End-of-life care: findings from a national survey of informal caregivers

BACKGROUND: Family and friends are thought to be the predominant providers of end-of-life care, although nationally representative data on this topic have been lacking. METHODS: This study draws from the 1999 National Long-Term Care Survey and its Informal Caregivers Survey to characterize primary informal caregivers' experiences providing end-of-life care to chronically disabled community-dwelling older adults. Study participants were 1149 primary informal caregivers, stratified by care recipients' survival or death during the following 12 months. RESULTS: An estimated 11.2% of the chronically disabled community-dwelling older adults died within 1 year of being interviewed. Among persons who died, 72.3% were receiving help from an informal caregiver at the time of the interview. End-of-life primary informal caregivers helped an average of 43 hours per week, 84.4% provided daily assistance, and caregiver support services were infrequently used (ie, respite care and support groups were used by less than 5% of caregivers). While end-of-life caregivers reported significant emotional (28.9%), physical (18.4%), and financial (14.0%) strains, more than two thirds endorsed personal rewards related to their helping role. Compared with primary informal caregivers of persons who survived the following 12 months, end-of-life caregivers provided significantly higher levels of assistance and reported more challenges and strains, but they were no less likely to endorse rewards related to their helping role. CONCLUSIONS: End-of-life caregivers provide frequent and intense assistance with few supportive services. These data underscore the relevance of families to end-of-life care, and the potential benefit of better integrating families in patient care.     

End-of-life decision-making in respiratory intermediate care units: a European survey.

A survey was performed on behalf of the European Respiratory Society to assess end-of-life practices in patients admitted to European respiratory intermediate care units and high dependency units over a 6-month period. A 33-item questionnaire was sent by e-mail to physicians throughout Europe and the response rate was 28 (29.5%) out of 95. A total of 6,008 patients were admitted and an end-of-life decision was taken in 1,292 (21.5%). The mortality rate in these patients was 68% (884 out of 1,292). The patients received similar proportions of withholding of treatment (298 (23%) out of 1292), do-not-resuscitate or do-not-intubate orders (442 (34%) out of 1,292) and noninvasive mechanical ventilation as the ceiling of ventilatory care (402 (31%) out of 1,292). Withdrawal of therapy was employed in 149 (11%) out of 1,292 patients and euthanasia in one. Do-not-intubate/do-not-resuscitate orders were more frequently used in North compared with South Europe. All of the 473 competent patients directly participated in the decision, whereas, in 722 (56%) out of 1,292 cases, decision-making was reported to be shared with the nurses. In European respiratory intermediate care units and high dependency units, an end-of-life decision is taken for 21.5% of patients admitted. Withholding of treatment, do-not-intubate/do-not-resuscitate orders and noninvasive mechanical ventilation as the ventilatory care ceiling are the most common procedures. Competent patients are often involved, together with nurses.     

Teaching hematology to second year medical students: results of a national survey of hematology course directors

Increasing clinical productivity expectations at academic medical centers and new faculty effort reporting requirements for NIH-supported investigators challenge the tradition of faculty volunteerism for medical student teaching. To better define the structure, content, and financial support of second year medical school hematology courses nationwide, we mailed a survey to the hematology course directors at 85 of the 125 accredited US medical schools. The 58 course directors who returned the survey represent all regions of the US and both public and private medical schools. Median class size was 150 students (range 40-200), and some courses included a substantial proportion (up to 33%) of other types of students. The median number of hours per course was 33 h (range 8 to 74). Approximately 50% of the total teaching time was devoted to lecture (range 5 to 100%). Web-based teaching was used by 62% of course directors. The median number of faculty responsible for teaching the second year hematology course was 12 (range 1-36). The hematology course directors identified a number of obstacles, including difficulty in recruiting teachers, the lack of well-defined content, and the very modest budget (less than $1,500 for most courses). Only three of the course directors indicated that they received salary support for this role. These findings suggest that a national effort to define learning objectives for the hematology courses and to share teaching materials among medical schools is warranted. Little financial support is provided for the hematology course, and these findings compel the identification of resources to pay faculty for teaching medical student required courses.     

