MCC End-of-Life Care
Resources

This page includes links to all the resources on end-of-life care contained within this site. We encourage you to use this information to help MCC member and partner organizations promote clinical cancer trials awareness and accomplish the MCC End-of-Life Care Goal for 2009-2015.

Data
Visit our Cancer Data Resources page for both Michigan-based and national cancer statistics.

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Educational Materials

  • The Michigan Physician Guide to End-of-Life Care
    www.michigan.gov/documents/mdch/EOL__COMPLETE_317766_7.pdf (2010 update; available as an Adobe Acrobat PDF file)*
    This booklet is designed to help physicians, patients and families deal more effectively with dying and death. Chapters include: "Communication at the End of Life;" "Advance Care Planning;" "Pain and Other Physical Symptoms;" "Palliative Care;" "Withdrawing or Withholding Specific Treatments;" "Hospice: A Team Approach to Care;" and "Emotions, Spirituality and the Tasks of Dying."

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  • Completing a Life: A Resource for Taking Charge, Finding Comfort, and Reaching Closure (Michigan State University)
    http://commtechlab.msu.edu/sites/completingalife/
    An interactive CD-ROM and Web site inviting patients and families to learn about the practical, emotional, spiritual, and medical issues faced by those dealing with advanced illness. Completing a Life offers more than one hundred separate topic pages linked by navigation tools. The material contained in Completing a Life covers a wide range of concerns, addressing such areas as getting good pain relief, talking with health professionals, family communication, writing advance directives, and finding answers to spiritual questions.

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  • Pain Control: Support for People with Cancer (National Cancer Institute; October 2010)
    English version: www.cancer.gov/cancertopics/paincontrol
    Spanish version: www.cancer.gov/espanol/cancer/control-dolor
    This 44-page booklet discusses pain control medicines and other methods to help manage pain, addresses the physical and emotional effects of pain, and includes questions to ask your health care team, a sample pain control record, a list of resources, and a glossary of terms. Printed copies of the booklet may be downloaded as an Adobe Acrobat PDF file or ordered free of charge from the National Cancer Institute Cancer Information Service by visiting https://pubs.cancer.gov/ncipl/detail.aspx?prodid=P258.

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  • "Finding Our Way: Living with Dying in America"
    http://webpages.scu.edu/ftp/fow/
    "Finding Our Way: Living with Dying in America," a groundbreaking series of 15 articles, premiered in the fall of 2001, appearing in more than 160 newspapers and reaching millions of Americans. The series, distributed by Knight-Ridder Tribune, served as a short course on death and dying and covered a variety of topics. This hybrid Web-CD-ROM course, offered by Santa Clara University, includes the 15 Finding Our Way articles. In addition, the Finding Our Way authors have contributed discussion questions, additional resources, and insights that are important components of the course. The discussion questions can be used for small group discussion or for individual reflection, and the course can be taken at any time and at any pace. Upon successful completion of the course and the final examination, an electronic certificate of completion will be issued. Continuing education units are not available for the course.

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  • EPEC-O (Education in Palliative and End-of-Life Care for Oncology) Educational Tool
    www.cancer.gov/cancertopics/cancerlibrary/epeco
    The American Society of Clinical Oncology has partnered with the National Cancer Institute, the U.S. Department of Health & Human Services, the National Institutes of Health, and the Hospice & Palliative Nurses Association to EPEC-O (Education in Palliative and End-of-Life Care for Oncology), a comprehensive multimedia curriculum for health professionals caring for persons with cancer. The curriculum is available as either an online self-study section containing three plenary sessions and 15 content modules, or a CD-ROM/DVD combination set that can be ordered. The Hospice and Palliative Nurses Association (HPNA)  provides a maximum of 31 nursing contact hours for either the EPEC-O CD-ROM or the EPEC-O self-study educational activities.  Culturally specific versions adapted for use by health providers serving the American Indian and Alaska Native populations also are available.

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  • Medscape Oncology Education for Medical Professionals: "The Last Hours of Living: Practical Advice for Clinicians"
    www.medscape.org/viewarticle/716874

    This module is intended for physicians, physician assistants, nurse practitioners, nurses, students, and other clinicians who care for patients during their last hours of life. The goal is to provide a comprehensive overview of the last hours of life, focusing on the assessment and management of common physical symptoms and syndromes near the time of death. Upon completion of this module, participants will be able to: assist families to prepare for the last hours of life; assess and manage the pathophysiologic changes of dying; and
    pronounce a death and notify the family.

