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End-of-Life and Palliative Care

• National Hospice and Palliative Care Organization (NHPCO)

  NHPCO is the premiere non-profit organization representing the interest of hospice and palliative care providers. This site provides educational resources, programs and materials for professional providers and community interests.
• Colorado Center for Hospice and Palliative Care (COCHPC)

  COCHPC, a membership organization, provides vital information to consumers regarding palliative and end-of-life care. Additionally, an on-line database is available to help consumers locate hospice services.
• The Population-based Palliative Care Research Network (PoPCRN)

  PoPCRN conducts and disseminates high-quality research studies in palliative care settings. Additionally, the archived newsletters provide insight and information about palliative care issues.
• End-of-life / Palliative Education Research Center (EPERC)

  EPERC shares educational resource material among the community of health professional educators involved in palliative care education
• Center to Advance Palliative Care (CAPC)

  CAPC provides health care professionals with the tools, training, and technical assistance necessary to start and sustain successful palliative care programs in hospitals and other health care settings.
• American Academy of Hospice and Palliative Medicine (AAHPM)

  AAHPM, an organization of physicians and other medical professionals, is dedicated to advancement of palliative medicine through prevention and relief of patient and family suffering by providing education and clinical practice standards, fostering research, facilitating personal and professional development, and by public policy advocacy.
• End-of Life/ Palliative Care

  Bioethics Resources on the Web - This website contains a broad collage of annotated web links, and while the list is comprehensive, it is not totally inclusive. The listed resources provide background information and various positions on issues in bioethics.
• Dying Well
  Peace and Possibilities at the End of Life by Dr. Ira Byock (1997)

• The Four Things That Matter Most
  A Book About Living by Dr. Ira Byock (2004)
• Medline Plus: Palliative Care
  A service of the National Library of Medicine and the National Institutes of Health.
• GetPalliativeCare.org
  Palliative Care information, resources, and providers in the U.S.
• Palliative Care: Transforming the Care of Seriously Ill
  

  Palliative Care is the first book to provide a comprehensive understanding of the new field that is transforming the way Americans deal with serious illness. Diane E. Meier, M.D., one of the field's leaders and a recipient of a MacArthur Foundation "genius award" in 2009, opens the volume with a sweeping overview of the field. In her essay, Dr. Meier examines the roots of palliative care, explores the key legal and ethical issues, discusses the development of palliative care, and presents ideas on policies that can improve access to palliative care. Dr. Meier's essay is followed by reprints of twenty-five of the most important articles in the field. They range from classic pieces by some of the field's pioneers, such as Eric Cassel, Balfour Mount, and Elizabeth Kübler-Ross, to influential newer articles on topics such as caregiving and cost savings of palliative care. Amazon.com book description

Caregiving

• Caring Chatters
  Join the conversation at Caring Chatters for news, resources, and insights on caregiving.
• CaringBridge
  This site offers free, personalized websites that support and connect loved ones during critical illness, treatment and recovery. Families can post information of interest to their friends and family regarding the status of a loved one while receiving supportive, loving emails in return.
• Share The Care™
  The national website for Share The Care includes descriptive information about the model of care, testimonials from groups, organizational information, and contact information. Groups can register online providing important demographic and statistical information used to substantiate future funding requests.
• Lotsa Helping Hands
  Lotsa Helping Hands is a marvelous online, organizational tool for communities of care. A simple registration process results in a password protected website where groups can schedule caregiving tasks, post memos, access member contact information, send emails, and more.
• AARP State of Colorado
  AARP provides an abundance of relevant information for Colorado members regarding caregiving. Publications, articles, regional resources, and links to useful websites are available on this site.
• Family Caregiver Alliance
  FCA provides a variety of information and services related to the growing caregiving needs throughout our nation. Education, research, information, services, and caregiving events can be accessed through this website.
• Institute for Life & Care
  Caring for those who care for others at work and at home— "Strengthening Those Who Serve Others"—is Institute for Life & Care's unique and vital mission. They strive to become your premier resource for growth and renewal so that you don’t fall victim to "compassion fatigue" as a result of the stress of the work you do.
• Medicare
  The Official U.S. Government Site for People with Medicare
• National Alliance for Caregiving
  The National Alliance for Caregiving is dedicated to providing support to family caregivers and the professionals who help them and to increasing public awareness of issues facing family caregivers.
• Aging Network
  The Interactive Aging Network is a non-profit strategic consultancy. They are uniquely positioned to work with agencies to apply current information systems to streamline operations, enhance programs and expand the range of services offered.
• Older Women's League
  The Voice of Mid-life and Older Women.
• Woodward Respite Care Fund
  The mission of the Woodward Respite Care Fund is to offer support, encouragement, and hope to Caregivers, by providing resource information and a stipend to pay for temporary relief from caregiving responsibilities.
• AARP. Valuing the Invaluable: The Economic Value of Family Caregiving, 2008 Update. Insights on the Issues 13, November 2008.
• National Consensus Report on Caregiver Assessment: Volume I, Principles, Guidelines and Strategies for Change (2006).
• National Consensus Report on Caregiver Assessment: Volume II, Voices and Views from the Field (2006).
• Women and Long-Term Care: Where Will I Live and Who Will Take Care of Me? OWL The Voice of Mid-life and Older Women, Mother's Day Report 2006
• Prepare to Care: A Planning Guide for Families 2007
• A Dignified Life
  The Best Friends Approach to Alzheimer's Care, A Guide for Family Caregivers by Virginia Bell and David Troxel (Paperback - September 15, 2002)

