The Center for Applied Ethics: Patient/Provider

Project on Adult Care in Cystic Fibrosis (PAC-CF)
2003-2010: National Institutes of Health/National Institute of Heart, Lung, and Blood
EDC is collaborating with ten Cystic Fibrosis Centers across the country on a study whose purpose is to improve the quality of life and care of adults with cystic fibrosis (CF) by gathering empirical data on the quality of life, the symptom experience, the patterns of care, and the needs of adults with CF and their families as their illness progresses. This longitudinal panel study of adult with CF employs three methods of data collection: (1) self-administered mail-out, mail-back surveys of adults with CF and a family member or friend closely involved in their care, (2) telephone interviews with adults with advanced CF, family members of adults with CF who die, and physicians, and (3) medical record abstraction. Recruitment of adults with CF to participate in the study was completed in May, 2005 with 333 adults enrolled.

Promoting Self-Management: CF as a Model Case
2007-2010 National Institutes of Health/National Institute of Child Health and Human Development
This project will conduct qualitative research with adolescents with CF and their parents to discover and document barriers to and facilitators of self-management, use this knowledge to complete development of an innovative intervention to promote self-management, and then conduct a formative evaluation of the intervention. The Peer Group Intervention will incorporate the crucial element of personal meaning, which we hypothesize will lead to more robust effects than prior interventions based solely on constructs from social cognitive theory. Adolescents with CF will be asked to actively express their experiences with their disease and treatment regimen through the creation and sharing of illness and self-management narratives. Adolescents will participate in an online virtual community, which will “meet” monthly for six months to exchange and discuss video portraits which the teenagers will create in-between the scheduled online community meetings. Through these videos and online meetings, the teens will show and tell how they carry out various time-consuming and complex CF self-management tasks and reflect on the meaning and impact of the disease and its treatment regimen on their personal goals, quality of life and sense of self. Intervention Mapping, a systematic planning process for intervention development that specifies procedures for integrating theoretical constructs and empirical evidence, will guide development of the intervention.

Program to Enhance Relational and Communication Skills (PERCS)
2002-2009: The Argosy Foundation (Subcontract from Children’s Hospital Boston)
Initiated in collaboration with Children’s Hospital Boston, PERCS is an educational program for house staff, medical residents, nurses, and allied health professionals focused on improving communication and relationship-building skills with children and families. The one-day workshop includes interviewing of simulated patients, video feedback, personal and professional debriefing, and didactic presentations in pediatric palliative care and communication principles. This workshop continues to be offered on a monthly basis, and has been attended by over 150 practitioners. The educational philosophy and teaching strategies are highlighted in a videotape being disseminated nationally as part of the Initiative for Pediatric Palliative Care curriculum. The program is currently being expanded and adapted for use in neonatal intensive care units.

IWP Process Evaluation
2008-2010: NY State Health Foundation/Bronx Lebanon Hospital Center/Martin Luther King Jr. Health Center
The Intensive Wellness Program (IWP) is an enhanced primary care program designed specifically to serve Medicaid patients who are at the greatest risk of repetitive, high cost utilization of medical care. The Bronx-Lebanon Hospital Center (BLHC) and the Martin Luther King Jr. Health Center, (MLK), a federally qualified primary care clinic affiliated with BLHC, jointly run the IWP. In the IWP, primary care and mental health care are offered conjointly, through a co-located team of clinicians including Family Medicine, Psychiatry, Social Work, Advance Practice Nursing, and Community Health Workers. In addition to primary care and behavioral health services, the IWP provides: (1) comprehensive multidisciplinary assessment; (2) community outreach; and (3) intensive patient tracking and case management. The IWP program, housed in its own building, provides an easily accessible and comfortable physical space uniquely for the targeted patients. The IWP is located in the South Bronx New York. EDC will carry out a process evaluation to describe the core elements of the IWP and patient perceptions about the program. The process evaluation will draw on program and patient records as well as in-depth interviews with IWP patients. A summary of the findings from the process evaluation will be useful to the IWP program planners to help them to improve the provider training and program implementation. Additionally, the process data will help to describe and explain the impact of the IWP on the care of Medicaid patients from the perspective of the patients.

Is Primary Care Ready to Utilize the Promise of Genetics? A Vignette Study
2006-2009: Oregon Health & Science University
One of the promises of genomic research is that information about a genetic disease or risk will increasingly provide the basis for screening and prevention to reduce morbidity and mortality. As a result, much of the meaningful medical action stemming from genetic information will take place under the auspices of primary care providers, underscoring the similarities rather than differences between genetic and other medical information. However, there is a crucial way in which genetically based management is different from other medical interventions: The identification of a genetic disorder or risk raises the question of risk for family members and with it concerns about rights and obligations in regard to disclosure of genetic risk information. From the viewpoint of bioethics, there is an implicit tension between rights of privacy and a putative moral obligation to disclose genetic risk information. A similar tension is found in the law between concerted efforts to preserve genetic privacy, with genetic privacy laws passed or proposed in most states and on a national level, and concurrently, a small, but potentially seminal, number of legal cases that suggest a health care provider may have a legal duty to share genetic risk information. This project considers these questions using a vignette survey method administered to health care providers (general internists, nurse practitioners, genetic counselors) and health care consumers ("naive" consumers and consumers "experienced" with a genetic disorder in their family). The research will identify barriers, both ethical and pragmatic, to the ethical and efficient deployment of genetic information to improve health outcomes.

