Palliative Care For Children With Life-Limiting Conditions In Ireland- A National Policy

Palliative Care For Children With Life-Limiting Conditions In Ireland- A National Policy Click here to download PDF 1.30MB

Organisational factors affecting transition from children’s to adult services by young adults with life-limiting conditions in Ireland

Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

More young adults (YAs) with life limiting conditions (LLC) are surviving into adulthood as earlier diagnosis and improved medical management in pediatric care lead to higher rates of survival for cancer, congenital heart and neuromuscular conditions. When these YAs leave pediatric care, they leave behind comprehensive and coordinated health, social and education services for uncoordinated adult systems, with limited access to palliative services they received in pediatric care.

YAs with LLCs will benefit from a public health palliative approach to care. This approach better matches their chronic disease trajectories of a series of declining plateaus over a period of months to years, punctuated by unpredictable periodic crises. Public health palliative care is a blended provision of health care and community services based on evidence that health care is most effective and least expensive when offered in conjunction with a complement of services that reflects social determinants of health and well-being. For YAs with LLCs, these resources will support their health, social, vocational, independent living, and educational goals to maximize their opportunities in an abbreviated time frame.


The objectives of this workshop are to:

1. Provide an overview of the young adult population with palliative care needs.
2. Discuss current care of this population.
3. Highlight results from three recent projects to examine and address needs of this population.
4. Dialogue with audience about other programs, initiatives, or ideas to address the needs of this population.

We look forward to robust conversations and ideas from your practice and research.

Emergency department visits for non-life-threatening conditions : evolution over 13 years in a Swiss urban teaching hospital

INTRODUCTION: A large proportion of visits to our Emergency Department (ED) are for non-life-threatening conditions. We investigated whether patients' characteristics and reasons for consultation had changed over 13 years. METHODS: Consecutive adult patients with non-life-threatening conditions at triage were included in the spring of 2000 and in the summer of 2013. In both years patients completed a similar questionnaire, which addressed their reasons for consultation and any previous consultation with a general practitioner (GP). RESULTS: We included 581 patients in 2013 vs 516 in 2000, with a mean age of 44.5 years vs 46.4 years (p=0.128). Of these patients, 54.0% vs 57.0% were male (p=0.329), 55.5% vs 58.7% were Swiss (p=0.282), 76.4% were registered with a GP in both periods, but self-referral increased from 52.0% to 68.8% (p<0.001); 57.7% vs., 58.3% consulted during out-of- hours (p=0.821). Trauma-related visits decreased from 34.2% to 23.7% (p<0.001). Consultations within 12 hours of onset of symptoms dropped from 54.5% to 30.9%, and delays of ≥1 week increased from 14.3% to 26.9% (p<0.001). The primary motive for self-referral remained unawareness of an alternative, followed in 2013 by dissatisfaction with the GP's treatment or appointment. Patients who believed that their health problem would not require hospitalisation increased from 52.8% to 74.2% and those who were actually hospitalised decreased from 24.9% to 13.9% (all p<0.001). CONCLUSION: The number of visits for non-life-threatening consultations continue to increase. Our ED is used by a large proportion of patients as a convenient alternative source of primary care.

