Professional Resources: Additional Resources

Hospice Regulations, Standards of Care, Best Practice Guidelines

  • Additional Center publications
  • CMS - official site of the U.S. Department of Health and Human Services Centers for Medicare and Medicaid Services (CMS), which is the Federal agency overseeing the Medicare and Medicaid programs.
  • Colorado Department of Public Health and Environment - Source of Colorado hospice regulations, licensure, and investigations.
  • Hospice and Palliative Care: Options for Care at the End of Life - a chapter from the 2008 Senior Law Day Handbook offering a plain-language explanation of hospice and palliative care: what they are, how they are "delivered," how they are paid for, where to get them in Colorado. Includes helpful tips and notes and an appendix of resources.
  • Hospice in a Skilled Nursing Facility - a Model for Success - manual developed by hospice and long-term care professionals, covering the delivery of hospice care to residents within skilled nursing facilities, and indicating whether specific responsibilities lie with the hospice program, the nursing facility, or jointly. [Note: the electronic version does not contain most of the appendices. Hard copies containing the appendices can be obtained for a nominal fee from the Colorado Center for Hospice & Palliative Care.
  • Medicare Hospice Benefits - educational brochure that describes Medicare services provided by hospice, published by the Centers for Medicare and Medicaid Services (CMS).
  • Palliative Care Best Practice for Long-Term Care - a joint publication of the Colorado Center for Hospice & Palliative Care and the Colorado Health Care Association offering a comprehensive best practice for provision of palliative care in the long-term care setting prior to and hand-in-hand with hospice care. Includes guidelines for a Hospice-LTC coordinated care plan. 


Other Local and National Organizations and Initiatives

  • Aging with Dignity - national not-for-profit organization that promotes human dignity as America ages, with emphasis on improved care for those near the end of life. Distributes Five Wishes, an easy to use advance directive that over 1 million American families have used to discuss how they want to be treated during times of serious illness.
  • American Academy of Hospice and Palliative Medicine (AAHPM) is an organization of physicians and medical professionals dedicated to excellence in and advancement of palliative medicine by providing education and clinical practice standards, fostering research, facilitating personal and professional development, and by public policy advocacy. The site includes information on membership and benefits, educational opportunities through AAHPM-sponsored programs including the College of Palliative Care, a bookstore, fellowship program directory and other career opportunities, and professional clinical resources.
  • Americans for Better Care of the Dying (ABCD) was founded in 1997 to reform end-of-life care and advocate for changes in professional practice and public policy to improve dying in America. The site provides information on end-of-life care news and events, updates on national legislation affecting end-of-life care, advocacy and policy tools, and other professional resources.
  • Center for Bioethics and Humanities at the University of Colorado Health Sciences Center offers education in health care ethics and related topics to university students and professionals, as well as offering public programs and sponsoring events of interest to the wider health care and lay communities.
  • Center for Practical Bioethics has addressed the real-life needs of those dealing with healthcare dilemmas since 1984. Through education, consultation, and public engagement, the Center has helped patients and their families, healthcare professionals, policymakers, and corporate leaders grapple with ethically complex issues in health and healthcare. In line with its commitment to practical application of ethics, the Center has four targeted program areas: Aging and End-of-Life Care; clinical and organizational ethics; disparities in health and healthcare; life science and research ethics. Specific to palliative care, the Center’s Web site has a section on advance care planning, grounded in the “Caring Conversations” model. The site also includes links to print, audio, video, and Web-based resources; information on workshops and conferences; policy statements and news articles.
  • Colorado Cancer Coalition, based at the Colorado Department of Public Health and Environment, comprises organizations and individuals dedicated to the control and prevention of cancer throughout the state. The site offers information on the coalition and its activities, including the Colorado Cancer Plan 2005-2010; information on helpful resources, publications, funding opportunities, and statewide activities focused on cancer prevention and treatment.
  • Colorado Healthcare Ethics Forum is a consortium of members of ethics committees in various health care settings across the state. The purpose of the forum is to provide networking among these professionals and ethics education. The site offers information on membership, conferences, professional resources including a speaker's bureau and ethics literature reviews, and links to associated organizations. 
  • The End of Life Nursing Education Consortium (ELNEC) develops training programs for nurses in end-of-life care and practice. This site is hosted by the American Association of Colleges of Nursing (AACN). The site includes current and future offerings of ELNEC programs (specialty programs include core, oncology, pediatric, critical care, geriatric, and graduate); lists of certified trainers for all programs; the ELNEC newsletter, Connections, produced quarterly; a list of publications and articles; links to articles and other EOL Web sites.
  • Hospice and Palliative Nurses Association - is an organization for and of palliative care nurses. The web site is detailed and offers valuable resources for hospice and palliative care nurses, including announcements of annual meetings; information on the certification examination and lists of certified nurses in the United States, career opportunities, education and research committee members, position statements on matters of practice and care, and lists of published materials which can be ordered from the site.
  • Hospice Association of America - national organization representing hospice programs and an affiliate of the National Association for Home Care (NAHC).
  • Hospice Foundation of America - promotes the hospice concept of care through education, including the annual national bereavement teleconference.
  • Life Quality Institute offers clinical training and administrative assistance to developing palliative care programs, training and education for health care students, and community programs on caregiving and advance care planning.
  • Metta Institute - founded by Frank Ostaseski, primarily educational organization offering extended professional training for end-of-life care practitioners.
  • National Consensus Project is a collaboration among the National Hospice and Palliative Care Organization, the Hospice and Palliative Nurses Association, and the American Academy of Hospice and Palliative Medicine to promote the value of palliative care and define clinical practice guidelines for palliative care programs. The Web site includes a downloadable version of current clinical practice guidelines for quality palliative care.
  • National Hospice and Palliative Care Organization (NHPCO) is the largest nonprofit membership organization representing hospice and palliative care professionals in the nation. Their goal is to continually improve the quality of end-of-life care and expand access through partnerships and assistance to members. This site offers information on educational opportunities and professional resources, a national database of care providers, general information on end-of-life care and advance care planning, and links to partner organizations.
  • National Prison Hospice Association - advocacy organization promoting hospice care within prisons.
  • Population-based Palliative Care Research Network, based at the University of ColoradoDenver and Health Sciences Center in Denver, Colorado, was founded in 1998 to conduct and disseminate ongoing, high-quality rigorous research in hospice and palliative care. This site provides updates on projects completed and underway, results and publications, a newsletter, links to association organizations, and book and movie reviews.

