Written survey on recently deceased patients in germany and switzerland: how do general practitioners see their role?

BACKGROUND General practitioners (GPs) play an important role in end-of-life care due to their proximity to the patient's dwelling-place and their contact to relatives and other care providers. METHODS In order to get a better understanding of the role which the GP sees him- or herself as playing in end-of-life care and which care their dying patients get, we conducted this written survey. It asked questions about the most recently deceased patient of each physician. The questionnaire was sent to 1,201 GPs in southern North Rhine-Westphalia (Germany) and the Canton of Bern (Switzerland). RESULTS Response rate was 27.5 % (n = 330). The average age of responding physicians was 54.5 years (range: 34-76; standard derivation: 7.4), 68 % of them were male and 45 % worked alone in their practice. Primary outcome measures of this observational study are the characteristics of recently deceased patients as well as their care and the involvement of other professional caregivers. Almost half of the most recently deceased patients had cancer. Only 3 to 16 % of all deceased suffered from severe levels of pain, nausea, dyspnea or emesis. More than 80 % of the doctors considered themselves to be an indispensable part of their patient's end-of-life care. Almost 90 % of the doctors were in contact with the patient's family and 50 % with the responsible nursing service. The majority of the GPs had taken over the coordination of care and cooperation with other attending physicians. CONCLUSION The study confirms the relevance of caring for dying patients in GPs work and provides an important insight into their perception of their own role.

External validation of the Hospital-patient One-year Mortality Risk (HOMR) model for predicting death within 1 year after hospital admission

BACKGROUND Predicting long-term survival after admission to hospital is helpful for clinical, administrative and research purposes. The Hospital-patient One-year Mortality Risk (HOMR) model was derived and internally validated to predict the risk of death within 1 year after admission. We conducted an external validation of the model in a large multicentre study. METHODS We used administrative data for all nonpsychiatric admissions of adult patients to hospitals in the provinces of Ontario (2003-2010) and Alberta (2011-2012), and to the Brigham and Women's Hospital in Boston (2010-2012) to calculate each patient's HOMR score at admission. The HOMR score is based on a set of parameters that captures patient demographics, health burden and severity of acute illness. We determined patient status (alive or dead) 1 year after admission using population-based registries. RESULTS The 3 validation cohorts (n = 2,862,996 in Ontario, 210 595 in Alberta and 66,683 in Boston) were distinct from each other and from the derivation cohort. The overall risk of death within 1 year after admission was 8.7% (95% confidence interval [CI] 8.7% to 8.8%). The HOMR score was strongly and significantly associated with risk of death in all populations and was highly discriminative, with a C statistic ranging from 0.89 (95% CI 0.87 to 0.91) to 0.92 (95% CI 0.91 to 0.92). Observed and expected outcome risks were similar (median absolute difference in percent dying in 1 yr 0.3%, interquartile range 0.05%-2.5%). INTERPRETATION The HOMR score, calculated using routinely collected administrative data, accurately predicted the risk of death among adult patients within 1 year after admission to hospital for nonpsychiatric indications. Similar performance was seen when the score was used in geographically and temporally diverse populations. The HOMR model can be used for risk adjustment in analyses of health administrative data to predict long-term survival among hospital patients.

Current insights into thrombotic microangiopathies: Thrombotic thrombocytopenic purpura and pregnancy.

The complex relation between thrombotic thrombocytopenic purpura (TTP) and pregnancy is concisely reviewed. Pregnancy is a very strong trigger for acute disease manifestation in patients with hereditary TTP caused by double heterozygous or homozygous mutations of ADAMTS13 (ADisintegrin And Metalloprotease with ThromboSpondin type 1 domains, no. 13). In several affected women disease onset during their first pregnancy leads to the diagnosis of hereditary TTP. Without plasma treatment mother and especially fetus are at high risk of dying. The relapse risk during a next pregnancy is almost 100% but regular plasma transfusion starting in early pregnancy will prevent acute TTP flare-up and may result in successful pregnancy outcome. Pregnancy may also constitute a mild risk factor for the onset of acute acquired TTP caused by autoantibody-mediated severe ADAMTS13 deficiency. Women having survived acute acquired TTP may not be at very high risk of TTP relapse during an ensuing next pregnancy but seem to have an elevated risk of preeclampsia. Monitoring of ADAMTS13 activity and inhibitor titre during pregnancy may help to guide management and to avoid disease recurrence. Finally, TTP needs to be distinguished from the much more frequent hypertensive pregnancy complications, preeclampsia and especially HELLP (Hemolysis, Elevated Liver Enzymes, Low Platelet count) syndrome.

