Care Redesign

Measuring Quality of Care for the Sickest Patients

Article · February 9, 2016

I spend a lot of time thinking about the Affordable Care Act (ACA) and how it will affect the sickest, most vulnerable, and therefore most costly patients in the United States. I practice in the relatively new interdisciplinary specialty of palliative medicine, which aims to improve the quality of life of people with serious, complex illnesses. So all of my patients are living with profound fatigue, pain, shortness of breath, financial and family stresses, and mountains of worry. The ACA’s focus on quality over quantity could increase attention to the needs of such patients. Or, with its twin focus on reducing out-of-control spending, the ACA might prompt a race to the bottom, as necessary — but costly — treatments are summarily avoided.

How do we ensure that the neediest patients receive care that is truly valuable to them, instead of the usual merry-go-round of costly emergency room visits and hospitalizations for problems that can — and should — be managed at home? The answer to this question lies in defining how the concept of “value” applies to patients who need palliative care, devising a system for rigorously measuring that value, and then implementing it in practice.

Value in the Era of the ACA

We know that a high-value health intervention simultaneously improves quality and reduces costs. Think of clean drinking water and vaccination, which save millions of lives at an extremely low cost per person. A quintessential low-value intervention is one that misapplies the power of modern medical care. Think of ICU stays for people with end-stage dementia or chemotherapy for cancer patients who are near death — very expensive treatments with no possibility of improving either quality or quantity of life. The ACA tightly links the goals of improving quality of care while reducing costs; that means measuring quality accurately and avoiding the often-perverse financial incentives of fee-for-service medicine. The ACA has begun to move the health care system in this direction. So why I am I worried?

My concern has to do with the profile of the patients I serve. Health care spending is highly concentrated, as it should be, on the people who are most ill and have the most-complex needs. In fact, the sickest 5% of us drive half of all health spending. Anyone running a health care system and trying to deliver value in the era of the ACA should obviously focus on these patients. But it is the nature of that focus that makes all the difference. The problem is not that caring for very sick patients costs more than caring for healthy people (of course it does!); it’s that how we spend that money typically ignores the top priorities of the very ill and their families. To appreciate those priorities requires an understanding of my medical specialty: palliative care.

Defining Value in Palliative Care

Working alongside a seriously ill patient’s regular medical team, the palliative care clinician focuses on relieving pain, symptoms, and other stresses. Studies of palliative care show that it improves patients’ and their families’ quality of life and reduces hospitalization and use of emergency services. A recent study of cancer patients also documented better survival rates for patients who received both palliative care and optimal cancer care than for those who received only the latter. In short, the evidence shows that palliative care works. How do we then achieve the greatest value with this effective care, giving patients neither less nor more than what they need?

We start by asking patients and their families what matters to them, not focusing on the disease alone. We recognize that for patients with serious, progressive (usually chronic) conditions, as their illness evolves, what matters to them and their families also changes.

Most patients value care that helps them stay at home and remain independent for as long as possible; that does not result in financial bankruptcy; and that tries to reduce suffering of all kinds — bodily pain, difficulty breathing, nausea, depression, anxiety, and existential and spiritual distress. Palliative care clinicians, working alongside the patient’s regular doctors, provide that support directly to patients and their often exhausted, overwhelmed family caregivers. But for that support to become the standard of practice, it must be bolstered by a system for measuring quality and outcomes, tailored to the unique needs of the palliative-care patient population and consistent with the value-based goals of the ACA.

Measuring the Value of Palliative Care

We know that cost-control efforts must focus on the sickest and costliest patients. How do we ensure that those efforts sweep out the unnecessary services (thereby achieving desired savings) while preserving and enhancing what very ill patients and their families need and value? The solution is a rigorous, transparent set of quality measures that hold providers and payers to standards that protect this vulnerable group. But the science of quality measurement is not advanced enough to measure what matters most to these patients, in part because patients’ preferences shift as illness progresses and because we don’t yet know how to allocate resources to achieve patients’ care-related goals.

The story of 89-year-old Joseph Andrey, recounted in the New York Times, illustrates the dilemma. Andrey’s only goal was to remain at home with the 24-hour personal-care support he needed until he died. Neither Medicare nor Medicaid (he had both) would cover this service, and his only daughter worked full-time as a schoolteacher. So Andrey spent the last two years of his life cycling among hospitals, nursing homes, and rehabilitation facilities. The costs: millions in taxpayer dollars and untold suffering for both the patient and his exhausted daughter.