Publications

  • The Dartmouth Atlas of Health Care - comprehensive overview of the status of health care and health of Americans. Excellent source of data.
  • Finding Our Way: Living with Dying in America - a multiple-part series of articles that appeared in newspapers nationwide in the fall of 2001, including personal stories, tips, and resources.
  • Means to a Better End: A Report on Dying in America Today - November 2002 state-by-state report on end-of-life care, accessed via the Robert Wood Johnson web site.

Other Web Links and Resources

  • American Pain Society - a multidisciplinary educational and scientific organization dedicated to serving people in pain.
  • Edeledata.org - a gateway for accessing and obtaining data on decedents, death and dying, and the end-of-life experience in America: health and demographic statistics, publications, research, resources and more.
  • End of Life Insights - includes resources and information for professionals and the public on elder care, health care, and funeral services.
  • Facts on Dying - policy relevant data on care at the end of life.
  • GriefNet - system of resources related to death, dying, and bereavement.
  • Growth House - search engine offers access to the Internet's most comprehensive collection of reviewed resources for end-of-life care. Inter-Institutional Collaborating Network on End-of-Life Care (IICN) links health care organizations through a shared network.
  • National Center for Death Education - located at Mount Ida College in Newton, Massachusetts, offers residential summer workshops and training courses in bereavement, diversity skills, end-of-life care practice.
  • Project on Death in America - PDIA's mission is to understand and transform the culture and experience of dying and bereavement through initiatives in research, scholarship, the humanities, and the arts, and to foster innovations in the provision of care, public education, professional education, and public policy.
  • State Health Facts Online - health and health care statistics and data state by state
  • Worldwide Congress on Pain - sponsored by the Dannemiller Memorial Educational Foundation. This site has information on pain control for both the professional and the consumer, including a library of articles and abstracts.