Tuberculosis Containment among the Homeless in Metropolitan Jackson, Mississippi.

IMPORTANCE: Preventing tuberculosis among the homeless has emerged as an especially difficult challenge. OBJECTIVES: We assessed a 2008-2009 tuberculosis (TB) outbreak ad subsequent prevention strategies among homeless persons in metropolitan Jackson, Hinds County, Mississippi. DESIGN, SETTING AND PARTICIPANTS: We compared data about cases and subclinical TB infections (LTBI) among homeless persons during the outbreak and post-outbreak years, interviewed involved homeless persons, compiled observations from visits to Jackson homeless shelters and conducted literature reviews on homelessness and infectious diseases. We reviewed homeless shelter TB prevention methods adopted by other municipalities, guidelines developed by the Centers for Disease Control and Prevention (CDC), and recommendations from other official and ad hoc groups and considered their applicability to metropolitan Jackson. MAIN OUTCOMES AND MEASURES: The Mississippi State Department of Health TB Program assisted by the CDC and other agencies, contained the Jackson-area outbreak by the end of 2009 as reflected by progressively lower TB rates among homeless persons thereafter. However, some follow-up activities and enforcement of shelter preventive measures have not been consistently maintained. Resources to prevent further outbreaks continue to be inadequate, and over-reliance on private organizations has continued. In the process, appreciation of the dynamic interaction enhancing TB risk among the homeless and incarcerated persons has emerged. RESULTS: Major outbreak contributors were lack of periodic TB screening among homeless shelter clients, preventive treatment compliance and follow-up difficulties among those with subclinical tuberculosis infections, interrupted preventive measures among infected persons incarcerated in local correctional facilities who disproportionately re-join Jackson's homeless community when released, inadequate attention to shelter environmental preventive strategies such as ultraviolet light germicidal irradiators and proper air-exchange/ventilation, costs of isolation housing for homeless people with full-blown tuberculosis (especially those co-infected with HIV and other infections and those with alcohol and/or other chemical dependencies), lack of adequate transportation which impacts access to evaluation and care, lack of mandated ongoing training among shelter and correctional facility staff, and inadequate attention to the societal problem of homelessness itself. CONCLUSIONS: Sustained adherence to local shelter and correctional facility TB prevention measures based on standards and policies proved effective in other settings is most crucial. These include requirements for periodic tuberculosis prevention and awareness training for shelter and correctional facility staff, ongoing tuberculosis screening and follow-up among homeless shelter clients and inmates of local correctional facilities, and attention to shelter and correctional facility environmental sanitation, proper ventilation, ultraviolet light fixtures and capacity/bed alignment standards.

Interprofessional collaborative practice: a deconstruction.

This paper uses (and perhaps abuses) deconstruction to revisit the meanings of collaboration and practice. We start with a description of deconstruction itself, as espoused by Jacques Derrida, and then move onto challenging the notion that words, such as collaboration, can have fixed meanings. And, in the spirit of Derrida, "I can foresee the impatience of the bad reader: this is the way I name or accuse the fearful reader, the reader in a hurry to be determined, decided upon deciding (in order to annul, in other words to bring back to oneself, one has to wish to know in advance what to expect...)" (Derrida, 1987, p. 4--original italics), we move straight into the text.

Facilitating critical discourse through "meaningful disagreement" online.

This paper is concerned with identifying ways of facilitating "meaningful disagreement" amongst students in interprofessional online discussion forums. It builds on previous research that identified a trend toward polite agreement and only limited evidence of disagreement in this setting. Given the suggestion that disagreement indicates a deeper level of engagement in group discussion and therefore leads to deeper learning, our aim was to critique the pedagogical approach adopted by analyzing whether we were promoting a particular interprofessional discourse amongst students that favored agreement and therefore limited potential learning. Agreement in this context has been conceptualized as a form of online interprofessional "netiquette" existing amongst participants. Findings suggest that creating an online context for critical discourse is challenging; however, the careful construction of learning outcomes, trigger material/resources and learning activities, as well as attention to students' stage of study and life experience, can provoke the desired effects.

Food Insecurity Among People With Cancer: Nutritional Needs as an Essential Component of Care.

