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.
Information Resource Guide to End of Life Care (Michigan Department of Community Health) www.michigan.gov/documents/End_of_Life_Resource_Guide_51281_7.pdf(available as an Adobe Acrobat PDF file)*
This publication provides a variety of resources that will be of help to people who have a terminal illness and their family members and other caregivers.
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)*
In a collaborative effort, the Michigan Department of Community Health, the Michigan State Medical Society, the Michigan Osteopathic Association, the Michigan State Medical Society Foundation, Blue Cross Blue Shield of Michigan, and the American Physicians Assurance Corporation created this 50-page booklet 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."
Caring Choices: A Guide to End-of-Life Decisions and Care (Michigan Hospice and Palliative Care Organization) Published in 2002 by the Michigan Partnership for the Advancement of End-of-Life Care, this guide is designed to help people to think about what they want in end-of-life care, ask for what they need, and understand some of the steps they need to take to make sure they receive the care they desire. It is available in English, Spanish and Arabic versions. To download a copy of the booklet, please visit www.mihospice.org/site/493/default.aspx. To order it, contact the Michigan Hospice and Palliative Care Organization at 800-536-6300 (e-mail: mihospice@mihospice.org).
Consumer Guide to Hospice Care (Michigan Hospice and Palliative Care Organization) www.mihospice.org/Portals/_Rainbow/Documents/Hospice%2066479_WEB.pdf(available as an Adobe Acrobat PDF file)*
Hard copies of the guide are available for $35 per 100 copies; order online using the Adobe Acrobat PDF form* located at www.mihospice.org/Portals/_Rainbow/Documents/0135a73b-27a7-4faa-a6f4-a266bd9bb0c4.pdf. For quantities of less than 100, call MHPCO at 517-886-6667. Funding for printing of this guide was provided by the Michigan Department of Community Health and administered by the Michigan Public Health Institute in support of the MCC priority objective on end-of-life care.
Hospice Care: A Physician's Guide (Michigan Hospice and Palliative Care Organization) www.mihospice.org/Portals/_Rainbo/Documents/f1d81b2d-65b4-4ad7-b232-3e0f66afdbb2.pdf(available as an Adobe Acrobat PDF file)*
Hard copies of the guide are available for $50 per 100 copies; order online using the Microsoft Word document at www.mihospice.org/Portals/_Rainbow/Documents/Physician's Guides ORDER FORM.doc. For quantities of less than 100, call MHPCO at 517-886-6667. Funding for printing of this guide was provided by the Michigan Department of Community Health and administered by the Michigan Public Health Institute in support of the MCC priority objective on end-of-life care, and the Maggie Allesee Center for Quality of Life.
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 easy-to-use 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. Completing a Life was created at Michigan State University by the Communication Technology Laboratory and the Palliative Care Education & Research Program. It was supported by Michigan State University Cancer Center and Office of Libraries, Computing and Technology, the Henry Ford Health System, Robert Wood Johnson Foundation and the Michigan Department of Community Health.
Pain Control: Support for People with Cancer (National Cancer Institute; January 2008) www.cancer.gov/cancertopics/paincontrol
This resource for cancer patients addresses pain control medicines and methods, as well as the physical and emotional effects of pain. Printed copies of the booklet, which are packaged with a DVD that features a 12-minute overview of the content, may be ordered free of charge from the National Cancer Institute Cancer Information Service by visiting https://cissecure.nci.nih.gov/ncipubs/details.asp?pid=235 or calling 800-4-CANCER (toll free).
Completing a Life: A Resource for Taking Charge, Finding Comfort, and Reaching Closure 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 easy-to-use 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. Completing a Life was created at Michigan State University by the Communication Technology Laboratory and the Palliative Care Education & Research Program. It was supported by Michigan State University Cancer Center and Office of Libraries, Computing and Technology, the Henry Ford Health System, Robert Wood Johnson Foundation and the Michigan Department of Community Health.
Advance Directives: Planning for Medical Care in the Event of Loss of Decision-Making Ability (State Bar of Michigan) www.michbar.org/elderlaw/adpamphlet.cfm
This online version of the Advance Directives booklet from the Michigan State Long Term Care Ombudsman Program includes general information about advance directives, as well as specific information and Adobe Acrobat PDF versions of forms for durable powers of attorney for health care, living wills, do-not-resuscitate declarations, and declarations of anatomical gifts.