EFFECTS OF ION LIMITING CONDITIONS ON THE BEHAVIOR OF MICROFLUIDIC DEVICES

Finite numbers of ions are present in microfluidic devices. This leads to ion limiting effects in microfluidic channels and electrode surfaces. These effects include electrode surface changes and ion concentration gradient formation across microfluidic channels, and can influence microfluidic device behavior. A literature survey on the use of electrochemical analysis techniques in micro- and nanofluidic devices was carried out, which puts into perspective the importance of electrode surface changes with regards to analytical microfluidic applications. Surface changes in Pt wire electrodes under various physiological buffer and electric field conditions were investigated using cyclic voltammetry (CV), SEM-EDS and XPS. Effects of surface changes on electrochemical analysis performance of Pt wire and thin film electrodes were investigated. Electrode surfaces were subjected to varying phosphate buffer and electric field conditions, and their CV performance was monitored. Electrode surfaces were also studied with SEM-EDS. Two studies of ion concentration gradient formation in microfluidic channels were conducted. In the first, concentration gradients of H+ and OH- ions generated on electrode surfaces were found to cause significant pH decreases in certain buffer and electric field conditions, which was also found to play a key role in iDEP manipulation of proteins. The role of electrode surface reactions in this case shows the importance of understanding electrode surface changes in microfluidic devices. In the second study of ion concentration gradient formation, Cl- ion concentration gradient formation was attempted to be quantified upon electric field application across a KCl solution. Electrokinetic transport of the Cl- indicating fluorophore MQAE contributed significantly to the fluorescence microscopy signals collected, complicating Cl- quantification as a function of position and time. It was shown that a dielectric coating on electrode surfaces is effective at preventing MQAE electrokinetic transport.

The duration of life and conditions associated with longevity. A study of the Hyde genealogy,

Mode of access: Internet.

A palliative care needs assessment for children

The development of a children’s hospice is not seen as a priority by the respondents in this study, some of whom raised concerns regarding accessibility and cost. There is a degree of ambiguity however, regarding the role of ‘hospice’ in paediatric palliative care with some respondents associating it only with end-of-life care. There is a substantial need for ongoing education, training and development of healthcare professionals caring for children with life-limiting conditions. Palliative care services currently provided to children in Ireland with life-limiting conditions are seen to be inequitable, differing significantly according to diagnosis (malignant versus nonmalignant) and according to geographic location. This poses challenges, particularly for parents of children with non-malignant diseases. Both families and professionals often deem the physical environment for adolescents in hospitals unsuitable. The difficulties encountered in the transition from children’s services to adult services have been identified as an issue for adolescents. The provision of bereavement support varies between services. Professionals have identified the need for a broader range of bereavement services.

PHA supports World Hospice and Palliative Care Day

Saturday 8 October 2011 marks World Hospice and Palliative Care Day. The Public Health Agency would like to celebrate and support hospice and palliative care around the world by raising awareness and understanding of the needs - medical, social, practical and spiritual - of people living with a life-limiting illness, and their families.This year's World Hospice and Palliative Care Day theme is 'Many diseases, manylives, many voices - palliative care fornon-communicableconditions'.The theme will focus on how people living with conditions thatare notinfectious can benefit from palliative care.Non-communicable diseases (NCDs), which include cardiovascular diseases, cancers, chronic respiratory conditions and diabetes, make up60% of deaths worldwide. The majority of thesedeaths occur in low and middle income countries, where palliative care is often not available. To get involved in World Hospice and Palliative Care Day, log on to www.worldday.org/get-involved/ which gives you ideas and suggestions on what you can do on the day to support people living with life-limiting illnesses, and their families.Mary Hinds, Director of Nursing and Allied Health Professions, PHA, and Chair of the Implementation Process for End of Life Care in Northern Ireland, said: "Good quality palliative and end of life care will be important for us all. 'Living Matters, Dying Matters' is a five year strategy for palliative and end of life care in Northern Ireland, established to ensure that any person living with a life-threatening illness lives well and dies well, irrespective of their condition or care setting. "It has been encouraging to see the plans being taken forward by the Health and Social Care Trusts in partnership with local hospices and other providers, and involving local people."We aim to ensure that people receiving palliative care, their families and carers, are provided with high quality care across all settings and conditions, and are supported to enjoy a good quality of life, maximising their potential through the course of their illness."There is still some progress to be made within the context of the review of health and social services. We are looking for statutory and voluntary services to work together to make a significant difference in improving access to high quality services for those with life-limiting conditions, and to develop innovative approaches to care."

