Scenario I: Best Resources for Helping Caregivers Handle Care End-of-Life Issues
Situation: Charles Hart, a consultant to a community agency, has been asked to help identify useful resources for the agency's caregiver education and support program staff to help caregivers address end-of-life issues more effectively.
FCA and Other Resources:
- FCA Fact Sheet: End-of-Life Decision-Making
Big issues confront us when we think about our own death or that of someone we love. Our attitudes and beliefs about religion, pain, suffering, loss of consciousness, and leaving behind those we love come into play. This Fact Sheet is not intended to provide a comprehensive planning tool but instead provides an outline of areas that need to be considered when faced with end-of-life issues.
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=401
- Respecting Choices Program
This is an online training program with six modules that teaches professionals how to facilitate basic advance care planning discussions with patients and families. Source: Gundersen Lutheran Medical Foundation
http://respectingchoices.org/
- End-of-Life: Helping With Comfort and Care Guide
This guide assists individuals and families by providing an overview of end of life issues that are commonly faced by loved ones. Readers of this booklet will find helpful information on providing comfort care, finding direct care, understanding and planning healthcare decisions, things to do when someone passes away, getting the assistance for your grief and valuable resources. A hardcopy of the booklet is also available. Source: National Institute on Aging.
http://www.nia.nih.gov/health/publication/end-life-helping-comfort-and-care
- Caregiving at Life's End Program
This is an intensive training program teaches professionals and volunteers to help caregivers find meaning, purpose and value in the end-of-life caregiving experience. Provides participants with training materials needed to implement an effective caregiver training program in their community. Source: Hospice Institute of the Florida Suncoast
http://caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2324&chcategory=30&chitem=4
- The Role of Family Caregivers During End of Life Process
This article discusses the various roles family caregivers can play during the dying process.
http://www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/the-role-of-family-caregivers-article.aspx
- FCA Fact Sheet: End-of-Life Choices: CPR & DNR
A better understanding of cardiopulmonary resuscitation, or CPR, can be helpful when it comes to making this difficult choice before a crisis occurs. This Fact Sheet specifically addresses the process of CPR and describes the DNR (Do Not Resuscitate) form, the legal document used to indicate to medical professionals your or your loved one's wishes.
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=397
- FCA Fact Sheet: End-of-Life Choices: Feeding Tubes and Ventilators
Families caring for a chronically ill loved one may eventually face very difficult decisions regarding medical treatment for the person in their care. The progression of many conditions Alzheimer's disease, Parkinson's disease, Amyotrophic Lateral Sclerosis or post-stroke, for example may lead to two of the most common such decisions: whether to use feeding tubes when a chronically ill person can no longer chew and swallow his or her food, and whether to use a ventilator when someone can no longer breathe on his or her own. The Fact Sheet provides caregivers with an understanding of the decisions surrounding the use feeding tubes and/or ventilators.
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=399
- Physician Orders for Life Sustaining Treatment (POLST)
This tool can be used for effectively communicating the wishes of seriously ill patients to have or to limit medical treatment as they move from one care setting to another. Source: Ohio Health & Science University
http://www.ohsu.edu/polst/
- Family Caregiver's Guide to Hospice and Palliative Care
The United Hospital Fund's Next Step in Care published a "Family Caregiver's Guide to Hospice and Palliative Care." Next Step in Care is a national campaign sponsored by the United Hospital Fund that aims to engage medical and long term care facilities, home health agencies, and patient advocacy groups to address a range of transition-related issues. The guide provides family caregivers with insight on the decision-making process when assisting a loved one's transition into hospice and palliative care. Source: United Hospital Fund
http://www.nextstepincare.org/uploads/File/Guides/Hospice/hospice.pdf
- Questions About Hospice Care
The document is a checklist of questions to ask as the caregiver tries to find the right hospice service for the loved one.
http://www.caregiverslibrary.org/Portals/0/QuestionsAboutHospiceCare.pdf
- FCA Fact Sheet: End-of-Life Choices: Holding on and Letting Go
The Fact Sheet discusses the shifting emotions and considerations involved in holding on or letting go. Addressing these sensitive issues ahead of time will allow a person with a chronic illness to have some choice or control over his or her care, help families with the process of making difficult decisions, and may make this profound transition a little easier for everyone concerned.
http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=400
- Facing Death (video)
A candid and insightful film, Facing Death provides viewers a glimpse into the difficult end-of-life choices individuals face during their stay at The Mount Sinai Medical Center in New York. This groundbreaking film follows patients and their loved ones as they make health decision between continuing treatment or comfort care. Source; Public Broadcasting System Frontline
http://www.pbs.org/wgbh/pages/frontline/facing-death/
- Preparing for the Death of a Loved One
The impending death of a loved one can be an emotional time, but knowing what to expect during a loved one's final days can help you prepare to handle the event.
http://www.caregiverslibrary.org/caregivers-resources/grp-end-of-life-issues/preparing-for-the-death-of-a-loved-one-article.aspx
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