"Finding Our Way: Living with Dying in America" www.findingourway.net
A groundbreaking series of 15 articles, "Finding Our Way: Living with Dying in America," premiered in the fall of 2001 in newspapers across the country.
The series, distributed by Knight-Ridder Tribune, serves as a short course on death and dying and covers a variety of topics related to the subject. The practical advice, resources, and personal stories in "Finding Our Way" can teach how to approach these most significant life events with the same kind of planning and emotional preparedness people strive for in the rest of their lives.
American Society of Clinical Oncology — EPEC-O Educational Tool www.asco.org/epecocd
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 develop a continuing education tool in palliative and end-of-life care for oncologists and palliative care nurses. The CD- and DVD-based course, "Education in Palliative and End-Of-Life Care for Oncology" (EPEC-O), may be ordered free of charge by visiting www.asco.org/epecocd.
MCC members and partners are encouraged to forward this information to appropriate colleagues who are working on pain and symptom management, palliative care, and end-of-life issues. They also are encouraged to conduct in-service presentations and/or include a session at their annual meeting on palliative and end-of-life care. The "Materials for Trainers" section includes all of the necessary materials, PowerPoint slides, handouts, etc. The curriculum is divided into three plenary sessions and 15 content modules on the CD. On the DVD, there are video vignettes for some sessions. The only thing left to do is to choose a module or session, print out your materials, and invite a presenter.
For more information on the EPEC-O CD and DVD materials, contact CME Program Coordinator Jennifer Taylor at aylorjd@asco.org.
Medscape CME/CE Activity for Medical Professionals: "End-of-Life Care in the Setting of Cancer: Withdrawing Nutrition and Hydration"(Note: This course may be taken at any time, but it will not be valid for CME/CE credit after March 24, 2011.) http://cme.medscape.com/viewarticle/718781
This educational activity discusses approaches to determining and implementing treatment preferences in regard to the withholding or withdrawing of interventions. First, general principles and approaches are covered. Next, specific issues of artificial nutrition and hydration are covered in more detail. These issues frequently present a challenge in routine practice, and they also provide an example of how to discuss withholding or withdrawing treatments in general. Upon completion of this activity, participants will be able to:
discuss the principles for withholding or withdrawing therapy at the end of life;
describe the evidence base for artificial nutrition and hydration;
use a seven-step approach to discuss the withholding or withdrawing of artificial nutrition or hydration;
assist families and professionals with their need to give care; and
discuss hospice care with patients and caregivers.
Physicians who complete the course will be eligible for a maximum of 1.5 AMA PRA Category 1 Credit(s); nurses will be eligible for 1.5 nursing contact hours; and pharmacists will be eligible for 1.5 ACPE continuing education credits (0.15 CEUs). All other healthcare professionals completing continuing education credit for this activity will be issued a certificate of participation. Physicians should only claim credit commensurate with the extent of their participation in the activity.
Medscape CME/CE Activity for Medical Professionals: "The Last Hours of Living: Practical Advice for Clinicians"(Note: This course may be taken at any time, but it will not be valid for CME/CE credit after Feb. 12, 2012.)
http://cme.medscape.com/viewarticle/716874
This activity 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 of this activity 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 activity, participants will be able to:
assist families to prepare for the last hours of life;
assess and manage the pathophysiologic changes of dying; and
Medscape CME/CE Activity for Medical Professionals: "Pain Numeric Rating Scale May Be Only Moderately Accurate for Pain Screening" (Note: This course may be taken at any time, but it is no longer valid for CME/CE credit.) www.medscape.com/viewarticle/563080
Medscape CME/CE Activity for Medical Professionals: "Principles of Effective Pain Management at the End of Life" (Note: This course may be taken at any time, but it is no longer valid for CME/CE credit.) www.medscape.com/viewprogram/6079
This activity is intended for physicians, advanced practice and registered nurses, pharmacists, physician assistants, social workers, and other healthcare professionals who care for patients with far-advanced illness. The goal of this activity is to provide readers with a current and comprehensive overview of pain management at the end of life, offering guidance and detailed resources to practicing clinicians. Upon completion of this activity, participants will be able to:
describe the prevalence and significance of pain at the end of life;
identify techniques to assess pain in patients, including those unable to provide verbal reports;
list differential features of nociceptive and neuropathic pain states;
describe effective non-pharmacological means to relieve pain; and
recognize the therapeutic benefits and potential adverse effects associated with opioid and non-opioid pharmacotherapy for acute and chronic pain states at end of life.
