Each year, about 2.6 million people die in America. Although past research has shown that 7 out of 10 of us prefer to die at home, an estimated 70 percent of people die in the hospital, nursing home or long-term care facility. The disconnect between where people die and how they would prefer to spend their final days often happens because loved ones and doctors don’t know their end-of-life wishes. Only 20 to 30 percent of Americans have completed advanced directives.
It’s not easy to talk about death, and the terminology used in advance directives can be confusing. I remember having to complete the form with my husband shortly before the birth of my first child. Despite having been in a relationship for 12 year, we had never discussed end-of-life issues. Imagining the scenarios that might lead to either of us being in a life-threatening situation was an extremely emotional exercise — especially as we awaited our son’s arrival. Did we want doctors to use every intervention possible to save our life? What if it meant sacrificing our quality of life? Did we want to be on life support? If so, how long?
We eventually turned to a friend, who was also a physician, to help us sort through the process. But we didn’t talk to our own primary care doctors and, to this day, our doctors have never asked us if we have an advance directive or about our end-of-life preferences. And this isn’t unusual. Recent research from VJ Periyakoil, MD, director of Stanford’s Palliative Care Education and Training, shows that most doctors struggle to talk with patients about what’s important to them in their final days, particularly if the patient’s ethnicity is different than their own.
In the latest 1:2:1 podcast, Periyakoil discusses her study findings and why it’s critical for all adults to complete an advance directive and initiate a conversation about their end-of-life wishes with their doctor and family. To get these conversations started and help patients navigate the emotionally-charged process, she launched the Stanford Letter Project, which provides templates in a range of languages asking patients simple questions about how they want to die.
Listen to the full podcast to learn more about the project and hear from Stanford Letter Project users about how they want to spend their final days.
Previously: How would you like to die? Tell your doctor in a letter, In honor of National Healthcare Decisions Day: A reminder for patients to address end-of-life issues, Study: Doctors would choose less aggressive end-of-life care for themselves and On a mission to transform end-of-life care