Talking about and planning for end-of-life care can be difficult for patients and their families. Often these conversations occur too late or even not at all. Recently, Stanford University Department of Medicine developed a project that empowers patients to take the initiative to talk to their physician about what matters most to them at the end of their lives.
Without end-of life decisions on file, a patient’s care decisions may be made by family members and the care team and not reflect what the patient actually wants. The AMA’s STEPS Forward™ collection of practice improvement initiatives can help physicians facilitate a conversation with a patient about end-of-life decisions before an emergency situation arises and those desires are left unknown.
Stanford, which contributed this STEPS Forward module after winning the AMA-MGMA Practice Innovation Challenge, conducted research and enlisted the help of multi-ethnic, multi-lingual patients and their families to create a letter template that guides patients through the process of making important advanced planning decisions they might otherwise have put off.
The Letter Project
The template, called “the Letter Project,” allows patients to talk about what matters to them most on a personal level unrelated to medical care. Patients also use the template to document how they like to handle bad news, describe their medical decision preferences, give input on the treatment interventions they want and don’t want at the end of life, and document their preference for palliative sedation.
The letter format is personalized and accessible, written in straightforward language that is easily understood and free of medical and legal jargon that can be confusing to patients.
After successful testing with hundreds of patients and families from various ethnic and racial backgrounds and in many languages, Stanford began spreading the Letter Project to different venues. Participants have included high school students who made their preferences known to their families, older adults who filled out the letter at local community centers and patients at Stanford. And so far, the response has been very positive, Stanford reports.
Many of the participants said they appreciated the opportunity to discuss their decisions and that they and their families developed a greater understanding of what end-of-life care entails. They also said the process resulted in deeper connections with each other as they talked through the decisions.
Physicians also gained much from the process, learning that when patients are given the opportunity to talk about what is important and share information in a letter format, they feel more confident that their care team will adhere to the decisions that they made.
Now, at Stanford, 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 at Stanford and through the STEPS Forward module. Each printed letter has a unique barcode that can be scanned into the electronic health record (EHR).
There is a free Letter Project app available and Stanford hopes to create a secure, HIPAA-compliant repository of 100,000 letters that can serve as examples for patients interested in writing their own.
More practice resources
The module on planning for end-of-life decisions with your patients is one of eight new modules recently added to the AMA’s STEPS Forward collection of practice improvement strategies to help physicians make transformative changes to their practices. Thirty-five modules now are available, and several more will be added later this year, thanks to a grant from and collaboration with the Transforming Clinical Practices Initiative.