A cancer diagnosis can upend work and family life, leading patients to reallocate resources away from essentials such as food. Estimates of the percentage of people navigating a cancer diagnosis and food insecurity range between 17% and 55% of the cancer patient population. The complexity of addressing food insecurity among those diagnosed with cancer during different phases of treatment is multifactorial and often requires an extensive network of support throughout each phase. This commentary explores the issue of food insecurity in the context of cancer care, explores current mitigation efforts, and offers a call to action to create a path for food insecurity mitigation in the context of cancer. Three programs that address food insecurity among those with cancer at various stages of care are highlighted, drawing attention to current impact and actionable recommendations to make programs like these scalable and sustainable. Recommendations are grounded in the National Academies of Sciences, Engineering, and Medicine social care framework through 5 essential domain areas: awareness, adjustment, assistance, alignment, and advocacy. This commentary seeks to highlight opportunities for the optimization of cancer care and reframe food access as an essential part of treatment and long-term care plans.

An investigation of "agreement" in the context of interprofessional discussion online: a "netiquette" of interprofessional learning?

This article suggests that "agreement" is a predominant feature of online discussions amongst undergraduate health and social care professionals, which is an area of concern. The context for the research is an online interprofessional learning pathway completed by ~2,800 students each year. The concept of agreement, how and why it is reached and what it indicates in an online interprofessional group is examined. The underpinning educational rationale for instigating online interprofessional dialogue was the potential to provide a powerful interface for bringing together students across a wide range of professional groups, which is necessary to promote interprofessional learning. Discourse analysis was used to analyze digital texts of interaction in online forums. The discussion forum discourse shows evidence of increased interprofessional knowledge and understanding, as well as capacity for interprofessional dialogue. Discussions were largely characterized by agreement, although some disagreement was evident. These findings support previous research in online dialogue. However, they are interpreted in an interprofessional context as constituting a specific type of "netiquette" in relation to the participants and their identification with professional discourses and to the learning activities that shaped discussions. The research has significance for teachers, researchers, and practitioners involved in promoting interprofessional learning through online discussion forums.

Dignity, humanity and equality: Principle of Nursing Practice A.

This is the second article in a nine-part series describing the Principles of Nursing Practice developed by the Royal College of Nursing (RCN) in collaboration with patient and service organisations, the Department of Health, the Nursing and Midwifery Council, nurses and other healthcare professionals. This article discusses Principle A, the provision of nursing care in a way that maximises the dignity and humanity of patients.

Views of relatives, carers and staff on end of life care pathways.

More people die in hospital than at home (Department of Health (DH) 2008). Yet, many people do not want to die in hospital, which can be an inappropriate environment for end of life care. The government's end of life care strategy (DH 2008) and the NHS (2009) end of life care programme (EOLCP) state that people should be able to choose where they die. This article reports on the findings of a study on end of life care of decisions by patients, relatives and care professionals, and their perceptions of care pathways in the last 48 hours of life. It also highlights the challenges that must be overcome in acute and community settings for the aims of the EOLCP to be met.

Postoperative Recovery and Survivorship After Acute Hospitalization for Serious Life-Limiting Illness.

This article provides a road map for discharge planning of adult patients with serious life-limiting illnesses. The need for early and guided conversations with specific prompts is offered to assist in the transition of care process. Transparent, patient-centered interactions are emphasized throughout with an acknowledgment that this type of direct, interpersonal communication may challenge a clinical team's typical mode of operation. Nevertheless, when done well, this approach can lead to better outcomes for everyone involved. This framework for discharge planning has led to greater patient and family satisfaction, lower mortality, reduced societal costs, and fewer instances of hospital readmission.

Nurses' experiences with hospice patients who refuse food and fluids to hasten death.

