Ethical Challenges for Plastic Surgery in Treating Internationally Adopted Children With Cleft Lip and Palate.

A large number of children with cleft lip and palate (CLP) were adopted to Sweden in the last decade, mainly from China. Most of the children arrived with unoperated palates and at later ages than earlier years. This article aims to present an overview of ethical challenges within the practice of international adoption of children with CLP from the perspective of plastic surgery in a welfare health care system. An overview of CLP treatment is presented, followed by a normative discussion and ethical analysis using the 4 principles of Beauchamp and Childress: non-maleficence, beneficence, autonomy, and justice. The following themes and subthemes were analyzed: the search for normality and the potential challenge of being adopted and having CLP-treatment autonomy of the child and future preferences, adoptive parents' expectations of plastic surgery, the journey of the adoptee and the adoptive parents; and general issues-reconstructive possibilities and consequences of CLP in the country of origin, information to the adoptive parents, health care needs, and reconstructive possibilities for children with CLP in the receiving country. Clinical implications are discussed, and suggestions for future research are provided.

[Is individualized education for a medical students desirable? A common policy on how to handle medical students requests for individual adaptations is needed]. / Bör individualiserad utbildning för läkarstudenter eftersträvas?

In Sweden, freedom of conscience for health care professionals is not legally permitted. However, requests from medical students to adjust and/or skip compulsory learning activities because of their religious and moral convictions appear to get more abundant. This creates problems when learning activities are directly related to the examination objectives stated by the Higher Education Ordinance of Sweden. Allowing students to abstain from certain parts of the medical program raises difficulties as to what kind of convictions that should be accepted and to what degree. Questions arise regarding equality of learning opportunities, assessment, and reasonable resource allocation. We call for national debate regarding these issues, which different universities now are forced to handle on their own, with the aim of establishing a common approach.

An Egalitarian Perspective on Information Sharing: The Example of Health Care Priorities.

In health care, the provision of pertinent information to patients is not just a moral imperative but also a legal obligation, often articulated through the lens of obtaining informed consent. Codes of medical ethics and many national laws mandate the disclosure of basic information about diagnosis, prognosis, and treatment alternatives. However, within publicly funded health care systems, other kinds of information might also be important to patients, such as insights into the health care priorities that underlie treatment offers made. While conventional perspectives do not take this as an obligatory part of the information to be shared with patients, perhaps through viewing it as clinically "non-actionable," we advocate for a paradigm shift. Our proposition diverges from the traditional emphasis on actionability. We contend that honoring patients as equal moral agents necessitates, among other principles, a commitment to honesty. Withholding specific categories of information pertinent to patients' comprehension of their situation is inherently incompatible with this principle. In this article, we advocate for a recalibration of the burden of proof. Rather than requiring special justifications for adding to the standard set of information items, we suggest that physicians should be able to justify excluding relevant facts about the patient's situation and the underlying considerations shaping health care professionals' choices. This perspective prioritizes transparency and empowers patients with a comprehensive understanding, aligning with the ethos of respect for the patient as person.

Discrepancy in responses to the surprise question between hemodialysis nurses and physicians, with focus on patient clinical characteristics: A comparative study.

INTRODUCTION: The surprise question (SQ) "Would I be surprised if this patient died within the next xx months" can be used by different professions to foresee the need of serious illness conversations in patients approaching end of life. However, little is known about the different perspectives of nurses and physicians in responses to the SQ and factors influencing their appraisals. The aim was to explore nurses' and physicians' responses to the SQ regarding patients on hemodialysis, and to investigate how these answers were associated with patient clinical characteristics. METHODS: This comparative cross-sectional study included 361 patients for whom 112 nurses and 15 physicians responded to the SQ regarding 6 and 12 months. Patient characteristics, performance status, and comorbidities were obtained. Cohen's kappa was used to analyze the interrater agreement between nurses and physicians in their responses to the SQ and multivariable logistic regression was applied to reveal the independent association to patient clinical characteristics. FINDINGS: Proportions of nurses and physicians responding to the SQ with "no, not surprised" was similar regarding 6 and 12 months. However, there was a substantial difference concerning which specific patient the nurses and physicians responded "no, not surprised", within 6 (κ = 0.366, p < 0.001, 95% CI = 0.288-0.474) and 12 months (κ = 0.379, p < 0.001, 95% CI = 0.281-0.477). There were also differences in the patient clinical characteristics associated with nurses' and physicians' responses to the SQ. DISCUSSION: Nurses and physicians have different perspectives in their appraisal when responding to the SQ for patients on hemodialysis. This may reinforce the need for communication and discussion between nurses and physicians to identify the need of serious illness conversations in patients approaching the end of life, in order to adapt hemodialysis care to patient preferences and needs.

Processes toward the end of life and dialysis withdrawal Physicians' and nurses' perspectives.