  "A Dignified Life goes beyond the typical tips offered by most books and takes advantage of readers' instinctive desire to build friendships and taps into the intuitive aspect of caregiving that is part of our very nature. It provides a complete model for care built around creative and effective communication and meaningful activities and includes touching stories that demonstrate how the Best Friends method continues to improve the lives of both those who have Alzheimer's disease and those who care for them." Amazon.com book description

• An Uncertain Inheritance: Writers on Caring for Family
  by Nell Casey (Hardcover - November 13, 2007)

  "In this eloquent collection of essays-from the editor of the national bestseller Unholy Ghost: Writers on Depression-contributors reveal their experiences in caring for family through illness and death." Amazon.com book description

• Caregiving: The Spiritual Journey of Love, Loss, and Renewal
  by Beth Witrogen McLeod (Paperback - August 4, 2000)

  "Sooner or later it will touch us all: A family member or loved one becomes ill or disabled, and we step in to help. This is caregiving, and in this powerful, unique book, prizewinning writer and advocate Beth Witrogen McLeod leads us through the caregiving journey with unflinching authority and compassion. Framed by the author's personal odyssey as a caregiver and richly informed by the inspiring and poignant tales of others, Caregiving explores medical and financial problems, all aspects of spirituality, and such issues as depression, stress, housing, home care, and end-of-life concerns. A rare blend of powerful storytelling and practical information, Caregiving is a revelation." From the back cover of the book.

• Chicken Soup for the Caregiver's Soul: Stories to Inspire Caregivers in the Home, the Community and the World
  (Chicken Soup for the Soul) by Jack Canfield, Mark Victor Hansen, LeAnn Thieman, and Rosalynn Carter (Paperback - July 13, 2004)

  "A dose of inspiration for caregiving professionals and the millions of souls who help care for family and friends Over 54 million people in America help care for ailing or recovering family members and friends and millions more give of themselves to others through day care, eldercare, emergency and community service. While rewarding, care giving requires tremendous emotional, physical and spiritual stamina. Chicken Soup for the Caregiver's Soul offers a respite to those who give care through inspiring and uplifting stories about the work they do and its power to transform lives. Through awe-inspiring glimpses of real-life experiences of others, readers will find the motivation to overcome a challenging day, welcome recognition for their selfless contributions, and the encouragement to continue making a positive difference in others' lives." Amazon.com book description

• How Can I Help? Stories and Reflection on Service
  by Ram Dass and Paul Gorman (Paperback - March 12, 1985)

  "A treasury of compassion, made all the more valuable by its many examples of how individuals can interact for the better with people and, indeed, the world around them." --Norman Cousins, author of Anantomy of an Illness

• Learning to Fall: The Blessings of an Imperfect Life
  by Philip Simmons (Paperback - April 29, 2003)

  "Stricken with Lou Gehrig's disease (ALS) at age 35, Simmons left his position as a professor of English to return to his native New Hampshire. The author of numerous articles and one previous book, he has crafted essays out of his reflections, understanding, and observations of everyday rural life. Interwoven throughout is Simmons's theme of letting go as a necessary means of embracing life. With a knack for blending the esoteric and the mundane, Simmons presents his own insight into the well-known messages of Western and Eastern spiritual masters, such as Rumi, the Dalai Lama, Thomas Merton, Thich Nhat Hahn, and Meister Eckhart. As a family man with a degenerative disease, he writes with a marvelous understanding of acceptance, always knowing that tomorrow you still have to do the laundry." Copyright 2002 Cahners Business Information, Inc.