Susceptibility versus resistance in alveolar echinococcosis (larval infection with Echinococcus multilocularis).

Epidemiological studies have demonstrated that the majority of human individuals exposed to infection with Echinococcus spp. eggs exhibit resistance to disease as shown by either seroconversion to parasite--specific antigens, and/or the presence of 'dying out' or 'aborted' metacestodes, not including hereby those individuals who putatively got infected but did not seroconvert and who subsequently allowed no development of the pathogen. For those individuals where infection leads to disease, the developing parasite is partially controlled by host immunity. In infected humans, the type of immune response developed by the host accounts for the subsequent trichotomy concerning the parasite development: (i) seroconversion proving infection, but lack of any hepatic lesion indicating the failure of the parasite to establish and further develop within the liver; or resistance as shown by the presence of fully calcified lesions; (ii) controlled susceptibility as found in the "conventional" alveolar echinococcosis (AE) patients who experience clinical signs and symptoms approximately 5-15 years after infection, and (iii) uncontrolled hyperproliferation of the metacestode due to an impaired immune response (AIDS or other immunodeficiencies). Immunomodulation of host immunity toward anergy seems to be triggered by parasite metabolites. Beside immunomodulating IL-10, TGFβ-driven regulatory T cells have been shown to play a crucial role in the parasite-modulated progressive course of AE. A novel CD4+CD25+ Treg effector molecule FGL2 recently yielded new insight into the tolerance process in Echinococcus multilocularis infection.

Days spent in acute care hospitals at the end of life of cancer patients in four Swiss cantons: a retrospective database study (SAKK 89/09).

Number of days spent in acute hospitals (DAH) at the end of life is regarded as an important care quality indicator for cancer patients. We analysed DAH during 90 days prior to death in patients from four Swiss cantons. Claims data from an insurance provider with about 20% market share and patient record review identified 2086 patients as dying of cancer. We calculated total DAH per patient. Multivariable generalised linear modelling served to evaluate potential explanatory variables. Mean DAH was 26 days. In the multivariable model, using complementary and alternative medicine (DAH = 33.9; +8.8 days compared to non-users) and canton of residence (for patient receiving anti-cancer therapy, Zürich DAH = 22.8 versus Basel DAH = 31.4; for other patients, Valais DAH = 22.7 versus Ticino DAH = 33.7) had the strongest influence. Age at death and days spent in other institutions were additional significant predictors. DAH during the last 90 days of life of cancer patients from four Swiss cantons is high compared to most other countries. Several factors influence DAH. Resulting differences are likely to have financial impact, as DAH is a major cost driver for end-of-life care. Whether they are supply- or demand-driven and whether patients would prefer fewer days in hospital remains to be established.

Active JNK-dependent secretion of Drosophila Tyrosyl-tRNA synthetase by loser cells recruits haemocytes during cell competition

Cell competition is a process by which the slow dividing cells (losers) are recognized and eliminated from growing tissues. Loser cells are extruded from the epithelium and engulfed by the haemocytes, the Drosophila macrophages. However, how macrophages identify the dying loser cells is unclear. Here we show that apoptotic loser cells secrete Tyrosyl-tRNA synthetase (TyrRS), which is best known as a core component of the translational machinery. Secreted TyrRS is cleaved by matrix metalloproteinases generating MiniTyr and EMAP fragments. EMAP acts as a guiding cue for macrophage migration in the Drosophila larvae, as it attracts the haemocytes to the apoptotic loser cells. JNK signalling and Kish, a component of the secretory pathway, are autonomously required for the active secretion of TyrRS by the loser cells. Altogether, this mechanism guarantees effective removal of unfit cells from the growing tissue.