Andrey’s story makes clear that knowing a patient’s goals isn’t enough. We must also align the supports and resources necessary to honor them. Specifically, we have to define the measures that would reveal that Mr. Andrey’s exorbitantly costly, primarily institutional care was of poor quality, precisely because it failed to honor his known and consistent preference to receive care in his own home.

How do we begin to encourage and measure the delivery of medical care that is of high value to patients with serious illness? In addition to following helpful advice from the American Academy of Hospice and Palliative Medicine, I suggest four tactics:

  1. Explicitly ask patients and their families what matters most to them, and ensure that this information is recorded, made available in the medical record, and actively used by all involved parties in decision making about care.
  2. Require that all clinicians (doctors, nurses, social workers, and others) receive basic training and certification in pain and symptom management, communication, and coordination of care across time and settings.
  3. Document and analyze the perverse financial incentives that impede delivery of care that is consistent with the priorities and needs of patients and their families.
  4. Measure and facilitate access to high-quality palliative care services for all people with serious illness, regardless of age, stage of disease, or care setting.

The challenge we face is obvious. If quality measurement is to achieve its purpose, the health care system must define and measure the outcomes that matter to the people at highest risk of neglect, undertreatment, overtreatment, and suffering. Cost containment is urgent and necessary. But so is protection for the patients most in need of care and least able to advocate for themselves.

New Call for Submissions ­to NEJM Catalyst

Connect

A weekly email newsletter featuring the latest actionable ideas and practical innovations from NEJM Catalyst.

Learn More »

More From Care Redesign
Improving Scores Through Human-Centered Design

Designing and Implementing Better Patient Experiences

An ophthalmology provider with facilities in the greater Mexico City area is using Human-Centered Design to improve both the patient and staff experience.

Joseph04_pullquote_hospital_wellness

Designing Hospitals That Heal as Well as Treat

Hospitals must provide wholesome food, sound sleeping conditions, and human connection to promote healing and wellness.

Health Care Organizations Only Occassionally Apply Design Thinking

Care Redesign Survey: How Design Thinking Can Transform Health Care

Health care leaders and frontline clinicians are eager to embrace design thinking. Yet its principles are not widely applied.

Chernew04_pullquote targeted supplemental data collection

Targeted Supplemental Data Collection — Addressing the Quality-Measurement Conundrum

Targeted supplemental data collection may be a valuable approach to balancing data needs with data-collection costs.

Opioid Prescriptions Strength Conversion Table

Tackling the Opioid Crisis with Clear Prescription Guidelines, Accurate Monitoring, and Provider Education

How a large physician organization reduced the amount of opioids prescribed per patient while increasing referrals for pain management consultation.

David Waters Community Servings CEO

Food as Medicine: Meeting the Needs of Complex Medical Diets

How Community Servings evolved from an HIV nutrition program to one that feeds people with any illness.

HaH-Plus Program Reduces Patient Days Spent in Health Care Facilities in Final 180 Days of Life

Hospital at Home–Plus Reduces Days Spent in Hospitals and Other Inpatient Facilities

Patients enrolled in Mount Sinai Health System’s HaH-Plus program spend about one-third as many days in health care facilities as inpatients in the last 180 days of life.

SLUCare General Internal Medicine Interactive Voice Response - Patient Access

Creating a Holistic Approach to Patient Access

To get beyond simplistic measures such as increased patient appointments or decreased lag days, operations administrators and physician champions must develop effective partnerships.

Bridgeport Hospital Senior Staff Safety Rounds - Improving Serious Safety Event Rate

Senior Staff Safety Rounds: A Commitment to Ensure Safety Is the Top Priority

Bridgeport Hospital leaders find that face-to-face feedback from physicians and staff leads to real-time improvements that have positively impacted safety.

Responding to Opioids Epidemic - chronic pain, opioids epidemic data

The Physicians’ Quandary with Opioids: Pain versus Addiction

The national addiction crisis has led to a crackdown on physician prescribing abilities for opioids. Frontline physicians and clinical leaders are torn between wanting to prevent addiction and wanting to treat chronic pain.

Connect

A weekly email newsletter featuring the latest actionable ideas and practical innovations from NEJM Catalyst.

Learn More »

Topics

Opioids Epidemic

19 Articles

Tackling the Opioid Crisis with Clear…

How a large physician organization reduced the amount of opioids prescribed per patient while increasing…

Social Needs

70 Articles

Moving from a Sickness Model of…

The expense of the U.S. health care system is so misaligned from what we need…

Mental Health

23 Articles

Designing Hospitals That Heal as Well…

Hospitals must provide wholesome food, sound sleeping conditions, and human connection to promote healing and…

Insights Council

Have a voice. Join other health care leaders effecting change, shaping tomorrow.

Apply Now