Demystifying palliative care through arts-based knowledge translation: An innovative knowledge to action approach for engagement and communication among patients, families and healthcare professionals

Dr Brenda Sabo and her research team will develop and test a set of arts-based tools to change attitudes about palliative care and end-of-life care among doctors, nurses, people with cancer and families. Public meetings will take place in 3 cities: Halifax, Montreal and Toronto. The tools (e.g. plays) will be shown at these meetings. Audiences at each of the public meetings will be asked to provide comments about the tools and their use in education about palliative care. The tools will also be tested with nursing and medical students. It is hoped that the tools will change attitudes about palliative care, leading to earlier referral and improved quality of life for patients with advanced cancer. One in 4 people in Canada will die of cancer. Many do not receive palliative care. Others may receive it too late. While these deaths cannot be prevented, there is much that can be done to prevent a "bad" death. Research has shown that education about palliative care alone is not enough to change the practice of doctors and nurses. Doctors and nurses appear hesitant to talk about palliative care even when training has been provided. Many people with cancer and families do not want to talk about palliative care. This may be because people believe palliative care means giving up hope. Finding a balance between acknowledging that cancer is no longer curable, while supporting hope can be challenging. If this balance is not achieved, it has the potential to lead to poorer quality of life for people with advanced cancer. The use of art forms such as plays and storytelling has been shown to be helpful in changing beliefs and improving care. This study aims to develop arts-based tools to improve palliative and end of life care and to test whether the tools are helpful in changing beliefs held by medical and nursing students, doctors, nurses and the public about palliative care. The team will collect stories from people living with advanced cancer and families who have had experience with palliative care. These stories will be used to develop the arts based tools (e.g. a play). Researchers will test how well the tools work with medical and nursing students at Dalhousie University and York University. Healthcare professionals and the public will be invited to open sessions in Halifax, Montreal and Toronto to see the play. The audience will be given a questionnaire asking if they think the play could be useful to educate the public, doctors and nurses and to change beliefs about palliative care. A website will be created to host the arts based tools. This study may reduce the hesitancy to talk about palliative and end-of-life care by doctors, nurses, people with cancer and families. It can lead to changes in how the community thinks about palliative care, conveying that palliative care does not mean there is ?nothing more to be done? or that it is about "giving up hope". By talking openly about palliative and end of life care, this work could improve both the quality of care as well as the quality of life for people with advanced cancer and their families. Using art can be helpful in changing beliefs about what palliative care is or is not. Changes in beliefs are a necessary first step to changing how doctors and nurses provide care for people with cancer and families. This is all the more urgent now in light of the recent Canadian Supreme Court decision to allow for assisted death.