Your Life, Your Choices: VA Advance Care Planning
2005-2006: Department of Veterans Affairs
EDC was chosen to support the VA in expanding the impact of Your Life, Your Choices (YLYC), a workbook to help guide laypersons in planning for future medical decisions. YLYC provides basic information to motivate readers to initiate advance care planning, clear and simple descriptions of common health conditions and treatments at the end of life, and step-by-step exercises and tools to help patients plan for end-of-life care. In previous research, patients who used the print version of YLYC reported more advance care planning discussions with their providers, filed written directives in their medical records twice as often as controls, and had higher agreement scores with their providers for treatment preferences, values, and personal beliefs. Working with subcontractor Illumina Interactive, EDC developed an accessible, effective, web-based version of Your Life, Your Choices which should be available to all veterans through the MHV portal. By making this tool available in a format that is accessible to veterans with a wide range of cognitive and physical conditions, and comfort with computers, EDC and VHA will be making a significant advance in breaking through the barriers that have impeded advance planning.

Initiative for Pediatric Palliative Care (IPPC), Phase I
1998-2000: The Nathan Cummings Foundation
This project was designed 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 perspectives 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 palliative care. Findings from this background research were used to design a comprehensive curriculum undertaken in Phase II of the project.

Initiative for Pediatric Palliative Care (IPPC), Phase II
2001-2005: The Nathan Cummings Foundation of New York City, The Open Society Institute’s Project on Death in America, Anonymous Foundation Donor
Based on the Phase I research, CAE developed a comprehensive interdisciplinary curriculum with 25 hours of instructional materials and an award-winning set of 6 video tapes. The materials were peer-reviewed by the National Association of Children's Hospitals and Related Institutions (NACHRI), the Society of Pediatric Nurses (SPN), the New York Academy of Medicine (NYAM) and the Association of Medical School Pediatric Department Chairs (AMSPDC), which is the membership organization of pediatric chairs of all U.S. medical schools. The curriculum is free for use by health care professionals and downloadable at www.ippcweb.org. In addition, CAE provided technical assistance to six children’s hospitals to develop and implement creative new programs for gravely ill children and their families (Children’s Hospital 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). Each hospital initiated its own institutional action plan and put lasting changes in place.

Initiative for Pediatric Palliative Care (IPPC), Phase III
2005-2007: The Nathan Cummings Foundation, The Argosy Foundation (Subcontract from Children’s Hospital Boston)
This stage of IPPC was focused on the development of an institutional infrastructure to improve pediatric palliative care education and practice in healthcare institutions that care for gravely ill children and their families through the implementation of a series of train-the-trainer retreats to be held across the United States. As a first step, EDC recruited 55 pediatric palliative care experts (including bereaved parents, as well as physicians, nurses, and social workers) from the United States and Canada, and familiarized them with the IPPC curriculum. These experts are now serving as IPPC faculty for regional train-the-trainer events which we are sponsoring in collaboration with major pediatric health care institutions across the United States. A distinctive characteristic of these 2 1/2 day retreats is the active involvement, as co-faculty, of parents who have lost a child.

UniCare Advance Care Planning
2005-2006: UniCare
Based on telephone interviews and focus groups with Massachusetts physicians CAE staff assembled a package of tools, strategies, and resources to support physicians’ involvement in advance care planning throughout the Commonwealth of Massachusetts. The project included a direct mail campaign with physicians who are primary providers for five or more members (65 years of age or older) of the Commonwealth Indemnity Plan.

Pediatric End-of-Life Care Curriculum for Social Workers
2003-2004: The Open Society Institute’s Project on Death in America
This project involved the integration of social work-informed pedagogy and content into an interdisciplinary curriculum being developed by the Initiative for Pediatric Palliative Care, for use in both interdisciplinary and uni-disciplinary settings with practitioners providing palliative care services to children and families. While several excellent educational projects in end-of-life care for social workers had been developed in recent years, there was an absence of educational initiatives addressing the complex challenges faced by social workers as members of interdisciplinary teams in pediatric hospice and palliative care settings.

Decisions Near the End of Life
1987-1994: The W.K. Kellogg Foundation
1995-1999: Self-funded through hospital fees
Working in partnership with The American Medical Association, The American Bar Association, and the Hospital Research & Educational Trust, an affiliate of the American Hospital Association, EDC and The Hastings Center developed Decisions Near the End of Life, a 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. More than 230 hospitals and nursing homes in 32 states have participated in this program. EDC staff directly trained more than 1000 physicians, nurses, social workers and pastoral counselors who, in turn, trained approximately 40,000 colleagues. Many institutions accomplished lasting changes in end-of-life policies and practices, the materials are still in use at many places, including for example Walter Reed Army Hospital, and the project spawned a statewide ethics consortium still active today.