It is often an awkward situation, in large part because many patients only see the advance-directives process in terms of suffering and death. That does not have to be the case.
“When physicians approach advance-care planning from the aspect of living well and quality of life, then patients feel reassured and then they want to engage with you and tell you what matters most,” according to internist VJ Periyakoil, MD, director of palliative care education and training at Stanford University School of Medicine.
Dr. Periyakoil wrote the “Planning for End-of-Life Decisions with Your Patients,” online physician education module.
The module is part of the AMA STEPS Forward™ collection of more than 50 practice-improvement education modules. It is part of the AMA’s strong support of advance directives and the help it provides to physicians on end-of-life matters, including guidance from the AMA Code of Medical Ethics.
Medicare also has helped spur interest in advance directives, with payment starting in 2016 for every patient to have a voluntary consultation on the matter with a physician or qualified health care professional. This benefit has been widely used, with about 14,000 providers billing almost $35 million in the first year.
A recent review of 150 studies of advance directives found more than a third of Americans have them, in some form or another. That leaves a large majority—many with the most immediate need for advance directives—without written instructions that will protect their intentions or provide for trusted family or friends to make care decisions if they are unable.
A focus on what matters most
The CME credit-eligible module from the AMA is based on the Stanford University Department of Medicine’s Letter Project. The module’s central, downloadable element is a three-page letter template that in plain language guides the patient through expressing life values and goals, as well as care instructions such as palliative sedation.
The letter template is available in eight languages and written at a fifth-grade reading level. Patients can complete the letter by themselves or be aided by patient navigators or other clinicians. At Stanford, completed letters are scanned into the patient’s electronic medical record using a barcode.
Though not a formal advance directive or living will—those are governed on a state-by-state basis—the letter can be used as a worksheet to help patients express their wishes in simple language. A physician can include the letter in a patient’s medical record as patient-generated health data.
The module provides detailed advice about how to initiate the conversation. Dr. Periyakoil said her approach is to “normalize” the process by saying, “I ask this of all my patients.”
In that way, “patients don’t feel that they are singled out for this.” Her goal, she assures them, is “to provide you with the best possible care and to do that it really helps me to understand what matters most to you.”
The letter provides check boxes for standard end-of-life care questions and space for naming the individuals who can make medical decisions if the patient is unable, but starts and devotes most of its space for patient to write about what’s most important to in terms of what’s important in life:
- What matters most to me (examples: being at home, going to church, playing with my grandchildren).
- My important future life milestones (examples: my 30th wedding anniversary, my grandson’s graduation, birth of my granddaughter).
- This is how we prefer to handle bad news in my family (examples: we talk openly, we shield the children, we do not like to talk about it).
- This is how we make medical decisions in our family (examples: I make the decision myself, my entire family has to agree on major decisions, my daughter who is a nurse makes the decisions).
- Other information about my values or end-of-life wishes I want you to know about.
“The physician can then move in confidence with clinical care that is in sync at all times with what the patient wants. Physicians often give medical advice or make care plans in a vacuum, “and we know very little about the patient as a person,” said Dr. Periyakoil.
“It is incredibly important to know everything there is to know about the disease,” she added. “It is equally important to know about the patient’s life goals and values, so that the care we provide is guided by what matters most to the patient. .”
AMA’s STEPS Forward is an open-access platform featuring more than 50 modules that offer actionable, expert-driven strategies and insights supported by practical resources and tools.
Based on best practices from the field, STEPS Forward modules empower practices to identify areas or opportunities for improvement, set meaningful and achievable goals, and implement transformative changes designed to increase operational efficiencies, elevate clinical team engagement, and improve patient care.
Several modules have been developed from the generous grant funding of the federal Transforming Clinical Practices Initiative (TCPI), an effort designed to help clinicians achieve large-scale health transformation through TCPI’s Practice Transformation Networks.
The AMA, in collaboration with TCPI, is providing technical assistance and peer-level support by way of STEPS Forward resources to enrolled practices. The AMA is also engaging the national physician community in health care transformation through network projects, change packages, success stories and training modules.