June 2006

Welcome to Connections.  The current edition of Connections and archives of previous editions are located in the ‘What’s New’ section of www.LIVEpartners.org.  Please forward this e-newsletter to your staff, coalition members and other organizational partners using the 'forward a friend' prompt at the bottom.

The Caring Connections Team wishes everyone a wonderful Fourth of July celebration!

New Consumer Report on Health Care Policy…The Citizen's Health Care Working Group has published a report that polled “average citizens” on health care policy.  The report was generated from meetings held across the country and several Internet polls and includes six initial recommendations.  One recommendation is to “restructure end-of-life services to increase access.”  The group says that citizens should “clearly understand their options and have their choices carried out accordingly.  Communication among providers, patients and their families is vital.  Funding, at the community level, should be available to help individuals and families gain access to care.”  Congress will hold hearings on the report next year.  The entire report of interim recommendations is available online at http://www.citizenshealthcare.gov/

Advance Directive Licensing Opportunity – Last Chance Before Rates Increase… Caring Connections has recently enhanced and expanded their advance directive packet for all 51 states.  Don’t miss your opportunity to license the advance directive packets at the current rates through July 15. Caring Connections advance directive packet helps consumers navigate the state-specific legal forms with greater ease.  The unique packet design includes:

• Glossary of key terms explaining advance directive terminology
• State-specific legal and general resources for end-of-life issues
• Descriptive language and instructions related to the Health Insurance Portability and Accountability Act (HIPAA), the law that protects health and medical information
   

Bill Colby’s New Book Now Available… Caring Connections and NHPCO are delighted to announce the release of the new book by Senior Fellow, Bill Colby – Unplugged:  Reclaiming Our Right to Die in America (Amacom Books, 2006).  You can order the book directly from the National Hospice and Palliative Care Organization’s Marketplace – at the low member discounted fee of $15 plus shipping and handling. More information about his book is available at LIVEpartners.org.  A recent Library Journal review states “Many books have been written about right-to-die issues, but this one stands out for its reasoned, accessible approach… Essential reading for anyone who wants to leave loved ones with the ability to make informed right-to-die decisions, this book is very highly recommended for all libraries.”

Bilingual Online Support Network for Parents of Seriously Ill Children… Caring Connections is pleased to announce a new online support network for parents caring for children diagnosed with a serious illness – www.partnershipforparents.org.  A Spanish version of the Web site is also available at www.padrescompadres.org.  The sites are easy to read, user-friendly and designed to accommodate low-speed internet connections.  The resources were created by parents for parents, with support from the Children’s Hospice & Palliative Care Coalition and cover a spectrum of issues from parents facing a new diagnosis through those coping with bereavement.  Support for the Web site was provided by a grant from The Robert Wood Johnson Foundation, Princeton, New Jersey, www.RWJF.org; and in collaboration with Caring Connections.

Crisis Communications Guide Available for Members… NHPCO has developed a new resource offering advice for organizations facing a media crisis:  Crisis Communications Planning: A Guide for Providers.  Eventually, every organization will face a challenge of some sort that demands a clear and timely response from a communications point of view. That’s what this guide is intended to do—offer you some basic tips and thoughts in preparation for an unexpected situation. If your organization is already experienced with such issues, this guide will be a helpful reminder of some key points.  If your organization has not created a crisis communications plan, this guide will help you prepare. Members may download the Crisis Guide from the Communications section of nhpco.org.  (Hardcopies of the guide will be available for purchase from Marketplace later this month.)

Caring Connections Enhances Ask Tough Questions Brochure… Collaborating with the National Association of Social Workers (NASW) and the National Endowment for Financial Education, Caring Connections has enhanced its consumer brochure, Ask Tough Questions.  The brochure includes sample questions for consumers to ask their doctor, family, spiritual caregiver and healthcare agent when faced with a life-limiting illness.  The revised version now includes sample questions to ask a social worker and lawyer. View the brochure online at caringinfo.org.  Copies for distribution can be purchased from NHPCO’s Marketplace.  Also, visit NASW’s consumer Web site, www.helpstartshere.org which provides individuals and families with timely information about problems they face every day and offers resources to help them cope.

The Interdisciplinary Team on Supporting Family Caregivers… The June issue of NewsLine/Insights features articles from members of the National Council of Hospice and Palliative Professionals that focus on supporting family caregivers. The NewsLine section examines complementary therapies. Coalition members and LIVE partners are encouraged to read the June NewsLine/Insights online.

Is There an Artist or Gifted Writer in Your Midst?  There’s still plenty of time to submit an entry to NHPCO’s Photo/Writing/Film Contest. Submissions from coalition members and LIVE partners are encouraged! Read more online at nhpco.org.

Tip of the Month: Looking for pediatric end-of-life resources?  NHPCO offers a comprehensive list of resources for professionals and members of the public at www.nhpco.org/lion.

Cultures of Caregiving – Professionals, Families and Volunteers… The opening plenary of NHPCO’s Volunteerism and Family Caregiving Conference will explore the definitions and roles applied to family caregivers and how those roles change when they move to different models of care.  Carol Levine of the United Hospital Fund, New York, NY, will discuss how professionals and volunteers can support the family caregiver through these transitions.  Visit www.nhpco.org/vol2006 for more information about the conference which will be held in Denver, July 28 – 30, 2006. 

NHPCO’s 21^st Annual Management and Leadership Conference and Exposition - New York City - September 11–13^. Caring Connections is sponsoring a free, half-day preconference seminar at MLC – “It’s About How You LIVE - at Work” and a session track throughout the conference.  Register early and save. Click here to download a registration form.

Sacramento Healthcare Decisions (SHD) provides educational materials designed to complement advance directives by emphasizing the importance of family communication. SHD’s popular Finding Your Way booklet and its Spanish translation, Como’ encontrar su camino, have been distributed to almost half a million people. The 13-page booklet encourages early family discussions and helps patients and their loved ones consider difficult decisions about end-of-life medical treatment. A new resource is also available for Chinese families. Mrs. Lee’s Story is a 16-page booklet in Chinese and English that includes basic information on advance directives, pain management and hospice care. The Chinese section of the booklet can be read by people who speak Cantonese or Mandarin. All three booklets were recently updated and are appropriate for use in any state. To order, visit www.sachealthdecisions.org or call (916) 851-2828.

If you have community engagement resources that you would like to include in “Connections”, please contact Ashley Hammarth at ahammarth@nhpco.org. 

Please do not reply to this message.