OLDER WOMEN LIVING WITH HIV/AIDS

The purpose of this study is to fill a gap in the literature by investigating how an ignored population of women, women over age 50, copes with HIV/ AIDS. Older women are referred to as "invisible victims" with regard to HIV/AIDS. Previous research on coping with HIV/ AIDS focuses mostly on men. Of the research that does focus on women, older women are often overlooked. Although older women are a minority compared to other HIV-infected populations in the US, they are just as deserving of recognition and care as any other population. Data was collected through open-ended, in-depth interviews with four women individually. Recruitment of the sample is from several health institutions serving HIV/AIDS populations. The major topics discussed in the interviews include: demographics, what it is like to live with HIV or AIDS, and way of coping with HIV/ AIDS, including social support, religion, and health behaviors. The data analysis process is a qualitative one, with exploration of major themes and presentation of rich descriptions to illustrate those themes. Results from the data show that in terms of coping, all four participants found it most difficult to cope with a different aspect of living with HIV. Regardless of this finding, participants still employed similar coping strategies. As hypothesized, social support and religious/ spiritual support are important aspects in coping with HIV for all participants. The use of education as a coping mechanism was not an anticipated result. Yet, education was a constant theme, whether it was educating oneself about the disease to better understand it or educating others as to prevent them from contracting HIV. A variety of different positive coping strategies were employed by the participants in coping with their HIV, including altering negative health habits and staying optimistic. Negative coping strategies were also employed, but these seemed to be discussed less throughout the interviews. Overall, the results of this study demonstrate the resilience of these women in terms of finding ways of living with HIV instead of dying from HIV.

Exploring parents' memories of their child's death related sensory experiences as a dimension of grieving

Little is known about how dying children and their parents experience death. Dying children have reported death related sensory experiences (DRSEs), defined as seeing or hearing someone or something not visible or audible to others, associated with dying. Although parents report that they and the dying child benefit from these experiences, healthcare providers often unknowingly dismiss them. The aims of this phenomenological inquiry were to describe children's DRSEs and their meaning from the parents' perspectives. Four fathers and six mothers of African American, Caucasian, or Hispanic ethnicity, all Christian, ranging in age from 35 to 59 years, whose child died 23 to 52 months prior and was treated at a children's cancer center, were interviewed in the home or hospital setting of their choice. Children's ages at the time of their death ranged from 4 to 13 years. A modification of van Kaarn's phenomenological method of analysis was used to analyze data. Themes emerging from the data for the first aim were: perceiving someone or something from a spiritual realm others could not, expressing awareness tempered by parental reactions, and embracing transcendence. Themes emerging from the data for the second aim were: spiritual beings prepared child; child revealed reality, preparing parents; and child transcended wholly, easing parents' grief. Post-interview surveys revealed that parents found participating in this study a "very positive" or "positive" experience, particularly being able to tell the story of their child. Children's DRSEs have clinical implications for all who provide care near the end of life. Informing parents of DRSEs, cautioning that not all dying children express them, may help parents to anticipate this phenomenon, which may decrease anxiety when their child expresses them, increasing the opportunity for open dialogue between parent and child about dying and death, and decrease regrets associated with being unreceptive to their child's expressions of death awareness. Validating a child's DRSE can have profound effects on bereaved parents. Examining DRSEs from the child's perspective and the influence of informing parents of DRSEs on the dying experience of the child and the parental grieving process are recommended. ^

Factors associated with diabetes in tuberculosis patients in Harris County, Texas 1995--2004

