By Joanne Lynn
What matters in the lives of frail elders centers on function — and understanding an elderly person’s course, over time, requires that everyone involved learn to measure functioning in the same way. That’s the core of the new Improved Medicare Post-Acute Care Transformation (IMPACT) Act, passed by Congress in September 2014. Within a few years, we will have a uniform way of measuring what matters, including at least functional ability, across all post-hospital settings. The work that Medicare will have to do to implement IMPACT provides a remarkable opening for advocates to get Medicare measuring the things that matter.
About a decade ago, I started working at the Centers for Medicare & Medicaid Services (CMS) in the Quality Measurement and Health Assessment Group. In straightening up my cubicle on the first day, I was dumbfounded to find a small cache of notepads emblazoned with “HCFA” and even more yellowed ones saying “Social Security Administration.” But the real gem was a set of transcripts from hearings nearly 30 years ago that addressed the wisdom of having a Uniform Assessment Instrument (UNAI) for the elderly. The arguments were cogent, and many of those testifying were well-known in geriatrics and gerontology to this day. But the world did not turn their way.
CMS ended up with some assessment instruments: the Minimum Data Set (MDS) for nursing homes, the Outcome Assessment and Information Set (OASIS) for home care, and the Inpatient Rehab Facility-Patient Assessment Instrument (IRF-PAI) for rehabilitation hospitals. There was little consistency between them. One instrument might ask whether an elder could do a task, another asked if he did do the task, and the last could ask how quickly he did it. If a person were in a sequence of settings that used different instruments, there was no way to see whether the person changed or it was just that the specific questions were different. This inconsistency was crazy! It precluded doing a serious study of outcomes across settings, characterizing populations of frail elders who used multiple settings, or even training practitioners to optimize the quality of data.
CMS has done one remarkable study, the Post-Acute Care Payment Reform Demonstration (PAC-PRD), in which elderly hospitalized persons were measured with a standardized tool, called the CARE Instrument. The findings have slowly surfaced and show that most outcomes are not affected by the setting of treatment, but the costs are dramatically different. This has led the Medicare Payment Advisory Commission (MEDPAC), in its June 2014 Report to Congress, to take notice and call for more site-neutral payments. This would mean that Medicare would not pay differently for treatment in settings that are not shown to make a difference in outcomes.
But for any rationalization of the increasingly expensive period just after hospitalization, one really needs the UNAI, a uniform way of measuring what matters, including at least functional ability, across all settings and time. That is the core of IMPACT. The Act requires that CMS promulgate a standard assessment and that all post-hospital providers use it and report data in that form. This meshes with an entirely separate project by the same name, Impact, an Office of the National Coordinator for Health Information Technology project that has identified and standardized hundreds of elements that might be part of an assessment and care plan and is beginning to pilot-test the interoperability of records across sites in long-term care. The IMPACT Act makes UNAI real, with various deadlines, mostly 2018.
Having uniform data that will allow identification of functional disability and other important clinical categories creates the possibility of developing quality measures that reflect the priorities of frail elders, and the Act and the Executive Action Fact Sheet that accompany it give clear instruction to build measures of this sort.
How do the IMPACT Act and the associated executive actions give us a window of opportunity? IMPACT, in its section on quality measures, requires that care preferences of the individual and the family caregiver be part of the data to be reported at the time of a transition in setting of care. In a section on quality measure use, the Act requires that conditions of participation include procedures to address the patient’s treatment preferences and goals of care. The Act also calls for studies of the effects of socioeconomic factors and beneficiary activation on quality measures. The Act requires stakeholder input, and all of us are stakeholders. We hope to grow old, and we hope our loved ones do also.
What matters most when we are living with disabilities, chronic conditions, and frailty associated with advanced age? Most people still want to live a bit longer if possible. But most of us become more aware with age that we are working with a truncated timeline and long-term outcomes are no longer relevant. For that and other reasons, many additional considerations start crowding the stage. Some want to be sure that a disabled adult son has assets to live on; others have no dependents. Some want to honor their faith traditions; others want to solidify their departure from those beliefs. The endless variations make it impossible to have one care plan that fits all people.
So why do we now measure quality for frail elderly people as if everyone wanted mainly just to live longer with better health? Often, our metrics just comply with professional (mostly physician) guidelines on how to take care of (somewhat younger) bodies. People become more and more individualized with their particular family, finances, dreams, and fears as they age. We really must learn to measure the quality of health care by the degree to which it serves the individual’s priorities. We must learn to ask, “What matters to you, and what matters most to you?” and to judge quality by how well the services actually deliver on what matters most.
Could we do that? Sure! First, we need to document what matters most to the frail elderly person (and family) and what strategies will most likely accomplish the feat — commonly termed an “assessment and care plan.” Then we need to measure whether the elderly person (and family, as appropriate) feels that the services help to achieve what matters most. We could start with a simple scale: “Working against my interests,” “Not clear or not particularly helpful,” and “Completely or mostly aligned with what matters to me.” We would learn how to do it better, but the important thing is to start caring about what matters to the individual person.
Of course, some things are important to so many people that we might learn to measure them across the frail elder population. Metrics of “what really matters to me” could include, for example, “the rate at which the care system spends down my financial assets,” “the likelihood that I can stay in my home as long as I want to,” “my confidence in having adequate preparation for adverse events and adequate backup for challenges,” and “the stress that my family and friends feel as they try to ensure that I have what I need.” Most people care about avoiding falls and injuries and living where they want to live. While we are at it, let’s start measuring important things about family caregivers: availability, skills, stresses, and challenges. These are what most often really matter when you are living your last years with disabilities and limitations. How different this is from the usual “percentage with diabetes under control” or “percentage with colon cancer screenings”!
Let’s do what we can to help CMS commit to building the metrics that we need. Here are some suggestions:
- Contact the organizations to which you belong and encourage them to include advocacy on behalf of quality measures appropriate for frail elderly people in their work with Medicare and Medicaid.
- Write to CMS and your congressional representatives to push for metrics that really reflect the concerns of frail elderly people and their families.
- If you are funding or doing research in this arena, stretch the scope to include what really matters.
- When you look at Nursing Home Compare, Home Health Compare, or any of the quality information for the public sites, send a comment to CMS, your congressional representatives, or your Quality Improvement Network that the metrics are not yet what you hope to see. You can offer some of the ones that I listed above as examples of what we should have.
- Some responsive and forceful advocacy for frail elderly people is at Consumer Voice, OWL, and Gray Panthers and caregiver groups. Join them and encourage their work in these arenas.
- Write to us with suggestions and plans. The time is upon us! We will watch for CMS requests for information, proposed regulations or conditions of participation, and RFPs. You can also let us know if you see something potentially important going by.
This is important, and an opportunity has opened up that might move us along well.
Want to know more?
Post-Acute Care Payment Reform Demonstration: Final Report
Medicare Payment Advisory Commission (MEDPAC) June 2014 Report to Congress
Standards & Interoperability (S&I) Framework
White House Fact Sheet on Executive Actions to Improve Quality of Care
PDF Download of the full text of HR 4994 (the Act)