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End-of-Life Care Case Report: Stanford University Department of Medicine

The Stanford University Department of Medicine launched a new approach to advance care planning to empower all adults to take the initiative to talk to their physician about what matters most to them at life's end. With extensive research and the guidance from multi-ethnic, multi-lingual patients and their families, they developed a letter template to guide people through the process of making important advance planning decisions.

The template is a complement to an advance directive that also help patients to:

  • talk about what matters to them most on a personal level unrelated to their medical care.

  • document how they like to handle bad news.

  • describe their preferences for how they make medical decisions.

  • give granular input on what treatment interventions they want and do not want at the end of life.

  • document their preference for palliative sedation.

  • know what to do when the proxy decision maker wants to do something different from the patient.

In addition, the letter format is more personalized and accessible for many patients. It is written in straightforward language that they can understand and is free of medical and legal jargon. Once the template was tested with hundreds of patients and families from various ethnic and racial backgrounds and in many languages, they began spreading it to different venues. This became the Letter Project.

Participants in The Letter Project included high school students who talked with their families about their end-of-life decisions, older adults who filled out the letter at local community centers, and the patients at Stanford. The Letter Project has received overwhelmingly positive response from everyone involved. Many of the patients who participated said they appreciated the opportunity to convey their decisions. Families and patients developed a greater understanding of what end-of-life care entails, and also developed deeper connections with each other as they talked through what they want and don't want at the end of life. The physicians learned that when patients are given the opportunity to really think about what is important and share the information in a letter format, they feel more confident that their care team will heed their decisions.

The Letter Project's success was measured by patients completing the letter, their satisfaction with the letter, and how their care was personalized and guided by the letter. Over 2000 people have used the online letter tool to complete their letters. Many organizations around the world are also using this simple tool to help their patients. The Letter Project has been featured on PBS, in the New York Times, in the Washington Post, and throughout numerous media outlets.

At Stanford Medicine, a large multi-disciplinary committee is working to implement the letter both in the in-patient and out-patient settings. The letter template is now available in all hospital units and services and can also be ordered in bundles. Each printed letter has a unique barcode that can be scanned into the patient's electronic health record (EHR). The letter is going to be made a part of the “Goals of Care” bundle.

There is a free Letter Project App, available online. There is also a Letter-to-Directive tool that has a simple question which, when answered, will allow the user to print out their auto-filled advance directive form and the letter. Eventually, the Letter Project hopes to create a secure, HIPAA-compliant repository of 100,000 letters that can serve as examples for others interested in writing their own letter.

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