BACKGROUND: Voluntary refusal of food and fluids has been proposed as an alternative to physician-assisted suicide for terminally ill patients who wish to hasten death. There are few reports of patients who have made this choice. METHODS: We mailed a questionnaire to all nurses employed by hospice programs in Oregon and analyzed the results. RESULTS: Of 429 eligible nurses, 307 (72 percent) returned the questionnaire, and 102 of the respondents (33 percent) reported that in the previous four years they had cared for a patient who deliberately hastened death by voluntary refusal of food and fluids. Nurses reported that patients chose to stop eating and drinking because they were ready to die, saw continued existence as pointless, and considered their quality of life poor. The survey showed that 85 percent of patients died within 15 days after stopping food and fluids. On a scale from 0 (a very bad death) to 9 (a very good death), the median score for the quality of these deaths, as rated by the nurses, was 8. On the basis of the hospice nurses' reports, the patients who stopped eating and drinking were older than 55 patients who died by physician-assisted suicide (74 vs. 64 years of age, P<0.001), less likely to want to control the circumstances of their death (P<0.001), and less likely to be evaluated by a mental health professional (9 percent vs. 45 percent, P<0.001). CONCLUSIONS: On the basis of reports by nurses, patients in hospice care who voluntarily choose to refuse food and fluids are elderly, no longer find meaning in living, and usually die a "good" death within two weeks after stopping food and fluids.

Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide.

BACKGROUND: Oregon's 1997 Death with Dignity Act legalizes physician-assisted suicide. To date, information about patients who have requested this option has come from surveys of physicians. Although 78 percent of the 91 Oregonians who have died by assisted suicide were enrolled in hospice programs, there is little information about the experiences of hospice practitioners with these patients. METHODS: In 2001, we mailed a questionnaire to all hospice nurses and social workers in Oregon. RESULTS: Of 545 eligible hospice nurses and social workers, 397 (73 percent) returned the survey, including 71 percent of nurses and 78 percent of social workers. Since November 1997, 179 of the respondents (45 percent) had cared for a patient who requested assistance with suicide. Hospice nurses reported on 82 patients who had received prescriptions for lethal medication. Ninety-eight percent of the nurses had discussed the request with a coworker, and 77 percent of the requests had been presented at a hospice interdisciplinary conference on patient care. A very important reason for the request was to control the circumstances of death. The least important reasons included depression, lack of social support, and fear of being a financial drain on family members. Although the patients were concerned about burdening others, only 11 percent of hospice nurses rated their family caregivers as more burdened than family caregivers for other hospice patients. CONCLUSIONS: Since assisted suicide was legalized in Oregon, many hospice nurses and social workers have provided care for a patient who requested assistance with suicide. They rated desire for control as a very important reason for these requests.

Perspective: Improving Nutritional Guidelines for Sustainable Health Policies: Current Status and Perspectives.

A large body of evidence supports the notion that incorrect or insufficient nutrition contributes to disease development. A pivotal goal is thus to understand what exactly is appropriate and what is inappropriate in food ingestion and the consequent nutritional status and health. The effective application of these concepts requires the translation of scientific information into practical approaches that have a tangible and measurable impact at both individual and population levels. The agenda for the future is expected to support available methodology in nutrition research to personalize guideline recommendations, properly grading the quality of the available evidence, promoting adherence to the well-established evidence hierarchy in nutrition, and enhancing strategies for appropriate vetting and transparent reporting that will solidify the recommendations for health promotion. The final goal is to build a constructive coalition among scientists, policy makers, and communication professionals for sustainable health and nutritional policies. Currently, a strong rationale and available data support a personalized dietary approach according to personal variables, including sex and age, circulating metabolic biomarkers, food quality and intake frequency, lifestyle variables such as physical activity, and environmental variables including one's microbiome profile. There is a strong and urgent need to develop a successful commitment among all the stakeholders to define novel and sustainable approaches toward the management of the health value of nutrition at individual and population levels. Moving forward requires adherence to well-established principles of evidence evaluation as well as identification of effective tools to obtain better quality evidence. Much remains to be done in the near future.

Determinants of Oregon hospice chaplains' views on physician-assisted suicide.

