How it works
The Letter Project is designed to help all adults think about the end-of-life issues they — and their families — may confront in the future. A letter template on the project’s website includes a series of questions about what matters most to individuals; their important future milestones, values and preferences for care; and who they want making medical decisions for them when they are unable or unwilling to make decisions for themselves.
For instance, it asks writers to talk about how they handle bad news in the family — whether they are open about issues or want to shield certain family members from troubling information. And it asks them to consider how their family makes medical decisions in general, whether it is a matter of consensus or whether certain individuals hold more sway — information that can be valuable to the patient’s medical team.
Letter writers are prompted to specify whether there are certain interventions they would not want at the end of life, such as breathing machines, artificial feeding tubes, dialysis or hospitalization. Patients also can indicate what they do want — whether it’s to be pain-free, to die at home or at the hospital, to receive their physician’s help in dying gently and naturally, and/or to die with the benefit of hospice care.
Letter writers can specify whether they want their stated intentions to be binding or whether they would allow family members to override their wishes. That is distinct from an advance directive, a legal document in which individuals spell out their end-of-life instructions, which designated decision-makers are required to follow under California law, says David Magnus, PhD, director of Stanford’s Center for Biomedical Ethics.
“People can say in this letter that if there is a conflict, you must do what I say or do what my loved one says. That is really unique and critically important to address,” Magnus says.
Individuals can use the website to email the letter to their physicians or can print it out and mail it to their doctors. Numerous people in the United States have written letters to their doctors in various languages, and a group in the United Kingdom recently began using the Letter Project. The project’s director, clinical associate professor of medicine V.J. Periyakoil, MD, also hopes individuals will use the letters as a springboard for conversations with family members about what matters most to them and how they want to spend the last chapter of their lives.