For Patients and Families

• Advance Directives April 16, 2008 will be the inaugural National Healthcare Decisions Day. On this day, throughout the country, healthcare providers, professionals, chaplains,attorneys, and others will participate in a massive effort to highlight the importance of advance healthcare decision-making. To facilitate this process, initiative organizers will provide clear, concise, and consistent information and tools for the public to execute written advance directives(healthcare power of attorney and/or living will) in accordance with their applicable state laws. These resources will be available at www.nationalhealthcaredecisionsday.org. Supportive Care Coalition Board Chair Sr. Gretchen Elliott, and the Coalition's executive director, Sr. Karin Dufault, serve on the National Healthcare Decisions Day Stakeholder/Participation Committee.

• Advance Directives Online Repository in Nevada
Nevada's first online repository for advance directives will allow health care professionals to retrieve information about their patients’ end-of-life treatment options.  The project is a joint effort of the Nevada Center for Ethics & Health Policy at the University of Nevada, Reno, and the Nevada Secretary of State's Office. For further information,  please visit  http://www.unr.edu/ncehp/ or call the Nevada Center for Ethics & Health Policy (775)327-2309.

• American Pain Foundation guide “Treatment Options: A Guide for People Living With Pain” is a new resource from The American Pain Foundation.  The guide “provides credible, comprehensive information about medications, psychosocial interventions, complementary approaches, rehabilitation therapies, surgical interventions and much more.”  For a PDF copy and more information,  www.painfoundation.org

• American Society on Aging is the largest organization of professionals in the field of aging. Website resources include publications and educational opportunities to enhance the knowledge and skills of people working with older adults and their families. American Society on Aging 

• Americans for Better Care of the Dying aims to improve end-of-life care by learning which social and political changes will lead to enduring, efficient, and effective programs. Their website highlights national news and political decisions affecting end-of-life care.  Americans for Better Care of the Dying 

• Cancer.Net
The American Society of Clinical Oncology (ASCO), launched Cancer.Net, www.cancer.net,
a comprehensive, physician-approved patient Web site that provides reliable, up-to-the-minute information on more than 120 types of cancer and cancer-related syndromes. The site replaces PeopleLivingWithCancer.org and adds new features, including toolkits to help newly diagnosed patients and survivors navigate their care. And, regular pod casts give patients a chance to hear from ASCO experts on a variety of cancer issues, such as genetic counseling, tobacco use and tips on caregiving.  “Good cancer care starts with good cancer information,” says ASCO President Nancy Davidson, MD.

• CareCommunity is a  web-based community for patients, families and caregivers.  This interactive online community provides peer group and professional support and compassion, access to resources and in-depth information about life-limiting illness.  This resource may be used to create social support networks, find local resources, access tools to organize care activities, and search for answers to care questions.  CareCommunity is part of Enclara Health.  For more information, please visit www.mycarecommunity.org

• GetPalliativeCare.org is a new palliative care resource created for consumers that also includes sections for medical practitioners and policymakers. This new website is easy to navigate and provides clear, comprehensive palliative care information to patients and families coping with serious, complex illness. Key components of the site include a palliative care Provider Directory, a definition and detailed description of what palliative care is, a three-step process for obtaining palliative care, direct links to palliative care-related organizations and a brief questionnaire to assist consumers in determining if palliative care is appropriate for them or their loved-ones. www.getpalliativecare.org 

• Department of Pain Medicine and Palliative Care at Beth Israel Medical Center offers healthcare consumers and professionals accurate, reliable information on treatment options, as well as links to both their integrative pain medicine website, HealingChronicPain.org, and their Palliative Care website HospiceNYC.org. Department of Pain Medicine and Palliative Care at Beth Israel Medical Center  

•Hospice Foundation of America offers a general picture of what to expect before, during, and after the dying process to equip patients and family with enough knowledge and understanding of the dying process to guide them through the journey.  Hospice Foundation of America

• National Hospice and Palliative Care Organization is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end -of -life care and expanding access to hospice care with the goal of profoundly enhancing quality of life for people dying in America and their loved ones. www.nhpco.org   
  
• PBS Documentary Caring for Your Parents is Online for Viewing                                                              Produced, written, and directed by award-winning filmmaker Michael Kirk, Caring for Your Parents is a moving two-hour special that draws much-needed attention to this universal reality. The program aired on April 2 and is now available for online viewing and also will be available on DVD for $19.95.  The first 90-minutes of the documentary underscores today's struggle to keep parents at home, tensions between siblings, and the complexity of shifting caregiver roles through an intimate look at five American families. In the end, the documentary contends that successful caregiving requires one primary ingredient ‒ love. Immediately following the broadcast. Dr. Art Ulene leads "A Conversation About Caring." This half-hour panel discussion offers concrete advice and guidance on how to start the conversation, often the most difficult step in caregiving. http://www.pbs.org/wgbh/caringforyourparents/watchonline/index.html

• Reclaiming the End of Life is a nonprofit, nonpartisan New Hampshire-based projected designed to make bold changes in caring for frail elderly, serious ill persons of all ages, and family caregivers.  Formed to use the New Hampshire presidential primaries and the national spotlight they command to engage candidates in a national conversation about how they plan to address the unmet needs of this large and increasing population of Americans.  The Initiative's movement is based on four phases: Collecting voices of the New Hampshire Citizens, spring/summer 2007; Making voices heard by presidential candidates, fall 2007; Monitoring the issues, ongoing; Sharing what is learned/spring 2008.  www.reclaimtheend.org

•The Family Caregiver Handbook, created by  researchers at the MIT Workplace Center, is a “gateway” to key elder care organizations across Massachusetts, but much of the information is applicable to  caregivers in any state.  http://web.mit.edu/workplacecenter/hndbk/toc.html 

• The Friends of St. John the Caregiver is an international Catholic organization addressing the growing needs of family caregivers by providing spirituality, information and resources to individual caregivers
www.YourAgingParent.com; training and educational material to dioceses and parishes       www.CatholicCaregivers.com; and a membership association offering spiritual support for those who need care, those who give care, those who assist others giving care www.FSJC.org/members
www.fsjc.org

• U.S. Living Will Registry ®  This registry allows for on-line registration of an advance directive and/or organ donor information, U.S. Living Will Registry ® - Living Will and Advance Directive Registry

 Tools

• Internet-Based Scheduling Calendar service for friends, family, colleagues,and neighbors to assist loved ones in need is now available through a joint effort of Project Compassion and Lotsa Helping Hands.  The free, internet-based, private calendar can be designed to coordinate specific task needs of a patient and family, such as meal coordination and delivery; transportation to and from medical appointments and commitments; as well as other tasks necessary to help life run more smoothly during an illness or crisis. Participating volunteers simply log on and sign up where they can help, http://www.project-compassion.lotsahelpinghands.com.