Stanford Medicine Newsletter Updates For the Local Community

 

The most important letter you may write

VJ Periyakoil started the Letter Project to encourage end-of-life conversations between physicians and patients.

   

Recent research by V.J. Periyakoil, MD, has shown that doctors struggle in starting discussions about how their patients want to spend their last days. While polls suggest that most Americans would prefer to die at home without life-prolonging interventions, doctors are more likely to pursue aggressive treatments for terminally ill patients — despite the fact that doctors would not choose an aggressive course for themselves, her research shows.

Because of this disconnect, Periyakoil has started the Letter Project, encouraging patients to write a letter to their doctor, explaining what matters most to them in their last days.

Periyakoil, clinical associate professor of medicine at Stanford Medicine, is a nationally recognized leader in geriatrics and palliative care. She directs the Stanford Palliative Care Education & Training Program and the Stanford Hospice & Palliative Care Medicine Fellowship Program.

Q: Why did you decide to start the Letter Project?

Periyakoil: I have seen too many patients die after being subjected to high-intensity treatments that were ineffective and burdensome. I found that most patients do want to engage their doctors in end-of-life conversations but have no idea how or when to begin. The obvious solution was a simple letter template that patients could use to tell their doctors in simple words what they wanted for themselves at the end of life.

Q: What are the major barriers that prevent doctors from having frank conversations with their patients about end-of-life issues?

Periyakoil: We did a study of more than 1,000 doctors and identified the top barriers: Doctors say that death is a taboo topic in many cultures and struggle to conduct end-of-life conversations with patients who have low English proficiency and health literacy, and those with deeply rooted cultural, religious and spiritual beliefs about end-of-life planning. In some cultures, the family insists that the doctor withhold the terminal diagnosis from the patient. In other cultures, people believe that when and how a person dies are in the hands of a higher power. Others lack trust in doctors and the medical system. Faced with these charged situations, doctors, who are not systematically trained to conduct these sensitive conversations, tend to avoid further dialogue.

Q: Why is it important for a patient, rather than the doctor, to take the lead in end-of-life conversations?

Periyakoil: It is a classic situation of each stakeholder waiting for the other to take the lead or waiting for the “right time.” This procrastination costs us dearly, as the physical and emotional toll on patients is enormous. Our research has shown that doctors (including me) choose a “do-not-resuscitate” status if we become terminally ill as we wish to die naturally without burdening our families. This begs the question of why dying patients are subjected to invasive measures that we (doctors) mostly do not want for ourselves. We thought that it was important to empower patients to take the lead in this process.

Q: When doctors don’t have clear guidance from patients, how do they usually handle end-of-life situations?

Periyakoil: There is a tipping point in the trajectory of every illness when treatment is ineffective and burdensome. Beyond this tipping point, high-intensity treatments do not prolong life with quality but rather prolong the dying process. But our health-care system does not often identify this tipping point, and odds are that most patients will be subjected to high-intensity treatments regardless of their values and preferences for care.

Q: How is the letter different from an official document, such as an advance directive?

Periyakoil: The letter addresses some important practical issues that are not currently addressed in the advance directive document. It clarifies the patient’s stance on palliative sedation should pain and symptoms become refractory. Most importantly, it offers guidance to the doctor about what to do when the health-care proxy overrides the patient’s stated wishes. We created an app that uses the letter template to generate pre-filled advance directives. By answering a few simple questions, patients are able to complete both the official advance directive and the letter (as a supplement to the advance directive) and to send the documents to their doctors to be saved in their medical records.

The Stanford Letter Project app is available at the App Store and GooglePlay.

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