Objective. To determine the prevalence and factors associated with diabetes in tuberculosis patients in Harris County, Texas. ^ Background. Tuberculosis and diabetes mellitus are two diseases of immense public health significance. Various epidemiologic studies have established an association between the two conditions. While many studies have identified factors associated with the conditions individually, few have looked at factors associated with their co-occurrence particularly in the United States. Furthermore, most of those studies are hospital-based and may not be representative of the population. The aim of this study was to determine the prevalence and distribution of diabetes among tuberculosis patients in Harris County, Texas and to identify the factors associated with diabetes in tuberculosis. ^ Methods. A population-based case control study was performed using secondary data from the Houston Tuberculosis Initiative (HTI) collected from October 1995 to September 2004. Socio-demographic characteristics and clinical variables were compared between tuberculosis patients with diabetes and non-diabetic tuberculosis patients. Logistic regression analysis was performed to identify associations. Survival at 180 days post tuberculosis diagnosis was assessed by Cox regression. ^ Results. The prevalence of diabetes among the tuberculosis (TB) population was 14.4%. The diabetics (cases) with a mean age 53 ± 13.3 years were older than the non-diabetics (controls) with a mean age of 39 ± 18.5 years (p<0.001). Socio-demographic variables that were independently associated with the risk of diabetes were age (OR 1.04, p<0.001) and Hispanic ethnicity (OR 2.04, p<0.001). Diabetes was associated with an increased risk of pulmonary tuberculosis disease (OR 1.33, p<0.028). Among individuals with pulmonary TB, diabetes was associated with positive sputum acid-fast bacilli (AFB) smear (OR 1.47, p<0.005) and culture (OR 1.83, p<0.018). Diabetics were more likely to have cavitary lung disease than non-diabetics (OR 1.50, p<0.002). After adjustment for age and HIV status, the risk of dying within 180 days of TB diagnosis was significantly increased in the diabetics (HR 1.51, p<0.002). ^ Conclusion. Diabetes mellitus was more prevalent in our tuberculosis patients than in the general population. The tuberculous diabetic may be more infectious and has a higher risk of death. It is therefore imperative to screen diabetics for TB and TB patients for diabetes. ^

Physician knowledge and beliefs toward hospice and the effect on hospice referral in El Paso, Texas

Hospice care has existed in the United States for over 20 years yet referral rates to hospice services are still well under the 180 days allowed by the Medicare Hospice Benefit. The average length of stay in El Paso is 56.8. ^ The aim of this study was to ascertain physician’s knowledge and attitudes towards hospice referral in the El Paso County. Particular issues to be addressed were: Physician’s knowledge of patient’s eligibility criteria and perception of the type of services provided by hospice. Other issues included, physician’s comfort level and willingness to determine terminal diagnosis and to discuss hospice services. Furthermore, physician’s perceptions of barriers to hospice referrals and how those perceptions differ between physicians who refer as compared to those who do not refer. ^ There were seven hypothesis tested to determine physicians knowledge and perceptions of hospice services. Using a mail-survey developed by Ogle, Mavis and Wang, this study surveyed 165 cardiologists, pediatric cardiologists, gastroenterologists, pulmonologists, neurologists, nephrologists, family practice, internists, oncologists, and pediatric oncologists. A t-test was used to test a comparison of means of categorical associations for all hypotheses. The data in the current study however, did not support the hypotheses tested. ^ Results indicated that physicians (52%) are knowledgeable with the eligibility criteria for hospice and that 95% are knowledgeable of the services hospice offers. Research findings appear to indicate physicians are not the hindering factor when making referrals to hospice. Physicians (46%) felt that one of the strongest barriers to hospice referrals is the patient/family unwillingness to accept hospice services. This offers an opportunity for future research in patients/families behavioral attitudes and beliefs toward death and dying issues and their perception of hospice services. ^

Evaluation of epidemiological and clinical factors in survival of patients with de novo myelodysplastic syndrome at the University of Texas MD Anderson cancer center

Little is known about epidemiological markers that are associated with survival of patients with myelodysplastic syndromes (MDS). We conducted a secondary case-based analysis of 465 de novo MDS patients from the University of Texas MD Anderson Cancer Center (UTMDACC). We investigated the association between demographic as well as occupational exposure markers and survival while incorporating known clinical markers of prognosis. In our patient population, 60.6% were men and the majority were white (93.1%). The distribution of MDS subtypes by the French–American–British (FAB) classification was 81 (19%) refractory anemia (RA), 46 (9.9%) refractory anemia with ringed sideroblasts (RARS), 57 (12.3%) chronic myelomonocytic leukemia (CMML), 173 (37.2%) RA with excess blasts (RAEB), and 86 (18.5%) RAEB in transformation (RAEBT). We found that those older at diagnosis (> 60 years of age) (HR = 1.68, CI = 1.26-2.25) were at a higher risk of dying compared to younger patients. Similarly, high pack years of smoking (>= 30 pack years of smoking) (HR = 1.34, CI = 1.02-1.74), and agricultural chemical exposure (HR = 1.61, CI = 1.05-2.46) were significantly associated with overall lower survival when compared to patients with none or medium exposures. Among clinical markers, greater than 5% bone marrow blasts (HR = 1.81 CI = 1.27-2.56), poor cytogenetics (HR = 3.20, CI = 2.37-4.33)), and platelet cytopenias (<100000/ul) (HR = 1.46, CI = 1.11-1.92) were also significantly associated with overall MDS survival.^ The identification of epidemiological markers could help physicians stratify patients and customize treatment strategies to improve the outcome of MDS based on patient lifestyle information such as smoking exposure and agrochemical exposure. We hope that this study highlights the impact of these exposures in MDS prognosis.^

