Three years ago, I wrote a story on research showing that most physicians would choose a do-not-resuscitate or "no code" status for themselves if they were terminally ill, yet they tend to pursue aggressive, life-prolonging treatment for patients facing the same prognosis.
It was a stunning disconnect and one that, along with about six years of additional studies and research, led to the design of the Stanford Letter Project by Stanford palliative care expert and researcher VJ Periyakoil, MD. From multiple studies, she learned that doctors don't know what patients want for end-of-life care and patients don't know how to tell them. Often, the patient is too sick to make decisions and their proxy decision-makers are left with a difficult task. So, Periyakoil and colleagues developed a data-backed method that could improve this crucial communication.
This new model, which was created and has been tested at Stanford, is now being shared online by two national physician's organizations for others to follow. It appears in the form of a case study (membership required) published by the American College of Physicians, which explains how to implement the model and how the team developed it. A similar free model is available on the American Medical Association's Steps Forward website.
It includes samples of patient letters to health care teams about "what matters most" and strategies for communicating personal values and choices for care. Periyakoil said the letter has been tested extensively with patients from diverse backgrounds, who have said they find it easy to use and meaningful. The research also addresses common questions, such as "What is the best time for patients to complete the letter?," "Who can help the patient write the letter?" and "How can we best prepare the family members to understand the patient's wishes?"
I recently spoke with Periyakoil about the project and her hope for its future uses.
Why did you develop this model?
We want to make these materials available so that anyone can use them. We believe our product is the best because we co-designed it with patients from diverse backgrounds who communicate in a variety of languages. We believe, based on our years of research, that it's most important to start with the patient and the family instead of thinking of them as an afterthought. We know it's a problem that patients don't have a way or opportunities to tell physicians what matters most to them. We're presenting a product that will help do that, and has been helping some Stanford patients already.
How did you test it?
We have conducted multiple studies for the letter project. One study was led by three of our medical students as part of their clinical scholarship program. We involved both the patient and their proxy (a family member or friend who has the authority to represent them if they become incapacitated). We had the patient write their letter about what they would want for end-of-life care. Then we had the proxy write what they thought the patient would want. We then had them check each others letters. This is where the 'aha' moments happen. Most patients want less invasive treatments and want to die gently, they don't want to burden the family. The family, out of love or honor, will often push for more treatments. Who prevails? We were very, very delighted to see that the patients prevailed.
How did you first become interested in end-of-life conversations?
I think that we as physicians know a lot about, and focus on, what is the matter with the patient; we know very little about what matters to the patient. For seriously ill patients, we do a lot of procedures and treatments that are both ineffective and burdensome. Ultimately, our patients die and doctors feel frustrated that we are not effective in treating them. Why are all these patients getting ineffective treatments that they don't want? We wanted to change that and the letter project approach has been an effective way to do that.