The Center for Applied Ethics: Research Ethics

Toward Optimal End-of-Life Care in the PICU
2005-2009: National Institutes of Health/National Institute of Nursing Research
The overall goal of this multi-site study is to gain insights into how dying and death are experienced in the pediatric intensive care setting and to advance research methods in pediatric palliative care. The study will take place in the PICUs of Nationwide Children’s Hospital of Columbus, the Children’s Hospital of Philadelphia, Lucile Packard Children’s Hospital of Stanford Medical Center, Vanderbilt University Children’s Hospital, Children’s Mercy Hospital of Kansas City, and the University of California, San Francisco Children’s Hospital. In addition, during the first phase of the project, Children’s Hospital Boston and Johns Hopkins Children’s Center are serving as sites for the reliability and validity testing of a new measure of the quality of dying and death in the PICU setting.

Initiative for Pediatric Palliative Care: Creating a Lasting Institutional Infrastructure
2006-2009: Aetna Foundation, Inc.
The Initiative for Pediatric Palliative Care (IPPC) has conducted research, provided technical assistance to facilitate quality improvements, and designed a 25-hour instructional curriculum and six-part award-winning video series. Four national partner organizations (the New York Academy of Medicine, the National Association of Children’s Hospitals and Related Institutions, the Society of Pediatric Nurses, and the Association of Medical School Pediatric Department Chairpersons) have reviewed the curriculum and provided program planning guidance. Seven leading children’s hospitals piloted the curriculum and undertook major quality improvement projects in pediatric palliative care. IPPC has been conducted 19 educational retreats for 2,000+ families and caregivers throughout the United States. Our goal is to equip hundreds of interdisciplinary leadership teams from pediatric hospice and palliative care programs with the knowledge, skills and attitudes they will need to be palliative care leaders and teachers in their home institutions and communities.

NIH Bioethics Science Curriculum Supplement for High School Biology
2006-2008: National Institutes of Health
The National Institutes of Health awarded CAE a grant to develop a Bioethics Curriculum Supplement for High School Biology. The overall purpose of this Supplement and teacher guide is to introduce students to bioethics as a field of inquiry, to introduce key ethics concepts (such as the principles of justice and truthtelling) and to enable students to develop ethical reasoning skills, so they are capable of moving beyond “gut reactions” to more nuanced arguments. These ethics concepts and skills will be the ones to which they will return in each of the six lessons developed, applying and practicing the concepts and skills across the curriculum.

VHA IntegratedEthics Initiative
2002-2005: Department of Veterans Affairs
CAE was chosen by the Veterans Administration’s National Center for Ethics in Health Care to develop IntegratedEthics, an innovative national education and organizational change initiative that provides VA facilities with tools to transform their traditional ethics committees into IntegratedEthics programs that better match their needs. The overall goal of the initiative was to use a systems change approach to integrate ethical analysis and oversight into every aspect of patient care. IntegratedEthics will be eventually become the standard for care throughout the VHA system, which includes 157 hospitals, 862 ambulatory and community-based clinics, 134 nursing homes, 42 residential rehabilitation treatment programs and 206 Vet Centers—the nation’s largest integrated health care delivery system. The IntegratedEthics initiative was launched in August 2005. Twenty-nine VA facilities were selected to participate in a yearlong Demonstration Group, each bringing a team of senior leaders to one of four national workshops where they were oriented to the IntegratedEthics approach and introduced to the program materials, which include video-based skill building courses, computer-based teaching modules on five ethics domains, and ongoing cyber support. Each team of change agents has been charged with implementing IntegratedEthics in their facility over the course of the next year, with technical assistance from the National Center and EDC.

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.

Innovations in End-of-Life Care
1998-2003: The Robert Wood Johnson Foundation
Innovations in End-of-Life Care was an international, peer-reviewed journal that hastened the rate of innovation by publishing examples of promising practices in palliative care drawn from across the globe. This award-winning website had 12,000 registered users and more than 9000 readers each month throughout the United States, Canada, Europe and Australia. Yearly retrospectives were published in a companion compendium, by Mary Ann Liebert Publishing Company and selected articles were reprinted regularly in the Journal of Palliative Medicine. The 28 issues of the archived online journal are still free and accessible; visit the Robert Wood Johnson Foundation.

Palliative Care in Germany and the United States
1999-2002: The Max Kade Foundation
The grant enabled two study teams, one based in Boston, the other in Munich, to compare and contrast German and American approaches to palliative care and to undertake collaborative research. The group met 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 occurred in Boston in Spring 2000, hosted by CAE. 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 empirical studies have begun, e.g. research on the measurement of quality of life in patients with endstage neurological disease. In addition, study team members are adapting EDC’s Decisions Near the End of Life program for Germany and Switzerland.

SACGT: A Public Consultation on Oversight of Genetic Tests
1999-2000: U.S. Department of Health and Human Services
At the behest of the U.S. Secretary of Health and Human Services under the Clinton Administration, CAE assisted the Secretary's Advisory Committee on Genetic Testing by stimulating and collecting public comments on the oversight of genetic tests – comments which informed federal policies regarding potential regulation of new genetic tests. A summary of public comments submitted via the project's website was used by the SACGT to prepare a report, Enhancing the Oversight of Genetic Tests that was submitted to the Surgeon General and Secretary of Health and Human Services.

The National Task Force for End-of-Life Care in Managed Care
1998-1999: Robert Wood Johnson Foundation
This project convened a blue ribbon task force 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 end-of-life care within managed care settings.