| A. ORIGINAL TOOLS FROM THE FEATURED INNOVATION
CAReTOGRAPHY Puzzle
©2003 CAReTOGRAPHY. Published here with permission.
My Favorite Things
©2003 CAReTOGRAPHY. Published here with permission.
Collaborator Profile
©2003 by Hospice & Palliative Care of Cape Cod, Inc. Published here with permission.
Collaborative Statement
©2003 by Hospice & Palliative Care of Cape Cod, Inc. Published here with permission.
B. WEBSITES RELATED TO THIS ISSUE'S CONTRIBUTORS:
Perspectives on Aging
www.drmurielgillick.com
Dr. Muriel Gillick is a physician specializing in the care of elderly patients. Her office is at the Hebrew Rehabilitation Center for Aged in Boston, where she sees patients and is in charge of medical education. Her website offers her perspectives on aging, frailty, and medical ethics.
Hospice & Palliative Care of Cape Cod
www.hospicecapecod.org
Sally Okun launched the LifeCare Conversations program here.
Austin Health
www.armc.org.au
This Australian hospital is now adapting the Respecting Choices program, and Melodie Heland, nurse manager of the Intensive Care Unit, has written the Personal Reflection in this issue.
C. OTHER RELATED WEBSITES:
Agency for Healthcare Research and Quality (AHRQ)
Advance Care Planning: Preferences at the End of Life
www.ahrq.gov/research/endliferia/endria.htm
A new report by the US Agency for Healthcare Research and Quality, titled, Advance Care Planning: Preferences at the End of Life, discusses how advance care planning can help ensure that the medical care preferences of patients who are terminally ill are honored by hospital doctors.
Australian Palliative Aged Care (APAC)
www.apacproject.org
To date, no guidelines exist for implementation of palliative care in aged care facilities in Australia. As well, there are no specifications for how staff that work in aged care facilities should be trained to provide palliative care to these populations, nor is there a systematic approach to palliative care education for this workforce. APAC is working to address these deficits across the Australian continent.
California Coalition for Compassionate Care
ECHO Nursing Facility Recommendations
www.finalchoices.calhealth.org/pubs_materials.htm#echo
ECHO (extreme care, humane options) calls for goals of care to be discussed on admission to the nursing home, during quarterly care planning, and whenever there is a significant change in the resident’s condition. ECHO delegates responsibility for eliciting the goals of care to an interdisciplinary team comprising the physician, nurse, and other unspecified staff.
The California Coalition for Compassionate Care also offers a page of advance directive education materials at www.finalchoices.calhealth.org/advance_directive.htm.
Choices Bank
www.choicesbank.org
A new, free, electronic community repository for advance care planning documents, created by the Life's End Institute (formerly called the Missoula Demonstration Project) in Missoula, Montana, uses Internet technology to overcome some of the barriers that have stood in the way of wider use of advance directives. Currently available only for western Montanans, one of the project's goals is to create an exportable model of a community-based advance directive depository.
Community-State Partnerships to Improve End-of-Life Care
www.midbio.org/npo-about.htm
A grant program funded by The Robert Wood Johnson Foundation, Community-State Partnerships to Improve End-of-Life Care, has awarded $11.25 million to 21 broad-based, multidisciplinary coalitions working to promote policy change and support for high-quality, comprehensive end-of-life care. Both the New Hampshire and North Carolina efforts described in Part 1, the March-April 2003 issue of Innovations, are grantees of this national program office, housed at the Midwest Bioethics Center in Kansas City, Missouri.
Education for Physicians on End-of-Life Care (EPEC)
www.epec.net
Module 1 of the EPEC training Participant’s Handbook focuses on advance care planning. The entire handbook can be downloaded for free at www.epec.net/content/participantshandbook.html.
Five Wishes
www.agingwithdignity.org/5wishes.html
Five Wishes is a document that helps people express how they want to be treated if they become seriously ill and unable to speak for themselves. It is unique among all other living will and health agent forms because it looks to all of a person's needs: medical, personal, emotional, and spiritual. Five Wishes also encourages discussing your wishes with your family and physician.
Gundersen Lutheran Medical Center
Respecting Choices—Advance Care Planning
www.gundluth.org/eolprograms
Since 1993, Respecting Choices® has demonstrated success in implementing a community program that incorporates all of the area's major health care systems, develops effective partnerships with other professional groups and organizations, and is committed to consistent educational materials, training, and practices. The lessons learned and skills enhanced from this endeavor are being shared with other interested communities and organizations through this curriculum.
The components of Respecting Choices include: 1) a course to assist individuals or a team from an organization or community to develop a successful advance care planning program; 2) a course to train health professionals and others to facilitate advance care planning; 3) a Respecting Choices Advance Care Planning Facilitators' Manual; and 4) an assortment of community, patient, and organizational resources to promote advance care planning.