National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, Second Edition www.nationalconsensusproject.org/guideline.pdf(available as an Adobe Acrobat PDF file)*
The Clinical Practice Guidelines for Quality Palliative Care, Second Edition, provides 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. The National Consensus Guidelines represent consensus achieved among nationally recognized experts on voluntary, evidence-based guidelines to ensure quality and consistency of care. They describe core precepts and structures of clinical palliative care programs presented in eight dedicated sections (Structure and Processes of Care; Physical Aspects of Care; Psychological and Psychiatric Aspects of Care; Social Aspects of Care; Spiritual, Religious and Existential Aspects of Care; Cultural Aspects of Care; Care of the Imminently Dying Patient; and Ethical and Legal Aspects of Care).
Michigan Commission on End-of-Life Care Report to the Governor, August 2001(Michigan Commission on End-of-Life Care) (available as an Adobe Acrobat PDF file)*
This report includes the Commission's recommended model state and institutional policies for end-of-life care, as well as the results of the Commission's survey on the availability and cost of public and private insurance coverage for hospice services, pain management, and palliative care.
End of Life in Michigan: Needs Assessment Report (Michigan Cancer Consortium; April 2005)
This report presents the findings of an assessment of end-of-life needs and services in Michigan. The impetus for the project was two-fold. First, public health consultants in the Michigan Department of Community Health Cancer Prevention and Control Section recognized end of life as a legitimate state public health issue, having participated with a variety of partners in a number of efforts to advance end-of-life care in Michigan. They shared the common concern about the impact of unstable funding sources on program sustainability. Second, research scientists at the Centers for Disease Control and Prevention validated end of life as a national public health issue (Rao, Anderson, & Smith, 2002).
Special Note: This MCC project is supported by the Michigan Department of Community Health and Michigan Public Health Institute with funding from the Centers for Disease Control and Prevention. Reproduction of the report in its entirety is permitted. If a portion of the report is used or any of the content is altered, all logos and references must be removed.
Achieving Balance in State Pain Policy: A Progress Report Card (University of Wisconsin Pain & Policy Studies Group; 2007) www.painpolicy.wisc.edu/Achieving_Balance/PRC2007.pdf(available as an Adobe Acrobat PDF file)*
Improving state policy is a necessary complement to the many ongoing state-level initiatives designed to educate healthcare professionals about the appropriate use of pain medications and to inform the general public about the availability of pain treatment options. Most importantly, improving state policy will remove barriers and enhance appropriate access to pain medications for people who experience severe cancer pain during the course of their illness and beyond. This report, which is in its second year, evaluates state-level pain management policies across the country. It was prepared by the University of Wisconsin Pain & Policy Studies Group (PPSG) and jointly funded by the American Cancer Society, the Lance Armstrong Foundation, and Susan G. Komen for the Cure. The 2007 report card shows that California and Wisconsin had the greatest grade improvement. Other states whose grades improved from last year were Arizona, Colorado, Connecticut, Kansas, Massachusetts, and New Hampshire. In addition, Kansas and Wisconsin now join Michigan and Virginia as having the most balanced pain policies in the nation.
"NHPCO Facts and Figures: Hospice Care in America" (National Hospice and Palliative Care Organization, 2009) (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.
Quality of End-of-Life Cancer Care for Medicare Beneficiaries: Regional and Hospital-Specific Analyses (Dartmouth Atlas Project, The Dartmouth Institute
for Health Policy and Clinical Practice; Nov. 16, 2010) www.dartmouthatlas.org/downloads/reports/Cancer_report_11_16_10.pdf(available as an Adobe Acrobat PDF file)*
Whether Medicare patients with advanced cancer will die while receiving
hospice care or in the hospital varies markedly depending on where they
live and receive care, according to the Dartmouth Atlas Project's
first-ever report on cancer care at the end of life. The report
demonstrates no consistent pattern of care or evidence that treatment
patterns follow patient preferences, even among the nation's leading
academic medical centers. Data tables from the report are available for download at www.dartmouthatlas.org/downloads/tables/DAP_cancer_tables_11_16_10.zip.
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.
Michigan 2006 Palliative Care Census Project (December 2006)
This project was conducted in support of the End-of-Life Care Strategic Plan developed by the Michigan Cancer Consortium, specifically the objective to increase access to palliative services throughout Michigan. Its purpose was to assess the availability and scope of palliative care services in Michigan hospitals, given the need to prevent and reduce avoidable suffering during the last phase of life for persons with cancer and other advanced chronic illness.
