For few cancer patients, using an online tool for learning about end-of-life medical decisions and developing an advance directive document did not lead to psychological distress, claims a new study.
"One thing we noticed is that many patients with advanced cancer had not had these conversations," said lead author Dr. Michael J. Green of the humanities and medicine departments at Penn State College of Medicine in Hershey, Pennsylvania.
"When we talked to the oncologists about it, a response we heard again and again is, 'it's not appropriate at this time, it's going to make them anxious, take away their hope'," Green told Reuters Health.
They used an interactive decision aid with audio and video elements called "Making Your Wishes Known: Planning Your Medical Future," (MYWK) which is available online.
It includes education modules on common medical conditions that can result in decisional incapacity, as well as medical treatments often introduced in life or death situations. Patients can choose a spokesperson, prioritize values and goals, match treatment options with priorities and generate a printable advance directive document articulating their wishes.
For the study, the researchers divided 200 advanced-stage cancer patients with anticipated life expectancy of two years or less into two groups. One engaged in advanced care planning with the online tool, while the other used only a state-approved advance directive form and American Hospital Association educational materials.
Those who used the MYWK online tool spent an average of 70 minutes in their advance care planning, compared to 26 minutes in the comparison group.
Before and after the advanced planning sessions, researchers measured the patients' anxiety, hopefulness and hopelessness with validated questionnaires. Hopelessness levels have been linked to suicide risk for the terminally ill, the authors note.
Neither group had a decrease in hope or an increase in hopelessness after their advance care planning sessions, according to results in the Journal of Pain and Symptom Management.
Anxiety levels decreased slightly for the MYWK group and stayed the same for the comparison group. Knowledge of advance care planning and feelings of self-determination increased slightly for both groups.
"People worry about what's going to happen, 'am I going to be a burden, how are people going to know what I want'," Green said. "'If I get sick how am I going to get the treatment that I want and not get treatment I don't want'."
Terminally ill people are often already thinking about death, so there is little reason to avoid having an explicit conversation about it, he said.
"Many health professionals suggest that (advance care planning) may make patients anxious, however like this study there is no evidence this is the case - there is some evidence suggesting the opposite," said Dr. Karen Detering of the Respecting Patient Choices Program at Austin Health in Melbourne, Australia.
"In my experience I think the health care professionals often feel helpless, and are often reassured when they see patients are helped by (advance care planning)," Detering, who was not involved in the new study, told Reuters Health by email.
"In our experience - only approximately half of the patients who are offered and undertake (advance care planning) will complete formal advance directives, but many others will have a useful discussion regarding what they would want in the future," she said.
Doctors who initiate these conversations can do a lot to decrease patient stress and anxiety, but many physicians are hesitant and are also pressed for time, he said. The MYWK decision aid was modeled on what a conversation with your doctor should look like, he said.
"To have a meaningful conversation about these end of life concerns takes a lot of time and physicians are incredibly busy, they often put off initiating these conversations," Green said.
The low levels of anxiety and hopelessness even before the planning sessions were surprising, although they did not include patients with severe depression, he said.
"The presumption of the medical profession is unless you tell us otherwise we're going to do everything," Green said. "It does put some responsibility on the patients to speak up and say what matters to them."