BACKGROUND: Although religiousness is a strong predictor of attitudes towards physician-assisted suicide (PAS), Oregon hospice chaplains express wide variation in their opposition to or support for legalized PAS. We explored factors associated with chaplains' views on PAS. METHODS: A mailed survey to chaplains from 51 Oregon hospices. RESULTS: Fifty of 77 eligible hospice chaplains (65%) returned surveys. Views on PAS were associated with views on suicide in general. Moral and theological beliefs were the most important influences on views on PAS. Chaplains who were opposed to PAS believed that God alone may take life, that life is an absolute good, and that suffering has a divine purpose. Those who supported PAS placed emphasis on the importance of self-determination and sanctity of life as defined by quality of life. CONCLUSIONS: Oregon hospice chaplains' diverse views towards PAS are closely related to their views on suicide in general, and their personal and theological beliefs.

Defining severe familial hypercholesterolaemia and the implications for clinical management: a consensus statement from the International Atherosclerosis Society Severe Familial Hypercholesterolemia Panel.

Familial hypercholesterolaemia is common in individuals who had a myocardial infarction at a young age. As many as one in 200 people could have heterozygous familial hypercholesterolaemia, and up to one in 300 000 individuals could be homozygous. The phenotypes of heterozygous and homozygous familial hypercholesterolaemia overlap considerably; the response to treatment is also heterogeneous. In this Review, we aim to define a phenotype for severe familial hypercholesterolaemia and identify people at highest risk for cardiovascular disease, based on the concentration of LDL cholesterol in blood and individuals' responsiveness to conventional lipid-lowering treatment. We assess the importance of molecular characterisation and define the role of other cardiovascular risk factors and advanced subclinical coronary atherosclerosis in risk stratification. Individuals with severe familial hypercholesterolaemia might benefit in particular from early and more aggressive cholesterol-lowering treatment (eg, with PCSK9 inhibitors). In addition to better tailored therapy, more precise characterisation of individuals with severe familial hypercholesterolaemia could improve resource use.

Oregon hospice chaplains' experiences with patients requesting physician-assisted suicide.

BACKGROUND: Oregon's Death with Dignity Act (ODDA), which legalized physician-assisted suicide (PAS) for terminally ill individuals, was enacted in 1997. Eighty-six percent of the 171 patients who have died by PAS were enrolled in hospice. OBJECTIVE: To survey hospice chaplains regarding their views on the ODDA and experiences working with patients who request PAS. DESIGN: Single, anonymous, mailed survey. SUBJECTS: All chaplains affiliated with one of Oregon's 50 hospices. RESULTS: Fifty of 77 hospice chaplains whom we identified (65%) returned the survey. Forty-two percent of respondents opposed the ODDA and 40% supported it. Over half of respondents had, in the previous 3 years, worked with a patient who had made an explicit request for assisted suicide. Conversation with patients around PAS focused on the role of faith and spirituality in this decision, reasons for wanting hastened death, and family concerns or reactions to PAS. Chaplains did not feel that they had a strong influence on the patient's decisions about PAS (mean score of 4 on a 0-10 scale), though three chaplains reported a patient who withdrew their request for PAS because of the chaplain's involvement. Chaplains reported provision of a nonjudgmental presence helped the relationship with the patient. CONCLUSION: Oregon hospice chaplains are divided in their views on legalized PAS, but primarily see their role to deliver support to patients no matter what the patient's final decision regarding PAS.

Standard equations are not accurate in assessing resting energy expenditure in patients with amyotrophic lateral sclerosis.

OBJECTIVE: To assess the utility of standard equations for calculating caloric requirements in patients with amyotrophic lateral sclerosis (ALS). BACKGROUND: Malnutrition substantially increases the risk of death in ALS. Weight loss can be stabilized and survival prolonged with early gastrostomy feeding. However the use of standard nutrition equations has not been validated in this population. We therefore compared measured caloric expenditure to 2 predictive equations in patients with varying stages of ALS. METHODS: Thirty-four patients were studied. Caloric expenditure and respiratory quotient (R) were measured using indirect calorimetry. Results were compared with the Harris-Benedict equation. RESULTS: The prediction error for the Harris-Benedict equation was 18.6 + 14.9%. Limits of agreement showed this equation could overestimate caloric expenditure by 591 kcal/d and underestimate requirements by 677 kcal/d. R was >0.86 in 11 patients, suggesting overfeeding, and <0.8 in 15 patients, suggesting underfeeding. The difference between predicted and measured caloric expenditure did not correlate with disease severity, disease duration, or body mass index. Mechanically ventilated patients had higher than predicted energy expenditure. CONCLUSIONS: We found that standard equations used to calculate energy expenditure were not valid for patients with ALS. Moreover, the majority of our patients were either overfed or underfed. As underfeeding can cause diaphragm impairment, and overfeeding can increase ventilatory load, indirect calorimetry should be considered in ALS patients to determine optimal caloric requirement.