Note: The following project materials are available as Adobe Acrobat PDF files*:
Michigan 2007 Quick Palliative Care Survey Results (October 2007)
This project gathered information from hospital-based palliative care teams regarding: 1) barriers to optimal palliative care, and 2) sources of referral. Twenty of the 24 active programs that responded to the Michigan 2006 Palliative Care Census responded to a two-item follow-up survey they were sent. Results showed that barriers to optimal palliative care are commonly experienced by the majority of programs regardless of size of facility, tenure of program, number of patients served, or composition of the palliative care team. Physician resistance to palliative services and patient/family lack of awareness of prognosis were the top two barriers reported in most settings.
Presentations
The following presentations detailing the accomplishments, ongoing efforts, and future work surrounding this priority were prepared for Michigan Cancer Consortium use and were presented to the MCC Board of Directors during the Board's June 15, 2005 meeting. (Please Note: Reproduction of these presentations in their entirety is permitted. If a portion of any presentation is used or any of slides are altered, all logos and references must be removed.)
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.
MDCH — Health Promotions Clearinghouse www.hpclearinghouse.org
The Circle of Life section of the MDCH Health Promotions Clearinghouse offers end-of-life care resource materials, including: the Michigan Hospice Directory; the Easing Cancer Pain brochure; the Guide to Hospice Care brochure; and the Completing a Life CD-ROM. Order these materials online using the links provided or call the Clearinghouse toll-free at 877-224-2727.
MDCH — Michigan Commission on End of Life Care www.michigan.gov/mdch/0,1607,7-132-2940_3183_4895-14145--,00.html
Read the Report to the Governor July 2002, which is the final report presented by the Michigan Commission on End of Life Care. See the August 2001 Report to the Governor, which includes the Commission's recommended model state and institutional policies for end-of-life care. It also includes the results of the Commission's survey on the availability and cost of public and private insurance coverage for hospice services, pain management, and palliative care.
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. The Web site also includes information on the Governor's Advisory Committee on Pain and Symptom Management. The committee, reconvened in 2006, was originally a subcommittee of the Michigan Commission on End-of-Life Care. Its charge is to deal with issues pertaining to pain and symptom management, particularly in regard to public policy, public education, and professional education.
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.
Institute of Medicine www.nap.edu/catalog/10147.html?onpi_topnew_061901
This site offers the June 2001 Institute of Medicine report titled Improving Palliative Care for Cancer: Summary and Recommendations. Read about the National Cancer Policy Board's examination of the barriers and challenges to palliative care for cancer patients.
Medicare Payment Advisory Commission (MedPAC) www.medpac.gov
Read the May 2002 Report to the Congress: Medicare Beneficiaries' Access to Hospice. The report addresses beneficiaries' access to, and use of, the hospice benefit, including delays in time (relative to death) of entry into hospice programs and urban and rural differences in beneficiaries' use of hospice. MedPAC is an independent federal body that advises the U.S. Congress on issues affecting the Medicare program.
National Cancer Institute — Pain Control: Support for People with Cancer www.cancer.gov/cancertopics/paincontrol
This online version of the Institute's booklet is designed to help cancer patients work with their doctors, nurses, and others to find the best way to control their pain. It discusses the causes of pain, various pain medicines, how to talk with your doctor, and other topics.
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.
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.
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.
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.
American Cancer Society www.cancer.org
The American Cancer Society is dedicated to eliminating cancer as a major health problem by saving lives, diminishing suffering, and preventing cancer through research, education, advocacy, and service. Founded in 1913 and with national headquarters in Atlanta, the Society has 14 regional divisions and local offices in 3,400 communities, involving millions of volunteers across the United States.
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.
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.
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.
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.
American Society of Clinical Oncology — EPEC-O Educational Tool www.asco.org/epecocd
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 develop a continuing education tool in palliative and end-of-life care for oncologists and palliative care nurses. The CD- and DVD-based course, "Education in Palliative and End-Of-Life Care for Oncology" (EPEC-O), may be ordered free of charge by visiting www.asco.org/epecocd.
MCC members and partners are encouraged to forward this information to appropriate colleagues who are working on pain and symptom management, palliative care, and end-of-life issues. They also are encouraged to conduct in-service presentations and/or include a session at their annual meeting on palliative and end-of-life care. The "Materials for Trainers" section includes all of the necessary materials, PowerPoint slides, handouts, etc. The curriculum is divided into three plenary sessions and 15 content modules on the CD. On the DVD, there are video vignettes for some sessions. The only thing left to do is to choose a module or session, print out your materials, and invite a presenter.
