a lack of recognition. The older adults do not feel valued as people or for their contribution to society and strive to tone down their illnesses in an attempt to become more visible and acknowledged as people. Toning down their illnesses and masking their needs can protect their independence. At the same time, becoming less visible can leave them without a voice. The metaphorical phrase protected and exposed by a cloak of invisibility is used to express the authors’ overall interpretation of the findings. Lack of recognition and being socially invisible is a genuine threat to older adults’ dignity. (shrink)