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Guidelines

  • National Consensus Project for Quality Palliative Care
    www.nationalconsensusproject.org/
    The project's purpose is to promote the implementation of clinical practice guidelines that ensure care of consistent and high quality and that guide the development and structure of new and existing palliative care services.

    • National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, Second Edition
      www.nationalconsensusproject.org/guideline.pdf
      (available as an Adobe Acrobat PDF file)*
      These guidelines provide a blueprint for the essential foundation as palliative care programs are growing in response to patient need. They provide for assessment and treatment of pain and other symptoms, help with patient-centered communications and decision-making, and, coordination of care across the continuum of care settings.

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Reports

  • National Hospice and Palliative Care Organization — "NHPCO Facts and Figures: Hospice Care in the U.S." (November 2013) (available as an Adobe Acrobat PDF file)*
    This annual report provides an overview of trends in the growth, delivery and quality of hospice care across the country. It provides specific information on: hospice patient characteristics (e.g., gender, age, ethnicity, race, primary diagnosis, and length of service); hospice provider characteristics (e.g., total patients served, organizational type, size, and tax status); location and level of care; and role of paid and volunteer staff.

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Papers

  • Cassel JB, et al. "Hospital Mortality Rates: How is Palliative Care Taken into Account?" Journal of Pain and Symptom Management. 40(6):914-925; December 2010.
    available online at www.jpsmjournal.com/article/S0885-3924(10)00654-8/abstract

    When analyzing the methods of four entities that rate hospitals (Centers for Medicare & Medicaid Services "Hospital Compare," U.S. News & World Report "Best Hospitals," Thomson-Reuters "100 Top Hospitals," and HealthGrades), the authors found considerable differences in the way the entities recognized and handled hospice and palliative care for the calculation of hospital mortality data. The authors cite the need for palliative care and hospice leaders to educate themselves and hospital administrators regarding how mortality rates are calculated, where palliative care and hospice care fit in, and how this affects the hospital.

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Web Sites of Interest — Michigan Government Resources

  • Michigan Department of Community Health (MDCH) — End-of-Life Resources
    www.michigan.gov/mdch/0,1607,7-132-2940_3183_4895---,00.html
    This site includes information and links for Michigan Circle of Life, which focuses on preserving the dignity and the rights of people who have a terminal or chronic illness, and the Michigan Commission on End-of-Life Care and its final reports and recommendations.

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  • MDCH — Pain and Symptom Management
    www.michigan.gov/painmanagement
    This Web site, a recommendation of the Governor's Advisory Committee on Pain and Symptom Management, was developed to increase the general public's and health professional's awareness of pain and symptom management. It provides information in the form of related Michigan statutes, professional papers, articles, and links to numerous organizations with expertise in the area of pain and symptom management.

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  • Michigan Office of Services to the Aging
    www.michigan.gov/miseniors
    The Michigan Office of Services to the Aging provide leadership, innovation, advocacy, and supportive services on behalf of Michigan's 1.6 million older adults and their caregivers.  Its mission is to promote independence and enhance the dignity of Michigan's older adults and their families.

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Web Sites of Interest — Organizations and Private Sector

  • American Academy of Hospice and Palliative Medicine (AAHPM)
    www.aahpm.org
    AAHPM is an organization of physicians and other medical professionals dedicated to excellence in palliative medicine and the prevention and relief of suffering among patients and families by providing education and clinical practice standards; fostering research; facilitating personal and professional development of its members; and public policy advocacy.

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  • AAHPM — Journal of Palliative Medicine
    www.liebertpub.com/publication.aspx?pub_id=41
    This bimonthly interdisciplinary journal, which is the official journal of the American Academy of Hospice and Palliative Medicine, reports on the clinical, educational, legal, and ethical aspects of care for seriously ill and dying patients. It includes coverage of the latest developments in drug and non-drug treatments for patients with life-threatening diseases including cancer; AIDS; cardiac disease; and pulmonary, neurologic, and respiratory conditions.

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  • Alliance of State Pain Initiatives
    http://aspi.wisc.edu
    The Alliance of State Pain Initiatives is a national organization dedicated to promoting cancer pain relief nationwide by supporting the efforts of state and regional pain initiatives. Pain initiatives work to disseminate accurate pain management information, educate healthcare professionals, raise public and patient awareness of the cancer pain problem, promote institutional change, and advocate for the removal of regulatory and legislative barriers to pain management. Check out the Resource Center for professional, patient and public education materials to order, including information in written, video, and CD ROM formats.

