The broad spectrum of unbearable suffering in end of life cancer studied in dutch primary care

<p>Abstract</p> <p>Background</p> <p>Unbearable suffering most frequently is reported in end-of-life cancer patients in primary care. However, research seldom addresses unbearable suffering. The aim of this study was to comprehensively investigate the various aspects of unbearable suffering in end-of-life cancer patients cared for in primary care.</p> <p>Methods</p> <p>Forty four general practitioners recruited end-of-life cancer patients with an estimated life expectancy of half a year or shorter. The inclusion period was three years, follow-up lasted one additional year. Practices were monitored bimonthly to identify new cases. Unbearable aspects in five domains and overall unbearable suffering were quantitatively assessed (5-point scale) through patient interviews every two months with a comprehensive instrument. Scores of 4 (serious) or 5 (hardly can be worse) were defined unbearable. The last interviews before death were analyzed. Sources providing strength to bear suffering were identified through additional open-ended questions.</p> <p>Results</p> <p>Seventy six out of 148 patients (51%) requested to participate consented; the attrition rate was 8%, while 8% were alive at the end of follow-up. Sixty four patients were followed up until death; in 60 patients interviews were complete. Overall unbearable suffering occurred in 28%. A mean of 18 unbearable aspects was present in patients with serious (score 4) overall unbearable suffering. Overall, half of the unbearable aspects involved the domain of traditional medical symptoms. The most frequent unbearable aspects were weakness, general discomfort, tiredness, pain, loss of appetite and not sleeping well (25%-57%). The other half of the unbearable aspects involved the domains of function, personhood, environment, and nature and prognosis of disease. The most frequent unbearable aspects were impaired activities, feeling dependent, help needed with housekeeping, not being able to do important things, trouble accepting the situation, being bedridden and loss of control (27%-55%). The combination of love and support was the most frequent source (67%) providing strength to bear suffering.</p> <p>Conclusions</p> <p>Overall unbearable suffering occurred in one in every four end-of-life cancer patients. Half of the unbearable aspects involved medical symptoms, the other half concerned psychological, social and existential dimensions. Physicians need to comprehensively assess suffering and provide psychosocial interventions alongside physical symptom management.</p

Unbearability of suffering at the end of life: the development of a new measuring device, the SOS-V

AbstractBackgroundUnbearable suffering is an important issue in end-of-life decisions. However, there has been no systematic, prospective, patient-oriented research which has focused on unbearable suffering, nor is there a suitable measurement instrument. This article describes the methodological development of a quantitative instrument to measure the nature and intensity of unbearable suffering, practical aspects of its use in end-stage cancer patients in general practice, and studies content validity and psychometric properties.MethodsRecognizing the conceptual difference between unbearability of suffering and extent or intensity of suffering, we developed an instrument. The compilation of aspects considered to be of importance was based on a literature search. Psychometric properties were determined on results of the first interviews with 64 end-stage cancer patients that participated in a longitudinal study in the Netherlands.ResultsThe instrument measures five domains: medical signs and symptoms, loss of function, personal aspects, aspects of environment, and nature and prognosis of the disease. Sixty nine aspects were investigated, and an overall score was asked. In 64 end-stage cancer patients the instrument was used in total 153 times with an average interview time varying from 20-40 minutes. Cronbachs alpha's of the subscales were in majority above 0.7. The sum scores of (sub)scales were correlated strongly to overall measures on suffering.ConclusionThe SOS-V is an instrument for measuring the unbearability of suffering in end-stage cancer patients with good content validity and psychometric properties, which is feasible to be used in practice. This structured instrument makes it possible to identify and study unbearable suffering in a quantitative and patient-oriented way

A function-based typology for Earth's ecosystems

This is the final version. Available on open access from Nature Research via the DOI in this recordData availability: Descriptions, images and interactive maps for the typology are updated periodically at https://global-ecosystems.org/. The spatial data for this study are available at Zenodo (https://doi.org/10.5281/zenodo.3546513).As the United Nations develops a post-2020 global biodiversity framework for the Convention on Biological Diversity, attention is focusing on how new goals and targets for ecosystem conservation might serve its vision of 'living in harmony with nature'1,2. Advancing dual imperatives to conserve biodiversity and sustain ecosystem services requires reliable and resilient generalizations and predictions about ecosystem responses to environmental change and management3. Ecosystems vary in their biota4, service provision5 and relative exposure to risks6, yet there is no globally consistent classification of ecosystems that reflects functional responses to change and management. This hampers progress on developing conservation targets and sustainability goals. Here we present the International Union for Conservation of Nature (IUCN) Global Ecosystem Typology, a conceptually robust, scalable, spatially explicit approach for generalizations and predictions about functions, biota, risks and management remedies across the entire biosphere. The outcome of a major cross-disciplinary collaboration, this novel framework places all of Earth's ecosystems into a unifying theoretical context to guide the transformation of ecosystem policy and management from global to local scales. This new information infrastructure will support knowledge transfer for ecosystem-specific management and restoration, globally standardized ecosystem risk assessments, natural capital accounting and progress on the post-2020 global biodiversity framework.Natural Environment Research Council (NERC

Comparing Utilization of Life-Sustaining Treatments with Patient and Public Preferences

OBJECTIVE: The movement for advance planning of end-of-life care was motivated in part by the assumption that medical intervention for terminally ill patients varies from what these patients would prefer. We examined the validity of this assumption by comparing actual life-sustaining treatment practices for patients in critical illness scenarios and surveyed patients' advance care preferences. MEASUREMENTS AND MAIN RESULTS: We selected at random and reviewed 7,400 inpatient medical records from a single urban teaching hospital during the period just prior to the Patient Self-Determination Act. Records of 198 patients with conditions that matched advance directive scenarios were examined, and practices to withhold or withdraw seven life-sustaining treatments were documented. Practices were compared with surveyed preferences of 102 members of the general public and 495 outpatients who were followed by the same physicians as the 198 patients. Concordance of practices and preferences for the 19 surveyed outpatients who eventually fell into one of the scenarios was also evaluated. One hundred sixty-seven inpatient cases met review criteria for the scenario coma with a small chance of recovery. Hospital patients received medical interventions that were not consistently greater or less than the preferences of the surveyed outpatients or members of the general public. Resuscitation, the most frequently withheld treatment (94% of cases), was withheld more often than surveyed preferences to decline it (56% of outpatients, p < .001). Four treatments—mechanical breathing, artificial nutrition, major surgery, and hemodialysis—were utilized comparably to surveyed outpatients' preferences (range p=.704 –.055). Antibiotics and artificial hydration were withheld (9% and 6%, respectively) less often than surveyed outpatient's prior preferences to decline them (48% and 52%, respectively, p < .001 for each). Conversely, treatments given to the 19 surveyed patients who subsequently developed one of the illness scenarios were often incongruent with the patients' prior preferences. Again, in some cases more interventions were provided (26 of 63 declined treatments were given), and in some cases less (10 of 21 desired treatments were withheld). CONCLUSIONS: This study does not support the assumption that, collectively, patients' advance care preferences are less interventionist than actual practices for patients in corresponding scenarios. Nevertheless, these results do support the assumption that life-sustaining treatment decisions do not conform well to individual patients' specific preferences. Progress in end-of-life care should focus on shared decision making at the patient-proxy-physician level rather than on overall life-sustaining treatments utilization