In May 2023, Covenant Health’s Palliative Institute launched a new digital learning module entitled Understanding Palliative Care. The purpose of the module is to improve public understanding of palliative care so that people who could benefit from it are more receptive to, or request, palliative care for themselves or someone close to them. The module is freely accessible on the institute’s Compassionate Alberta website, which features a suite of resources to raise awareness and uptake of palliative care and advance care planning in the province.
Developing Understanding Palliative Care was a collaborative effort. It was inspired by a public educational module created by the All-Ireland Institute of Hospice and Palliative Care called Introduction to Palliative Care. The project team appreciated that this resource was freely accessible online, interactive, and incorporated multimedia content. A working group of nine members, including palliative care clinicians from nursing, medicine, and social work, met four times in the spring of 2022 and provided valuable guidance on the development of an Alberta e-module.
They advised us to:
- Use plain language.
- Present positive messages and avoid giving airtime to myths.
- Focus on a small number of key messages.
- Emphasize diversity of diagnosis, age, ethnicity, experience.
- Feature real people speaking to the benefits of palliative care.
A draft module was reviewed by the working group, and a revised version was presented to a panel of public members in early 2023. Feedback from both groups was incorporated into the module before its release this spring.
The module draws on the latest research evidence related to public messaging about palliative care, such as the Serious Illness Messaging Guide and the Center to Advance Palliative Care’s MOTIVATE: Marketing and Messaging Palliative Care Toolkit, that recommend positive messaging, talking up the benefits of palliative care, and sharing personal stories. Visually, Understanding Palliative Care incorporates an umbrella theme that was inspired by a piece by Camilla Zimmermann and Jean Mathews entitled “Palliative Care is the Umbrella, Not the Rain: A Metaphor to Guide Conversations in Advanced Cancer” (JAMA Oncology 2022; 8 (5): 681-682).
The heart of the module focuses on the holistic support palliative care offers – physical, emotional, social, and spiritual. This is reinforced through videos featuring three Albertans with palliative care experience as a patient or family member.
Colleen, a patient who received palliative care for her illness, addresses the primary misconception people have of palliative care when asked what she wishes people knew about it. “As soon as people hear the words ‘palliative care’ they think the end is near,” she says. “They see it as a negative thing, but I see it as a positive as it’s enhanced my quality of life. It makes your life so much easier during an incredibly stressful time.”
A common theme underpinning all the interviews is the focus of palliative care on what matters most to each individual, whether that is being surrounded by family or pets, enjoying favourite foods, or continuing to participate in outdoor activities. One interviewee, Sarah, describes her husband’s experience in a hospital setting where friends, family and even their cat were made welcome, and Colleen explains how the palliative care team addressed physical symptoms such as lymphedema so that she could continue walking and getting out into nature. Understanding Palliative Care leverages the power of storytelling to encourage people to access palliative care, to access it early, and to generally advocate for themselves and their loved ones.
The Understanding Palliative Care module is a roughly twenty-minute, self-directed experience with the potential to dramatically expand people’s perception of palliative care. It was designed for an Alberta audience, and there is a slide about how to access palliative care in Alberta, but much of the information is broadly applicable.
To learn more about this resource and other work by the Palliative Institute, we encourage you to join us at our 2023 Compassionate Communities Forum on November 30. This free online event will feature sessions on this and our other public awareness tools as well as a showcase of Compassionate Community initiatives in Alberta, a panel discussion involving individuals with personal experience of community support (including one of the interviewees from the module), and two keynote speakers: Drs. Naheed Dosani and Shane Sinclair.
Beyond this, the Palliative Institute would love reader feedback on Understanding Palliative Care, which you can provide via the survey at the end of the module. We also encourage you to share this module widely with your clients, patients, staff, volunteers, communities, family, friends, or whoever else you think might find it useful.