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  • American Association for Cancer Education (AACE)
    www.aaceonline.com
    The AACE fosters cancer education by individuals throughout the world who, either due to professional obligations or personal interest, are involved in cancer education. The association provides a forum for health-related professionals concerned with the study and improvement of cancer education at the undergraduate, graduate, continuing professional, and paraprofessional levels. Active members include physicians, dentists, nurses, health educators, social workers, occupational therapists, and other professionals interested in cancer education. Cancer education efforts are related to prevention, early detection, treatment, and rehabilitation.

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  • Americans for Better Care of the Dying
    www.abcd-caring.org
    Americans for Better Care of the Dying (ABCD) aims to improve end-of-life care by learning which social and political changes will lead to enduring, efficient, and effective programs. Be sure to check out the Resources section for a multitude of resources on issues including: advance care planning; end-of-life, hospice and palliative care; healthcare quality improvement; pain and symptoms; and much more.

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  • American Medical Directors Association
    www.amda.com
    The American Medical Directors Association — the professional association of medical directors, attending physicians, and others practicing in the long-term-care continuum — is dedicated to excellence in patient care and provides education, advocacy, information, and professional development to promote the delivery of quality long-term-care medicine.

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  • American Pain Foundation
    www.painfoundation.org
    The American Pain Foundation is an independent nonprofit 501(c)3 organization serving people with pain through information, advocacy, and support. Its mission is to improve the quality of life of people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.

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  • American Pain Society
    www.ampainsoc.org
    The American Pain Society is a multidisciplinary community that brings together a diverse group of scientists, clinicians, and other professionals to increase the knowledge of pain and transform public policy and clinical practice to reduce pain-related suffering.

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  • C-Change
    www.c-changetogether.org/
    C-Change is comprised of the nation's key cancer leaders from government, business and nonprofit sectors. These cancer leaders share the vision of a future where cancer is prevented, detected early, and cured or managed successfully as a chronic illness. The mission of C-Change is to leverage the combined expertise and resources of its members to eliminate cancer as a (major) public health problem at the earliest possible time.

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  • Cancer-Pain.org
    www.cancer-pain.org
    Provide cancer patients with the education and support they need to obtain effective relief from pain.

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  • Caring Connections
    www.caringinfo.org
    The National Hospice and Palliative Care Organization and National Hospice Foundation have created this consumer-focused Web site, which provides a wide range of free materials about end-of-life care.

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  • Dartmouth-Hitchcock Medical Center — Center for Shared Decision Making
    www.dhmc.org/webpage.cfm?site_id=2&org_id=108&gsec_id=0&sec_id=0&item_id=2486
    Shared decision making is the collaboration between patients and caregivers to come to an agreement about a healthcare decision. It is especially useful when there is no clear "best" treatment option. The caregiver offers the patient information that will help him or her: understand the likely outcomes of various options; think about what is personally important about the risks and benefits of each option; and participate in decisions about medical care.  The Center for Shared Decision Making is the first patient-focused facility of its kind in the United States. Its website offers a Decision Aid Library, a Health Care Decision Guide, and other resources.

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  • End-of-Life Nursing Education Consortium
    www.aacn.nche.edu/ELNEC
    The End-of-Life Nursing Education Consortium (ELNEC) project, which is funded by a major grant from The Robert Wood Johnson Foundation, is a comprehensive, national education program to improve end-of-life care by nurses. Primary project goals are to develop a core of expert nursing educators and to coordinate national nursing education efforts in end-of-life care.

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  • End-of-Life/Palliative Education Resource Center (EPERC)
    www.eperc.mcw.edu
    This site is intended to support individuals involved in the design, implementation, and/or evaluation of end-of-life/palliative education for physicians, nurses, and other health care professionals. Among the resources offered are: Fast Facts; educational and training materials; suggested articles; news; blogs; and links to clinical and educational Web resource centers.

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  • Foundation for Informed Decision Making
    www.informedmedicaldecisions.org
    The Foundation for Informed Medical Decision Making is a non-profit organization leading changes to ensure that health care decisions are made with the active participation of fully informed patients. It is dedicated to advancing research, policy, and clinical models that ensure that patients understand their choices and have the information they need to make sound decisions about their health and well-being. The foundation's mission is to inform and amplify the patient’s voice in health care decisions by focusing its efforts on: developing high-quality decision aids; funding research to advance learning; supporting model demonstration sites; and advancing its vision through outreach and advocacy.

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  • Geriatric Pain
    www.geriatricpain.org/Pages/home.aspx
    The purpose of this Web resource is to identify and share best practice tools and resources that support recommendations for good pain assessment and management in older adults. The Web site is organized into categories of emphasis with tools selected to assist nurses with responsibility for pain care in the nursing home.

