A Letter to Your Doctor Gives Instructions for End-of-Life Care

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A unique project is underway at Stanford Medicine in Palo Alto, California. Thousands of patients are writing letters to their doctors expressing exactly what they do and do not want as they approach the end of their lives. Based on a template developed by Dr. VJ Periyakoil, director of palliative care education and training at Stanford University School of Medicine, the letters encourage patients to focus not only on medical issues, but also on what they value and what they want to achieve or experience before they die.

The “What Matters Most Letter Project,” began with the goal of empowering “all adults to take the initiative to talk to their doctor about what matters most to them at life’s end.” Research has shown that doctors know these conversations are important, but have difficulty initiating them or openly discussing things such as end-of-life sedation, pain control, and where the patient wants to die. The template guides the letter writer through a series of statements that explore these questions as well as her and her family’s values, communication style and spiritual beliefs.

A fierce advocate of frank discussions about end of life, Dr. Periyakoil recently shared her views on end-of-life care in the feature “Doctors and End of Life Discussions” on PBS. Speaking about the fact that many of the 2.6 million Americans who die each year die in the hospital while undergoing aggressive and often futile care, she said, “Dying is not being in the ICU, 20 tubes coming out of you…That’s not what dying should be. Dying is a social, family, personal event. We really need to free dying from the hospital and take it back into the community where it belongs.”

Dr. VJ Periyakoil
Credit:PBS

Dr. VJ, as she is known to her patients, also speaks frankly about the lessons to be learned from being present with the dying — from pulling back from the medicalized approach to death that is so widespread in the United States. “I’ve taken care of thousands of thousands of patients,” she says, “and every single situation you learn something that you did not know before.”

Dr. Periyakoil hopes to help others learn, too. By sharing videos of patients reading their letters aloud on the Letter Project website, she aims to encourage people of all ages to explore their desires around end-of-life care with their doctors and their families.  As Ronnie Belcher, a participant in the project, said “One of the worst things in the world you can have happen to you is being on your deathbed and you’re putting the burden of life-altering decisions on a family member who has no clue what you do and don’t want.”

Hopefully, this project  will help ease that burden for many and facilitate more open discussions around what it means to live and die well.

Watch a video about the What Matters Most Project below.