SAN DIEGO, Calif.—Concerned that many patients with advanced cancer enter into palliative radiation without fully understanding its risks and benefits, a multidisciplinary team led by a radiation oncologist have created a video decision aid to help.
Kavita V. Dharmarajan, MD, MSc, Assistant Professor of Radiation Oncology and Palliative Medicine at Mount Sinai Medical Center, spearheaded the development of the video during her training at Memorial Sloan Kettering Cancer Center. A study reported here at the American Society of Clinical Oncology's Quality Care Symposium of 42 hospital patients referred for palliative radiation showed that it was effective in improving patients' understanding (Abstract 29).
“We found that patients had several preconceived notions about palliative care and palliative radiation treatment, even after having a full consult with their physician, and we were able to correct the misconceptions by showing patients a simple, short video,” Dharmarajan said.
The poster presentation was reflective of two big trends at the symposium: palliative care issues and patient decision-making. Indeed, more than 30 presentations focused on each topic, and seven presentations were specifically about decision aids to help patients evaluate their options.
Decision aids, which can be pamphlets, videos, or online presentations, are used to help patients be actively involved in health care decision-making. The aids are designed to articulate the decision that needs to be made, provide information about the potential harms and benefits of various options, and help clarify the patient's personal values. Decision aids were pioneered in cancer care and have proliferated throughout medicine in the past decade (OT 10/25/2004 and 5/25/2008 issues).
A recent Cochrane Collaborative review of 115 studies involving more than 34,000 participants found high-level evidence that patients who use decision aids improve their knowledge of the options and feel more clear about what matters most to them. The review found moderate-quality evidence that decision aids help patients have more accurate expectations of the possible benefits and harms of the various options and participate more in decision-making (Database of Systematic Reviews 2014, Issue 1).
Dharmarajan said she wanted to create the video decision aid about palliative radiation therapy because she worried that patients were giving consent for a treatment without sufficiently understanding its goals and risks: “As cancer treatment become more complex, patients and their family members have much more to think about. The video represents a first step in augmenting what should be a shared decision-making process in palliative radiation, particularly near the end of life when patients and families may have increasingly difficult decisions to make.”
Hospitalized patients who are referred for palliative radiation treatments have often been admitted because of pain, bleeding, or other symptoms that might be alleviated by radiation. However, Dharmarajan and her colleagues suspected that patients and their family members did not always realize important facts, including:
- Palliative radiation does not cure the cancer;
- Radiation sometimes does not alleviate symptoms;
- In some patients, radiation exacerbates pain for several days;
- Side effects can be significant enough to reduce a patient's quality of life for an extended period of time;
- Treatments typically last for several days to weeks, so discharged patients will need to make many trips to the radiation facility;
- Radiation is not the only option to reduce pain and other cancer symptoms; and
- The effects of radiation—both symptom alleviation and side effects—might not come until weeks or even months after the treatments were completed. “If it may take weeks before a patient would have any visible benefit, and the patient is not likely to survive for more than a few weeks, it would seem that radiation may not be the most beneficial treatment for them, and that patient may be better served by the services of a palliative care expert,” she said.
Development and Use
Dharmarajan said she chose a video format because she wanted to help patients visualize the process of undergoing radiation therapy as well as convey facts about the treatment.
“I felt it was very important to show patients what the radiation machines look like, and to illustrate what actually happens in the simulation process, and to introduce the masks or molds that patients may have to wear for treatment, and to explain some of the most common side effects of the treatment,” she said. “It is easier for patients to digest information in a video format.”
Patients watched the 10-minute video on an iPad provided in their hospital room. Additionally, a copy of the video was provided so patients could share the information with their loved ones, who were often involved in the decision-making process but were not always available during the face-to-face consultation with the radiation oncologist.
A team including radiation oncologists, nurses, palliative care specialists, and psychiatrists reviewed and revised versions of the script Dharmarajan wrote. In the video, a nurse practitioner explains the four steps of the treatment process —simulation, treatment planning, verification films/treatment, and after-treatment—and describes possible side effects of radiation therapy. A pain and palliative care specialist provides education about palliative medicine, and a radiation oncologist emphasizes that the decision about whether to pursue the therapy is ultimately up to the patient.
The team also produced five two-minute videos discussing the common side effects of palliative radiation to specific areas: the abdomen/pelvis, bone, brain, chest, and spine.
The effectiveness of the decision-aid video was tested in a study of 42 in-patients who were considering palliative radiation after a consult with a radiation oncologist. Study participants completed questionnaires before and after watching the video, and Dharmarajan said she was surprised by some of the findings:
“For instance, before they watched the video, many patients felt like they still had a chance of a cure of their cancer. Furthermore, many were confused about the difference between palliative care and hospice care.” Patients completed the same questionnaire after viewing the video, and many of them demonstrated improved knowledge about palliative radiation (see box).
Dharmarajan said she is now developing a series of video decision-aids at Mount Sinai.
Patients' Knowledge of Palliative Radiation Therapy (PRT)
The video decision-aid improved patients' understanding of the following facts that could be significant to their treatment decision-making: