When most people are asked how they would like to die, they'll tell you they want to go gently and comfortably, with family at their side. But few actually get their wish for a very simple reason: They can't muster the courage to have a frank conversation with their doctor and their family members on how they want to end their days.
The result is that decisions about end-of-life care are often left to others who, while well-intentioned, may opt for treatments that can cause suffering and pain and lead to an undignified end, says Stanford palliative care expert V.J. Periyakoil, MD.
“I tell people that proxy decision-making is one situation where those who love you can hurt you,” Periyakoil told me for a story on the project in Stanford Medicine magazine. “They do it out of love and misguided good intent. Because of our love or duty, they may end up doing things that will harm you. We see this all the time. Your doctors won’t be able to help you in a situation like this unless you speak your mind and document your wishes.”
To help bridge this divide, Periyakoil has initiated The Letter Project, which encourages people to write a letter in which they express what matters to them most and how they would like to finish out their days. They can mail or email the letter to their physicians and also share it with family members as an entrée to these difficult conversations.
“The goal here is to empower patients and families to have these conversations within their family, at their leisure, when they are most comfortable,” says Periyakoil, director of the Stanford Palliative Care Education and Training Program. “What we find from patients is that one of the barriers is their own family members because it’s such an awkward, uncomfortable topic.”
Her own research shows that most doctors are uncomfortable initiating these conversations. And when forced to make end-of-life decisions, they'll often opt for heroic interventions, sometimes at great human and financial cost. And that is the case, even though doctors wouldn’t choose these same treatments for themselves.
Similarly, family members, acting out of a sense of love, guilt, duty or a desire to redeem themselves, may likewise choose all-out measures, even if these are counter to what their loved ones want.
To avoid these common scenarios, she launched the Letter Project two years ago, providing detailed templates and sample questions that individuals can use in devising their own letters. For instance, letter writers are asked whether they would want certain interventions, such as feeding tubes and breathing machines, and whether they prefer to die at home or the hospital or with the aid of hospice care. The letter also prompts writers to think about what matters most to them, about important future milestones in their lives and who they want to make decisions for them when they are unable or unwilling to do so themselves.
Sample letters, which are available in multiple languages, can be found on the project’s website. The project’s mobile app is available at the iTunes store and at the Google Play Store.
Writers also can use the Letter to Directive form to complete an advance directive in just a few minutes by answering some simple questions. The tool will auto-fill the advance directive and push it back along with the letter, which can then be sent to the physician.
Previously: Precision health: a special report from Stanford Medicine magazine, Stanford Letter Project, which helps users have end-of-life discussions, now available for mobile devices, How would you like to die? Tell your doctor in a letter, Stanford doctor on a mission to empower patients to talk about end-of-life issues and On a mission to transform end-of-life care, The importance of patient/doctor end-of-life discussions
Illustration by Christian Northeast