The Center for Applied Ethics: Palliative/End-of-Life Care

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.

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.

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.

Development of Gems of Care (GOC) Project
2006-2008: Jason Program
Gems of Care was a national project dedicated to improving the continuity and coordination of health care and social services for children with life-threatening conditions and their families. It was initiated by The Jason Program, an innovative community-based interdisciplinary clinical and training program based in Maine, and in collaboration with Jewelers for Children (JFC), the industry charity for manufacturers, retail jewelers, trade associations, watch companies and those who provide professional services to the jewelry industry. The goal of Gems of Care was improved integration of services by facilitating networking and dissemination of expertise between hospitals and community-based organizations, both within identified geographical regions and throughout the country. The tools developed as part of this project are being integrated into IPPC’s participatory e-learning community.

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 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.

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.

Increasing Organ Donation by Enhancing End-of-Life Care
1999-2003: U.S. Department of Health and Human Services, HRSA, Office of Special Programs, Division of Transplantation
EDC collaborated with the New England Organ Bank and three tertiary care hospitals in New England (Dartmouth-Hitchcock Medical Center, Rhode Island Hospital and Boston Medical Center) 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 intervention included (1) establishment of an interdisciplinary Organ Donation Advisory Committee (ODAC), (2) development, implementation, and monitoring of a critical pathway which used clinical cues to ensure identification and referral of patients with severe neurological injury to the local OPO; and (3) establishment of a Family Support Team that was trained to facilitate communication, provide psychological support, and better coordinate care for families facing the death of a loved one. The project resulted in near-universal referral of all eligible donors to the organ procurement organization and to high levels of clinician and family satisfaction with the Family Support Teams which are still in place in 2 of the 3 hospitals.

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 www.edc.org/lastacts.

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.

Adoption of Cancer Pain Guidelines in Managed Care
1996-2001: The Agency for Health Care Policy & Research
Education Development Center, Inc., the Fallon Healthcare System, Massachusetts General Hospital, and Frontier Science and Technology Research Foundation conducted a group-randomized trial to evaluate a voluntary, two-tiered dissemination strategy designed to reduce pain among cancer patients by improving primary care nurses' and physicians' use of the AHRQ cancer pain guideline. Four treatment clinics received an intervention that 1) encouraged caregivers to adopt routine procedures for pain screening, assessment, follow-up, and documentation and 2) provided nurses and physicians with education to improve opioid knowledge and confidence in prescribing opioids. Four clinics served as control sites. Primary care physicians grew in their knowledge of opioids and prescribed more medications for pain relief for their cancer patients in pain.

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.

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.

Mayday PainLink
1995-1999: The Mayday Fund
2000-2001: Self-funded through hospital fees
CAE established an online virtual community of health professionals working in more than 60 hospitals and nursing homes. The goal was to use the Internet and other media to bridge the gap between knowledge of effective pain management procedures and their effective application in real-life clinical settings. Most pains -- acute post-operative pain, many types of chronic pain, the pain experienced by the terminally ill -- can be relieved. Although the science of pain management is well-established, few physicians, nurses, and other clinicians have been adequately trained in the necessary skills, and many healthcare institutions face barriers in ensuring that pain is an important priority.

Each participating institutions established an interdisciplinary team to close the gap between knowledge and practice. CAE staff helped the teams to use continuous quality improvement (CQI) processes to evaluate pain management in their settings and to develop an action plan specific to their institution's needs. To support such initiatives, CAE offered technical assistance that included a resource-rich website, e-mail discussion, online guests, the Pain Management Inventory (a clinician survey of knowledge, attitudes, institutional barriers, and pain management learning needs), topic-focused print resources, and expert professional consultation. The Mayday PainLink website is an archived website that is still accessible to the public. See http://www2.edc.org/PainLink/.

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.