Teenagers Face Early Death, on Their Terms (NY Times)
Last spring, Karly, then 19, developed congestive heart failure. Her renal arteries were 90 percent blocked. As Karly lay in intensive care at the National Institutes of Health, a psychotherapist who had worked with the family for years approached her mother, Tammy, with the new planning guide.
You can learn more from Aging with Dignity here.“Do we talk about dying?” Mrs. Koch recalled wondering. “Maybe Karly hasn’t thought about it — do we put it in her head?”“We had already buried a child and had to guess what she wanted,” she continued. “So we wanted Karly to have a voice.”Karly’s reaction? “She said it wasn’t like we were telling her something she didn’t already know,” Mrs. Koch said.The guide used by Karly Koch and AshLeigh McHale is called “Voicing My Choices.”
While there are end-of-life workbooks for young children and their parents, as well as planning guides for older adults, this is the first guide created for — and largely by — adolescent and young adult patients.
The intention was to create a way for them “to make choices about what nurtures, protects and affirms their remaining life and how they wish to be remembered,” said Lori Wiener, a social worker and principal investigator on the research that led to the planning guide.
Aging with Dignity is a national non-profit organization with a 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.
Aging with Dignity founder Jim Towey served as Mother Teresa's friend and legal counsel for 12 years and was a full-time volunteer in her home for people with AIDS. Her tender care and concern for all a person’s needs – medical, emotional and spiritual – served as the inspiration for Five Wishes, America’s most popular living will.
Aging with Dignity introduced Five Wishes in Florida in 1997, and a year later, to the nation. Dubbed “the living will with a heart and soul,” Five Wishes today meets the legal requirements in 42 states and has helped literally millions of people plan for and receive the kind of care they want. Five Wishes is unique among all other advance directives and living wills because it is user-friendly and easy to complete. (from their website)