• Mothering Mother: A Daughter's Humorous and Heartbreaking Memoir
  by Carol D. O'Dell (Hardcover - April 1, 2007)

  "Compelling and heartrending, this personal memoir chronicles the author's decision not to put her mother, who has Alzheimer's and Parkinson's disease, in "one of those homes" and relays the far-reaching consequences this choice has on her entire family. Detailing the challenges of reversing roles and learning to mother one's own mother, this refreshing and entertaining autobiography will help those struggling with their own decisions on elder care in the home. It touches on the importance of relationships-such as how they impact our souls and beliefs about ourselves and the quality of life-and explores the larger questions of faith, hope, and ultimately death." Amazon.com book description

• Share The Care: How to Organize a Group to Care for Someone Who is Seriously Ill, (Revised and Updated)
  by Cappy Capossela, Sheila Warnock, and Sukie Miller (Paperback - October 26, 2004)

  "Taking on responsibility for short or long-term care for the seriously ill can be overwhelming and confusing. Detailing their personal experience with a dying friend, the authors demonstrate how the aphorism "many hands make light work" holds true. By developing "caring networks," the work is spread among friends, neighbors, and family members, alleviating stress on the primary caregiver and providing peace of mind to the patient. Part case study, part how-to, this book includes sample forms and checklists, allowing readers to use it as a springboard to create their own group and providing practical advice and reassurance." Copyright 1995 Reed Business Information, Inc.

• The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life (4th Edition) (A Johns Hopkins Pres Health Book)
  by Nancy L. Mace and Peter V. Rabins (Paperback - October 9, 2006)

  "Revised in 2006 for its twenty-fifth anniversary, this best-selling book is the "bible" for families caring for people with Alzheimer disease, offering comfort and support to millions worldwide. In addition to the practical and compassionate guidance that have made The 36-Hour Day invaluable to caregivers, the fourth edition is the only edition currently available that includes new information on medical research and the delivery of care." Amazon.com book description

• The Caregiver Helpbook, Powerful Tools for Caregivers
  by Marilyn Cleland, Vicki L. Schmall, Marilynn Studervant, and Leslie Congleton (Paperback - 2006)

  "Powerful tools for caregiving including reducing personal stress, changing negative self-talk, best communicating feelings and needs to others, setting limits and asking for help, dealing with emotions such as anger, guilt, depression, making tough caregiving decisions and dealing with difficult situations." Editorial Review, Amazon.com

• The Comfort of Home: A Complete Guide for Caregivers (Comfort of Home, The)
  by Maria M. Meyer and Paula Derr (Paperback - January 25, 2007)

  "Burnout - the complete drain of physical, spiritual, and emotional reserves - occurs when a caregiver slips into exhaustion or depression. More and more frequently, the responsibility of caring for the chronically ill child, the disabled spouse, or the aging parent falls on a family member. From the decision to be a caregiver to dealing with day-to-day activities, this guide provides help with every aspect of home care. Also included in this edition are a checklist of tasks, a chapter on self-care and avoiding caregiver burnout, a glossary, and list of helpful resources." Amazon.com book description

• The Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent by Barry J. Jacobs

  Caring for a parent whose health is in decline turns the world upside down. The emotional fallout can be devastating, but it doesn't have to be that way. Empathic guidance from an expert who's been there can help. Through an account of two sisters and their ailing mother--interwoven with no-nonsense advice--The Emotional Survival Guide for Caregivers helps family members navigate tough decisions and make the most of their time together as they care for an aging parent. The author urges readers to be honest about the level of commitment they're able to make and emphasizes the need for clear communication within the family. While acknowledging their guilt, stress, and fatigue, he helps caregivers reaffirm emotional connections worn thin by the routine of daily care. This compassionate book will help families everywhere avoid burnout and preserve bonds during one of life's most difficult passages." Amazon.com book description

