John Song

Dying on the Streets: Homeless Persons’ Concerns and Desires about End of Life Care

BackgroundThere is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved.ObjectiveExplore the concerns and desires for EOL care among homeless persons.DesignQualitative study utilizing focus groups.ParticipantsFifty-three homeless persons recruited from agencies providing homeless services.MeasurementsIn-depth interviews, which were audiotaped and transcribed.ResultsWe present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged.ConclusionsHomeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised.

The prevalence of homelessness among injection drug users with and without HIV infection.

Cross-sectional investigations of homelessness have many potential biases. Data from 2,452 individuals enrolled in a longitudinal cohort study of Baltimore, Maryland, residents recruited in 1988–1989 with a history of injection drug use were analyzed to identify the extent and determinants of homelessness. Proportions having ever experienced homelessness were compared across subgroups of injection drug users (IDUs) who were human immunodeficiency virus (HIV) negative, HIV positive, and HIV seroconverting. Logistic regression identified independent predictors of homelessness. In the cohort, 1,144 (46.7%) participants experienced homelessness during the course of the study. There were differences in prevalence of homelessness by serostatus: 42.4% (n=621) of participants who remained HIV negative were ever homeless, while 50.6% (n=346) of HIV-infected individuals and 58.9% (n=178) of those who seroconverted during the study were ever homeless (P<.001). Participants who consistently denied active injection drug use during follow-up were unlikely to experience homelessness (19%). Independent predictors of homelessness were male sex, HIV seroprevalence, and HIV seroconversion. Following participants over time captures more experiences of homelessness than cross-sectional studies and more accurately identifies risk characteristics. Our data suggest that homelessness is a significant problem among IDUs, especially those with HIV/AIDS.

Experiences With and Attitudes Toward Death and Dying Among Homeless Persons

BackgroundHomeless persons face many barriers to health care, have few resources, and experience high death rates. They live lives of disenfranchisement and neglect. Few studies have explored their experiences and attitudes toward death and dying. Unfortunately, studies done in other populations may not apply to homeless persons. Exploring these experiences and attitudes may provide insight into life, health care, and end-of-life (EOL) concerns of this population.ObjectiveTo explore the experiences and attitudes toward death and dying among homeless persons.DesignQualitative study utilizing focus groups.ParticipantsFifty-three homeless persons recruited from homeless service agencies.MeasurementsIn-depth interviews, which were audiotaped and transcribed.ResultsWe present seven themes, some of which are previously unreported. Homeless persons described many significant experiences with death and dying, and many participants suffered losses while very young. These encounters influenced participants’ attitudes toward risks and risky behavior: e.g., for some, these experiences provided justification for high-risk behaviors and influenced their behaviors while living on the streets. For others, they may be associated with their homelessness. Finally, these experiences informed their attitudes toward death and dying as well as EOL care; homeless persons believe that care will be poor at the EOL.ConclusionsFindings from this study have implications for addressing social services, health promotion, prevention, and EOL care for homeless persons, as well as for others who are poor and disenfranchised.

Effect of an End-of-Life Planning Intervention on the Completion of Advance Directives in Homeless Persons: A Randomized Trial

BACKGROUND Few interventions have focused on improving end-of-life care for underserved populations, such as homeless persons. OBJECTIVE To determine whether homeless persons will complete a counseling session on advance care planning and fill out a legal advance directive designed to assess care preferences and preserve the dignity of marginalized persons. DESIGN Prospective, single-blind, randomized trial comparing self-guided completion of an advance directive with professionally assisted advance care planning. (ClinicalTrials.gov registration number: NCT00546884) SETTING 8 sites serving homeless persons in Minneapolis, Minnesota. PARTICIPANTS 262 homeless persons recruited between November 2007 and August 2008. INTERVENTION Minimal, self-guided intervention consisting of advance directive forms and written educational information versus a one-on-one advance planning intervention consisting of counseling and completing an advance directive with a social worker. MEASUREMENTS Rate of advance directive completion, assessed by inspection of completed documents. RESULTS The overall completion rate for advance directives was 26.7% (95% CI, 21.5% to 32.5%), with a higher rate in the counselor-guided group (37.9%) than in the self-guided group (12.8%) (CI of adjusted difference, 15.3 to 34.3 percentage points). This difference persisted across all sites and most subgroups. The advance directives 4 clinical scenarios found a preference for surrogate decision making in 29% to 34% of written responses. LIMITATIONS Sampling was limited to a more stable subset of the homeless population in Minneapolis and may have been subject to selection bias. Modest compensation to complete the preintervention survey could have influenced participants to complete advance directives. CONCLUSION Both a simple and complex intervention successfully engaged a diverse sample of homeless persons in advance care planning. One-on-one assistance significantly increased the completion rate. Homeless persons can respond to an intervention to plan for end-of-life care and can express specific preferences for care or a surrogate decision maker, but additional studies are needed to assess the effect of these directives on subsequent care. PRIMARY FUNDING SOURCE National Institute for Nursing Research and National Center on Minority Health and Health Disparities.

