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PROJECTSEnd-of-Life Care Innovations in End-of-Life Care:
An International Journal in End-of-life Care GeneticsParent Education on DNA testing
in the newborn screen Health Care EthicsIntegrating Ethics throughout the VA Health Care System Pain ManagementCancer
Pain Relief in a Managed Care Setting Organ DonationIncreasing Organ Donation by Enhancing End-of-Life Care End-of-Life CareInnovations in End-of-Life CareInnovations in End-of-Life Care is an international, peer-reviewed journal publishing bimonthly theme-based issues on line, and selected articles bimonthly in print in a standing section of the Journal of Palliative Medicine (JPM). The journal's mission is to promote more humane, comprehensive and coordinated care to persons suffering from life-threatening diseases and their families, such that patients experience enhanced comfort, higher physical functioning, and a greater sense of well-being at the end of life. The journal aims to speed the rate of innovation by publishing examples of promising practices drawn from across the globe and international perspectives that critique cultural and national assumptions about what is and is not possible and appropriate in end-of-life care. Currently, this award-winning site on the web has 12,000 registered users and each issue is read by more than by more than 8000 readers each month throughout the United States, Canada, the United Kingdom, many other countries in Europe and in Australia. Yearly retrospectives are published in a companion compendium, by Mary Ann Liebert Publishing Company.
The Initiative for Pediatric Palliative Care (IPPC): Enhancing Family-Centered Care for Children Living with Life-Threatening Conditions (Phase I)This project aims to improve pediatric palliative care by rigorously encouraging a holistic, family-centered approach to the care of children living with life-threatening conditions. During Phase I of the project we surveyed nearly 2000 clinicians in seven children's hospitals and interviewed parents and clinicians to gain their persepctives about how to improve the care of gravely ill children. During this needs assessment phase, we also convened an expert advisory group which identified quality domains for family-centered pediatric palliataive care. Findings from this background research were used to design a comprehensive curriculum undertaken in Phase II of the project, described below.
The Initiative for Pediatric Palliative Care (IPPC): Enhancing Family-Centered Care for Children Living with Life-Threatening Conditions (Phase II)This phase of the project has two foci: (a) facilitating quality improvements in pediatric palliative care in six of the country's leading children's hospitals, and (b) developing a comprehensive interdisciplinary curriculum. The curriculum is organized into six modules: values and principles of family-centered care, pain and symptom management, bereavement and suffering, communication skills, ethical challenges in pediatric end-of-life decision making, and continuity of care. There are 30 hours of instructional materials, a faculty and six videos. With respect to the quality improvement arm of the project, EDC is providing technical assistance to six hospitals as they develop and implement new programs for children and their families. The six are: Children's Hospital of Boston; Children's Hospital of Philadelphia; Johns Hopkins Children's Center, Children's Mercy Hospital and Clinics of Kansas City, Missouri; and Vanderbilt University Children's Hospital. In addition to these pilot sites, NACHRI is identifying palliative care champions in all children's hospitals and all general hospitals with pediatric services to serve as liaisons to the project. In addition, NACHRI, the Society of Pediatric Nurses (SPN), the six pilot hospitals and The Lucile Packard Children's Hospital Stanford University are all assisting with review of the curriculum. See http://www.ippcweb.org for more details.
Project to Enhance Relational and Communication Skills (PERCS)This project is being implemented in collaboration with Children's Hospital Boston. This is a comprehensive training project for house staff, medical residents, nurses and allied health professionals in improving communication and relationship-building skills with children and families. The focus is on engaging in difficult conversations with children with life-threatening illness and their parents. A comprehensive curriculum involving interviewing simulated patients, video feedback, personal and professional debriefing, and didactic presentations in pediatric palliative care is implemented in four three-hour sessions, held weekly over a four-week period. The curriculum will be repeated monthly to reach a large number of health care professionals. The educational philosophy and teaching strategies will also be highlighted in a videotape produced by the Initiative for Pediatric Palliative Care, and will be disseminated nationally as part of that initiative.
Project to Develop a Pediatric End-of-Life Care Curriculum for Social WorkersThis project involves the development of a comprehensive curriculum in pediatric end-of-life care for master's level social workers providing end-of-life care services to children and families. While several excellent educational projects in end-of-life care for social workers have been developed in recent years, there is an absence of curricula addressing the complex challenges unique to hospice and palliative care in pediatric settings. Using video, role-play, didactic presentations and experiential methods, this curriculum will provide social workers with the theoretical foundation, clinical expertise, tools and resources to provide optimal pediatric palliative care. The program will offer step-by-step facilitator's guides for educating social workers in the following six areas: engaging with children and families; relieving pain and other symptoms; improving communication and strengthening relationships; responding to suffering and bereavement; sharing decision-making; and establishing continuity of care.
