These are additional resources that supplement the links referenced in Home Hospice Navigation: The Caregiver’s Guide. The website listed below to assist you in obtaining additional information and support to navigate home hospice care.
MedlinePlus is the National Institutes of Health’s Web site for loved ones, their families, and friends. Produced by the National Library of Medicine, the world’s largest medical library, it brings you information about diseases, conditions, and wellness issues in language you can understand. MedlinePlus offers reliable, up-to-date health information, anytime, anywhere, and for free. This is a trusted site and contains valuable information and can be accessed from a variety of different electronic devices. MedlinePlus
Here are links to websites that may be of interest to you.
- Center for Medicare & Medicaid Services
- Hospice Foundation of America
- Mesothelioma Cancer Information
- Mesothelioma Center
- National Association for Home Care & Hospice
- National Hospice and Palliative Care Organization
- The Initiative for Pediatric Palliative Care
- The National Hospice and Palliative Care Association/CaringInfo
- The Worldwide Hospice and Palliative Care Alliance
- The World Health Organization
Talking about Advance Directives
- Aging with Dignity
- Cake an interactive end-of-life planning website that helps people plan ahead for healthcare, legal, funeral, and legacy decisions. A checklist guides users to create and/or upload important documents (like POLST) that express their final wishes. Users can share secure access to their end-of-life plan with anyone who has an email address. Cake’s mission is to empower everyone to receive end-of-life care that aligns with their values and wishes.
- Care Conversations this is a planning and preparation tool to guide you through the Advance Directives
- Death with Dignity National Center
- Informed Medical Decisions Foundation
- Let’s Have Dinner & Talk About Death
- Let’s Have Dinner & Talk About Death – Jewish version
- POLST (Physician Orders for Life-Sustaining Treatment)
- PREPARE for Your Care is a step-by-step program with video stories to help you: Have a voice in YOUR medical care, Talk with your doctors, Give your family and friends peace of mind, put your wishes in writing.
- The Conversation Project
- Medicare Benefit Policy Manual
- National Academy of Medicine (formerly Institute of Medicine)
- Breeda Miller – speaker & caregiver trainer
- Family Care Navigator: State-by-State Guide 1-800-455-8016
- Caring for the Caregiver
- The Caregiver’s Voice
Caregiving Information & Education
- AARP Senior Care Cost calculator and a variety of resources
- Area Agency on Aging 1-800-677-1116
- How Hospice Works – Medicare
- Locating a Medicare Certified Hospice provider
- Mesothelioma Guide
- National Patient Safety Foundation – Ask Me 3
- State Health Insurance Assistance Programs (SHIPs)
- The Brittney Maynard Fund
- Respecting Choices Advanced Care Planning
- Just in Case Planning is a completely free, secure, and easy to use form to help you create and communicate your “just in case” plans with family and loved ones
- My Personal Insights invites people being cared for or their family members to create a one-page informational sheet that allows their caregivers to quickly learn non-medical personal information about them
Books & Articles
Atul Gawande’s book, “Being Mortal: Medicine and What Matters in the End” (Metropolitan Books, 2014). Atul Gawande examines his experiences as a surgeon, as he confronts the realities of aging and dying in his patients and in his family, as well as the limits of what he can do. PBS has a full-length episode documentary “Being Mortal” on the FRONTLINE series.
The following websites review a variety of apps and help you determine which is best for you.