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Appendix A: Data Sources and Methods
Pages 391-406

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From page 391...
... report Approaching Death: Improving Care at the End of Life and the 2003 report When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, public input obtained through a series of workshops and meetings, three commissioned papers, a public questionnaire soliciting experiences with end-of-life care, and written public comments on aspects of the study charge. The study was conducted over a 18-month period.
From page 392...
... First, a search of bibliographic databases, including MEDLINE, EMBASE, and SCOPUS, was conducted to obtain articles from peer-reviewed journals. The keywords used in searches included advance directives, aging, bereavement, caregivers, chaplains, chronic disease, clinical and supportive care, communication, community engagement, continuing medical education, cultural barriers, death and dying, decision making, demographic shifts, disparities, epidemiology, ethics, ethnic groups, financing, fiscal realities, graduate medical education, health care delivery, health care quality, hospice, nursing, nursing home care, pain management, palliative care, patients, payment systems, pediatrics, pharmacy, professional education, professional standards, psychosocial care, public health, public-private partnerships, racial and ethnic differences, religion, social work, spirituality, team-based care, technology, vulnerable populations, and workforce development.
From page 393...
... The meeting also featured representatives of community organizations focused on end-of-life care, as well as a detailed summary of state-specific programs and policies for individuals approaching death. The third meeting featured speakers who discussed clinical ethics, spiritual and religious needs of individuals near the end of life, and empirical and legal issues regarding advance directives.
From page 394...
... COMMISSIONED PAPERS The committee commissioned three papers from experts in subjectmatter areas relevant to the study charge. These papers were intended to provide greater analysis and in-depth information on selected topics of interest to the committee: • A paper written by Haiden Huskamp of Harvard Medical School and David Stevenson of the Vanderbilt University School of Medi cine provides a detailed analysis of financing and payment methods in end-of-life care, as well as possible reforms to federal eligibility and payment policies (see Appendix D)
From page 395...
... Senior Clinical Ethicist Center for Ethics, Washington Hospital Center William Benson Principal Health Benefits ABCs and International Association for Indigenous Aging continued
From page 396...
... Physician Joan Harrold, M.D. Medical Director & Vice President of Medical Services Hospice & Community Care Kristen Santiago, M.S.
From page 397...
... BREAK 3:25 p.m OVERVIEW OF 1997 IOM REPORT  APPROACHING DEATH: IMPROVING CARE AT THE END OF LIFE Christine K Cassel, M.D.
From page 398...
... Senior Strategic Policy Advisor Independent Living/Long-Term Care AARP Public Policy Institute Ms. Feinberg will provide an overview of policies that support family caregivers, including future policy needs at the end of life.
From page 399...
... Panelists: Alex Briscoe Director Alameda County Health Care Services Agency Marilyn Ababio Hospice Systems Coordinator Alameda County Health Services Agency Sandy Chen Stokes, R.N., M.S.N. Founder Chinese American Coalition for Compassionate Care Jean Yih Board Chair Chinese American Coalition for Compassionate Care   Barbara Beach, M.D.
From page 400...
... PUBLIC COMMENT Members of the public who register will have 3 minutes to comment on any topic related to the study charge. Marilyn Golden Senior Policy Analyst Disability Rights Education & Defense Fund Jeffrey Kaufhold, M.D.
From page 401...
... Physical Therapist and Clinical Instructor University of California, San Francisco Medical Center L Alberto Molina Assistant Director of Interpreter Services Stanford Hospital & Clinics Angelica Villagran VMI Coordinator Stanford Hospital & Clinics Johanna Parker Lead Interpreter for Education and Training Stanford Hospital & Clinics 3:00 p.m.  ADJOURN
From page 402...
... Meyerhoff Professor of Bioethics and Medicine Johns Hopkins Berman Institute of Bioethics  Sugarman will present an overview of end-of-life decision-making Dr. principles, including respect for patients' values, goals, choices, and dignity; advance care planning; surrogate decision making; the role of current best interests of the incompetent patient; conscientious objections by health care workers and institutions; justice; and allocation of limited resources.
From page 403...
... He will consider the value of health care professionals inquiring about those needs and concerns; the benefits (in terms of patient outcomes) of addressing those needs as part of high-quality palliative care; the importance of the conscience and integrity of physicians and health care workers in end-of-life care; and ethical dilemmas that arise in a diverse, pluralistic society when the health care professional holds strong religious beliefs that differ sharply from the religious beliefs of the patient.
From page 404...
... Does POLST lead to fewer days in the intensive care unit in the last week of life, CPR before death, etc.? Do states that have robust POLST programs have different levels of specific medical interventions in end-of-life care?
From page 405...
... Have there been cases involving POLST in the courts? What other legal approaches to advance care planning have states implemented, such as default priority for surrogates and oral appointment of health care proxies, and how have they worked in practice?


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