How we want to die is the most important and costly conversation Americans aren't having. A 2021 study published in the Journal of Psychosocial Nursing and Mental Health Services found that while ninety percent of people think it is important to talk about end-of-life wishes with their loved ones, only 27 percent have done so.
Stanford Medicine research found that patients from all ethnic backgrounds feel that is very important for them to have end-of-life conversations with their doctors and their family members. However, patients do not quite know how to initiate these conversations.
CLICK ON THE LINKS BELOW FOR ADVANCE CARE PLANNING RESOURCES FOR SPECIFIC POPULATIONS.
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NON-ENGLISH-SPEAKING PERSONS
The Conversation Project offers guidance in English, Spanish, and Chinese.
PREPARE For Your Care has two programs with video stories in English and Spanish. Provides advance directives for all 50 states in both English and Spanish. Some states may also have advance directives in additional languages.
The Stanford Letter Project This free website offers letter template tools available in eight languages and formats with real patient videos.
Five Wishes Aging with Dignity’s Five Wishes advance care planning program provides an advance directive and guide available in 30 languages and in Braille.
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AFRICAN AMERICANS
The African American Spiritual and Ethical Guide to End-of-Life Care - What Y'all Gon' Do With Me? Guide prepared by Heart Tones addressing historical, cultural and spiritual factors that influence African Americans’ decisions about end-of-life care and advance care planning.
Family, fear, and faith: Helping Black patients with end-of-life decisions An article from the Association of American Medical Colleges. African American families tend to choose life-prolonging interventions when faced with advanced, terminal conditions rather than focusing on comfort care and quality of life. Here's why — and how doctors can help.
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BLIND PEOPLE
Five Wishes Aging with Dignity’s Five Wishes advance care planning program provides an advance directive and guide available in 30 languages and in Braille.
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CANCER PATIENTS
National Cancer Institute The National Cancer Institute seeks to improve the lives of all people through cancer research. The website provides information about various types of cancer, as well as coping with advanced cancer.
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PEOPLE WITH DEVELOPMENTAL DISABILITIES
Thinking Ahead: My Way, My Choice, My Life at the End This workbook was created by California advocates for developmental disabilities and is widely available. It is a good tool for anyone who wants a simple, easy-to-follow workbook.
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PEOPLE WITH A DEMENTIA/ALZHEIMER’S DIAGNOSIS
Over time, the symptoms of Alzheimer’s and related dementias will make it difficult to think clearly. Planning as early as possible enables you to make decisions and communicate those decisions to the right people.
End-of-life Decisions: Honoring the Wishes of the Person with Alzheimer’s Disease This brochure from the Alzheimer’s Association addresses issues a family may face when a person with dementia nears the end of life.
A Dementia Diagnosis: Preparing for Your Care A tool helping people coping with a dementia diagnosis, to prepare a list of questions for their doctors. Compassion & Choices is a nonprofit organization in the United States working to improve patient rights and individual choice at the end of life.
Planning After a Dementia Diagnosis Alzheimers.gov provides a wealth of information on a variety of topics related to Alzheimer’s and dementia.
Conversation Starter Kit: For Caregivers of People with Alzheimer’s or Other Forms of Dementia The Conversation Project created a specific guide for advance healthcare planning for people with a dementia diagnosis.
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YOUTH AND CHILDREN
Conversation Starter Kit: For Caregivers of a Child with Serious Illness The Conversation Project created a specific guide for advance healthcare planning for caregivers of children with a serious illness.
Young People Facing End of Life Care Decisions From the National Cancer Institute
Children with Cancer: A Guide for Parents From the National Cancer Institute