Decisions Near the End of LifeA national initiative to improve terminal and palliative care in the United States by equipping health care institutions to address ethical and legal misconceptions that stand in the way of better care for patients and families. Two hundred and twenty-five hospitals and nursing homes in 32 states participated in this program. EDC staff directly trained more than 1000 physicians, nurses, social workers, and pastoral counselors, who in turn have trained approximately 40,000 colleagues at their institutions.
The National Task Force for End-of-Life Care in Managed CareThe National Task Force for End-of-Life Care in Managed Care was a project which aimed to promote institutional improvements in end-of-life care through vigorous advocacy and policy development. The task force, chaired by Dr. Solomon, was the first time that medical directors of for-profit and not-for profit managed care organizations, palliative care experts, ethicists, and quality improvement specialists were convened within one group and charged with the mission of analyzing where the leverage points are for enhancing care of the dying. The task force issued a consensus document, Meeting the Challenge: Twelve Recommendations for Improving End-of-Life Care within Managed Care, which was distributed to the 3000 medical directors of managed care organizations holding Managed Medicare contracts with the federal government. Its recommendations have been debated broadly and serve as the foundation for current reform efforts in managed care.
Palliative Care in Germany and the United States: A Cross-National ComparisonThe goal for this planning grant was to better understand the similarities and differences in palliative care for terminally ill patients in Germany and the United States, to develop an edited volume of essays comparing and contrasting German and American approaches to end-of-life care, and to spur collaborative research. The grant enabled two study teams, one based in Boston, the other in Munich, to meet in person twice, each time for one week of intensive exchange. The first meeting in January 2000 was hosted by the Ludwig Maximilians Universitat; the second meeting occured in Boston in Spring 2000, hosted by CAEPP. In addition to intensive planning sessions and cultural exchange by the study teams, each week culminated in a public symposium, open to the general medical, nursing and health care audience in each city. A 12-chapter edited volume is currently in progress and small set of empirical studies, e.g. research on the measurement of quality of life in patients with endstage neurological disease, have begun. In additional, two teams have been involved in adapting EDC's Decisions Near the End of Life program for Germany, including translation and adaptation of the Decisions' Institutional Profile, a survey tool, and the full set of Decisions case-based teaching materials. These newly adapted materials were piloted in Groshadern, the teaching hospital of Ludwig Maximilians Universitat in Munich and a different version is being produced for use in Basel, Switzerland.
GeneticsParent Education on DNA Testing in the Newborn ScreenAdvances in technology and sequence information generated by the Human Genome Project will allow newborn screening programs to utilize mutation analysis on DNA obtained from newborn dried blood spot samples to detect an increasing number of hereditary disorders. On February 1, 1999 Massachusetts expanded the mandate of newborn screening programs to an optional pilot program for cystic fibrosis. By piloting a statewide newborn Screening program for cystic fibrosis that will involve DNA testing, the Massachusetts Department of Public Health has provided an opportunity to evaluate the impact of different methods of education on consumers' understanding of screening and anxiety in the event they are called back for further testing. This project is to provide English and Spanish-speaking parents with the information they need to understand the basis and implications of DNA testing for inherited disorders evaluated in the newborn screen. In the initial phase of the project new written materials and videos for Spanish and English speakers will be developed based on extensive input from parents and other stakeholders. In follow-up research a randomized controlled trial will be conducted to evaluate different types of educational interventions for new parents with respect to their ability to inform and reduce anxiety.
Consumer Perspectives on the Promise of Cystic Fibrosis Gene TherapyThis project will assess the impact of gene therapy publicity, and its promise of cure, on patients, families, and their physicians. To achieve this goal, the study team will do a content analysis of information materials disseminated to CF patients and the public, conduct interviews with adult CF patients and parents of children with CF in Philadelphia and Boston, and conduct interviews with physicians at CF centers in New England. Interview results will be used to develop a consumer-focused survey tool which will be administered to adult CF patients and parents of children with CF cared for in New England and to members of Cystic Fibrosis Worldwide across the U.S. Findings will be presented to an expert advisory group composed of people living with CF, researchers, clinicians, ethicists, journalists, and biotechnologists. This group will assist the study team in drafting recommendations for how best to reconcile the promise with the reality of CF gene therapy and identify the possible implications for other areas of gene therapy research. Recommendations will focus on consumer and clinician education that will help protect vulnerable consumer groups from potential harms and enhance trust in biomedical research; however, they will also have relevance for a broader array of issues, such as recruitment into gene therapy trials and priorities for research and care delivery.
