When 99 percent of physicians at Stanford reported barriers to having end of life conversations with their patients, VJ Periyakoil, MD, director of Palliative Care Education and Training, had an epiphany. Why not turn the power over to patients to initiate those discussions? As a clinical associate professor of medicine, Periyakoil knows that physicians have little time to have these monumental discussions with patients. What if she could devise a way to make that discussion easier to begin and quicker to complete?
That's the premise behind the Stanford Letter Project—a print and electronic letter template that asks individuals to answer a series of straightforward questions. Their answers automatically populate a letter they can share with physicians and family members to initiate a discussion about what matters most to them at life's end. The Letter Project is free and found online at http://med.stanford.edu/letter.html or through a mobile app for iPhones and android devices. The questions are available in seven different languages—English, Spanish, Hindi, Mandarin, Tagalog, Russian and Urdu—to make end-of-life decision-making understandable to people in their first language.
Based on extensive research, the Letter Project is designed to help people voice the key information their doctor needs to provide end-of-life care that is congruent with their values and wishes. To make it culturally acceptable to diverse Americans, Periyakoil worked with patients and families from several ethnic groups to design the template. It takes the legal verbiage of the advance directive and distills it into understandable, meaningful language. Rather than asking a person if they wish to prolong their life, the Letter Project breaks this idea down into specific questions. Do you want to be on a breathing machine? Do you want to be pain free? Do you want to die at home? Do you want artificial feeding? Do you want your family to follow your wishes? The intuitive program then takes their responses and translates them into a letter the patient can print and share.
The letter offers certain advantages over advance directives, said Periyakoil. Advance directives do not ask how a patient prefers to handle bad news, or how to handle a situation where the family does not want the doctor to disclose the diagnosis to the patient. The letter can also offer guidance when the family wants something different from what the patient wants—as can often happens when the patient is too sick and vulnerable to have a voice.
"Part of my motivation in doing this is to empower patients to not wait for someone else to initiate the conversation," said Periyakoil, who specializes in Geriatrics, Hospice & Palliative Medicine.
When given a letter, physicians can easily review its contents, confirm their patient's wishes and then scan the letter into EPIC (using the barcode). "It will only take the physician a few minutes to do this," said Periyakoil. "Having written the letter, the patient is already primed and thus you're having a very focused discussion."
In reading through the more than 2,500 letters that individuals have posted to the Letter Project website since its launch in April, Periyakoil has found some trends in what patients are saying to their doctors. About one in three don't want dialysis; one in two don't want artificial feeding; and one in five don't want to die at home. Most opt for comfort care which mirrors what physicians say they want for their own end-of life wishes, said Periyakoil.
When she surveyed Stanford physicians two years ago, she found that most physicians want to die gently and comfortably with dignity at the end of life. "Eighty-eight percent of our doctors wanted to be DNR." But when you look at what happens to patients at the end of life, most are subjected to procedures they don't want. "Why are we giving care to patients that we really don't want for ourselves?" she asked.
Periyakoil's drive to create this application stems from her desire to simplify the conversation between physician and patient. "It's meant to be a starting point for end of life discussions," she said, "to give physicians the opening they need."
Periyakoil is now innovating the Letter Project even further. In the new version, a patient's answers will translate into an advanced directive and a letter. Both can be printed, shared with physicians and included in a patient's electronic medical record. The new version includes additional questions to more accurately reflect a patient's legal wishes for care. For example, if the respondent selects these two options: "If my heart were to stop beating, do not attempt to restart it" and "I do not want to be on a breathing machine," then the app will automatically select the choice "Do not prolong care" on the advanced directive. Letter Project 2.0 will be available by the end of the year.
"When physicians simply ask, do you want us to prolong your life, their patients don't always understand what they mean," said Periyakoil. "If you turn this information into very granular choices, then it's very easy for patients to tell you what they want."
On October 12, Periyakoil and The Stanford Letter Project were recognized with the Practice Innovation Challenge Award from the American Medical Association (AMA) and Medical Group Management Association (MGMA). The award showcases out-of-the-box solutions that help physicians and medical practices thrive in the changing health care landscape. It comes with a $10,000 prize and the opportunity to develop an educational module to be shared with practices across the country.