For more information on the EPEC-O CD and DVD materials, contact CME Program Coordinator Jennifer Taylor at aylorjd@asco.org.
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.
Caring Connections http://www.nhpco.org/i4a/pages/Index.cfm?pageID=3254
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. Topics include: hospice Information; palliative care; advance care planning, advance directives, and living wills; caregiving; pain; grief; financial planning; and issues relating to the workplace.
Center for Practical Bioethics www.practicalbioethics.org/index.aspx
The Center for Practical Bioethics is a nonprofit, free-standing and independent organization nationally recognized for its work in practical bioethics. Since 1984, the center has helped patients and their families, healthcare professionals, policymakers, and corporate leaders grapple with ethically complex issues in medicine and research.
Center to Advance Palliative Care (CAPC) www.capcmssm.org
CAPC is a resource to hospitals and health systems interested in developing palliative care programs. CAPC is a nationwide initiative supported by The Robert Wood Johnson Foundation, with direction and technical assistance provided by Mount Sinai School of Medicine. See the Publications section for resources available to read and order online. The Resources section has educational resources, government resources, journals, speakers and consultants, and more. Also see the Featured Resources section for slide presentations.
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.
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.
End-of-Life/Palliative Education Resource Center www.eperc.mcw.edu
The End-of-Life/Palliative Education Resource Center (EPERC) is a central repository for educational materials and information about end-of-life issues. The purpose of EPERC is to assist physician educators and others in locating high-quality, peer-reviewed training materials. The EPERC web site supports the identification and dissemination of information on end-of-life training materials, publications, conferences, and other opportunities. You must register with the site to browse the materials and other resources. EPERC is supported by the Robert Wood Johnson Foundation and located at the Medical College of Wisconsin.
"Finding Our Way: Living with Dying in America"
www.findingourway.net
A groundbreaking series of 15 articles, "Finding Our Way: Living with Dying in America," premiered in the fall of 2001 in newspapers across the country. The series, distributed by Knight-Ridder Tribune, serves as a short course on death and dying and covers a variety of topics related to the subject. The practical advice, resources, and personal stories in "Finding Our Way" can teach how to approach these most significant life events with the same kind of planning and emotional preparedness people seek in the rest of their lives.
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.
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.
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.
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.
Medscape Advanced Approaches to Chronic Pain Management Resource Center www.medscape.com/pages/editorial/resourcecenters/public/painmgmt/rc-painmgmt.ov
The Medscape Pain Management Resource Center is a collection of the latest medical news and information on pain, including cancer-related pain. This resource includes news, conference summaries, articles, and more.
Medscape Palliative Care Resource Center www.medscape.com/pages/editorial/resourcecenters/public/hospice/rc-hospice1
Find information about hospice and palliative care in this collection of online resources. Information includes news, conference summaries, ask the expert forum, articles, editorials, journal scans, MEDLINE abstracts, and more.
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.
Michigan Circle of Life www.michigan.gov/mdch/0,1607,7-132-2940_3183_4895---,00.html
Michigan Circle of Life focuses on preserving the dignity and the rights of people who have a terminal or chronic illness. Find facts about the Michigan Circle of Life, Michigan's Dignified Death Act, Michigan's Do-Not-Resuscitate Procedure Act, and hospice care in Michigan.
Michigan Hospice and Palliative Care Organization (MHPCO) www.mihospice.org
MHPCO serves as an advocate for terminally ill people and their families by promoting access to quality hospice and palliative care throughout Michigan. The MHPCO Web site contains information on hospice care that will be useful for those personally facing a terminal illness and their loved ones. In addition to the physical care of the person, other topics covered include social and spiritual issues, grief and bereavement, and practical matters such as payment for hospice care and legal needs for advance planning (advance directives). It also provides answers to common questions about death and dying. A Reference Library section includes information of interest to providers involved in hospice care.
MHPCO — Advance Directives www.mihospice.org/site/428/default.aspx
This page includes introductory information about advance directives and a link for downloading a Microsoft Word version of the booklet entitled Advance Directives: Planning for Medical Care in the Event of Loss of Decision-Making Ability, which was prepared by the Michigan State Long Term Care Ombudsman Program. The booklet includes advance directive information and copies of forms for durable powers of attorney for health care, living wills, do-not-resuscitate declarations, and declarations of anatomical gifts.
