‘Letter Project’ Makes End-of-Life Wishes Clear to Their Doctors and Their Family Beth Baker - New America Media
go to original September 18, 2017

The Letter Project is a simple and easy to use form that patients can use to write to their doctors and their family about what matters most to them at life's end. (Letter Project)

“I do not want to be a burden on my family… I would prefer to be placed in a nursing home or whatever kind of facility and have my family come visit.”

“I do not want to be on a breathing machine. I do not want to be artificially fed. I would like to be pain free. I would like to be at home. Do I want hospice care? Absolutely.”

“I want to die gently and naturally, and I want to die at home with hospice and of course my family.”

These are from a few of the thousands of letters that were written by participants in The Letter Project, developed by researchers at Stanford University to give people a simple way to express their end-of-life preferences.

The project addresses a critical need. According to the 2014 Institute of Medicine report, Dying in America — Improving Quality and Honoring Individual Preferences Near the End of Life, 70 percent of older adults are too ill to make decisions about their treatment when they are nearing the end of their lives.

Given that, the importance of having an easily accessible written record of patient wishes is key to improving the quality of end-of-life care. Yet despite decades of public and physician education and outreach, most Americans still do not have advance health directives and of those who do, the documents “rarely affect treatment decisions,” the report noted.

Advance directives, which vary slightly by state, include a living will, specifying the treatment you want at the end of life, and a health care power of attorney, designating who will make decisions for you if you are unable to do so. They may also include a physician-signed “do not resuscitate” or “allow natural death” and other orders you request.

A July study in the journal Health Affairs found that only 37 percent of U.S. adults had an advance directive. Without one, people are more vulnerable to ending their lives in institutional settings, attached to machines.

“Many patients tell me this is not what they want,” said V.J. Periyakoil, MD, a geriatric doctor and palliative care specialist who founded The Letter Project. “There’s a high emotional toll and a high fiscal toll on the family. If it’s going to help your loved one, fine, but sometimes the only one it’s helping is the hospital who is charging really high fees.”

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