“Nothing can be certain, except death and taxes,” Benjamin Franklin famously said. For the latter, we dread them every year but begrudgingly make it through thanks to online tax tools like Turbotax that leave us with that “I-guess-that-wasn’t-so-bad” feeling after we press ‘submit’. For the former, end-of-life planning is not only an emotional and delicate topic, but can be completely overwhelming to even begin thinking about. Dr. Megan Shen, an Associate Professor in the Clinical Research Division at Fred Hutch, studies how social psychological factors affect advance care planning and end-of-life outcomes. “Advance care planning was something that kept coming up in my research and others’ research,” particularly in regards to patients with advanced cancer, Dr. Shen explained. She continued, “patients are thinking broadly about end-of-life planning, but there are a lot of small things people don’t think of.” For anyone who has experienced the loss of a loved one, you’ve probably realized that on top of the emotions and grief you’re experiencing, there are a surprising amount of logistics to deal with. There are big things, like settling the estate and making funeral arrangements, and then the small, unexpected ones — is there a streaming subscription that needs to be canceled? Dr. Shen wanted to know “how can we help bereaved individuals who have lost someone have an easier time with all of the logistics” of end-of-life planning, and “on the patient or individual side, it relieves the burden they might feel they are to their family by lightening that load.”
Thinking about how to help people navigate through challenging situations such as this, Dr. Shen favored a strategy that provides both patients and caregivers with a list of actionable items and one that was easily accessible through an online platform. With this idea in mind, Dr. Shen worked with Peacefully, founded by Jennifer Good. This unique academic-business partnership and development of the online legacy planning tool, was made possible thanks to an NIH Small Business Innovation Research (SBIR) Grant. In a recent study published in Supportive Care in Cancer, Dr. Shen, Dr. Walsh, Jennifer Good and colleagues enlisted a small group of patients with advanced stage cancer and their caregivers to complete usability testing for Peacefully. This study enabled researchers to gauge the overall satisfaction of patients and caregivers with the website and its usability, while also helping the team make modifications based on the user suggestions, prior to its official launch.
Peacefully has now officially launched and is available for public use. Dr. Shen explains how she is now in the final stage of this project which includes conducting a larger, randomized control trial to more rigorously test whether patients will enroll and if Peacefully can improve outcomes, in terms of reducing stressors like financial and emotional distress. Related to this work, Dr. Shen is working on a separate website focused on advanced care, called PACT (Planning Advance Care Together), which walks patients through the advance care planning process, including what forms need to be completed (like living wills and health care proxies) and how to talk to your family and health care providers about these decisions.
While this research was focused on patients with advanced cancer, this tool is applicable to just about everyone. Dr. Shen explains how end-of-life planning is a sensitive topic to approach when death is an imminent threat. However, Peacefully is working with insurance companies and thinking of ways to make this a more routine process done earlier in life to reduce the emotional aspect of this planning, similar to how people purchase life insurance policies or select beneficiaries when you enroll in health insurance.
While Dr. Shen’s own research motivated her to create this online tool, she explains that Jennifer Good had a personal one, after experiencing the aftermath of her grandmother’s passing and seeing all of the logistics that her family, especially her grandfather had to deal with. In terms of exactly how to create such a website that would help individuals navigate advanced care planning, Dr. Shen half-heartedly jokes that TurboTax was her inspiration, stating, “it’s something you have to do, that you don’t want to do, but it makes it pretty easy.” Dr. Shen describes how the Peacefully website “brings in experts across various domains (legal, healthcare, emotional) to walk people through the multiple layers across this process.” In some ways, Peacefully, takes away some of the emotional aspect of this difficult planning and simplifies things into actionable items to complete. The online platform covers everything from legal matters, estate and financial assets to funeral arrangements and recurring expenses. The website is also thoughtfully executed with additional tools and resources to assist with the emotional aspect of this process. “It can provide emotional support through things like recommending meditations and linking people to healthcare providers,” Dr. Shen added. “Peacefully is really meant to bring peace of mind.”
This work was supported by the National Institutes of Health (R44-NR020341).
Fred Hutch/UW/Seattle Children’s Cancer Consortium member Dr. Megan Shen contributed to this work.
Walsh CA, Good J, Ismaiel A, Yarborough S, Shen MJ. 2023. Development and refinement of a novel end-of-life planning website for patients with advanced cancer: a mixed methods approach. Support Care Cancer. 31(12):695.