BALTIMORE, MD—About 50 million people—roughly a sixth of the US population––undergo surgery every year. Although most of these operations are successful, complications can occur, and family members may be faced with making medical decisions for a severely ill patient who cannot express his or her own wishes.
Even when a patient has an advance care planning document such as a living will, family members may find it doesn’t give them the guidance they need to answer questions that arise. Rebecca A. Aslakson, MD, PhD, of Johns Hopkins University School of Medicine in Baltimore recalls one woman who said her husband’s living will stated his desire not to be artificially fed or maintained––but those measures had been necessary just to prepare him for his operation.
This woman, like many others whose relatives have undergone major surgery, felt unprepared afterward to make medical decisions. “Family members face a huge dilemma because they don’t know if they are following their loved one’s wishes,” Aslakson says.
In contrast, Judi Miller, whose mother and son were both treated for critical illnesses, says, “Our family had had meaningful discussions before my mother’s and son’s illnesses, so we knew what they wanted,” says Miller. “But from my interactions with other surgical ICU patients and family members, I realized we were the exception.”
Aslakson met Miller, who is a member of the Johns Hopkins Hospital patient and family advisory council, when caring for Miller’s son in the surgical ICU in 2009. Their conversations led to PCORI-funded research aimed at helping patients and families make and communicate decisions before major surgery. Aslakson, who leads the project, notes that input from surgeons, patients, and families has dramatically changed the original plan, giving the research a broader potential impact.
Advance Care Planning
The project’s goal is to create a video that facilitates advance care planning for patients undergoing major surgery. Aslakson and her team believe this video-based tool is the first designed specifically for patients facing major surgery. They plan to finalize the video over the next few months.
Previous research showed that patients and families who have used decision-support tools for advance care planning feel less conflicted when they face difficult decisions afterward, says Aslakson. Other research suggests that video-based tools may promote patient and family decision making more effectively than other types of tools. Previous studies, however, have not evaluated decision-support tools for advance care planning in patients facing major surgery.
“The advance care planning video prompts patients to have discussions with family members before surgery to clarify who makes decisions if the patient can’t speak for himself or herself. It asks patients, if that person is speaking for you, what should she or he say? What are your goals and values? Are there treatments that you want? Are there treatments that you definitely don’t want? The video encourages patients and family members to continue these important conversations with their surgical team,” says Aslakson.
We made very significant changes in the project in response to what patients and families told us was important to them. This is the epitome of patient-centered research.
Patient and Family Feedback
Miller, along with patients and family members recruited by Johns Hopkins surgeons participating in the study, are guiding the research. They helped design the project, provided feedback on existing decision-support tools for advance care planning, helped identify topics the video should address, and will be involved in reviewing and disseminating the project’s results.
Aslakson and her team originally intended to target the video specifically to patients facing major cancer surgery. However, after getting feedback from patients, families, and surgeons and other doctors and nurses at Johns Hopkins, the team decided to broaden the intended audience to all patients undergoing major surgery. “This video will be appropriate for patients having any type of major surgery,” Aslakson says.
Another major adjustment modified the project’s final phase. The original plan had been to recruit patients after their preoperative consultation with their surgeon. They would then be randomly assigned to watch either the new video about advance care planning or a general video about having surgery at Johns Hopkins.
“Our hypothesis was that patients seeing this video would have less anxiety and depression around the time of surgery and postoperatively than patients who saw the general video,” Aslakson says. Feedback from patients and families, however, led them to rethink this approach.
“In August 2014, we rented a booth at the Maryland State Fair,” explains Aslakson. “We invited people to stop by and chat with us if they or a loved one had had surgery. Over 10 days, we talked with more than 350 people. We showed them story boards of the video and asked them what outcomes they felt would be most important after seeing it.”
The answers were a surprise. Aslakson says, “People told us the most important outcome would be that the video enabled them to have a meaningful discussion with their physician about their treatment wishes and goals. Anxiety and depression were much less important outcomes.”
This observation struck a chord with Aslakson. As an anesthesiologist and critical care physician who is also a palliative care specialist, she says she sits “in two medical universes.” Particularly in surgical care settings, she says, the healthcare system “tends to default to providing aggressive treatment. Many surgical care providers haven’t been trained to have conversations about patients’ preferences.” Palliative care specialists, by contrast, encourage patients and families to consider and express their preferences for medical care, but it is rare for these clinicians to be involved in patients’ care as they prepare for surgery.
As a result of the feedback obtained at the state fair, Aslakson and her team revised their plan for testing the video. Patients will now be recruited before, not after, their preoperative surgical consultation. After they watch either the advance care planning video or the general video, their preoperative visits with the surgeon will be audio-recorded. The recordings will be analyzed using the Roter Interaction Analysis Scale (RIAS), a validated tool used worldwide to analyze the content and quality of medical dialog, particularly between patients and providers.
The study team now includes co-investigator Debra Roter, DrPH, a professor of public health at Johns Hopkins. She developed RIAS and is a world-renowned expert in studying the content and quality of patient-provider communication.
Aslakson says, “Our new hypothesis is that the advance care planning video, compared with the general video, will substantively change the content and quality of discussions between the surgeon, patient, and family members.”
“We made very significant changes in the project in response to what patients and families told us was important to them,” she adds. “This is the epitome of patient-centered research.”
Utilizing Advance Care Planning Videos to Empower Perioperative Cancer Patients and Families
Principal Investigator: Rebecca A. Aslakson, MD, PhD
Goal: To create a video to help patients facing major surgery and their families plan for difficult questions that may arise, and evaluate the effectiveness of the video in improving discussions with surgeons about advance care planning
PCORI Research Topic: Cancer
Posted: June 8, 2015