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Palliative Care, Hospice and End of Life

Disclaimer: These resources are regularly reviewed to ensure that links still work correctly and the resources listed continue to be helpful to our visitors. If you find that a link isn't working or information is incorrect or if you'd like to have your own organization listed here, please email infocenter@lls.org. Because we want to be sure that our visitors find the most relevant resources, we encourage you to visit the organization's website for more detailed information.

2-1-1

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. Services vary from community to community.

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 Americans 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.

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

http://www.211.org/

2-1-1 Canada

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. Services vary from community to community.

Examples of service referrals include:

  • Health services and support
  • Financial and social assistance
  • Housing and utility help
  • Food assistance and meal programs
  • Senior services and home care
  • Government program assistance
  • Parenting and family programs
  • Disability support services
  • Volunteer organizations
  • Newcomer services
  • Mental health support

Certain sections of Canada (check the website for availability in your area)

http://www.211.ca

American Cancer Society (ACS)

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
  • American Cancer Society’s Wig Bank - Provides free wigs from limited supply to needy patients suffering hair loss due to cancer treatment. Intended for those with insufficient insurance coverage for cranial prostheses (wigs).

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

800-227-2345 http://www.cancer.org/

ARCH National Respite Network and Resource Center (ARCH)

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.

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

703-256-2084 https://archrespite.org/

Caring.com

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.

Caregivers

800-973-1540 or Website https://www.caring.com/

Caring Connections

Caring Connections, a program of the National Hospice and Palliative Care Organization, is a national consumer and community engagement initiative to improve care at the end of life.

  • Toll-free number provides consumers with information about advance care planning, caregiving, end of life care and bereavement
  • Offers free resources and information to help people make decisions about end-of-life care and services before a crisis
    • Free, downloadable, state specific templates for advanced health care directives
  • Brings together community, state and national partners working to improve end-of-life care through a national campaign called It's About How You LIVE

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

800-658-8898 http://www.caringinfo.org/i4a/pages/index.cfm?pageid=1

Children's Hospice International

To create public awareness of the needs of children with life-threatening conditions and their families, and of what children's hospice care can do to meet those needs; to include hospice perspectives in all areas of pediatric care and education; to include children with life-threatening conditions and their families in existing and developing hospice, palliative, end-of-life, and home care programs; to create and maintain a sustaining resource base.

  • Community-based palliative (comfort-based) care is available concurrent with disease treatments aimed at cure
  • A continuum of medical, psychological, social, and spiritual support services, respite care, education and advocacy, and bereavement support for families if cure is not attained
  • Services are provided in the most appropriate setting based on family choice, rather than the funding stream
  • Publications devoted to home care, palliative pain and symptom management, the development of hospice care services and related subjects.

Children with life-threatening conditions and their families

800-242-4453 http://www.chionline.org

Compassion & Choices

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.

People with life-threatening illness

Website https://compassionandchoices.org/

Get Palliative Care

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.

Patients with life-threatening illness and their caregivers

Website Only http://getpalliativecare.org/

Hospice Foundation of America

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.

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

800-854-3402 http://www.hospicefoundation.org

International Association for Hospice & Palliative Care (IAHPC)

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.

Palliative care and hospice workers

866-374-2472 http://hospicecare.com

Memories For Surviving Kids

To encourage the friends and family of deceased parents to write letters for the surviving children.

  • Provides advice assembled by psychotherapists and grief counselors on how best to write and present letters for surviving children.

Children who have experienced the death of a parent

Website only http://www.mfsk.org/

National Hospice and Palliative Care Organization (NHPCO)

To lead and mobilize social change for improved care at the end of life.

  • Membership organization representing hospice and palliative care programs and professionals in the U.S.
  • Advocates for the terminally ill and their families
  • Develops public and professional educational programs and materials
  • Convenes meetings and symposia on emerging issues
  • Provides technical informational resources to its membership
  • Conducts research
  • Monitors Congressional and regulatory activities

Patients, caregivers, professionals

703-837-1500; Caring Connections 800-658-8898 or 877-658-8896 (multilingual) http://www.nhpco.org/

PREPARE for your care

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

Patients, caregivers, survivors, healthcare professionals worldwide

Website or info@prepareforyourcare.org https://prepareforyourcare.org/welcome