Finding Justice at the End of Life
ad news is never easy to hear. And when it comes in the form of a serious medical diagnosis, where those on the receiving end are tasked with making big decisions in a situation that can be frightening and confusing, the potential ripple effects can have far-reaching consequences.
For terminally ill patients and their families, or anyone navigating the often-complex nature of healthcare in general, the idea of making uninformed decisions about significant medical procedures or treatment plans for themselves or loved ones can be a harrowing experience. But it doesn’t have to be.
“Shared decision making is a bi-directional conversation,” said Dr. Aretha Delight Davis L’97, CGS’05. “The clinician may be the expert when it comes to the science, but the patient is really the expert of the values that are important to them. And it’s only when they come together, and they have this bi-directional conversation, that they can proceed forward. Appreciating a patient’s autonomy and insights informs us as clinicians and plays a really important role.”
Davis is the CEO and Co-Founder of ACP Decisions, a nonprofit foundation formed in 2010 with a mission to empower patients to make informed medical decisions by engaging in shared decision-making with their healthcare providers. Through a robust platform and mobile app, ACP Decisions supports patient-centered advance care planning through a vast content library of videos, articles and decision support tools, bridging a crucial gap in healthcare to provide patients more clarity on what’s potentially in store for them in terms of diagnoses and treatment options, especially reaching those seriously ill patients with low health literacy.
Davis was driven to leave a career practicing law to pursue medicine during her time as a caregiver to her father, who was diagnosed with terminal cancer and passed away while she attended Harvard Medical School. Witnessing his medical experience, especially in end-of-life care and decision-making, illustrated a larger problem in healthcare to Davis. It’s one that she noticed even more glaringly as a third-year medical student interacting with patients on a more regular basis.
“I would say I was very raw with emotion just given the recent loss, but what struck me was how many missed opportunities there were between patients and the clinical team,” she said. “How communication could have been better, could have been improved, and also feeling to some degree, being able to communicate in a patient-centered way. To be able to talk to people and not past them or down to them, was not necessarily a skill that was highly valued in reality.”
Davis saw a correlating need in medicine for the type of clean, effective communication she honed as an attorney. And it’s that ability to take confusing, complex medical concepts and break them down to be more digestible to more individuals that is at the heart of ACP Decisions.
Videos can be shared with patients and their families in every viable clinical setting through desktop and mobile devices, and providers can even send patients a code to view resources through email as well as individual electronic health records. The user experience is clean and accessible, keeping in mind that its users are most likely older or seriously ill patients, who may also potentially have a lower tech literacy. And on the clinician side, a simple user experience keeps things easy and non-disruptive.
“For me it’s really about justice, it’s always been about justice, and I never felt that was just something that could happen in the courtroom arena,” said Davis, who was also a Post Baccalaureate Pre-Health Program graduate at the University of Pennsylvania, where she was elected President as the Founding Member of the Penn Minority Post-Baccalaureate Student Organization (PMPBSO). “When you empower people and make them feel comfortable, asking questions and valuing what’s important to them, encouraging them to speak out — that is a form of justice. And I think there’s a better appreciation of that now, especially as there’s been more conversations about disparities in healthcare, which have existed since the beginning of medicine, frankly.”
For the last ten years Davis and fellow Co-Founder Dr. Angelo Volandes have worked to grow ACP Decisions’ ability to leverage video as a means to scale up these intensive patient-centric conversations, reaching more people with serious illnesses who aren’t necessarily in high level care facilities. Their reach includes partnering with healthcare systems, clinicians, practice associations, insurers, hospice providers and more that now span a network across the entire country.
The library of seven videos in three different languages that ACP Decisions started with in 2010 now sits somewhere over 400 videos in 22 languages that cover over 30 different clinical topics within medicine. Most apply to serious illnesses and procedures that are relevant for patients 65 years and older, but there’s a growing portion of pediatric content as well.
ACP Decisions is built through the collaboration of a vast team of creators and medical experts. From nurses, social workers and health literacy experts, to patient advocates, focus groups and individuals on the video production end, each step ensures the end products are accurate, and more importantly, helpful.
With so many moving parts, it can take months, even years, to finish a single video. For example, once a video is finalized in English, the entire vetting process begins again for every other language to frame the information in the appropriate cultural context to best convey it. For every future success, Davis says it’s all worth it.
“It’s about those situations of success during those small moments,” she said. “During those quiet moments in medicine when a clinician is able to connect with a patient, they’re able to overcome some sort of barrier — educational, cultural, or language, and they’re able to connect in a human way because they’ve used one of our videos. Those are the stories that are fuel to the fire for me.”
Davis recounts a story from a palliative care clinician within ACP Decisions’ network who realized that an older patient recently diagnosed with cancer did not fully understand the severity of his situation or prognosis, as well as his medical options moving forward, which included hospice.
The patient spoke Arabic, and as a last resort to connect with him, the clinician used the ACP Decisions mobile app on her phone to show him a video with a native-speaking Arabic oncologist. It was a complete revelation, and he asked for it to be replayed for his family.
“That led to a very different conversation with him and his family, where he asked questions and developed a much deeper understanding of what his options were,” said Davis. “And she got to understand and appreciate him not for his prognosis or diagnosis, but as a human being, what matters. And that would not have occurred had the video not served as a bridge to that communication. It’s stories like that that remind me of when I was with my father.”
Part of the challenge that ACP Decisions faces is normalizing the idea of advance care planning on a widespread scale, which includes the uncomfortable acknowledgement of death. Davis says she’s noticed a larger cultural shift in the last five years, which has exposed the importance of shared decision making to improve the patient experience in U.S. healthcare systems overall. It’s those threads that connect us and make us all human that can get lost in the process, but also make all the difference in the face of a painful or frightening diagnosis.
“I’m a kid of immigrants, I remember being on the other side of the white coat and that really does get me up and going in the morning,” Davis said. “Because that helps confirm to me, we are really helping to make a difference in people’s lives. Thousands and hundreds of thousands of people I will never see, but I take comfort in knowing I’m helping them find peace and solace and understanding, even in the midst of something difficult.”