A study to determine the association between medical decision-making and the performance of an institutional ethics committee

This study developed proxy measures to test the independent effects of medical specialty, institutional ethics committee (IEC) and the interaction between the two, upon a proxy for the dependent variable of the medical decision to withhold/withdraw care for the dying--the resuscitation index (R-index). Five clinical vignettes were constructed and validated to convey the realism and contextual factors implicit in the decision to withhold/withdraw care. A scale was developed to determine the range of contact by an IEC in terms of physician knowledge and use of IEC policy.^ This study was composed of a sample of 215 physicians in a teaching hospital in the Southwest where proxy measures were tested for two competing influences, medical specialty and IEC, which alternately oppose and support the decision to withhold/withdraw care for the dying. A sub-sample of surgeons supported the hypothesis that an IEC is influential in opposing the medical training imperative to prolong life.^ Those surgeons with a low IEC score were 326 percent more likely to continue care than were surgeons with a high IEC score when compared to all other specialties. IEC alone was also found to significantly predict the decision to withhold/withdraw care. Interaction of IEC with the specialty of surgery was found to be the best predictor for a decision to withhold/withdraw care for the dying. ^

Burden of invasive pneumococcal disease in Harris County, Texas (2003--2010) and the implication for enhanced public health surveillance of isolates

Invasive pneumococcal disease (IPD) causes significant health burden in the US, is responsible for the majority of bacterial meningitis, and causes more deaths than any other vaccine preventable bacterial disease in the US. The estimated National IPD rate is 14.3 cases per 100,000 population with a case-fatality rate of 1.5 cases per 100,000 population. Although cases of IPD are routinely reported to the local health department in Harris County Texas, the incidence (IR) and case-fatality (CFR) rates have not been reported. Additionally, it is important to know which serotypes of S. pneumoniae are circulating in Harris County Texas and to determine if ‘replacement disease’ is occurring. ^ This study reported incidence and case-fatality rates from 2003 to 2009, and described the trends in IPD, including the IPD serotypes circulating in Harris County Texas during the study period, particularly in 2008 and 2010. Annual incidence rates were calculated and reported for 2003 to 2009, using complete surveillance-year data. ^ Geographic information system (GIS) software was used to create a series of maps of the data reported during the study period. Cluster and outlier analysis and hot spot analysis were conducted using both case counts by census tract and disease rate by census tract. ^ IPD age- and race-adjusted IR for Harris County Texas and their 95% confidence intervals (CIs) were 1.40 (95% CI 1.0, 1.8), 1.71 (95% CI 1.24, 2.17), 3.13 (95% CI 2.48, 3.78), 3.08 (95% CI 2.43, 3.74), 5.61 (95% CI 4.79, 6.43), 8.11 (95% CI 7.11, 9.1), and 7.65 (95% CI 6.69, 8.61) for the years 2003 to 2009, respectively (rates were age- and race-adjusted to each year's midyear US population estimates). A Poisson regression model demonstrated a statistically significant increasing trend of about 32 percent per year in the IPD rates over the course of the study period. IPD age- and race-adjusted case-fatality rates (CFR) for Harris County Texas were also calculated and reported. A Poisson regression model demonstrated a statistically significant increasing trend of about 26 percent per year in the IPD case-fatality rates from 2003 through 2009. A logistic regression model associated the risk of dying from IPD to alcohol abuse (OR 4.69, 95% CI 2.57, 8.56) and to meningitis (OR 2.42, 95% CI 1.46, 4.03). ^ The prevalence of non-vaccine serotypes (NVT) among IPD cases with serotyped isolates was 98.2 percent. In 2008, the year with the sample more geographically representative of all areas of Harris County Texas, the prevalence was 96 percent. Given these findings, it is reasonable to conclude that ‘replacement disease’ is occurring in Harris County Texas, meaning that, the majority of IPD is caused by serotypes not included in the PCV7 vaccine. Also in conclusion, IPD rates increased during the study period in Harris County Texas.^