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  • Growth House
    www.growthhouse.org
    The Growth House search engine offers access to the Internet's most comprehensive collection of reviewed resources for end-of-life care. Find resources for hospice and home care, palliative care, pain management and death with dignity.

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  • Hospice & Palliative Care Association of Michigan (HPCAM)
    www.mihospice.org
    HPCAM (formerly known as the Michigan Hospice and Palliative Care Organization) serves as an advocate for terminally ill people and their families by promoting access to quality hospice and palliative care throughout Michigan. The HPCAM Web site contains information on hospice care that will be useful for those personally facing a terminal illness and their loved ones and also includes information of interest to providers involved in hospice care.

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  • Hospice and Palliative Nurses Association
    www.hpna.org
    Established in 1986, the Hospice and Palliative Nurses Association is the nation's largest and oldest professional nursing organization dedicated to promoting excellence in pain management and end-of-life care.

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  • Michigan Cancer Pain Initiative
    www.mipain.org
    This site, which was made possible through funding from the Lance Armstrong Foundation and the Alliance of State Pain Initiatives, offers resources for those suffering from pain, as well as for health care providers and policymakers. While it does not provide individualized health care advice, it equips patients and families to ask the right questions and advocate for relief of their pain more effectively. The Web site provides links to numerous resources, including those dealing with various palliative care options, patients’ rights, and complementary and alternative medicine. It also offers valuable information for all health care providers. The MCPI is an association of health professionals, patient advocates, and representatives of clergy, government, and higher education dedicated to addressing the problem of unrelieved pain from cancer.

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  • National Hospice and Palliative Care Organization
    www.nhpco.org

    For facts and figures on hospice care in America: Choose "Stats/Research/Resources" from the listing on the left side of the home page, then follow the links to "Facts and Figures on Hospice Care in America." You will find data regarding hospice programs, patients served, lengths of stay, and more.

    For general hospice care information: Choose "Hospice Care Information" from the listing on the left side of the home page, and then follow the links on the menu. Topics include: What is Hospice?; How to Select a Hospice Program; Communicating Your End of Life Wishes; and The Hospice Medicare Benefit. See the Consumer Brochures section for brochures you can read online and then order through the toll-free number provided.

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  • Public Broadcasting Service (PBS) — FRONTLINE: "Facing Death"
    www.pbs.org/wgbh/pages/frontline/facing-death
    In "Facing Death," which first aired in November 2010, FRONTLINE gained extraordinary access to The Mount Sinai Medical Center, one of New York's biggest hospitals, to take a closer measure of today's complicated end-of-life decisions. In this intimate, groundbreaking film, doctors, patients and families speak with remarkable candor about the increasingly difficult choices people are making at the end of life: when to remove a breathing tube in the ICU; when to continue treatment for patients with aggressive blood cancers; when to perform a surgery; and when to call for hospice. This site offers the opportunity to watch the full film; read interviews with doctors in the film; consider the big issues and join a discussion board; and learn from companion educational guides, readings and other links, facts and figures, and other resources.

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  • PBS — FRONTLINE: "Living Old" — Where to Go for Help & Advice
    www.pbs.org/wgbh/pages/frontline/livingold/etc/where.html
    A companion portal to "Living Old," which first aired on PBS in November 2006, this page includes links and resources covering: advice and services for caregivers; end-of-life issues; long-term care planning and financing; and Alzheimer's. It also includes a profile on Kansas City, MO, which has taken a leadership role in collating resources and partnership to help the elderly and their caregivers, as well as other resources for the elderly and those who care for them.

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  • PBS — "On Our Own Terms"
    www.pbs.org/wnet/onourownterms/
    This site is a companion to the four-part PBS series by the same name that first aired in September 2000. The site is divided into four main sections: end-of-life tools, care options, final days, and therapy and support. Each section includes a wealth of resources, including video segments from the PBS series. The site includes community action campaign materials designed to stimulate dialogue and community action on the physical, emotional, psychological, and spiritual issues surrounding end-of-life care. The resources section provides links to end-of-life related sites and many other resource materials.

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  • University of Wisconsin Pain & Policy Studies Group
    www.painpolicy.wisc.edu/
    The Pain & Policy Studies Group's mission is to "balance" international, national and state policies to ensure adequate availability of pain medications for patient care while minimizing diversion and abuse, and to support a global communications program to improve access to information about pain relief, palliative care, and policy. Its Web site has information and links to U.S. and international resources.

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Promoting End-of-Life Care Awareness Month
Resources to help you promote End-of-Life Care Awareness Month (observed in November) are available through the Michigan Cancer Consortium Monthly Theme Calendar.



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last updated: 02/14/2014