Hospice of the Florida Suncoast
www.thehospicerallyingpoints.org/tools.html
Hospice of the Florida Suncoast, a Rallying Points Regional Resource Center, offers free resources, tips and helpful links for people working to improve end-of-life care or build and sustain a community coalition. The website was designed specifically for Rallying Points www.rallyingpoints.org coalitions and communities interested in starting grassroots coalitions to educate consumers as well as health, human services and faith providers about how to support those in the last years of life.
Last Acts fact sheet
Thinking Ahead: Advance Planning for End-of-Life Care
www.lastacts.org/files/misc/THINKINGAHEAD.pdf
Last Acts encourages readers to download and share its fact sheets and
tip sheets with patients and family members. Information on other fact
sheets can be found on our general links, www.edc.org/lastacts/links.asp
page.
Life's End Institute: Missoula Demonstration Project
www.missoulademonstration.org/
Life's End Institute is an innovative community project in the state of Montana that is working to improve how people experience dying, caregiving, death, and bereavement. The focus is on community-based research and public engagement to foster social change. Nationally, the project has helped more than 200 communities nationwide in their own efforts to improve end-of-life care.
Massachusetts Commission on End of Life Care
www.endoflifecommission.org/
The Massachusetts Commission on End of Life Care was established by the state legislature to improve the quality of life for citizens of the Commonwealth near the end of life. The Commission has developed a resource guide for end-of-life services in Massachusetts in order to better assist individuals and their loved ones with conversations and decisions about health care options at the end of life. The site is a rich source of information for all interested readers. Their page on advance care planning is www.endoflifecommission.org/end_pages/advance_care.htm and their general consumer information page is www.endoflifecommission.org/end_pages/guide_info.htm.
Massachusetts Department of Public Health
Office of Emergency Medical Services
Comfort Care/Do Not Resuscitate (DNR) Order Verification Program
www.state.ma.us/dph/oems/ccare.htm
Comfort Care/DNR is the only out-of-hospital DNR order recognized in Massachusetts. This page includes several documents that clarify its use: "Comfort Care Frequently Asked Questions," Comfort Care (DNR) General Information," "Why Comfort Care?" "Information for Clinicians" and a sample Comfort Care form and bracelet. Physicians, Physician Assistants and authorized Nurse Practitioners are allowed to obtain these forms from the MA Department of Public Health Office of Emergency Services. If patients are interested in out-of-hospital DNR, they should speak with their health care providers about this process.
Massachusetts Medical Society
Advance Directives: Information for Consumers and Health Care Professionals
www.healthcareproxy.org
This page on advance care planning offers more guidance on advance directives and specific information tailored to Massachusetts’ residents. One can access a pdf document "Massachusetts Health Care Proxy, Information, Instructions, and Form" from this page.
Midwest Bioethics Center
Caring Conversations—Making Your Wishes Known for End-of-Life Care
www.midbio.org/mbc-cc.htm
Caring ConversationsSM is a consumer education initiative that helps individuals and their families share meaningful conversation while making practical preparations for end-of-life decisions. The Caring Conversations workbook includes a questionnaire to help people have "caring conversations," an advance directive document, and a list of the most frequently asked questions about advance directives. You can download the workbook at www.midbio.org/workbook.pdf.
A Guide to Advance Care Planning: Ontario Seniors' Secretariat
www.gov.on.ca/citizenship/seniors/english/advancecare.htm
This Guide to Advance Care Planning has been developed by the government of Ontario, Canada, as part of Ontario's Strategy for Alzheimer Disease and Related Dementias. It encourages people to discuss their care wishes with their families and those who will make decisions for them in the future in the event they are unable to make decisions themselves. Step-by-step, it explains how to begin the process of advance care planning and discusses options, as well as provide answers to some frequently asked questions.
Partnership for Caring: America's Voice for the Dying
www.partnershipforcaring.org
Partnership for Caring is a national nonprofit organization devoted to raising consumer expectations and demand for excellent end-of-life care. The site offers resources for talking about end-of-life choices and provides state-specific advance directive documents.
Supportive Care of the Dying
Person to Person: Discovering Patient Wishes in Planning for End of Life - A Tool for Physicians
www.careofdying.org/Resources/PHYSICN.pdf
The tools included in this facilitator guide address the special challenges that physicians face in helping their patients as they approach the end of their lives. The video and guide are specifically designed to help physicians teach physicians these important skills. (To order a hard copy of the booklet and the companion video tape contact clieberman@providence.org.)
Supportive Care of the Dying also publishes Supportive Voice, a quarterly newsletter that allows readers to share in the experiences and challenges of members and professional colleagues in order to help improve end-of-life care. Their homepage is www.careofdying.org.
 Continuing the Conversation about Advance Care Planning: Part 1, Vol. 5, No. 2, March-April 2003 Resources and Tools page at www2.edc.org/lastacts/archives/archivesMarch03/resources.asp
Be sure to visit the inaugural issue of Innovations in End-of-Life Care, entitled "Communication, Truth-telling and Advance Care Planning," and its Resources and Tools page at www2.edc.org/lastacts/archives/archivesJan99/resources.asp.
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