About

The creation and evaluation of My Palliative Care Journey: A Graphic Guidebook is part of a Biomedical Communications Master's Research Project, started in April 2018.

The team

Author, illustrator & designer

Mona Li, MScBMC

Institute of Medical Science, Faculty of Medicine, University of Toronto

Faculty supervisor

Dr. Shelley Wall, AOCAD, MScBMC, PhD

Associate Professor, University of Toronto

Content expert

Dr. Camilla Zimmermann, MD, PhD, FRCPC

Senior Scientist, Princess Margaret Cancer Centre

Professor of Medicine, University of Toronto

Head, Division of Palliative Care, University Health Network

Funded by

Social Sciences and Humanities Research Council (SSHRC)

The Vesalius Trust - Vesalian Scholar Award

Why palliative care, and why comics?

Palliative care is an approach that improves quality of life in patients facing life-

threatening illnesses by addressing their physical, emotional, spiritual, and practical needs1,2. Research has shown that palliative care initiated early in the disease trajectory improves patients’ mood3, quality of life4, and survival5 when compared to standard care. However, early referral and willingness to initiate palliative care are hindered by stigma and the misconception that it is for patients who have exhausted treatment options6. Fortunately, educating patients has been shown to improve their attitudes towards palliative care7.

Thus, the purpose of this project is to develop an engaging educational tool that will improve patient understanding and acceptance of palliative care, thereby encouraging early utilization of services.

To leverage the benefits of both image and text, this project will use graphic medicine: the study and making of comics about health or biomedicine-related topics8. Well-designed comics may be useful for addressing complex, stigmatized topics because they are unintimidating, easy to consume, and relatable to readers8,9. Unsurprisingly, educational comics can teach more effectively than text or verbal instruction10,11,12. Since early palliative care is valued by patients for being person-centered, i.e., holistic and patient-led13,

comics may be uniquely suited to teach about this topic while visually portraying the patient experience in a positive manner. To achieve improvements in knowledge and attitude, the comic produced in this project

will include a didactic narrative about palliative care, and situational narrative describing the patient experience.

Goals & Objectives

The goal of this project is to improve patients’ knowledge about palliative care, and their willingness to engage in palliative care services.

1. Identify communication needs and areas of improvement for existing palliative care education tools;

2. Develop an engaging, reader-friendly didactic comic that informs patients about palliative care: what palliative care is and is not, how it helps patients, what to expect, and how to access it;

3. Identify visual and narrative design strategies that would make the comic clear, engaging, and relatable for the target audience;

4. Set a precedent in graphic medicine literature for systematic study of effective design of comics for patient education purposes.

Target audience

The comic was designed for a lay audience, primarily targeting adult patients who qualify for palliative care services, i.e., patients diagnosed with any stage of a potentially life-threatening disease.

Secondarily, the comic was designed to engage and educate caregivers, as they often partake in care consultations and patient decision-making.

Select spread from Chapter 5: Meeting the palliative care doctor

Select spread from Chapter 2: What is palliative care?

Select spread about where to get palliative care

Process

More info coming soon!

References

1. World Health Organization. (n.d.). WHO Definition of Palliative Care. Retrieved April 10, 2018, from http://www.who.int/cancer/palliative/definition/en/

2. Steinberg, L., Ballantyne, J., Dougherty, E., Rivers, P., Bradshaw, C., Corber, W., . . . Konyen, S. (2015). Planning your palliative care: A booklet to help you get ready to leave the hospital [Pamphlet]. Toronto: University Health Network. Retrieved from: https://www.uhn.ca/PatientsFamilies/Health_Information/Health_Topics/Documents/Planning_Your_Palliative_Care_Leaving_the_Hospital.pdf

3. Temel, J. S., Greer, J. A., Muzikansky, A., Gallagher, E. R., Admane, S., Jackson, V. A., ... Lynch, T. J. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. New England Journal of Medicine, 363(8), 733–742. https://doi.org/10.1056/NEJMoa1000678

4. Zimmermann, C., Swami, N., Krzyzanowska, M., Hannon, B., Leighl, N., Oza, A., . . . Lo, C. (2014). Early palliative care for patients with advanced cancer: A cluster-randomised controlled trial. Lancet, 383, p. 1721-1730. https://doi.org/10.1016/S0140-6736(13)62416-2

5. Pirl, W., Greer, J., Traeger, L., Jackson, V., Lennes, I., Gallagher, E., Perez-Cruz, P., Heist, R., Temel, J. (2012). Depression and survival in metastatic non-small-cell lung cancer: Effects of early palliative care. Journal of Clinical Oncology. https://doi.org/10.1200/JCO.2011.38.3166

6. Zimmermann, C., Swami, N., Krzyzanowska, M., Leighl N., Rydall, A., Rodin, G., Tannock, I., & Hannon, B. (2016). Perceptions of palliative care among patients with advanced cancer and their caregivers. Canadian Medical Association Journal, 188(10), E217-E228. https://doi.org/10.1503/cmaj.151171

7. Hoerger, M., Perry, L. M., Gramling, R., Epstein, R. M., & Duberstein, P. R. (2017). Does educatingpatients about the Early Palliative Care Study increase preferences for outpatient palliative cancercare? Findings from Project EMPOWER, 36(6), 538–548. https://doi.org/10.1037/hea0000489

8. Myers, K. R., & Goldenberg, M. D. F. (2018). Graphic pathographies and the ethical practice of person-centered medicine. AMA Journal of Ethics, 20(2), 158–166. https://doi.org/10.1001/journalofethics.2018.20.2.medu2-1802

9. Green, M. J., & Myers, K. R. (2010). Graphic medicine: use of comics in medical education and patient care. BMJ, 340(Mar03 2), c863–c863. https://doi.org/10.1136/bmj.c863

10. Hosler, J., & Boomer, K. B. (2011). Are comic books an effective way to engage nonmajors in learning and appreciating science? CBE Life Sciences Education, 10, 309–317. https://doi.org/10.1187/cbe.10-07-0090

11. Mendelson, A., Rabinowicz, N., Reis, Y., Amarilyo, G., Harel, L., Hashkes, P. J., & Uziel, Y. (2017). Comics as an educational tool for children with juvenile idiopathic arthritis. Pediatric Rheumatology,15(1). https://doi.org/10.1186/s12969-017-0198-5

12. Tae, J. W., Lee, J. C., Hong, S. J., Han, J. P., Lee, Y. H., Chung, J. H., ... Lee, M. S. (2012). Impact of patient education with cartoon visual aids on the quality of bowel preparation for colonoscopy. Gastrointestinal Endoscopy. https://doi.org/10.1016/j.gie.2012.05.026

13. Hannon, B., Swami, N., Pope, A., Leighl, N., Rodin, G., Krzyzanowska, M., & Zimmermann, C. (2016). Early palliative care and its role in oncology: A qualitative study. The Oncologist. https://doi.org/10.1634/theoncologist.2016-0176