The structure and content of the medical subinternship: a national survey

OBJECTIVE: To describe the educational and administrative structure and content of internal medicine subinternship (SI) programs at medical schools throughout the United States. DESIGN: A cross-sectional mailed survey of internal medicine SI directors at U.S. medical schools. MAIN RESULTS: Responses were received from 100 (80%) of 125 eligible programs. Seventy-five percent of schools require a SI for graduation; 26% of these schools require the completion of a medical SI. Nationally, about 75% of all medical students opt to complete a medical SI. Dedicated SI administrative committees exist at 46% of medical schools. A minority of programs provide students with explicit curricula (31%) or exclusive conference time (36%). In 44% of programs, subinterns are used by hospital departments of medicine as intern substitutes. Subinterns are responsible for sign-out and cross-coverage in about half of the programs, and all patient orders entered by subinterns require cosignature. Subintern evaluation criteria include attending evaluation (100%), resident evaluation (80%), case write-ups (27%), supervised clinical examination (20%), written examination (14%), and oral examination (3%). CONCLUSION: Although most medical schools offer an SI in internal medicine and many require it, the experience often lacks clearly defined curricular goals and often does not provide medical students with house-staff-level responsibilities. In an effort to ease the transition from undergraduate to postgraduate training, further studies are needed to define which educational and structural components of the medicine SI should be developed and emphasized.     

Geriatric content in medical school curricula: results of a national survey

Despite recent gains in establishing academic sections, divisions, and departments of geriatrics in medical schools, much remains to be done to meet the medical needs of an aging population. To better understand how medical schools are educating students in geriatric-related topics, all U.S. allopathic and osteopathic medical schools were surveyed in two waves, in 1999 and 2000, using a questionnaire based on recommendations from the Education Committee of the American Geriatrics Society. Responding schools were more likely to address diseases and conditions of aging, psychosocial issues, and ethical issues and less likely to cover anatomic changes, nutrition, knowledge of healthcare financing, outcome measurement, and cultural aspects of aging. Although limited, the results indicate that medical schools have increased coverage of aging-related material, although further expansion of geriatric content will be necessary to meet the needs of an aging society.     

Palliative care for patients with dementia: a national survey

OBJECTIVES: To determine the extent to which hospice and nonhospice palliative care (PC) programs provide services to patients with dementia and to describe barriers and facilitators to providing nonhospice PC. DESIGN: Telephone and Web‐based surveys. SETTING: U.S. hospice and PC programs from the National Hospice and Palliative Care Organization's program list. PARTICIPANTS: Executive directors of 240 hospice programs, 173 programs providing hospice and nonhospice PC, and 13 programs providing nonhospice PC. MEASUREMENTS: A telephone survey of hospice and PC providers followed by an online survey of programs providing nonhospice PC. RESULTS: Ninety‐four percent of hospices and 72% of PC programs had served at least one patient with a primary diagnosis of dementia within the past year. Based on 80 responses to the online survey, the most highly rated barriers to providing PC were lack of awareness of PC by families and referring providers, need for respite services, and reimbursement policies. Highly rated needs were family information, assistance with caregiver burden, and behavioral symptoms. Strategies critical for success were an interdisciplinary team, collaboration with community organizations, and alternatives to aggressive end‐of‐life care. CONCLUSION: Almost all hospices and a majority of nonhospice PC programs serve patients with dementia. Education and policy efforts should focus on education for families and providers, support for caregivers, and reforming reimbursement structures to provide coverage for interdisciplinary PC earlier in the disease, when patients have high needs but are not hospice eligible.     

Outpatient wound preparation and care: a national survey.

STUDY OBJECTIVE: To sample the practice styles of emergency physicians caring for acute traumatic wounds. DESIGN: Written survey. SETTING: US emergency departments obtained from the American College of Emergency Physicians mailing list. SUBJECTS: Randomly selected ACEP members. MAIN RESULTS: One hundred fifty-one of 285 (53%) survey mailings were returned. Eighty-six percent of respondents were primarily clinicians, and the majority (61.6%) worked in EDs with annual patient visits between 21,000 and 50,000. The majority of respondents (64.2%) were certified by the American Board of Emergency Medicine. Nineteen percent managed wounds based on provider preference despite the existence of written wound management protocols. We identified a variety of practices that are contrary to current literature and textbook recommendations. Fifty-eight (38%) soaked wounds, whereas 21% used either 10% povidone iodine or hydrogen peroxide to cleanse wounds. One hundred one (67%) scrubbed the entire wound surface using, among other methods, cotton gauze (59%) or a coarse, bristle-laden sponge (38%). Forty (27%) irrigated wounds using techniques that have not been proven to deliver the 5 to 8 psi necessary for adequate tissue cleansing. Delayed primary closure, a treatment option for lacerations at increased risk for infection, was infrequently or never practiced by 76% of respondents. All respondents administered IV antimicrobials at least occasionally for simple outpatient lacerations. CONCLUSION: Methods of preparing, treating, and following outpatient wounds vary among emergency physicians, and these results support the idea that no de facto standard of care exists for this clinical problem. Outpatient wound care techniques routinely practiced (ie, soaking, scrubbing, use of full-strength hydrogen peroxide or full-strength povidone iodine) may be harmful based on limited animal and human research, whereas other proven techniques (ie, delayed primary closure) are infrequently practiced by many emergency physicians.     