Possible consequences of increasing life expectancy in Brazil: the perspective of a European historical demographer

Those over sixty years of age accounted for 6.6% of the total population of Brazil in 1985, in the Federal Republic of Germany this proportion was 20.3% in 1984. As early as 1950 it had been 14.5%. This proportion will not even be reached in Brazil in the year 2000 when persons aged sixty years and older are only projected to make up 8.8% of the total population. Similarly, in 1982/84 life expectancy at birth in the Federal Republic was 70.8 years for men and 77.5 for women; in Brazil the figures for 1980/85 were, by contrast, "only" 61.0 and 66.0. Against this background it is easy to understand why the discussion concerning an ageing society with its many related medical, economic, individual and social problems has been so slow in coming into its own in Brazil. As important as a more intensive consideration of these aspects may be in Brazil at present, they are, nevertheless, only one side of the story. For a European historical demographer with a long-term perspective of three of four hundred years, the other side of the story is just as important. The life expectancy which is almost ten years lower in Brazil is not a result of the fact that no one in Brazil lives to old age. In 1981 people sixty-five years and older accounted for 34.4% of all deaths! At the same time infants accounted for only 22.1% of total mortality. They are responsible, along with the "premature" deaths among youths and adults, for the low, "average" life expectancy figure. In Europe, by contrast, these "premature" deaths no longer play much of a role. In 1982/84 more than half of the women (52.8%) in the Federal Republic of Germany lived to see their eightieth birthdays and almost half of the men (47.3%) lived to see their seventy-fifth. Our biological existence is guaranteed to an extent today that would have been unthinkable a few generations ago. Then, the classic troika of "plague, hunger and war" threatened our forefathers all the time and everywhere. The radical transition from the formerly uncertain to a present-day certain lifetime, which is the result of the repression of "plague, hunger and war", led to unexpected consequences for our living together. Our forefathers were forced to live in closely knit Gemeinschaften in the interest of physical survival and to subordinate their egoistic goals to a common value, but now these pressures have, for the most part, fallen away. Correspondingly, this much more certain EGO has taken center stage. An ever greater number of us chooses to live life as single beings: the number of marriages is lower every year; the number of divorces is on the increase; in Berlin (West) more than half (sic! 52.3%) of all households are already composed on only one person. For the last dozen years the annual number of births in the Federal Republic has been insufficient to ensure population replacement. Not a population explosion but rather the opposite, a population implosion, is our problem. Human beings do not appear to be "social animals", as was axiomatically assumed for so long. They were only forced to behave as such for as long as "plague, hunger and war" forced them to do so. When these life endangering conditions no longer exist and life becomes certain even without their being integrated into a Gemeinschaft then humans suddenly show themselves more and more to be independent single beings. It is not the percentage of the population that is over sixty or sixty-five that is decisive in this context but rather how certain adults perceive their biological lives to be, since they are the ones who organize their lives, who build communities or who are ever more often willing only to enter into means-to-an-end personal unions without lasting or close ties and mutual responsibilities. There are many signs which seem to point to a development in this direction in Brazil as well. More and more adults in Brazil are caught up in the deep-seated transition from an uncertain to a certain lifetime. A third of them die after having reached their sixty-fifth birthday. It therefore seems to me to be high time that one began to give more consideration to the other side of the story in Brazil as well. And who is more suited intensively to consider the long-term perspectives than those engaged in the public health sector in whose competence, after all, such aspects, as "life certainty", "life expectancy" and "age at death" belong?

End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland

The National Council on Ageing and Older People (NCAOP) and the Irish Hospice Foundation (IHF) are pleased to present this report, End-of-Life Care for Older People in Acute and Long-Stay Care Settings in Ireland. The report details the results of research that focuses, for the first time in Ireland, on the quality oflife and quality of care at the end-of-life for older people in various care settings including acute hospitals, public extended care units, private nursing homes, voluntary nursing homes and welfare homes. The report provides a new model for care at the end-of-life which goes beyond specialist palliative care provision to embrace a compassionate approach that supports older people who are living with, or dying from, progressive, chronic and life-threatening conditions, and attends to all their needs: physical, psychological,social and spiritual. Download document here

Lifespan extension by calorie restriction relies on the Sty1 MAP kinase stress pathway