Engaging Homeless Persons in End of Life Preparations

BackgroundThere are no prospective studies that have investigated the effects of an intervention to improve end of life (EOL) care in an underserved population.ObjectiveTo determine whether homeless persons will complete an advance directive (AD).DesignRandomized trial comparing two modes of providing an opportunity for homeless persons to complete an AD. Half of the subjects were randomized to a self-guided group (SG) who were given an AD and written instructions; the other half were given the same material but, in addition, were offered the opportunity to receive guidance to complete the AD (CG).ParticipantsFifty-nine homeless persons recruited from a drop-in center.MeasuresRate of AD completion and baseline and 3-month follow-up EOL-related knowledge, attitudes, and behaviors.ResultsThe overall AD completion rate was 44%, with a statistically significant higher completion rate of 59% in the CG group compared to 30% in the self-guided only group. Frequency of worry about death decreased among those who filled out an AD from 50% to 12.5%, and also among those who did not (25% to 12.5%) (p < .05). Among those who filled out an AD, there were increases in plans to write down EOL wishes (56% to 100%; p < .05) and plans to talk about these wishes with someone (63% to 94%; p < .05).ConclusionThis study demonstrates that people living in dire economic and social situations will complete an AD when offered the opportunity. While offering guidance resulted in higher rates of completion; even a simple self-guided AD process can achieve completion of ADs in this population.

Role-modeling and medical error disclosure: a national survey of trainees.

Purpose To measure trainees’ exposure to negative and positive role-modeling for responding to medical errors and to examine the association between that exposure and trainees’ attitudes and behaviors regarding error disclosure. Method Between May 2011 and June 2012, 435 residents at two large academic medical centers and 1,187 medical students from seven U.S. medical schools received anonymous, electronic questionnaires. The questionnaire asked respondents about (1) experiences with errors, (2) training for responding to errors, (3) behaviors related to error disclosure, (4) exposure to role-modeling for responding to errors, and (5) attitudes regarding disclosure. Using multivariate regression, the authors analyzed whether frequency of exposure to negative and positive role-modeling independently predicted two primary outcomes: (1) attitudes regarding disclosure and (2) nontransparent behavior in response to a harmful error. Results The response rate was 55% (884/1,622). Training on how to respond to errors had the largest independent, positive effect on attitudes (standardized effect estimate, 0.32, P < .001); negative role-modeling had the largest independent, negative effect (standardized effect estimate, −0.26, P < .001). Positive role-modeling had a positive effect on attitudes (standardized effect estimate, 0.26, P < .001). Exposure to negative role-modeling was independently associated with an increased likelihood of trainees’ nontransparent behavior in response to an error (OR 1.37, 95% CI 1.15–1.64; P < .001). Conclusions Exposure to role-modeling predicts trainees’ attitudes and behavior regarding the disclosure of harmful errors. Negative role models may be a significant impediment to disclosure among trainees.

Essential medicines in the United States - Why access is diminishing

Prices have been dramatically increasing for many older, off-patent drugs, some of which are considered “essential” by the World Health Organization. Some price hikes have made potentially life-saving therapies unavailable to disadvantaged patients in the United States.

The limitation of good intentions: Prescribing medications for the uninsured

Identifying affordable drug therapy options for individuals who lack prescription drug insurance is a problem frequently encountered by prescribers. Medication samples and manufacturer-sponsored assistance programs represent sources often used to address affordability issues. However, these sources have the potential to introduce health disparities through various mechanisms, including reduced access to the drug of choice, consistencies with access, and drug regimen complexities that adversely affect adherence. Prescribers should consider all sources of affordable medications and openly discuss treatment options and the anticipated outcomes of each with patients to ensure the prescribing of agents that optimize outcomes while balancing patient affordability.

Chronically homeless persons’ participation in an advance directive intervention: A cohort study

Background: Chronically homeless individuals have high rates of hospitalization and death, and they may benefit from the completion of advance directives. Aim: To determine the rate of advance directive completion using a counselor-guided intervention, identify characteristics associated with advance directive completion, and describe end-of-life care preferences in a group of chronically homeless individuals. Design: Participants completed a survey and were offered an opportunity to complete an advance directive with a trained counselor. Participants: A total of 205 residents of a shelter in Canada for homeless men (89.1% of those approached) participated from April to June 2013. Results: Duration of homelessness was ⩾12 months in 72.8% of participants, and 103 participants (50.2%) chose to complete an advance directive. Socio-demographic characteristics, health status, and health care use were not associated with completion of an advance directive. Participants were more likely to complete an advance directive if they reported thinking about death on a daily basis, believed that thinking about their friends and family was important, or reported knowing their wishes for end-of-life care but not having told anyone about these wishes. Among individuals who completed an advance directive, 61.2% named a substitute decision maker, and 94.1% expressed a preference to receive cardiopulmonary resuscitation in the event of a cardiorespiratory arrest if there was a chance of returning to their current state of health. Conclusion: A counselor-guided intervention can achieve a high rate of advance directive completion among chronically homeless persons. Most participants expressed a preference to receive cardiopulmonary resuscitation in the event of a cardiorespiratory arrest.

Homelessness and discharge delays from an urban safety net hospital

Objectives Homelessness is associated with increased morbidity and mortality, as well as increased rates of hospitalizations. Once hospitalized, homeless patients have longer hospital stays than housed persons, and hospital costs have been found to be increased for homeless patients. We sought to describe hospital discharge delays for nonmedical reasons and their relationship to the housing status of participants. Study Design Retrospective chart review of admissions and discharges between January 1 and June 30, 2009 at a large, urban safety net hospital. Methods All inpatients who experienced discharge delays for nonmedical or external causes were participants, and the main measures included length of and reasons for discharge delay. Results Persons identified as homeless constituted 106 (42.9%) of the discharge delays. Homeless patients were younger, more likely to be male, and more likely to be uninsured than housed patients. The unadjusted median number of delay days was significantly longer for homeless (8 days) than housed patients (4 days) (p Discussion Among patients without psychiatric diagnoses who are medically ready for discharge, homeless patients experience more frequent and longer discharge delays than housed patients. Medical respite care has the potential to decrease unnecessary hospitalization days and improve access to after-hospital services that have proven to be beneficial for this population. Further prospective study of discharge delays may help to establish the cost-effectiveness of respite care.