Finding Care, Caregiving & Symptoms
Online resources
National Hospice and Palliative Care Organization
Definitive source for all things hospice and palliative care, including help for patients and families along with legislation information and updates.
Get Palliative Care: How to Get Palliative Care?
Includes tips on how to talk to your doctor about getting palliative care, a searchable directory by zip code, city, or state, and questions to ask your palliative care team once you find a provider.
Find hospices that serve your area and compare them. Includes a checklist to use when interviewing potential hospice agencies.
Nationwide hospice and assisted living directory. Find the care in your area through an easy search function.
Online community that pools patient feedback about the efficacy of therapies, side effects, and disease progression to the benefit of patients. Requires signing up and submitting personal information.
Compassion & Choices: Understanding Medical Aid in Dying
The nation’s oldest, largest, and most active nonprofit organization committed to improving care and expanding options for the end of life. Learn more about medical aid in dying, and get state-specific information and resources.
Family Caregiver Alliance: Hiring In-Home Help
Includes what to consider, pros and cons, interview questions for potential hired caregivers, and how to find professional caregiver help.
Use the searchable database to find licensed care managers and home care experts in your area. Can also search for clinicians practiced in facility referrals and placement, assessment, and guardianship.
Download guides and checklists such as “Hospital Admissions” for different types of patients’ transitions: from hospital to home or from home to a facility. The guides come in multiple languages, and the site includes videos as well.
Provides helpful resources on many caregiver topics such as avoiding burnout, diet and nutrition, emergency preparedness, travel tips, and dealing with conflict, as well as a comprehensive directory of eldercare services, home care agencies, and assisted living options.
Books & Write-Ups
Capossela, C., & Warnock, S. (1995) Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill. New York: Simon & Schuster.
Fersko-Weiss, H. (2017) Caring for the Dying: The Doula Approach to a Meaningful Death. Newburyport, MA: Conari Press.