Serious illness, hospice, and palliative care are widely misunderstood in America—and talking about them doesn’t need to be doom and gloom. It’s with this vision that clinicians and researchers at The University of Washington School of Medicine sought to understand cultural narratives and beliefs around serious illness care—and frame the topic more productively. After years of study, the team asked Constructive to turn their research into a brand experience that expands understanding and makes best practices and resources accessible for anyone who needs to communicate about serious illness care. Together, we created a free, open-source Serious Illness Messaging Toolkit that puts patient experience at the heart of messaging for hospice, palliative, and serious illness care.
In America, the topic of hospice and palliative care has long been avoided and, as a result, misunderstood and approached with apprehension. Conversations surrounding serious illness care painted a one-dimensional and inaccurate picture based on fear and avoidance. Seeking to understand why and how these cultural narratives exist, and ultimately shift them, The John A Hartford Foundation and Cambia Health Foundation funded a years-long study led by Dr. Anthony Back to get to the root of the problem. Constructive’s strategy team reviewed the research and then expanded our inquiry with complementary literature reviews and stakeholder interviews—providing us with both a holistic systems view and an understanding of individual sentiments—insights we used to facilitate workshops with Dr. Back’s team exploring the challenges and opportunities to flip the script.
Symptoms of America’s counter-productive narratives on serious illness care include well-worn, dominant tropes about end of life embodied by visuals of cupped hands, skyward doves, and bed-bound patients. But serious illness care journeys aren’t always so singular or fatalistic. With an evidence-based strategy to translate years of research into a tangible product, we set out to help communicators meet people where they are—starting with brand principles that center on elevating diversity of care needs and options, the sentiments of patients, and aspirations rooted in human dignity. These five principles identified by Dr. Back’s team framed our strategy for designing a brand and experience for a toolkit that effectively engages people and makes patients feel in control, represented, and supported throughout their care journeys.
Providers, experts, and advocates alike, with the proper messaging, have the power to empower patients in their care journeys. However, without the right tools, it may be challenging for a provider to undergo a messaging makeover while managing the administration of serious illness care. To realize the potential of this vital research, the Serious Illness Messaging Toolkit needed to be precisely that—a tool. It needed to be accessible, modern, and engaging to appeal to the people who have the power to improve serious illness messaging. After engaging these communicators, the site was designed to make navigation and accessing resources and guides as easy as possible.
The Serious Illness Messaging Toolkit is nothing if not actionable. To make sure that communicators are prepared for a messaging makeover, we centered three pages: “Steps for Better Messaging,” “Tips for Better Messaging,” and “Inclusive Messaging.” The messaging seeks to make patients feel reflected and heard, and the straightforward steps and the grids of messaging do’s and don’ts inform the content throughout the toolkit. Each section is substantiated with the sources that the team gathered after years of researching the issue.
To make sure that everyone who needs serious illness care seeks it, the toolkit centers visual and verbal language that reflects the diversity of needs, ability, and perspectives of serious illness patients.
Serious illness care doesn’t have one face or age. Once we had the inclusive messaging down, we focused on visual inclusivity. To visually demonstrate the diversity of ability across patients, we utilized fictional, fantastical people and purple skin. The design and illustrations in the Serious Illness Messaging Toolkit aim to increase relatability, reduce isolation, and break the trend of visual stereotypes surrounding people with serious illnesses. The animations across the site reflect the principles behind the verbal messaging—principles rooted in centering real patients’ needs and their roles in their own care journeys.
The Serious Illness Messaging Toolkit is built around an understanding that different organizations all have their own unique needs. The same words won’t work everywhere, but the same principles illuminated throughout the toolkit consistently engage public audiences. The site builds on that goal of engagement and the aim for accessibility to make messaging that works easy to adopt for serious illness communicators. With dynamic components, downloadable resources, and an engaging design, the toolkit aims to translate empirical research into practical action.
To realize the potential of this important research, the Serious Illness Messaging Toolkit needed to be an accessible, modern, and engaging tool that appeals to those with the power to improve serious illness messaging.
Our partners wanted to build this toolkit to change how the public views serious illness care and, consequently, so that more people experience the benefits of effective care. Changing the messaging is the first step, but beyond improving messaging through empirical research, we share a goal of changing the narrative, too. Many people who could benefit from serious illness care don’t receive it. If we switch the script so that people can see themselves reflected and empowered in the messaging surrounding this kind of care, we can spark a virtuous cycle of improved care and increased access to care. The resource center, with research, worksheets, tools, and guides for communicators, helps set the spark for changing the narrative.
Effective messages about serious illness and advanced care planning don’t need to be complex or entirely unique. To expand the use and adoption of the evidence-backed principles outlined in the Serious Illness Messaging Toolkit, the site encourages healthcare providers to copy and paste as they please. The toolkit includes free images, text, and messaging for downloading. The resources are optimized for websites, brochures, or social media, but can be used across various media. Resources can be downloaded as PDFs, and the site’s design also includes hyperlinks.
People who work in health care have a lot on their plates. While a messaging makeover might seem daunting, the Serious Illness Messaging Toolkit seeks to meet providers, caretakers, and advocates where they are with quick guides. One of the site’s most utilitarian resources is the quick guides. With quick guides for advanced, palliative, and hospice care, each guide presents messages that do and don’t work, research highlights, and patient and caregiver stories to build a holistic understanding of effective messaging in the space.
To meet that goal of creating messaging that catches on and ultimately shifts perceptions, the toolkit was designed to be as plug-and-play as possible for communicators. To make sure the toolkit reached the right audiences, after the site went live, our work with the team at the Serious Illness Messaging Toolkit continued into new territories: analytics, marketing, and user experience. The team at Constructive leveraged our expertise in website traffic and on-page analytics to monitor the user experience and tool utilization. We also leveraged our deep knowledge of the brand and the tool to bring the toolkit to new audiences, launching LinkedIn, managing content, and promoting research for the site.
