Table 1 Recipe categories, supporting elements, and representative key informant comments

Tools

Patient needs

“Very few decision aids have embraced the consumer’s needs and frame of reference.”

“Focus groups help define content. Do interviews with patients and caregivers to hear ‘what freaks them out.’”

“It’s not realistic that everyone will have the conversation. You’ve got to meet people where they are.”

Surgeon needs

“A sick patient, surgeon has info, and their life is in surgeon’s hands, and many people will do anything surgeon says.”

“I'm worrying about the degree to which a surgeon can extinguish or redirect something that he or she finds uncomfortable.”

“Hard for the provider to divorce themselves from being the agent of a potential intervention.”

Setting impact

“Settings such as using aids in a community vs. clinic, urban vs. rural are important to look at.”

“These are discussions that should be at the dinner table, not in the ICU.”

“There is an impression that DNR means do not treat – particularly in surgical world because surgery is very invasive.”

Ingredients

Current aids

“Many aids are not successful in overcoming the barriers in discussing end-of-life care such as thinking about death.”

“Traditional decision aids are very long and no one likes to talk about death for very long.”

“Videos require a remarkable amount of critical scrutiny in regards of bias and appropriate pilot testing with stakeholders.”

New content

“The absolute most important piece of paper is a medical power of attorney. This is the person who is willing to speak up and say ‘I know X and she would want . . .’”

“Decision aids open up dialogue and a communicative environment where one can express things.”

“Any aids that get people to know and self reflect, communicate between patient and health care provider – those are good things.”

Patients’ values

“To me it is a process where you develop a deeper understanding of where you are. It is thinking about your preferences and needs.”

“Advance care planning should be a process to prepare for making potential decisions. This is more useful than considering hypothetical situations and making treatment choices.”

“Advance care planning is not just whether you want a particular treatment but identifying what goals and values are important and aligning treatments with them.”

Tips for success

Keep it simple

“Is to the point but leads to something that you can measure down the line and honors choices, so people can get the care they want at the end of life.”

“You need an intervention that is short and sweet. For instance, is short enough to watch it there with the surgeon.”

“Spectrum of aids that swings from way too general to incredible layers of micromanaging.”

Make it adaptable

“Functionality, tailoring of information are good. Will get constant feedback and have iterative changes over time.”

“Describing CPR in words may be difficult for people with low health literacy to understand. Video testimonials gets around a lack in health literacy.”

“Huge issue around health literacy and how to adapt aids to patients and families with low health literacy.”

Show its effectiveness

“The gold standard question to ask is, do these decision aids lead to better patient outcomes?”

“Would encourage that measurement of effectiveness be highlighted a lot, but you have to measure something that matters to people who are answering the questions.”

“Missing a lot of data on implementation. If something works in a study on effectiveness, how do you implement it, achieve a desired outcome, and sustain it?”