Rare Diseases: A Compassionate Guide For Teenagers For End-Of-Life Care
Aging with Dignity, a Tallahassee, Florida-based non-profit organization with the mission to:
“affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. The life and work of Mother Teresa of Calcutta served as the inspirational foundation of Aging with Dignity.”
The organization introduced in the late 1990’s, “Five Wishes”, which helps people plan and receive the kind of care they want at the end-of-life. Five Wishes helps one with expressing how one would like to be treated if seriously ill and is not able to speak for oneself. Five Wishes helps one to decide about medical, personal, emotional, and spiritual preferences. According to the Aging with Dignity website, Five Wishes meets the legal requirements in 42 states to aid people creating and implementing a plan for the type of end-of-life care desired by a person. Five Wishes lets one’s family and healthcare providers know:
• Who you want to make healthcare decisions for you when you can’t make them
• The kind of medical treatment you want or don’t want
• How comfortable you want to be
• How you want people to treat you
• What you want your loved ones to know.
Aging with Dignity published in 2012, a guide titled, “Voicing My Choices: A Planning Guide for Adolescents & Young Adults”, that helps adolescents and young adults identify the choices that they can decide upon when faced with a rare disease or terminal illness. The guide is designed to aid them with communicating their preferences and desires to friends, family, and caregivers. It helps to express:
“your thoughts about how you want to be comforted, supported, treated, and remembered … it was developed using feedback from young people living with a serious illness …”.
In September 2014, the Institute of Medicine, publishes a Report, “Dying in America”, that shows that adolescents are competent enough to talk about their end-of-life wants and that they prefer to be engaged in conversations about their care.
New York Times March 30, 2015, article titled, “Teenagers Face Early Death, on Their Terms”
Wiener,L., Zadeh, S., Battles, H., Baird, M.D., Ballard, E., Osherow, J., & Pao, M. (2012). Allowing adolescents and young adults to plan their end-of-life care. Pediatrics,130(5), 1-9. doi:10.1542/peds.2012-0663.
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