Once given a terminal diagnosis, it can be emotionally overwhelming not knowing where to turn to for help and information. The National Hospice and Palliative Care Organization (NHPCO) has put together a comprehensive list of end-of-life care resources. Below are some organizations and websites offering support, education, information and guides to patients of all ages dealing with a terminal illness, and their families. A full listing of resources can be found on their website here.
MyDirectives® and MyDirectives Mobile® is the first completely digital emergency, critical, and advance care planning platform that is free to consumers. Recognized by the U.S. Department of Health and Human Services, MyDirectives helps consumers record their medical treatment wishes, preferences regarding palliative and hospice care, organ donation, autopsy, and other critical personal information on the device, all in a format that is most convenient and comfortable for them. Still all free of charge to the consumer. They then work with personal health record and electronic medical record vendors, alongside healthcare providers and payers, to make their electronic healthcare records securely available on demand, whenever needed in an easy, quick, and secure download.
Gift From Within is a post-traumatic stress disorder (PTSD) resource for survivors, caregivers, and is also listed on the Deployment Health Clinical Center website for those suffering from trauma or caregiving. They are a non-profit organization dedicated to care for those who suffer from PTSD, those at risk for PTSD, and those who care for traumatized individuals. Educational materials include videotapes, books and articles for both clinicians and those experiencing PTSD.
This guide to long-term care provides information about care options home, community based, and residential care, along with listings of nursing homes for Veterans by state. The Shared Decision Making section provides valuable tools that help the older person, and the family support in making long term care plans and choices.
Children’s Hospice International (CHI) is an award-winning non-profit organization established in 1983 to provide a network of support and care for children with life-threatening conditions and their families. Children’s Hospice International was founded to promote the idea that critically ill children should have access to hospice, palliative, and curative care from the time their illness has been diagnosed. Current Medicaid and hospice/palliative care models do not work well for critically ill children since these services are not provided until patients are in their last six months of life. They developed a treatment model (Children’s Program of All-Inclusive Coordinated Care, or ChiPACC), which provides a blend of curative and hospice/palliative care services for critically ill children from the time of diagnosis.
The Center is dedicated to facilitating conversations about the physical, emotional and spiritual needs of Jewish people. The Center was also created to see where they are along the cultural and religious continuum and if they are affected by any advanced or terminal illness. In meeting people, The Center raises awareness of existing resources aiding those confronting end of life circumstances.
The goal of Elder Care Online is to provide information, education, and support to families caring for aging loved ones, especially those coping with Alzheimer’s Disease and related dementia. This organization offers resources of knowledge, tools, and a community of caregivers and professionals to improve the quality of life for both themselves and their aging loved ones. They do this by providing resource directories, time-saving tools, and a safe outlet for emotions through their support groups.
The Medicare Rights Center (MRC) is a national, not-for-profit, non-governmental organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling, advocacy, educational programs, and public policy initiatives. These resources assist people with Medicare understand their rights, benefits, and the navigation of the Medicare system to secure the quality health care they desire.
Caregiver Action Network (CAN) is the nation’s leading family caregiver, non-profit organization that works to improve the quality of life for those who take care of people with chronic conditions, disabilities, disease, or the frailties of old age. The National Family Caregivers Association (NFCA) provides education, peer support, and resources to family caregivers across the country free of charge. The NFCA reaches across the broad spectrum of different diagnoses, relationships, and life stages to address the concerns of all family caregivers such as adult children caring for parents with Alzheimer’s disease, families and friends of wounded soldiers, and young couples dealing with a diagnosis of MS.
Hospice Foundation of America (HFA) has been improving care at the patients’ bedside by supporting those experiencing the pain of loss, along with educating healthcare professionals who care for those we love. For more than 30 years, the HFA has served as a valued and trusted provider of guidance and education on end-of-life care, advance care planning, grief, bereavement, death and dying through public information resources and professional education.