The Need For Better Measures
The US health care system is not delivering the care that patients with serious illness need and want. For example, although most people say they would like to die at home, nearly 70 percent die in nursing homes, intensive care units, or other medical settings. Given that approximately 70 percent of people who die in the United States each year are Medicare beneficiaries, the new administration has an opportunity to implement changes to significantly improve the quality of end-of-life care.
Sen. Mark Warner (D-VA) highlighted this opportunity during the confirmation hearing of then-Rep. Tom Price (R-GA) for secretary of the Department of Health and Human Services. Senator Warner cited the Care Planning Act of 2015, a bill he introduced to provide, among other things, coordinated care services for Medicare beneficiaries in the latter stages of a serious illness. While the bill was not passed in that Congress, Senator Warner underscored the bipartisan support, noting the bill’s co-sponsor Sen. Johnny Isakson (R-GA), for improving care for seriously ill patients. Senator Warner received Representative Price’s assurance that he would work with Senators Warner, Isakson, and others on these important issues.
The exchange between Senator Warner and now-Secretary Price reflects the broad consensus that care for patients with life-threatening illnesses needs to improve. According to the National Academy of Medicine’s (NAM’s) 2014 report “Dying in America,” “Despite considerable progress, significant problems remain in providing end-of-life care for Americans that is high quality and compassionate and preserves their choice while being affordable and sustainable.”
Seriously ill patients need better care. But that will not happen without new tools for measuring the quality of care these individuals receive and the effects of any interventions. The development and implementation of serious illness quality measures will help policy makers establish which needs of individuals with a serious illness should receive priority as providers focus on delivering care that is of higher quality and value. Better understanding of the patient experience will also ensure that people with an advanced illness are not neglected while the health system continues its transition from the traditional fee-for-service payment system to one that rewards value.
Although quality measures have proliferated in nearly all areas of medicine, that is not the case for palliative and end-of-life care. Both NAM’s “Dying in America” report and its 2015 “Vital Signs: Core Metrics for Health and Health Care Progress” pointed to end-of-life care as a critical area in need of significant and improved quality measure development.
A number of groups have taken up the call to make progress in the way end-of-life quality is measured. For example, the National Consensus Project for Quality Palliative Care, a collaborative effort of six major leadership organizations in the hospice and palliative care fields that are interested in standardizing the measurement of care, conducted foundational work by establishing clinical practice guidelines for critical domains—such as program structure and physical symptom management—in palliative care. Projects such as the University of North Carolina’s Peace Hospice and Palliative Care Quality Measures and RAND Corporation’s Assessing Care of Vulnerable Elders have developed measures. The Measuring What Matters initiative—led by the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association—identified a number of high-priority measures essential to high-quality palliative care. Some innovative palliative care programs are using locally developed, nonvalidated indicators. The National Quality Forum (NQF) has formed a permanent standing committee that will review current and future measures for scientific reliability as well as tackle larger issues, including gaps in current measurement.
While these efforts have made important contributions, relatively few measures related to serious illness have been NQF-endorsed® and included in federal programs that evaluate the quality of care provided to Medicare beneficiaries by different clinicians and in specific settings. This reflects in part the challenge of clearly identifying, for measurement purposes, the serious illness population and the resources needed to move from measure concepts to measures that are tested, endorsed, and ready for use with electronic health records.
Building Consensus About Measures That Are Ready For Implementation
In September, the Gordon and Betty Moore Foundation and the Pew Charitable Trusts, with assistance from Discern Health, sought to identify a small number of setting-specific quality measures applicable to various types of serious illness that could be implemented immediately by the Centers for Medicare and Medicaid Services (CMS) for relevant Medicare quality programs.
The Discern Health and Pew teams—working closely with a multistakeholder panel of 16 experts (see Exhibit 1) and building on previous measurement initiatives—identified the most important gaps among the measures that Medicare currently uses for the home health, hospice, hospital, and nursing home settings, and recommended ways to fill those gaps. The panel also identified areas where new measures need to be developed, validated, and implemented to drive improvements in the care of seriously ill patients. Many of the recommendations build on the success of Congress in adopting the Medicare Access and CHIP Reauthorization Act of 2015 (MACRA), bipartisan legislation to reform physician payment and improve health care quality.
