Total pain and social suffering: marginalised Greenlanders' end-of-life in Denmark

With a focus on socially marginalised Greenlanders in Denmark, this study explores the significance of the concept of social suffering for the concept of total pain. Greenland is a former Danish colony and Greenlanders retain the right to Danish citizenship with all the benefits of access to the resources of Denmark as any other Danish citizen. However, Greenlanders are overrepresented amongst the most socially disadvantaged in Denmark. They have a disproportionately high risk of early death, often undiagnosed and untreated. This study reports on research conducted with socially marginalised Greenlanders and some of the professionals who work with them. It interrogates the concept of total pain as developed by Cicely Saunders, the founder of modern palliative care. Saunders noted that pain at the end-of-life was not adequately explained by symptoms of a disease process because it was more like a situation that engulfed every aspect of the patient and those close to them; it included physical, psychological, spiritual, and social dimensions. We agree with other scholars that the social dimension of the total pain experience is underexplored. By drawing on the theoretical and methodological lens of intersectionality, our work with marginalised Greenlanders has enabled us to describe the multiple and intersecting social forces that create social suffering for this group. This leads us to conclude that social suffering is not entirely an individual experience but a product of social harm and disadvantage, poverty, inequality, and the various legacies of colonialism, which combine to place some citizens in a harmed condition. Our findings also draw us into a discussion with the concept of total pain and its neglect of the socially constructed nature of social suffering. We conclude by indicating ways in which the concept of total pain can be informed by a more thoroughgoing concept of social suffering. We conclude, with others, that there is a problem of inequity in the way that end-of-life care is currently distributed. Finally, we point to ways in which an understanding of social suffering can help to address the exclusion of some of the most vulnerable citizens from appropriate end-of-life care

11p Microdeletion including WT1 but not PAX6, presenting with cataract, mental retardation, genital abnormalities and seizures: a case report

WAGR syndrome (Wilms' tumor, aniridia, genitourinary abnormalities and mental retardation) and Potocki-Shaffer syndrome are rare contiguous gene deletion syndromes caused by deletions of the 11p14-p12 chromosome region

Dynamics of competing heterogeneous clones in blood cancers explains multiple observations - a mathematical modeling approach

Heterogeneity of stem cell clones provide a key ingredient in altered hematopoiesis and is of main interest in the study of predisease states as well as in the development of blood cancers such as chronic myeloid leukemia (CML) and the Philadelphia-negative myeloprofilerative neoplasms (MPNs). A mathematical model based on biological mechanisms and basic cell descriptors such as proliferation rates and apoptosis rates is suggested, connecting stem cell dynamics with mature blood cells and immune mediated feedback. The flexible approach allows for arbitrary numbers of mutated stem cell clones with perturbed properties. In particular, the stem cell niche provides a competition between wild type and mutated stem cells. Hence, the stem cell niche can mediate suppression of the wild type clones and up-regulation of one or more malignant clones. The model is parameterized using clinical data to show typical disease progression in several blood cancers and the hematological and molecular response to treatment. Intriguingly, occasional oscillatory cell counts observed during treatment of CML and MPNs can be explained by heterogeneous stem cell clone dynamics. Thus, the vital heterogeneous stem cell dynamics may be inferred from mathematical modeling in synergy with clinical data to elucidate hematopoiesis, blood cancers and the outcome of interventions