Either calorie restriction, loss of function of the nutrient-dependent PKA or TOR/SCH9 pathways, or activation of stress defences improves longevity in different eukaryotes. However, the molecular links between glucose depletion, nutrient-dependent pathways and stress responses are unknown. Here we show that either calorie restriction or inactivation of nutrient-dependent pathways induces life-span extension in fission yeast, and that such effect is dependent on the activation of the stress-dependent Sty1 MAP kinase. During transition to stationary phase in glucose-limiting conditions, Sty1 becomes activated and triggers a transcriptional stress program, whereas such activation does not occur under glucose-rich conditions. Deletion of the genes coding for the SCH9-homologue Sck2 or the Pka1 kinases, or mutations leading to constitutive activation of the Sty1 stress pathway increase life span under glucose-rich conditions, and importantly such beneficial effects depend ultimately on Sty1. Furthermore, cells lacking Pka1 display enhanced oxygen consumption and Sty1 activation under glucose-rich conditions. We conclude that calorie restriction favours oxidative metabolism, reactive oxygen species production and Sty1 MAP kinase activation, and this stress pathway favours life-span extension.

Brazilian network for the surveillance of maternal potentially life threatening morbidity and maternal near-miss and a multidimensional evaluation of their long term consequences

Background. It has been suggested that the study of women who survive life-threatening complications related to pregnancy (maternal near-miss cases) may represent a practical alternative to surveillance of maternal morbidity/mortality since the number of cases is higher and the woman herself is able to provide information on the difficulties she faced and the long-term repercussions of the event. These repercussions, which may include sexual dysfunction, postpartum depression and posttraumatic stress disorder, may persist for prolonged periods of time, affecting women's quality of life and resulting in adverse effects to them and their babies. Objective. The aims of the present study are to create a nationwide network of scientific cooperation to carry out surveillance and estimate the frequency of maternal near-miss cases, to perform a multicenter investigation into the quality of care for women with severe complications of pregnancy, and to carry out a multidimensional evaluation of these women up to six months. Methods/Design. This project has two components: a multicenter, cross-sectional study to be implemented in 27 referral obstetric units in different geographical regions of Brazil, and a concurrent cohort study of multidimensional analysis. Over 12 months, investigators will perform prospective surveillance to identify all maternal complications. The population of the cross-sectional component will consist of all women surviving potentially life-threatening conditions (severe maternal complications) or life-threatening conditions (the maternal near miss criteria) and maternal deaths according to the new WHO definition and criteria. Data analysis will be performed in case subgroups according to the moment of occurrence and determining cause. Frequencies of near-miss and other severe maternal morbidity and the association between organ dysfunction and maternal death will be estimated. A proportion of cases identified in the cross-sectional study will comprise the cohort of women for the multidimensional analysis. Various aspects of the lives of women surviving severe maternal complications will be evaluated 3 and 6 months after the event and compared to a group of women who suffered no severe complications in pregnancy. Previously validated questionnaires will be used in the interviews to assess reproductive function, posttraumatic stress, functional capacity, quality of life, sexual function, postpartum depression and infant development. © 2009 Cecatti et al.

Adequação de demandas funcionais de atividades para a participação escolar de crianças com disfu'nções neuromotoras

The school participation is a prerequisite for the construction of knowledge, learning and development. Neurological deficits may affect child's ability to explore the environment and engage in typical activities. Considering the importance of encouraging professionals in the field of education to conduct simple adjustments in school activities of daily life, this study aimed to adapt, with low cost materials, resources of entertainment and educational for children with neuromotor disorders . It was objects of this study eight resources prescribed and designed for three children diagnosed with cerebral palsy: domino, puzzle, memory game, moving magnetized alphabet, crossword, doll body scheme, adaptation of pencils for writing and bracelet sinker.The analysis of these resources occurred in the parameters of conventional design and management skills, followed by identifying the limiting conditions of the motor skills of the cases observed, indicating the materials used in the adaptation and possible uses. This study provides subsidy for implementation of teaching strategies in the care of students with neuromotor disorders.