One of the primary goals of measuring and publicly reporting quality of care is to empower consumers to make informed health care decisions. Numerous national efforts, many initiated as a result of requirements in the Affordable Care Act (ACA) of 2010, are underway to make information about quality of care available to the public.
Despite these efforts, a Kaiser Family Foundation survey reported that only 30% of Americans reported exposure to this type of information, and only 13% said they actually used it when making health care decisions. These findings, along with other similar results, beg the question: Are the necessary steps being taken to ensure that quality measurement and public reporting are having a meaningful impact on consumer choice?
Hibbard et al. described this leap from public reporting to informed consumer choice in terms of the consumer choice model, where a series of contingencies must be met in order for quality information to influence consumer action/behavior. This chain of events includes 1) consumer awareness of quality information, 2) consumer knowledge about quality and variation in quality, 3) consumer attitudes towards the information, and 4) resulting change in consumer behavior.
As part of our work (funded by Centers for Medicare & Medicaid Services) to develop the Hospice Quality Reporting Program and facilitate future public reporting through a Hospice Compare site for consumers, RTI International convened a Hospice Caregiver Workgroup. Based on their past experiences with hospice care for their loved ones, workgroup participants spoke candidly about what they valued in hospice care, gaps they perceived, and what information would be important to them in the future if choosing a hospice organization. Themes that emerged from these interviews and illustrative quotes are organized below based on the four components of Hibbard et al.’s consumer choice model.
1. Awareness
National surveys have demonstrated that the majority of Americans are unaware that information exists to help them make decisions about the health care they receive. Almost every member of the Hospice Caregiver Workgroup echoed this knowledge gap preceding their loved one’s election of hospice. It didn’t occur to them to “shop” for hospices, so they defaulted to the hospice agency to which their established medical provider(s) referred them.
“Unless you have had a prior experience, I don’t know where you would even begin to think to go for that kind of information…”
2. Knowledge
Of the minority of consumers who are aware that quality data is available to the public, an even smaller minority are able to disentangle the meaning and relevance of this complex information. When asked about certain quality measure concepts, several members of the Caregiver Workgroup struggled to ascribe importance to those concepts. For example, when asked about the importance of hospice provision of crisis care, one caregiver asked:
“As a consumer, how would you know if the provision of crisis care is a good thing? Or if it is related to quality of care?”
Caregivers noted that publicly reported information has no value to consumers unless they can understand the language and how it applies to them. Concepts such as ‘provision of crisis care’, ‘percentage of patients discharged before death’, or ‘spending per day on patient care’ were not very meaningful to caregivers because, without further explanation and context, they couldn’t understand the implications of poor performance in these areas.
3. Attitude
In addition to gaps in consumer knowledge and technical understanding, studies suggest a disconnect between publicly reported quality information and consumer definitions of quality. To gauge the compatibility of hospice quality measure concepts with consumer priorities, RTI ended each Caregiver Workgroup interview with the question: “How would you define quality hospice care?”
In response, one caregiver chuckled. “That’s a tough question.” Like each interviewee before him, he had voiced a long list of expectations for hospice providers and aspects of care that he valued most. In light of their past experiences, caregivers wanted answers to a range of questions when choosing a hospice, many of which they could not have predicted prior to actually experiencing hospice care: How soon can my loved one be admitted? Will the hospice staff provide my family with the support we need? Will my loved one be in pain? How quickly can the hospice staff get there when I call? Will they prepare us for the death of our loved one? Will they be there for us after our loved one dies?
After a heavy pause, this caregiver got at the heart of what it was that all of the caregivers really wanted out of hospice care: a comfortable death.
“For people who have a loved one going through hospice care, you really want them to be as comfortable, both physically and emotionally, as they can be during this process. I would say that the patient and their family go through the process with a minimum of physical and emotional pain.”
The ideal set of quality measures, in addition to being feasible, reliable, and valid, would capture the extent to which providers measure up to consumer-driven definitions of quality (in this case, the hospice’s ability to facilitate a comfortable death). This is no small task, but can be better accomplished by empowering consumers to be active participants in “setting the measurement agenda.”
4. Behavior
In Hibbard et al.’s consumer choice model, the occurrence of the first three events does not guarantee the occurrence of the fourth: change in consumer behavior. Several members of the Caregiver Workgroup described their choice of hospice as ultimately driven by a sense of urgency. Their family was in crisis and there was no time to “shop” for hospices.
“Until someone is ready to accept that they need to be in hospice, they are not thinking about it far enough in advance.”
This barrier to informed consumer choice has deeper roots in widespread avoidance of end-of-life conversations, perceptions of hospice care as “giving up”, and a health care system driven by the curative care model. Because of complex factors such as these, even if all of the contingencies described above are met, quality measurement and reporting will not always lead to modified consumer behavior. If these contingencies are not met, however, quality measurement and reporting will never positively impact consumers. In light of that, making sure that quality information is 1) adequately disseminated, 2) presented in a user-friendly manner, and 3) meaningful to consumers seems like the right place to start.
Emily Haines
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Jennifer Lyden
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Franziska Rokoske