• Passages in Caregiving by: Gail Sheehy
  "Like the 44 million other Americans caring for an ill or elderly person in their homes, prolific writer Sheehy looked after her late husband Clay Felker while he battled cancer for more than a decade. Having already chronicled almost every stage in baby boomer life (most notably in 1976's Passages), Sheehy offers an empathetic, well-researched guide to an unfamiliar, often scary role to which boomers are being initiated, outlining eight stages of caregiving from "Shock and Mobilization" to "The Long Good-Bye." Along with doctors and nurses, home caregivers have become the backbone of the (admittedly broken) U.S. health-care system, and an increasingly important part of a patient's decision-making team. As such, Sheehy contends, caregivers are in desperate need of knowledge and support, and this resourceful manifesto provides it, including practical steps to take, strategies for each point of care, likely obstacles for both patient and caregiver, and a lucid explanation of what's to come: "My intention is to illuminate the challenges and rewards inherent in the caregiving passage-to identify universal patterns in the chaos and give the journey a form that makes sense." Sheehy achieves her goal ably, providing a steady beacon during a time of great sadness and overwhelming responsibility." Amazon.com Book description
• The Illness Narratives: Suffering, Healing, and the Human Condition by Arthur Kleinman, Ph.D.
  " A psychiatrist at Harvard Medical School, Kleinman vitalizes his book with quotations from patients and members of the healing professions. This is a scholarly study but accessible to a lay audience. Writing of "suffering, healing and the human condition," the author observes the dichotomy between technological advances in medicine and the actual treatment of the ill, handicapped and dying. Profoundly moving reports illuminate the deprived lives of social outcasts, shunned and stigmatized, whose needs are not met by the medical community. There are also instructive descriptions of how an empathetic doctor can help "humans" (not cases) to regain health or, in extremis, die a "good death." Kleinman argues persuasively the need to reform today's medical-care system to more fully serve humanity." Amazon.com book description
  

Compassion Fatigue   

• The Bridge, Edwin H. Friedman
  At some point in our life, we may suffer from compassion fatigue. We know we want to help someone who is suffering, but what are the consequences for us if we give unconditionally with out thinking? Read The Bridge, by Edwin H. Friedman and explore your willingness to accept or decline the rope.
• Schwartz Rounds
  Schwartz Center Rounds is a multidisciplinary forum where caregivers discuss difficult emotional and social issues that arise in caring for patients.
• Compassion Fatigue: Coping With Secondary Traumatic Stress Disorder in Those Who Treat the Traumatized. Figley CR, ed. New York: Brunner/Mazel; 1995.
• Leading From the Heart. Gilley K. Boston: Butterworth-Heinemann; 1997.
• The Alchemy of Fear. Gilley K. Boston: Butterworth-Heinemann; 1998.
• The Miracle of Mindfulness: An Introduction to the Practice of Meditation. Nhat Hanh T. Boston: Beacon Press, 1987.
• Trauma and the Therapist: Countertransference and Vicarious Traumatization in Psychotherapy With Incest Survivors. Pearlman LA, Saakvitne KW. New York: Norton; 1995.
• The Truth About Burnout. Maslach C, Leiter MP. San Francisco: Jossey-Bass; 1997.
• Wherever You Go, There You Are: Mindfulness Meditation in Everyday Life. Kabat-Zinn J. New York: Hyperion, 1994.

Moral Distress: The Elephant in the Room

• American Association of Critical-Care Nurses. (2004). The 4 A's to Rise Above Moral Distress. American Association of Critical-Care Nurses.
• Austin, Wendy, et. al. (2003). Unable to Answer the Call of our Patients: Mental Health Nurses' Experience of Moral Distress. Nursing Inquiry, 10 (3), 177-183.
• Austin, Wendy, et. al. (2005). To Stay or To Go, To Speak or Stay Silent, To Act of Not to Act: Moral Distress as Experienced by Psychologist. Ethics and Behavior, 15 (3), 197-212.
• Everly, George S. & Mitchell, J.T. (1997) Critical Incident Stress Management (CISM). A New Era and Standard of Care in Crisis Intervention. Ellicott City, MD: Chevron Publishing.
• Gutierrez, Karen M. (2005). Critical Care Nurses' Perceptions of and Responses to Moral Distress. Dimensions of Critical Care Nursing. September/ October, 24 (5), 229-241.
• Kalvemark, Sofia, et. al. (2004). Living with Conflicts-Ethical Dilemmas and Moral Distress in the Health Care System. Social Science and Medicine, 58, 1075-1084.
• McCarthy, Joan & Deady, Rick. (2008). Moral Distress Reconsidered. Nursing Ethics, 15 (2), 254-262.
• Powell, L.H., Shahabi, L., & Thoresen, C.E. (2003). Religion and Spirituality: Linkages to Physical Health. American Psychologist, 58, 36-52.
• Sullivan, M.D. (2003). Hope and Hopelessness at the End-of-Life. American Journal of Geriatric Psychiatry, 11, 393-405.