Abstract
The rise of online medical tools affects both clinicians and patients. In the first two parts of the New Media series, we looked at clinician-facing tools that digitize workflows and references. In this third installment of New Media, we explore patient-facing tools.
Communication around advance care planning (ACP) is a core tenet of palliative care. The current standards for ACP tools consist of paper-based solutions along with expert clinician guidance. Although technology does not replace human interaction, there is potential for decision-aid tools to help guide the patient and their loved ones on how to approach ACP.
We are beginning to see an emergence of innovative online decision-aid tools. The two websites reviewed below highlight different approaches in promoting ACP. In our review, we hope to show the reader the potential breadth of solutions that could exist for online ACP tools in the future.
Author Disclosure: Dr. Zhang is a cofounder of a company (Cake) that is working on a solution in this space. He assisted in editing of the ACP tool reviews and cowrote the introduction and conclusion.
This older website centers around a game that can be played online for free or purchased as a card deck. The game was developed as a tool to promote discussion of values and wishes for ACP.
The website features comprehensive sections that include instructions on different ways to play the game, a FAQ on the game development and design, stories detailing how the game can be useful, and how the game has been field-tested in assisted living communities, senior centers, and church communities.
Pros:
• Creative approach to stimulate discussion between family members by priority ranking what is most important to them • Availability of the online game for a quick demonstration by medical providers • Can be played individually or with healthcare proxy • Option to save the game or print a “personalized report” • Items on cards derived from patient/family/health providers' input (Steinhauser KE, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 2000;284:2476–2482.) • Simple, easy language for those with short-attention spans or limited literacy
Cons:
• Online game requires the Flash plugin that can limit the usage on mobile devices • Resource list of books and websites was last updated in 2009 • Items on cards can feel serious and weighty, for example, “to have my family prepared for my death”
How to introduce game at the bedside (an example):
1. Google “go wish cards,” click on “go wish interactive” 2. Demonstrate quickly how online cards can be sorted 3. Describe how to play: Have the patient sort and print out the cards. Have the healthcare proxy separately sort the cards based on what he or she believes the patient would value most. Discuss the differences between the sorted cards.
At the heart of this website is a public engagement campaign that is quickly gaining momentum. The Conversation Project prominently displays a growing section of user-submitted stories detailing their experiences with ACP through text, audio, and video. By building an online community through these shared ACP experiences, the reassuring message is that there is no “one single way” to communicate and that it can be done.
The website also holds The Conversation Starter Kit, a PDF guide that breaks down the initial steps in the ACP process into “Get Ready, Get Set, Go, and Keep Going.” These steps are part mantra for motivation and an acknowledgment that one needs to know where they are and where they stand before they can take action.
Pros:
• Inviting and user-friendly website • Community stories are searchable by relationship (e.g., conversation with parent vs. spouse, and so on.) • Level of community engagement based on user's comfort level • Thoughtful design of questions in the Conversation Starter Kit, for example, survey questions are positioned to be reflection tools for the user • Users can either download a PDF version and fill it out by hand or type out their answers to be saved, printed, completed at a later time, and/or e-mailed. • Helpful tips are scattered throughout the website • Accessible by mobile devices
Cons:
• Engagement of Conversation Starter Kit may be low for patients who are fatigued by filling out forms • Although a PDF form is provided in different languages, website does not address possible cultural differences in communication styles
How to introduce the website at the bedside (an example):
1. Google “conversation project” 2. Explain the two main features of the website: stories and conversation kit 3. Encourage bookmarking the website for further exploration
Conclusion
Both Go-Wish Interactive and The Conversation Project show ways to address aspects of ACP. The “gamification” that Go-Wish creates makes discovery about personal preferences easier while the community and stepwise aspect of the Conversation Project normalizes and makes the process less daunting.
Patient-facing online tools for palliative care are still in their infancy. Integration of these online interventions into the electronic health record (EHR) will need to be addressed for deeper adoption by health systems. As Modern Healthcare reported last year, “Healthcare organizations are struggling to store and retrieve their patients' end-of-life directives even within their own health IT systems… Despite numerous EHR obstacles, providers, insurers and mobile apps developers continue to seek innovative ways to electronically share patients' end-of-life wishes across systems and platforms.”
As the collective time spent in the digital world becomes more pervasive throughout our general lives, there will be an increasing demand for patient-facing online tools in palliative are. The Go-Wish Interactive and The Conversation Project showcase different approaches to online ACP tools that have been successfully implemented and released for public use. Further work will be needed to identify best practices in refining current and future online ACP tools.