How shared decision making tools can help caregivers
Shared decision making is the discussion between patients/caregivers and healthcare providers regarding various treatment options, guided by evidence-based strategies and materials called patient decision aids. Shared decision making is particularly effective in scenarios in which patients with serious illnesses are facing palliative care decisions. Although it shows promise for reducing unnecessary healthcare spending and costs, and for improving decision making without adverse effects on clinical outcomes, its adoption has not been widespread. Moreover, most shared decision-making tools focus on clinical choices without the inclusion of cost information.
To address the need for greater patient decision making in palliative care scenarios, FAIR Health, in collaboration with recognized shared decision-making expert Dr. Glyn Elwyn from the Dartmouth Institute, undertook an 18-month initiative geared for adult patients and their caregivers who face palliative care decisions. Supported by generous funding from The New York Community Trust, our initiative involved pairing cost information with decision aids for a set of palliative care scenarios on our free, award-winning consumer website, fairhealthconsumer.org.
Having completed the shared decision-making initiative in September 2020, our organization recently published a brief, Cost Information Enhances Shared Decision Making: Lessons from FAIR Health’s Shared Decision-Making Initiative, which provides a detailed overview of the insights gleaned from this groundbreaking pilot. Here are some key details and findings.
To examine the impact of the shared decision-making tools on patient/caregiver decision making, we conducted an extensive evaluation period and collected both qualitative data (e.g., key informant interviews/qualitative feedback sessions with palliative care experts) and quantitative data (e.g., usage analytics and consumer surveys). We observed that providers and consumers alike deemed the shared decision-making tools — and, particularly, the associated cost information — useful and valuable to shared decision-making conversations in palliative care scenarios. Indeed, one provider noted with respect to palliative care, “For this particular arena, cost is a little more important.” Palliative care experts agreed that cost information provides an additional layer to the information presented about clinical treatment options.
Further interviews and qualitative feedback sessions with experts and clinicians revealed that the shared decision-making tool was useful to prepare patients and their caregivers for collaborative discussions with one or more providers. While the interviewees were positive about the tool and related content, they also revealed that such preparatory or collaborative use is rare, and not considered yet to be part of normal workflows in most healthcare organizations. As one individual in the industry put it, “A lot of people don’t have insight into these interventions...so I think they might be helpful if people were steered towards them.” In other words, palliative care providers have more to learn about this approach to decision making.
Our evaluation also showed acceptability of the shared decision-making tool among consumers and providers. We found that over 40,000 unique visitors visited the shared decision-making platform in the first seven months following its launch. Moreover, responses to our consumer site survey indicated the acceptability of the shared decision-making tool and highlighted an appetite for information on additional clinical topics. Providers, too, welcomed the guidance of the shared decision-making tool. Notably, their input revealed that providers are an important conduit for promoting shared decision-making interventions and resources.
The project further uncovered the importance of sensitivity when communicating through shared decision making. During our discussions with palliative care experts, we were exposed to the ways in which palliative care providers approach the topic with their patients with sensitivity. We were advised to avoid using the term “end of life” when communicating with patients and caregivers because many patients do not think of themselves, or wish to think of themselves, as being at the end of life. We changed the language to “serious illness and chronic illness” to account for this consideration.
Conversations about clinical treatment options and costs present an opportunity to empower healthcare consumers and patients to make critical healthcare decisions with their clinicians that not only affect their health but also their finances. We hope these program learnings, in addition to the findings described more fully in the brief, guide clinicians, payors, policymakers and consumers who seek to employ shared decision making when making critical healthcare decisions.