Hard copies of the guide are available for $35 per 100 copies; order online using the Adobe Acrobat PDF form located at www.mihospice.org/Portals/Rainbow/ Documents/0135a73b-27a7-4faa-a6f4-a266bd9bb0c4.pdf. For quantities of less than 100, call MHPCO at 517-886-6667. Funding for printing of this guide was provided by the Michigan Department of Community Health and administered by the Michigan Public Health Institute in support of the MCC priority objective on end-of-life care.
Hard copies of the guide are available for $50 per 100 copies; order online using the Microsoft Word document at www.mihospice.org/Portals/_Rainbow/Documents/Physician's Guides ORDER FORM.doc. For quantities of less than 100, call MHPCO at 517-886-6667. Funding for printing of this guide was provided by the Michigan Department of Community Health and administered by the Michigan Public Health Institute in support of the MCC priority objective on end-of-life care, and the Maggie Allesee Center for Quality of Life.
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 for Quality Palliative Care — Clinical Practice Guidelines for Quality Palliative Care, Second Edition www.nationalconsensusproject.org/guideline.pdf(available as an Adobe Acrobat PDF file)*
The Clinical Practice Guidelines for Quality Palliative Care, Second Edition, provides 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. The National Consensus Guidelines represent consensus achieved among nationally recognized experts on voluntary, evidence-based guidelines to ensure quality and consistency of care. They describe core precepts and structures of clinical palliative care programs presented in eight dedicated sections (Structure and Processes of Care; Physical Aspects of Care; Psychological and Psychiatric Aspects of Care; Social Aspects of Care; Spiritual, Religious and Existential Aspects of Care; Cultural Aspects of Care; Care of the Imminently Dying Patient; and Ethical and Legal Aspects of Care).
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.
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.
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.
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.
The Pain and Policy Studies Group www.medsch.wisc.edu/painpolicy/matrix.htm
Provides a database of state laws, regulations, and other official governmental policies related to pain.
State Bar of Michigan — Advance Directives: Planning for Medical Care in the Event of Loss of Decision-Making Ability www.michbar.org/elderlaw/adpamphlet.cfm
This online version of the Advance Directives booklet from the Michigan State Long Term Care Ombudsman Program includes general information about advance directives, as well as specific information and Adobe Acrobat PDF versions of forms for durable powers of attorney for health care, living wills, do-not-resuscitate declarations, and declarations of anatomical gifts.
Supportive Care of the Dying www.careofdying.org
Supportive Care of the Dying: A Coalition for Compassionate Care, has an overall goal to develop and test innovative projects and to provide support to member organizations as they initiate system change in the care of persons affected by life-threatening illness. See the Tools for Change section to access ready-to-use tools and resources for use in health care organizations. See the Other Resources section for book and videotape reviews, advance care planning resources, and more.
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.
University of Wisconsin Pain & Policy Studies Group Report: Achieving Balance in State Pain Policy: A Progress Report Card (2008) www.painpolicy.wisc.edu/Achieving_Balance/PRC2008.pdf(available as an Adobe Acrobat PDF file)*
Improving state policy is a necessary complement to the many ongoing state-level initiatives designed to educate healthcare professionals about the appropriate use of pain medications and to inform the general public about the availability of pain treatment options. Most importantly, improving state policy will remove barriers and enhance appropriate access to pain medications for people who experience severe cancer pain during the course of their illness and beyond. This report, which is in its second year, evaluates state-level pain management policies across the country. It was prepared by the University of Wisconsin Pain & Policy Studies Group (PPSG) and jointly funded by the American Cancer Society, the Lance Armstrong Foundation, and Susan G. Komen for the Cure. The 2007 report card shows that California and Wisconsin had the greatest grade improvement. Other states whose grades improved from last year were Arizona, Colorado, Connecticut, Kansas, Massachusetts, and New Hampshire. In addition, Kansas and Wisconsin now join Michigan and Virginia as having the most balanced pain policies in the nation.
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.
*Please Note: You will need Adobe Acrobat Reader to open, view and print this file once it has been downloaded. If you need a free copy of Adobe Acrobat Reader, please click here.
**Please Note: You will need Microsoft PowerPoint to open, view and print this PowerPoint file once it has been downloaded. If you need a free copy of the Microsoft PowerPoint 2007 Viewer, which enables you to open, view and print full-featured presentations created in PowerPoint 97 and later versions, please click here.