Exhibit 1: Multistakeholder Expert Panel
|Robert Arnold||University of Pittsburgh|
|Katherine Ast||American Academy of Hospice and Palliative Medicine|
|Helen Burstin||National Quality Forum|
|Julie Bynum||Dartmouth College|
|David Casarett||Duke University Health System|
|Barbara Gage||George Washington University|
|Maureen Henry||National Committee for Quality Assurance|
|Arif Kamal||Duke University|
|David Longnecker||Coalition to Transform Advanced Care|
|Karl Lorenz||Stanford University|
|Diane Meier||Center to Advance Palliative Care|
|Sean Morrison||National Palliative Care Research Center|
|Debra Ness||National Partnership for Women and Families|
|Justin Sanders||Harvard Medical School|
|Joan Teno||University of Washington|
|Deborah Waldrop||University of Buffalo|
The Expert Panel’s Recommendations
Although the panel identified only a few measures that could be implemented immediately in specific settings, there was consensus that additional measures, capable of driving change at the provider level and assessing the performance of the health care system as a whole, were needed. There was broad agreement from the expert panel that developing new measures would require better data to systematically define the population with serious illness and harmonize measures across settings, payment systems, and models. It would also require collecting information directly from patients and their families about their care needs and experiences.
Taken together, the following five recommendations from the expert panel outline a path to transforming the care that seriously ill people receive, especially near the end of life.
1. Implement Existing Quality Measures Applicable To The Seriously Ill In Medicare Quality Programs
Based on the expert panel’s review of the quality measures currently used in Medicare’s quality programs and an analysis of gaps in how care is being assessed for the serious illness population:
- CMS should add the Advance Care Plan measure (NQF No. 0326) to the Medicare Hospital Inpatient Quality Reporting program, the Hospital Outpatient Quality Reporting program, and the Long-Term Care Hospital Quality Reporting program. This measure is currently being used in the Home Health Value-Based Purchasing program and the physician Merit-based Incentive Payment System. Adding this measure to the additional programs would align measures across settings and promote communication between clinicians and patients. This measure assesses the percentage of patients older than age 65 who have executed an advance care plan, named a surrogate decision maker, or did not wish to or could not do either. People who participate in advance care planning discussions and have their wishes documented are less likely to receive unwanted aggressive medical treatment in their last weeks of life, less likely to die in a hospital or intensive care unit, and more likely to enroll in hospice.
- CMS should add the measure Patients Admitted to the ICU Who Have Care Preferences Documented (NQF No. 1626) to the Medicare Hospital Inpatient Quality Reporting program. This measure, which is not currently used in any Medicare quality program, determines the percentage of seriously ill elderly patients admitted to the intensive care unit (ICU) who have their care preferences documented within 48 hours or have documentation as to why this was not done. Half of all Americans who die in hospitals are in the ICU during the last three days of life. Roughly one-quarter of bereaved family members report that their loved ones received care they did not want while in the ICU. This measure works in concert with the Advance Care Plan measure by ensuring that as a patient’s condition changes, his or her treatment preferences are revisited and updated as appropriate.
Unfortunately, while there are many other gaps in serious illness–related measures within the Medicare programs of the four settings—hospitals, nursing homes, hospices, and home health agencies—the expert panel did not find other measures, either currently used by other Medicare programs or available more broadly, that they could recommend for adoption in these programs. This finding highlights the urgent need to develop new measures for these settings to assess the quality of serious illness care.
2. Improve Collection Of Patient And Caregiver Feedback
In addition to the measure-specific recommendations, the expert panel also called for the improved collection of patient and caregiver feedback on their experience with care. In particular, the panel suggested that the Agency for Healthcare Research and Quality as survey developer and CMS as survey implementer should enhance their existing consumer survey to:
- Include questions that are meaningful and appropriate for people with serious illness;
- Assess experiences across all care settings, specifically for those who move from one setting to another; and
- Enable proxy reporting when individuals cannot answer for themselves or have died.