Description of a research-based health activism curriculum for medical students

INTRODUCTION: Few curricula train medical students to engage in health system reform.
AIM: To develop physician activists by teaching medical students the skills necessary to advocate for socially equitable health policies in the U.S. health system.
SETTING: Montefiore Medical Center, the University Hospital of the Albert Einstein College of Medicine, Bronx, NY.
PROGRAM DESCRIPTION: We designed a 1-month curriculum in research-based health activism to develop physician activists. The annual curriculum includes a student project and 4 course sections; health policy, research methods, advocacy, and physician activists as role models; taught by core faculty and volunteers from academic institutions, government, and nongovernmental organizations.
PROGRAM EVALUATION: From 2002 to 2005, 47 students from across the country have participated. Students reported improved capabilities to generate a research question, design a research proposal, and create an advocacy plan.
DISCUSSION: Our curriculum demonstrates a model for training physician activists to engage in health systems reform.     

HIV testing during the Canadian immigration medical examination: a national survey of designated medical practitioners

HIV testing is mandatory for individuals wishing to immigrate to Canada. Since the Designated Medical Practitioners (DMPs) who perform these tests may have varying experience in HIV and time constraints in their clinical practices, there may be variability in the quality of pre- and posttest counseling provided. We surveyed DMPs regarding HIV testing, counseling, and immigration inadmissibility. A 16-item survey was mailed to all DMPs across Canada (N = 203). The survey inquired about DMP characteristics, knowledge of HIV, attitudes and practices regarding inadmissibility and counseling, and interest in continuing medical education. There were a total of 83 respondents (41%). Participants frequently rated their knowledge of HIV diagnostics, cultural competency, and HIV/AIDS service organizations as “fair” (40%, 43%, and 44%, respectively). About 25%, 46%, and 11% of the respondents agreed/strongly agreed with the statements “HIV infected individuals pose a danger to public health and safety,” “HIV-positive immigrants cause excessive demand on the healthcare system,” and “HIV seropositivity is a reasonable ground for denial into Canada,” respectively. Language was cited as a barrier to counseling, which focused on transmission risks (46% discussed this as “always” or “often”) more than coping and social support (37%). There was a high level of interest (47%) in continuing medical education in this area. There are areas for improvement regarding DMPs' knowledge, attitudes, and practices about HIV infection, counseling, and immigration criteria. Continuing medical education and support for DMPs to facilitate practice changes could benefit newcomers who test positive through the immigration process.     

Models of adult day care: findings from a national survey

We examined a nationally representative sample of 60 adult day care centers to describe the state of this evolving care modality after a decade's growth. Results indicate that day care centers can be categorized into three models of care, each of which serves a distinctive subpopulation. Model appropriateness was tested with analysis of variance of differences in participant characteristics. Services, staffing, costs, and other program features are contrasted among the three models.     

End-of-life care for persons with advanced chronic obstructive pulmonary disease: Report of a national interdisciplinary consensus meeting

While systemic shortcomings in meeting the needs of individuals with progressive chronic illnesses at the end of life have been well documented, there is growing interest in improving both care and quality of life for persons with advanced chronic obstructive pulmonary disease (COPD). For instance, the American Thoracic Society has issued an official statement on palliative care for patients with respiratory diseases, affirming that the prevention, relief, reduction and soothing of symptoms “without affecting a cure” must become an integral component of standard care. A recent Medline search located 1015 articles related to palliative or end-of-life care for people with COPD published between 2001 and 2008, compared with only 336 articles published before 2001. To address the needs of Canadian patients, an interdisciplinary consensus meeting, funded by the Canadian Institutes of Health Research and supported by the Canadian Thoracic Society, the Canadian Respiratory Health Professionals and the Canadian Lung Association was convened in Toronto, Ontario, on November 22, 2008, to begin examining the quality of end-of-life care for individuals with COPD in Canada. The present report summarizes the background to and outcomes of this consensus meeting.     

Pediatric emergency medicine--current standards of care: results of a national survey

To assess current standards of care in pediatric emergency medicine, a questionnaire was mailed in May 1988 to the medical directors of all existing pediatric emergency medicine fellowship programs. Twenty-three programs (96%) completed this survey, which consisted of questions regarding census, staffing patterns, ancillary services, patient follow-up, and various clinical issues. The major deficiencies in pediatric emergency care identified by this survey concerned patient waiting time, weekend radiology coverage, patient follow-up, feedback to referring physicians, and feedback to emergency department housestaff on hospitalized patients. The data suggest that pediatric EDs associated with fellowship training programs are improving their quality of care, yet room for advancement in many categories remains.