End of Life Resources

The following organizations have web sites with current addresses and phone numbers.  There is a wealth of information available for professionals, families and patients.  Key search words:  palliative care, hospice, end-of-life issues, advance care planning,  “physician orders for life-sustaining treatment” (POLST).

Colorado

Colorado Resources

The Colorado Advance Directives Consortium is an informal organization of professionals in health care, senior services, law and ethics dedicated to improving the tools and processes for health care decision making in Colorado.

The Colorado Center for Hospice & Palliative Care works to increase access to palliative and hospice services and promotes quality standards of care for all Coloradoans. Members are provided advocacy, education, and best practice models of care.

The Colorado Health Care Association supports nursing homes and assisted living residences, provides information on hospice and palliative care in the long-term care setting or specific information on skilled nursing facilities and assisted living residences.

The Iris Project offers consultation and education for the public and healthcare/human service professionals on advance care planning, hospice and palliative care, grief and bereavement support, and medical decision-making.

The Life Quality Institute, Denver, provides clinical training for developing palliative care programs, training and education of health care professionals, students, and community programs on caregiving and advance care planning.   The Creating Communities of Care model helps families, friends and communities assemble a network of shared care giving for those in need.

Publications

Publications

“Improving Advanced Illness Care:  The Evolution of State POLST Programs”, AARP Public Policy Institute.

Center for Medicare and Medicaid Services offers a free booklet, “Medicare Hospice Benefits” which explains in detail the coverage Medicare and Medicaid provide for the costs of hospice care. 1-800-MEDICARE or www.medicare.gov.

“Hospice and Palliative Care: Options for Care at the End of Life”, Jennifer Ballentine, MA, Life Quality Institute, Senior Law Handbook, 2011 edition.

“Your Right to Make Healthcare Decisions”, revised January 2011, prepared by the Colorado Advance Directives Coalition and the Colorado Hospital Association.

National

National Resources

 The AARP Caregiving Resource Center’s web site includes articles and links to other resources for families and caregivers.
Aging with Dignity (developers of the Five Wishes document) is a national nonprofit organization with a mission to affirm and safeguard the human dignity of individuals as they age, and to promote better care for those near the end of life.

Caring.com’s mission is to help family caregivers by providing trusted information, access to eldercare experts, community support groups, and a directory of local care giving services.  Caring.com also offers helpful information on end-of-life planning, resources, and tips for caring for someone in hospice care.

Caringinfo.org is a consumer-based web site with extensive information on advance care planning and caregiving. Specific advance directive forms for any state may be downloaded from this site.

The Center for Practical Bioethics Caring Conversations, a trademarked program of the Center for Practical Bioethics, is a consumer education initiative that helps individuals and their families share meaningful conversations while making practical preparations for end-of-life decisions.

The Center to Advance Palliative Care provides palliative care education, resources and training for health care professionals.  GetPalliativeCare.org (a site sponsored by the Center) is for patients and families providing clear, comprehensive information for people coping with serious, complex illness.  GetPalliativeCare also lists a directory of hospitals providing palliative care.

The Hospice Foundation of America provides end-of-life care resources for professionals, families and patients. The Caregiving section offers practical tools, reading suggestions, and tips on care giving for persons near the end-of-life.

The National Family Caregivers Association educates, supports, empowers and speaks up for those who care for loved ones with a chronic illness or disability or the frailties of old age.

The National Hospice and Palliative Care Organization provides a searchable database of hospice providers throughout the country and information on hospice and palliative care.