Understanding and Improving Hospice Enrollment

Hospice is considered the “gold standard” for end-of-life care, providing dying patients and their families access to a broad array of services across settings. Despite its comprehensive approach, hospice care remains underutilized; many patients who might benefit from hospice do not enroll, or enroll only in the last days of life. This Issue Brief summarizes a series of studies that shed light on the decision making process about hospice, and describes a simple, effective way to improve referrals to hospice among nursing home residents

Is It Time to Redesign Hospice? End-of-Life Care at the User Interface

Hospice is a system of end-of-life care that’s not used to its full potential. That is, hospice is not used in the way that would benefit patients and families as much as it could. My argument is that this is an issue of usability, or ergonomics—the science of design. I illustrate how to take what we have learned from the science of usability to make hospice more accessible and approachable, and to increase hospice use among those who would benefit from it. Underneath this discussion, though, there is a more fundamental question: Can we make hospice more usable or do we need to think about redesigning hospice entirely

Older Adults’ Attitudes Toward Enrollment of Noncompetent Subjects Participating in Alzheimer’s Research

OBJECTIVE: Research that seeks to enroll noncompetent patients with Alzheimer’s disease without presenting any potential benefit to participants is the source of substantial ethical controversy. The authors used hypothetical Alzheimer’s disease studies that included either a blood draw or a blood draw and lumbar puncture to explore older persons’ attitudes on this question. METHOD: Face-to-face interviews were conducted with 538 persons age 65 and older. Questions explored participants’ understanding of research concepts, their views on enrolling persons with Alzheimer’s disease in research, and their preferences regarding having a proxy decision maker, granting advance consent, and granting their proxy leeway to override the participant’s decision. Additional questions assessed altruism, trust, value for research, and perceptions of Alzheimer’s disease. RESULTS: The majority (83%) were willing to grant advance consent to a blood draw study, and nearly half (48%) to a blood draw plus lumbar puncture study. Most (96%) were willing to identify a proxy for research decision making, and most were willing to grant their proxy leeway over their advance consent: 81% for the blood draw study and 70% for the blood draw plus lumbar puncture study. Combining the preferences for advance consent and leeway, the proportion who would permit being enrolled in the blood draw and lumbar puncture studies, respectively, were 92% and 75%. Multivariate models showed that willingness to be enrolled in research was most strongly associated with a favorable attitude toward biomedical research. CONCLUSIONS: Older adults generally support enrolling noncompetent persons with Alzheimer’s disease into research that does not present a benefit to subjects. Willingness to grant their proxy leeway over advance consent and a favorable attitude about biomedical research substantially explain this willingness

Why would caregivers not want to treat their relative\u27s Alzheimer\u27s disease?

Objectives: To determine family caregivers\u27 willingness to use Alzheimer\u27s disease (AD)-slowing medicines and to examine the relationships between this willingness, dementia severity, and caregiver characteristics. Design: Cross-sectional survey. Setting: In-home interviews of patients from the Memory Disorders Clinic of the University of Pennsylvania\u27s Alzheimer\u27s Disease Center. Participants: One hundred two caregivers of patients with mild to severe AD who were registered at an Alzheimer\u27s disease center. Measurements: Subjects participated in an in-home interview to assess their willingness to use a risk-free AD-slowing medicine and a medicine with 3% annual risk of gastrointestinal bleeding. Results: Half of the patients had severe dementia (n=52). Seventeen (17%) of the caregivers did not want their relative to take a risk-free medicine that could slow AD. Half (n=52) did not want their relative to take an AD-slowing medicine that had a 3% annual risk of gastrointestinal bleeding. Caregivers who were more likely to forgo risk-free treatment of AD were older (odds ratio (OR)=1.7, P=.04), were depressed (OR=3.66, P=.03), had relatives living in a nursing home (OR=3.6, P=.02), had relatives with more-severe dementia according to the Mini-Mental State Examination (MMSE) (OR=2.29, P=.03) or Dementia Severity Rating Scale (DSRS) (OR=2.55, P=.002), and rated their relatives\u27 quality of life (QOL) poorly on a single-item global rating (OR=0.25, P=.001) and the 13-item quality-of-life (QOL)-AD scale (OR=0.38, P=.002). Caregivers who were more likely to forgo a risky treatment were nonwhite (OR=6.53, P=.005), had financial burden (OR=2.93, P=.02), and rated their relative\u27s QOL poorly on a single-item global rating (OR=0.61, P=.01) and the QOL-AD (OR=0.56, P=.01). Conclusion: These results suggest that caregivers are generally willing to slow the progression of their relative\u27s dementia even into the severe stage of the disease, especially if it can be done without risk to the patient. Clinical trials and practice guidelines should recognize that a caregiver\u27s assessment of patient QOL and the factors that influence it affect a caregiver\u27s willingness to use AD-slowing treatments

Effect of whole-body irradiation on Michaelis-Menten constants of microsomal enzyme systems of rat liver

A new methodology to analyze non-linear components in perturbative transport experiments is introduced. The methodology has been experimentally validated in the Large Helical Device for the electron heat transport channel. Electron cyclotron resonance heating with different modulation frequencies by two gyrotrons has been used to directly quantify the amplitude of the non-linear component at the inter-modulation frequencies. The measurements show significant quadratic non-linear contributions and also the absence of cubic and higher order components. The non-linear component is analyzed using the Volterra series, which is the non-linear generalization of transfer functions. This allows us to study the radial distribution of the non-linearity of the plasma and to reconstruct linear profiles where the measurements were not distorted by non-linearities. The reconstructed linear profiles are significantly different from the measured profiles, demonstrating the significant impact that non-linearity can have