The specific recommendations included:
- CMS should implement in all Medicare settings a supplemental set of questions to the Consumer Assessment of Healthcare Providers and Systems surveys to gather information about the perceptions and preferences of people with serious illness. The surveys should be completed by proxies, with the goal of capturing the experiences of patients who have died or who cannot speak for themselves.
- CMS should implement the Veterans Health Administration’s Bereaved Family Survey (NQF No. 1623) across all Medicare settings of care.
3. Standardize Data Collection To Help Identify Vulnerable Individuals
Efforts to assess the quality of care for seriously ill people, especially at the end of their lives, have been hampered by the lack of a uniform definition for serious illness (also known as the denominator problem). Accordingly, the expert panel recommended that all facilities collect standardized data evaluating patients’ functional status. People with serious illness have both chronic conditions and limitations in cognitive and physical functioning, including the inability to feed themselves and memory loss. Data on functioning is critical to the development of measures that target specific subpopulations and the incorporation of risk adjustment mechanisms that enable “apples to apples” comparisons. This recommendation is consistent with the intent of the bipartisan Improving Medicare Post-Acute Care Transformation (IMPACT) Act of 2014, which requires postacute care providers, including nursing homes and home health agencies, to collect standardized information. The panel recommended that:
- CMS should require that all facilities, particularly hospitals, collect standardized functional (that is, physical and cognitive) data at both admission and discharge.
In the long term, physicians’ offices and primary care settings should incorporate functional information into their data collection. Assessment of the cognitive status of beneficiaries who exhibit signs of dementia will complement the collection of data on physical status, and the administration should strongly consider developing better tools to evaluate and document cognitive status.
4. Create New Tools To Ensure Patients Are In Control Of Their Care
Although determining whether a patient received care based on the patient’s goals and preferences is difficult to measure, this assessment is essential to delivering patient-centered care and should be a priority for any future measure development. As such, the panel recommended:
- CMS should allocate a portion of funding from the Medicare Access and CHIP Reauthorization Act of 2015 to develop measures that ensure that patients’ goals, preferences, and values are honored.
5. Develop And Implement Measures That Align With New Payment Models
Medicare has traditionally paid for and assessed care delivery according to where it is given; and every setting, including the four analyzed here, has its own quality measurement program. However, patients with serious illness receive care across many settings, and efforts to assess whether a patient’s care was consistent with his or her wishes must examine the totality of care in all the places it was provided. As the health care system focuses on delivering higher quality and value, better assessments of patient experience will also ensure that vulnerable populations are not neglected during the transition away from care paid for under the traditional fee-for-service model. Yet none of the measures evaluating accountable care organizations, Medicare Advantage plans, or other alternative payment models addresses the needs of seriously ill populations. As such, the panel recommended:
- CMS should implement meaningful quality measures that can be used to assess the care that seriously ill patients are receiving under new payment models.
All of these recommendations were shared in a letter to Secretary Price and CMS administrator Seema Verma on March 14, 2017. Full details regarding the expert panel proceedings—including the methodology behind the research to support the recommendations and the measure scan and gap analysis—can be found on the Discern Health website.
Although the expert panel focused on setting specific measures for Medicare programs, the measures are only a starting place. Measures are also needed to encourage the movement toward more comprehensive, community-based care as part of the broader shift toward value and to ensure that the needs and preferences of individuals with serious illnesses are met. Accordingly, serious illness care measures are needed not only at the level of the setting where care is delivered but also at the community and program levels to assist policy makers and improve population health.
The aging of the US population and the move to value-based care provide two powerful reasons to develop and implement better tools to assess the care that people with serious illness receive. Ultimately, addressing measure gaps will improve outcomes, reduce variation in quality, and increase shared decision making. Let’s take advantage of this opportunity to drive the health care system forward to a more patient-centered approach that significantly improves the quality of life for an aging population.
We would like to acknowledge the contribution of the following individuals in supporting the work of the expert panel and developing the content of this blog post: Beth Berselli, the Gordon and Betty Moore Foundation; Lee Goldberg and Katy Barnett, the Pew Charitable Trusts; and Donna Dugan, Discern Health.