Voluntary refusal of food and fluids: attitudes of Oregon hospice nurses and social workers.

As the ethical debate about euthanasia and physician-assisted suicide (PAS) continues, one alternative that has been suggested is for the patient to voluntarily refuse all food and fluids (VRFF). The article describes the results of a study of hospice nurses' and social workers' attitudes towards VRFF and compares them with their attitudes towards PAS. In 2001, a questionnaire was posted to nurses and social workers who care for Oregon residents enrolled in hospice programmes to determine their attitudes towards PAS and VRFF. In general, hospice workers expressed support for patients who choose to hasten their death by VRFF; they were less supportive of PAS. The results from this study suggest that perceptions regarding VRFF are significantly different from those regarding PAS. These results may have important clinical implications for nurses and social workers involved in end-of-life care who encounter patients who wish to hasten their deaths.

Use of the Physician Orders for Life-Sustaining Treatment (POLST) paradigm program in the hospice setting.

BACKGROUND: The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm Program was designed to ensure the full range of patient treatment preferences are honored throughout the health care system. Data are lacking about the use of POLST in the hospice setting. OBJECTIVE: To assess use of the POLST by hospice programs, attitudes of hospice personnel toward POLST, the effect of POLST on the use of life-sustaining treatments, and the types of treatments options selected by hospice patients. DESIGN: A telephone survey was conducted of all hospice programs in three states (Oregon, Wisconsin, and West Virginia) to assess POLST use. Staff at hospices reporting POLST use (n = 71) were asked additional questions about their attitudes toward the POLST. Chart reviews were conducted at a subsample of POLST-using programs in Oregon (n = 8), West Virginia (n = 5), and Wisconsin (n = 2). RESULTS: The POLST is used widely in hospices in Oregon (100%) and West Virginia (85%) but only regionally in Wisconsin (6%). A majority of hospice staff interviewed believe the POLST is useful at preventing unwanted resuscitation (97%) and at initiating conversations about treatment preferences (96%). Preferences for treatment limitations were respected in 98% of cases and no one received unwanted cardiopulmonary resuscitation (CPR), intubation, intensive care, or feeding tubes. A majority of hospice patients (78%) with do-not-resuscitate (DNR) orders wanted more than the lowest level of treatment in at least one other category such as antibiotics or hospitalization. CONCLUSIONS: The POLST is viewed by hospice personnel as useful, helpful, and reliable. It is effective at ensuring preferences for limitations are honored. When given a choice, most hospice patients want the option for more aggressive treatments in selected situations.

Transmitted duplication of 8p23.1-8p23.2 associated with speech delay, autism and learning difficulties.

Duplications of distal 8p with and without significant clinical phenotypes have been reported and are often associated with an unusual degree of structural complexity. Here, we present a duplication of 8p23.1-8p23.2 ascertained in a child with speech delay and a diagnosis of ICD-10 autism. The same duplication was found in his mother who had epilepsy and learning problems. A combination of cytogenetic, FISH, microsatellite, MLPA and oaCGH analysis was used to show that the duplication extended over a minimum of 6.8 Mb between 3 539 893 and 10 323 426 bp. This interval contains 32 novel and 41 known genes, of which only microcephalin (MCPH1) is a plausible candidate gene for autism at present. The distal breakpoint of the duplicated region interrupts the CSMD1 gene in 8p23.2 and the medial breakpoint lies between the MSRA and RP1L1 genes in 8p23.1.An interchromosomal insertion between a normal and polymorphically inverted chromosome 8 is proposed to explain the origin of this duplication. Further mapped imbalances of distal 8p are needed to determine whether the autistic component of the phenotype in this family results from the cumulative imbalance of many genes or dosage imbalance of an individual susceptibility gene.