Pain and Physical and Psychological Symptoms in Ambulatory HIV Patients in the Current Treatment Era

Context HIV infection has become a manageable chronic disease. There are few studies of pain and symptoms in the current treatment era. Objectives The primary objective was to determine the prevalence of and risk factors for pain and physical and psychological symptoms in a population of ambulatory HIV patients. Methods We performed a cross-sectional study using the Brief Pain Inventory and the Memorial Symptom Assessment Scale. Results We evaluated 156 individuals with a median age of 47.5 years (range 21–71), median time since HIV diagnosis of 11 years (range 3(interquartile range [IQR] 308–683). The majority (125, 80.6%) had an undetectable viral load. Seventy-six (48.7%) reported pain, of whom 39 (51.3%) had moderate to severe pain, and 43 (57.3%) had pain that caused moderate to severe interference with their lives. The median number of symptoms was eight (IQR 5–14.5) of 32 queried. In multivariable analyses, patients with psychiatric illness were 39.8% more likely to have pain (P Conclusion Pain and other physical and psychological symptoms were common among ambulatory HIV patients. Pain and symptoms were strongly associated with psychiatric illness and IV drug use. Future investigation should evaluate interventions that include psychiatric and substance abuse components for HIV patients with pain

Do chiropractic college faculty understand informed consent: a pilot study

BACKGROUND: The purpose of this study was to survey full-time faculty at a single chiropractic college concerning their knowledge of Institutional Review Board (IRB) policies in their institution as they pertain to educational research. METHODS: All full-time faculty were invited to participate in an anonymous survey. Four scenarios involving educational research were described and respondents were asked to select from three possible courses of action for each. In addition, respondents were queried about their knowledge of IRB policies, how they learned of these policies and about their years of service and departmental assignments. RESULTS: The response rate was 55%. In no scenario did the level of correct answers by all respondents score higher than 41% and in most, the scores were closer to just under 1 in 3. Sixty-five percent of respondents indicated they were unsure whether Palmer had any policies in place at all, while 4% felt that no such policies were in place. Just over one-quarter (27%) were correct in noting that students can decline consent, while more than half (54%) did not know whether there were any procedures governing student consent. CONCLUSION: Palmer faculty have only modest understanding about institutional policies regarding the IRB and human subject research, especially pertaining to educational research. The institution needs to develop methods to provide knowledge and training to faculty. The results from this pilot study will be instrumental in developing better protocols for a study designed to survey the entire chiropractic academic community

Health status of UK care home residents: a cohort study

Background: UK care home residents are often poorly served by existing healthcare arrangements. Published descriptions of residents’ health status have been limited by lack of detail and use of data derived from surveys drawn from social, rather than health, care records. Aim: to describe in detail the health status and healthcare resource use of UK care home residents Design and setting: a 180-day longitudinal cohort study of 227 residents across 11 UK care homes, 5 nursing and 6 residential, selected to be representative for nursing/residential status and dementia registration. Method: Barthel index (BI), Mini-mental state examination (MMSE), Neuropsychiatric index (NPI), Mini-nutritional index (MNA), EuroQoL-5D (EQ-5D), 12-item General Health Questionnaire (GHQ-12), diagnoses and medications were recorded at baseline and BI, NPI, GHQ-12 and EQ-5D at follow-up after 180 days. National Health Service (NHS) resource use data were collected from databases of local healthcare providers. Results: out of a total of 323, 227 residents were recruited. The median BI was 9 (IQR: 2.5–15.5), MMSE 13 (4–22) and number of medications 8 (5.5–10.5). The mean number of diagnoses per resident was 6.2 (SD: 4). Thirty per cent were malnourished, 66% had evidence of behavioural disturbance. Residents had contact with the NHS on average once per month. Conclusion: residents from both residential and nursing settings are dependent, cognitively impaired, have mild frequent behavioural symptoms, multimorbidity, polypharmacy and frequently use NHS resources. Effective care for such a cohort requires broad expertise from multiple disciplines delivered in a co-ordinated and managed way

Palliative care in advanced dementia: comparison of strategies in three countries

Palliative care including hospice care is appropriate for advanced dementia, but policy initiatives and implementation have lagged, while treatment may vary. We compare care for people with advanced dementia in the United States (US), The Netherlands, and Israel. We conducted a narrative literature review and expert physician consultation around a case scenario focusing on three domains in the care of people with advanced dementia: (1) place of residence, (2) access to palliative care, and (3) treatment. We found that most people with advanced dementia live in nursing homes in the US and The Netherlands, and in the community in Israel. Access to specialist palliative and hospice care is improving in the US but is limited in The Netherlands and Israel. The two data sources consistently showed that treatment varies considerably between countries with, for example, artificial nutrition and hydration differing by state in the US, strongly discouraged in The Netherlands, and widely used in Israel. We conclude that care in each country has positive elements: hospice availability in the US, the general palliative approach in The Netherlands, and home care in Israel. National Dementia Plans should include policy regarding palliative care, and public and professional awareness must be increased.Geriatrics in primary carePublic Health and primary car