Mistreatment and self-neglect in community dwelling older adults: Studies of construct validity, measurement invariance and latent classes

Mistreatment and self-neglect significantly increase the risk of dying in older adults. It is estimated that 1 to 2 million older adults experience elder mistreatment and self-neglect every year in the United States. Currently, there are no elder mistreatment and self-neglect assessment tools with construct validity and measurement invariance testing and no studies have sought to identify underlying latent classes of elder self-neglect that may have differential mortality rates. Using data from 11,280 adults with Texas APS substantiated elder mistreatment and self-neglect 3 studies were conducted to: (1) test the construct validity and (2) the measurement invariance across gender and ethnicity of the Texas Adult Protective Services (APS) Client Assessment and Risk Evaluation (CARE) tool and (3) identify latent classes associated with elder self-neglect. Study 1 confirmed the construct validity of the CARE tool following adjustments to the initial hypothesized CARE tool. This resulted in the deletion of 14 assessment items and a final assessment with 5 original factors and 43 items. Cross-validation for this model was achieved. Study 2 provided empirical evidence for factor loading and item-threshold invariance of the CARE tool across gender and between African-Americans and Caucasians. The financial status domain of the CARE tool did not function properly for Hispanics and thus, had to be deleted. Subsequent analyses showed factor loading and item-threshold invariance across all 3 ethnic groups with the exception of some residual errors. Study 3 identified 4-latent classes associated with elder self-neglect behaviors which included individuals with evidence of problems in the areas of (1) their environment, (2) physical and medical status, (3) multiple domains and (4) finances. Overall, these studies provide evidence supporting the use of APS CARE tool for providing unbiased and valid investigations of mistreatment and neglect in older adults with different demographic characteristics. Furthermore, the findings support the underlying notion that elder self-neglect may not only occur along a continuum, but that differential types may exist. All of which, have very important potential implications for social and health services distributed to vulnerable mistreated and neglected older adults.^

Intensive care unit utilization among patients with cancer at the end of life

Over the last 2 decades, survival rates in critically ill cancer patients have improved. Despite the increase in survival, the intensive care unit (ICU) continues to be a location where end-of-life care takes place. More than 20% of deaths in the United States occur after admission to an ICU, and as baby boomers reach the seventh and eighth decades of their lives, the volume of patients in the ICU is predicted to rise. The aim of this study was to evaluate intensive care unit utilization among patients with cancer who were at the end of life. End of life was defined using decedent and high-risk cohort study designs. The decedent study evaluated characteristics and ICU utilization during the terminal hospital stay among patients who died at The University of Texas MD Anderson Cancer Center during 2003-2007. The high-risk cohort study evaluated characteristics and ICU utilization during the index hospital stay among patients admitted to MD Anderson during 2003-2007 with a high risk of in-hospital mortality. Factors associated with higher ICU utilization in the decedent study included non-local residence, hematologic and non-metastatic solid tumor malignancies, malignancy diagnosed within 2 months, and elective admission to surgical or pediatric services. Having a palliative care consultation on admission was associated with dying in the hospital without ICU services. In the cohort of patients with high risk of in-hospital mortality, patients who went to the ICU were more likely to be younger, male, with newly diagnosed non-metastatic solid tumor or hematologic malignancy, and admitted from the emergency center to one of the surgical services. A palliative care consultation on admission was associated with a decreased likelihood of having an ICU stay. There were no differences in ethnicity, marital status, comorbidities, or insurance status between patients who did and did not utilize ICU services. Inpatient mortality probability models developed for the general population are inadequate in predicting in-hospital mortality for patients with cancer. The following characteristics that differed between the decedent study and high-risk cohort study can be considered in future research to predict risk of in-hospital mortality for patients with cancer: ethnicity, type and stage of malignancy, time since diagnosis, and having advance directives. Identifying those at risk can precipitate discussions in advance to ensure care remains appropriate and in accordance with the wishes of the patient and family.^