BACKGROUND: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory. AIM: The aim was to explore physicians' and nurses' perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease. RESEARCH DESIGN AND PARTICIPANTS: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis was used to analyse data. ETHICAL CONSIDERATIONS: Ethical approval was obtained (Dnr 2014/304-31). FINDINGS AND DISCUSSION: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient's decision-making process, The challenge awaiting the family members' processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress. CONCLUSION: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient's possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context.

End-of-life and palliative care of patients on maintenance hemodialysis treatment: a focus group study.

BACKGROUND: Despite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals' views on provision of care. The aim of this study was therefore to describe nurses' and physicians' perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis. METHODS: Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data. RESULTS: Participants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients' quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance. CONCLUSIONS: Nurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.

Temporising and respect for patient self-determination.

The principle of self-determination plays a crucial role in contemporary clinical ethics. Somewhat simplified, it states that it is ultimately the patient who should decide whether or not to accept suggested treatment or care. Although the principle is much discussed in the academic literature, one important aspect has been neglected, namely the fact that real-world decision making is temporally extended, in the sense that it generally takes some time from the point at which the physician (or other health care professional) determines that there is a decision to be made and that the patient is capable of making it, to the point at which the patient is actually asked for his or her view. This article asks under what circumstances, if any, temporising-waiting to pose a certain treatment question to a patient judged to have decision-making capacity-is compatible with the principle of self-determination.

Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease: A National Registry Study About the Last Week of Life.

CONTEXT: End-stage kidney disease (ESKD) is characterized by high physical and psychological burden, and therefore, more knowledge about the palliative care provided close to death is needed. OBJECTIVES: To describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD. METHODS: This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected. RESULTS: About 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44%, respectively, were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/inpatient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families. CONCLUSION: Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.

Population genetic structure, differentiation, and diversity in Tetrix subulata pygmy grasshoppers: roles of population size and immigration.

Genetic diversity within and among populations and species is influenced by complex demographic and evolutionary processes. Despite extensive research, there is no consensus regarding how landscape structure, spatial distribution, gene flow, and population dynamics impact genetic composition of natural populations. Here, we used amplified fragment length polymorphisms (AFLPs) to investigate effects of population size, geographic isolation, immigration, and gene flow on genetic structure, divergence, and diversity in populations of Tetrix subulata pygmy grasshoppers (Orthoptera: Tetrigidae) from 20 sampling locations in southern Sweden. Analyses of 1564 AFLP markers revealed low to moderate levels of genetic diversity (PPL = 59.5-90.1; Hj = 0.23-0.32) within and significant divergence among sampling localities. This suggests that evolution of functional traits in response to divergent selection is possible and that gene flow is restricted. Genetic diversity increased with population size and with increasing proportion of long-winged phenotypes (a proxy of recent immigration) across populations on the island of Öland, but not on the mainland. Our data further suggested that the open water separating Öland from the mainland acts as a dispersal barrier that restricts migration and leads to genetic divergence among regions. Isolation by distance was evident for short interpopulation distances on the mainland, but gradually disappeared as populations separated by longer distances were included. Results illustrate that integrating ecological and molecular data is key to identifying drivers of population genetic structure in natural populations. Our findings also underscore the importance of landscape structure and spatial sampling scheme for conclusions regarding the role of gene flow and isolation by distance.

High concurrent presence of disability in multiple sclerosis. Associations with perceived health.

OBJECTIVES: (1) To explore functioning and concurrent presence of disabilities - concerning cognition, manual dexterity, walking, energy, mood, activities of daily living (ADL), and social/lifestyle activities - in persons with multiple sclerosis (PwMS) cared for at an outpatient MS clinic. 2) To describe the PwMS' perceived physical and psychological impact and associations with the same disabilities. MATERIAL/METHODS: A descriptive cross-sectional study was carried out in 219 PwMS at the MS Centre, Karolinska University Hospital. Logistic regression employing proportional odds models was used to identify the associations of the disabilities with the perceived physical and psychological impact. RESULTS: In this sample the distribution with regard to disease severity as per Expanded Disability Status Scale was; mild 59.5%, moderate 17% and severe 23.5%. Despite the high proportion with mild disease severity disability regarding cognition was found in 49%, manual dexterity 76%, walking 43%, energy 67%, mood 29%, ADL 44% and social/lifestyle activities in 48%. Two or more disabilities were found in 80%, 24 % had six or seven disabilities. Disability regarding energy, mood, walking, manual dexterity and ADL was significantly associated with increase in the perceived physical impact, whereas disability in energy and mood was significantly associated with increase in the perceived psychological impact. CONCLUSIONS: The presence of several concurrent disabilities, some significantly associated with high perceived physical and psychological impact, in the majority of PwMS in outpatient clinics highlights the importance to identify disabilities, in particular fatigue and depressed mood, in order to supply health care interventions aiming to improve the life situation of PwMS.