Palliative Care, Hospice and End of Life

Everyone in the U.S. (check the website for availability in your area)

2-1-1 is the telephone number of a call center that offers information and provides referrals to health and human services for everyday needs and in times of crisis. Examples of service referrals include:

• Basic human need resources: food banks, clothing, shelters, rent assistance and utility assistance
• Physical and mental health resources: medical information lines, crisis intervention services, counseling, drug, and alcohol intervention
• Employment support: unemployment benefits, financial assistance, job training, transportation assistance and education programs
• Support for older adults and persons with disabilities: home healthcare, adult daycare, congregate meals, Meals on Wheels, respite care, transportation, and homemaker services
• Support for children, youth, and families: childcare, family resource centers, summer camps and recreation programs, mentoring, tutoring and protective services
   

People affected by a cancer internationally; programs and services offered to patients and caregivers residing in the United States

In the U.S., ACS is a community-based voluntary health organization dedicated to eliminating cancer as a major health problem.

• Provides educational materials both online and in print about cancer, including blood cancers, as well as related information on topics such as diet, exercise, complementary and alternative medicine, and disease statistics
• Offers support services via online discussion boards and in-person support groups through local chapters
• Cancer Survivors NetworkSM, a global online community, transcends geographic boundaries and builds bonds among cancer survivors and caregivers through shared experiences and feelings
• Road to Recovery, a program offered locally by some chapters, has volunteer drivers who transport patients to and from treatment appointments
• Hope Lodges are temporary housing accommodations for patients traveling far from home for treatment. There are more than 30 lodges.

Patients and caregivers in the U.S. needing assistance in finding respite care in their community

To assist and promote the development of quality respite and crisis care programs in the U.S.; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums

• Offers a website tool, National Respite Locator, to help caregivers and professionals locate respite services in their community
• Offers A Consumer’s Guide for Family Caregivers with information and guidance regarding the various types of respite care and where they are found.

Caregivers

To provide information and support for people caring for aging parents, spouses and other loved ones.

• Provides elder care information and support, including information about senior living options and in-home care
• Offers an online section covering a wide variety of relevant caregiving-related topics (e.g. insurance, benefits, coping)
• Offers one-on-one guidance with a Family Advisor at no cost.

People in the U.S. seeking information about hospice and end-of-life care

CaringInfo is a program of the National Hospice and Palliative Care Organization that provides free resources to educate and empower patients and caregiver to make decisions about serious illness and end-of-life care and services. 

• Offers free resources and information in multiple languages to help people understand curative, palliative, hospice, comfort, and bereavement care topics and on tools, guides, and resources on decisions about end-of-life care
• Free, downloadable, state specific templates for advanced health care directives and other resources
   

People with life-threatening illness

To improve care, expand options and empower patients to chart their end-of-life journey.

• Offers a variety of programs, tools and resources (including in Spanish) to help people with life-threatening illnesses find the support, opportunity and courage to live their remaining time on their own terms.

Families caring for children with serious illness and clinicians who support them. 

To orient and empower parents and others caring for children with serious illness, by providing resources and tools that reflect the experience and perspective of families and clinicians.

• Shares the voices of families through videos, podcasts, blog posts, and downloadable guides.
• Provides guidance on decision-making, advocating for your child, working with the medical team, caring for siblings, and more.
• Offers monthly educational events on a variety of topics.
• Website available in English and Spanish.

Patients with life-threatening illness and their caregivers

To increase the availability of quality palliative care services for all people living with serious illness. 

• Provides information about palliative care: specialized medical care which provides patients with relief from symptoms, pain and stress
• Explains how palliative care helps people with specific diseases
• Provides a directory of hospitals with palliative care teams
• Offers videos, blog, printed material and other resources including a quiz to help individuals know if palliative care is right for them.

End-of-life care resources for professionals, patients and families

Hospice Foundation of America provides leadership in the development and application of hospice and its philosophy of care with the goal of enhancing the U.S. health care system and the role of hospice within it.

Palliative care and hospice workers

To collaborate and work to improve the quality of life of patients with advanced life-threatening conditions and their families, by advancing hospice and palliative care programs, education, research, and favorable policies around the world.

• Works with individuals and organizations in developing multiple strategies targeted to raise awareness among the affiliates of the civil society and decision makers so that palliative care is provided and available to those individuals in need, to increase access and availability to analgesics and other medications, to increase the provision of services by adequately trained professionals and caregivers.

Individuals in the US with a terminal illness or end-stage disease

To help people with life-limiting illnesses preserve their images, stories, and wisdom by creating personalized movies to pass on to their loved ones.

• Creates unique legacy movies at no cost to families. The final product is an edited movie saved on a USB drive and mailed to the family.

Patients, caregivers, survivors, healthcare professionals worldwide

To ensure all people are prepared and able to make informed medical decisions for themselves and their loved ones and to have a voice in their health care.

• Offers free easy-to-read advance directives for all 50 states in both English and Spanish
• Information is available in a step-by-step program with video stories
• Provides pamphlets, question guide, and movie with toolkit for group events
• Offers a newsletter and links to related research topics