Editor’s Note: This post is the third in a periodic Health Affairs Blog series on palliative care, health policy, and health reform. The series features essays adapted from and drawing on an upcoming volume, Meeting the Needs of Older Adults with Serious Illness: Challenges and Opportunities in the Age of Health Care Reform, in which clinicians, researchers and policy leaders address 16 key areas where real-world policy options to improve access to quality palliative care could have a substantial role in improving value. 

In the United States, value is the new health care imperative – improving quality while controlling costs.  We spend nearly twice the rate of comparable nations, yet have poorer health outcomes.  In 2010, President Obama signed the Patient Protection and Affordable Care Act (ACA), mandating a new emphasis on paying for value, not volume.

Our greatest opportunity to enhance value in US health care is to improve quality of care for older adults with serious illness – the group who uses the most health care services. Serious illness, in which patients are unlikely to recover, stabilize, or be cured, is life-altering for patients and family caregivers.  It includes advanced, symptomatic stages of diseases such as congestive heart failure, chronic lung disease, cancer, kidney failure, and dementia. Serious illness may also refer to the cumulative consequences of multiple conditions progressing over time, causing functional decline or frailty.

We’ve made important progress in understanding high quality care for this population of patients.  Researchers have asked patients with serious illness and their families how they define high quality care.  Especially in serious illness, patients want control over treatment through shared decision-making.   Even when there is no cure, most patients still want health care that helps them live longer – but only if they can also get help with function, physical comfort, and attention to family, emotional and spiritual needs.

We know what types of health care help patients and families cope with serious illness.  A 2012 report to the Agency for Healthcare Research and Quality finds evidence for three types of care to improve health outcomes:

  1. Expert pain and symptom treatment
  2. Communication to engage patient preferences for treatment decisions
  3. Interdisciplinary palliative care

We’ve developed quality measures to understand how often real-world care lives up to these ideals.  Quality measures for serious illness have to be feasible (not too costly to collect), actionable (under the control of clinicians and health systems), reliable (easily measured the same way by different data collectors) and valid (meaningfully connected to patient-centered outcomes).  They also have to work across different diseases and healthcare settings.

Some of these quality measures have been tested to make sure they work in practice to improve care for older adults with serious illness. In early 2012 the National Quality Forum endorsed 14 quality measures for hospice and palliative care.  Among these validated measures are 3 surveys of family caregivers after death and 11 measures to capture aspects of serious illness care from medical records.

This progress is exciting, but there is further work to be done to measure and improve the quality of care for seriously ill patients.  Here are the key next steps:

  1. Identify patients with serious illness as a unique population in all health care settings. Until patients with serious illness are identified as a unique population in all settings, they will be targeted with disease-specific or preventative quality metrics.  Quality measurement may result in imposition of unwanted tests or treatments while failing to target what patients want and need when seriously ill.
  2. Measure what matters to patients with serious illness.  Once we identify a patient as seriously ill, quality measures should focus on the right priorities – relief from pain and other distressing symptoms, independent function, and shared decision-making for major treatments.  A corollary to this recommendation is that quality measures emphasizing prevention or disease-specific processes of care are less relevant and should not be applied.
  3. Respect preferences and promote shared decision-making.  We need new ways to support and reward the use of decision aids, structured clinical communication, and intensive clinician training to improve shared decision-making.
  4. Assist hospice organizations to improve care using quality measurement and benchmarking. The Quality Assessment and Performance Improvement regulations for hospice providers are promoting hospice growth in electronic health records and quality measurement. Smaller, rural and non-profit hospice organizations may require greater technical assistance to make these changes.
  5. Coordinate care for older patients with serious illness across settings.  Current approaches to quality measurement are setting specific, yet seriously ill patients experience a multitude of providers and transitions between sites of care.  Innovative organizations are testing these models.  However, the translation of these models to universal practice remains uncertain.
  6. Improve access to clinicians with expertise in the care of seriously ill older adults.  Profound workforce shortages exist in geriatric care, palliative care and hospice, especially for smaller, rural or primary access hospitals.  We will need innovative ways to improve access, strengthening the specialty workforce and enhancing expertise among primary providers.

Seriously ill older adults deserve quality health care – care with evidence-based interventions to promote communication and shared decision-making, expert pain and symptom management, and access to specialty palliative care.  Measuring what matters to these patients – and their families – will happen soon in hospice.  Our next great challenge is to extend these quality of care standards to seriously ill patients in all health care settings.