Factors Influencing Use of Cancer Genetics by PhysiciansThis study identifies primary care physician (PCP) needs for education in cancer genetics. Three major activities will be undertaken. 1. In-depth interviews will be conducted with primary care physicians, serving a culturally and socioeconomically diverse group of patients in urban, rural and suburban settings; the purpose of these interviews is to document in detail PCPs' understanding of cancer genetics and the barriers and opportunities they see for enhancing good cancer family history-taking. 2. A survey will be administered to PCPs in the three types of practice settings to provide a generalizable assessment of PCPs' cancer genetics knowledge and to test a model of factors hypothesized to predict appropriate PCP use of cancer family histories; this theoretical model specifies modifiable factors, both within individuals and in their organizational settings, that could be changed by an intervention program. The sample will include physicians affiliated with an urban medical center where ethnic minorities make up 85% of the patient population, rural physicians in northern New England, and suburban-based physicians in Massachusetts. 3. An expert panel will use the data collected from PCPs and current cancer genetics curricula for physicians to recommend educational objectives for PCP education. These recommendations will be used in future studies to develop and test an educational intervention aimed at preparing PCPs to conduct and interpret cancer family histories, and to manage their patients who have a familial risk for cancer.
SACGT: A Public Consultation on Oversight of Genetic TestsThis project provided assistance to the Secretary's Advisory Committee on Genetic Testing promote and collect public comments on the oversight of genetic tests. A summary of public comments submitted via the project's Web site was used by the SACGT to prepare a report, Enhancing the Oversight of Genetic Tests, that was submitted to the Surgeon General and the Secretary of Health and Human Services.
Health Care EthicsIntegrating Ethics throughout the VA Health Care SystemCAEPP has been chosen by the Veteran's Administration's National Center for Ethics to develop a curriculum that will promote and support the use of an Integrated Ethics Philosophy. The program will be used throughout the VA health care system, which includes 171 medical centers, more than 350 outpatient, community, and outreach clinics, and 126 nursing home care units-the nation's largest integrated health care delivery system. The multilayered curriculum will include face-to-face workshops and seminars for teams of change agents from facilities in each of the 23 regional Veteran's Integrated Service Networks (VISNs), followed by video-based skill building courses, computer-based "Topics in Ethics" modules, and ongoing cyber support. The overall goal of the program is to use a systems change approach to integrate ethical analysis and oversight into every aspect of patient care.
Pain ManagementCancer Pain Relief in a Managed Care SettingA randomized controlled study to determine whether cancer pain management for patients receiving their care in a managed care setting can be improved through staff education and changes in clinic procedures.
Mayday PainLink: A Virtual Community of Institutions Committed to Relieving PainPainLink was a virtual community of health professionals working in institutions committed to alleviating pain. An initiative of Education Development Center, Inc., PainLink was established in 1995 with funding from The Mayday Fund of New York City, which funded PainLink through 1999. From1995 through 2001, EDC's PainLink staff worked with staff in over 60 hospitals and nursing homes. Participating institutions received technical assistance (TA) which included administration of the Pain Management inventory (a clinician survey of knowledge, attitudes, institutional barriers, and pain management learning needs), teaching cases, consultation with EDC staff, a listserve discussion, and access to a variety of pain management resources. The Mayday PainLink site is now an archived site—pages with many resources for improving pain management continue to be available the public.
Organ DonationIncreasing Organ Donation by Enhancing End-of-Life Care: A Family-Centered, Quality Improvement ProgramEDC collaborated with the New England Organ Bank and three tertiary care hospitals in New England to develop and evaluate an institutional intervention to increase organ donation by integrating research findings from three areas: organ donation, end-of-life care, and quality improvement. The study premise is that an intervention based on insights from both organ donation research and end-of-life research will increase health care professionals' comfort and skill discussing death and dying and also build an institution's capacity to support families through the end-of-life period. The intervention includes an institutional commitment to treating donation as a quality indicator and introduces a hospital-based Family Support Team to sustain effective communication with families.
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