Palliative Care

Nebraska

Links


​https://futureplanning.thearc.org/ - The Center for Future Planning aims to support and encourage adults with I/DD and their families to plan for the future. The Center provides reliable information and assistance to individuals with I/DD, their family members and friends, professionals who support them and other members of the community on areas such as person-centered planning, decision-making, housing options, and financial planning.


​http://www.thearc.org/page.aspx?pid=2530 - The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families. We encompass all ages and more than 100 different diagnoses including autism, Down syndrome, Fragile X syndrome, and various other developmental disabilities.


​http://www.nhpco.org/ - The National Hospice and Palliative Care Organization (NHPCO) 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. 


http://www.mypcnow.org/ - Palliative Care Network of Wisconsin - to support the growth of palliative care services in Wisconsin through education, systems change, and advocacy.

Dying in America is a multimedia documentary project that examines the dying experience through the eyes of nurses, directed by award-winning filmmaker Carolyn Jones

National Institute of Neurological Disorders and Stroke - The mission of NINDS is to seek fundamental knowledge about the brain and nervous system and to use that knowledge to reduce the burden of neurological disease.

Alzheimer's Association ALZ.org - An excellent and comprehensive site with local and national resources for patients, providers, and caregivers.

ConsultGeri - evidence-based recommendations for dealing with common geriatric issues. ConsultGeri is the Hartford Institute's clinical website and provides nurses and other health care professionals with immediate access to current and comprehensive geriatric-care information.

Smokefree.gov - A very comprehensive and useful site available to help individuals quit smoking. Many resources and an abundance of information, tools, and support on-line and via phone to assist in smoking cessation.

Center for Practical Bioethics - A very comprehensive, wonderful site with extensive information regarding ethical practice, issues, discourse, and resources for patients, families, students, and providers. Audio interviews, videos, downloads, links.  

Center to Advance Palliative Care - A great site with a fantastic collection of resources compiled from current evidence-based research and palliative care journals.

GeriPal - A Geriatric/Palliative Care Blog dedicated to developing an open discourse regarding care of the elderly and palliative care. An extensive amount information and resources.


CarePages - A long-time resource for patients and families to keep everyone in the individual's life connected and up to date through blogging and web pages.


What Matters Now - One of the great options out on the internet for patients to set up and blog about their day in and day out life. Easy to set up and use. 

 Americans for Better Care of the Dying - A great site with an extensive amount of resources and information pertinent to End-of-Life Care and issues revolving around it. Navigate the "Links" tab for many resources. 

On-line text version of "The Handbook for Mortals: Guidance for People Facing Serious Illness" by Joanne Lynn M.D. and Joan Harrold M.D.  

 PREPARE - A site dedicated to facilitating individuals opinions and attitudes about their health and care be understood and expressed. The site uses video and has an easy-to-use step by step process of simple imperatives one must define for themselves regarding their care. Upon completion one will have an informal directive of the information discussed and defined.

The Conversation Project - A site dedicated to empowering individuals and families with resources, information, and guidance in initiating and conducting advanced health care planning conversations.

Nebraska Hospice and Palliative Care Association - Excellent site with useful resources and information for patients, family members, caregivers, and healthcare providers.

It's All About the Conversation - A website created to empower and inform people about advanced care planning, end of life options, and conversations.

Nebraska State Stroke Association - A site dedicated to empowering communities through Stroke education, awareness, and support of this deadly and debilitating disease to maximize quality of life for Stroke Survivors and their families. 

San Jose Mercury News: Cost of Dying Series - Ongoing coverage of medical decisions concerning end of life produced by the e-publication out of California. An extensive collection of information and discussion concerning end of life care issues. An excellent resource. 

Aging Partners - Excellent site with many resources for geriatric aged individuals and their families to connect with local services and their community for assistance and care.

Caregiver Action Network - A national site dedicated to caregiver support, resources, guidance and connectivity through relation to and contribution of stories of families and patients across the life span.  

Medline Plus (Service of the U.S. National Library of Medicine and National Institutes of Health) - Reliable Information and Resources on Medical Conditions, Health Topics, Drugs and Supplements.


ePrognosis - a repository of published geriatric prognostic indices where clinicians can go to obtain evidence-based information on patients' prognosis.


​The National Consensus Project for Quality Palliative Care (NCP) - represents a groundbreaking initiative to further define and underscore the value of palliative care and to improve upon the delivery of palliative care in the United States. 


Culture Care Connection - is an online learning and resource center, developed by Stratis Health, aimed at supporting health care providers, staff, and administrators in their ongoing efforts to provide culturally-competent care


National Cancer Institute - A comprehensive and exhaustive site of resources and links available for those afflicted with any cancer diagnosis


Organizations/Resources


Hospice & Palliative Nurses Association


​American Academy of Hospice and Palliative Medicine


​Social Work Hospice and Palliative Care Network


Society of Palliative Care Pharmacists


Books


​When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests by Leana Wen and Joshua Kosowsky (2013)

A Bittersweet Season: Caring for Our Aging Parents--and Ourselves by Jane Gross (2012)

Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death by Joan Halifax (2009)

The Four Things That Matter Most - 10th Anniversary Edition: A Book About Living by Ira Byock (2014)

Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness, 5th Ed. by Hank Dunn (2009)

Full Catastrophe Living (Revised Edition): Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness by Jon Kabat-Zinn (2013)

Dying Well by Ira Byock (1998)

Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life by Maggie Callanan (2009)

Handbook for Mortals: Guidance for People Facing Serious Illness by Joanne Lynn, Janice Lynch Schuster, and Joan Harrold (2011)