Carol Spence

Survey on Use of Palliative Radiotherapy in Hospice Care

PURPOSE Radiation oncologists and hospice professionals both provide end-of-life care for oncology patients, and little has been written about the interface between these two groups of specialists. Hospice professionals were surveyed to assess the perceived need for palliative radiotherapy in the hospice setting, to investigate factors that limit the access of hospice patients to radiotherapy, and to suggest areas of future collaboration on education, research, and patient advocacy. PATIENTS AND METHODS Members of the National Hospice and Palliative Care Organization (NHPCO) and American Society for Therapeutic Radiology and Oncology jointly authored a questionnaire to investigate the beliefs of hospice professionals toward the use of radiotherapy for oncology patients in hospice. The questionnaire was distributed to all NHPCO member institutions, and the results were compiled and statistically analyzed. RESULTS Four hundred eighty of more than 1,800 surveyed facilities responded to the questionnaire. The findings suggest that the majority of hospice professionals feel that radiotherapy is important in palliative oncology and that radiotherapy is widely available in the United States. Yet less than 3% on average of hospice patients served by hospices responding to the survey actually received radiotherapy in 2002. The most common barriers to radiotherapy in hospice care include radiotherapy expense, transportation difficulties, short life expectancy, and educational deficiencies between the specialties. CONCLUSION Multiple barriers act to limit the use of palliative radiotherapy in hospice care. Finding ways to surmount these obstacles will provide opportunity for improvement in the end-of-life care of cancer patients.

Does Hospice Improve Quality of Care for Persons Dying from Dementia

OBJECTIVES: To examine the effectiveness of hospice services for persons dying from dementia from the perspective of bereaved family members.

Defining Patient Safety in Hospice: Principles To Guide Measurement and Public Reporting

Despite progress towards safer care in most settings, there has been much less attention to improving safety in hospices, which care for more than 1,500,000 patients every year. In this article, we describe three serious conflicts that arise when safety measures from other settings are applied to hospice. First, safety measures that are imposed in order to reduce morbidity and mortality may be irrelevant for a hospice patient whose goals focus on comfort. Second, safety measures that are defined in patients with a life expectancy of years can be inappropriate for hospice patients whose typical survival is measured in days. Third, it can be very difficult to assign responsibility for the safety of hospice patients, whose care is provided mostly by family and friends. Therefore, generally accepted safety measures are often inappropriate for hospice care, and can lead to unintended consequences if they are applied without critical evaluation or modification. Instead, we suggest three principles that can guide the development of hospice-appropriate safety measures by considering a patients goals and life expectancy, and the degree to which responsibility for a patients care is shared.

Use of Electronic Documentation for Quality Improvement in Hospice

Little evidence exists about the use of electronic documentation (ED) in hospice and its relationship to quality improvement (QI) practices. The purposes of this study were to (1) estimate the prevalence of ED use in hospice, (2) identify organizational characteristics associated with use of ED, and (3) determine whether quality measurement practices differed based on documentation format (electronic vs nonelectronic). Surveys concerning the use of ED for QI practices and the monitoring of quality-related care and outcomes were collected from 653 hospices. Users of ED were able to monitor a wider range of quality-related data than users of non-ED. Quality components such as advanced care planning, cultural needs, experience during care of the actively dying, and the number/types of care being delivered were more likely to be documented by users of ED. Use of ED may help hospices monitor quality and compliance.

Foreword: Quality Improvement Efforts: Advancing the Science of Palliative Care

David J. Casarett, MD, MA, Sydney Dy, MD, MSc, Carol Spence, PhD, and Dale Lupu, PhD Perelman School of Medicine, University of Pennsylvania (D.J.C.), Philadelphia, Pennsylvania; Johns Hopkins Bloomberg School of Public Health (S.D.), Baltimore, Maryland; National Hospice and Palliative Care Organization (C.S.), Alexandria, Virginia; American Academy of Hospice and Palliative Medicine (D.L.), Glenview, Illinois; and School of Medicine and Health Sciences (D.L.), George Washington University, Washington, DC, USA

Development of an Assessment to Examine Training of the Hospice Primary Caregiver

BACKGROUND Key to high-quality care of dying hospice patients at home is whether the hospice provides adequate training so the caregiver can safely care for the patient. OBJECTIVE The study objective was to develop and validate a survey of hospice training for caregivers to ensure safe, high-quality care in the home setting. DESIGN Our survey design was cross-sectional. Bereaved respondents of individuals who died at home under the care of hospice were surveyed three to six months postdeath. MEASUREMENTS Items were developed based on advice of an expert panel, focus groups of hospice caregivers, and literature review, with 12 items developed for testing and examining 8 key processes of care. We examined the validity and reliability of the assessment using factor analysis, correlational analyses, and multivariable modeling. RESULTS Our sample consisted of 262 primary caregivers (mean age 62.4, 76.7% female, 58.8% non-Hispanic white). Six questions focused on providing the caregiver with information, while another six focused on the training that hospice provided. Based on model fit and Cronbachs alpha, we dropped the information items. The items that examined hospice training demonstrated a one-factor solution and a Cronbachs of 0.90. We examined correlations of the multi-item composite with overall rating of quality of care (0.53), overall distress (0.31), and whether the respondent would recommend this hospice to others (0.49). There were no significant sociodemographic correlates of concerns with training. CONCLUSIONS Sufficient preliminary reliability and validity warrants further testing of this composite to examine the adequacy of training provided to family members to care safely for the patient.