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National Quality Partners Releases Issue Brief to Transform Advanced Illness Care in America

National Quality Partners Releases Issue Brief to Transform Advanced Illness Care in America

Zach Barehmi


For Immediate Release:

November 15, 2016

Washington, DC—NQF’s National Quality Partners (NQP) today released an issue brief, Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care. This much-needed resource aims to empower individuals with advanced illness, their family members, and caregivers to lead decisions about their care based on their personal preferences and values through changes to policy, practice, and measurement.

Advanced illness may impair daily activities, reduce mental and physical capabilities, lead to frequent medical treatments and visits, and increase the risk of death. Measuring the quality of advanced illness care services is critical given the increasing number of older Americans facing advanced illness. Over the next two decades, the number of people over 65 will nearly double to more than 72 million, or one in five Americans. The vast majority of people with advanced illness will be in this group, although advanced illness can occur at any age.

The issue brief highlights six key preferences of high-quality, person-centered advanced illness care:

  • Purpose and connection;
  • Physical comfort;
  • Emotional and psychological well-being;
  • Family and caregiver support;
  • Financial security;
  • Peaceful death and dying.


The brief also provides snapshots of organizations that have embraced one or more of these key areas and pinpoints opportunities to use quality measurement to transform advanced illness care.

NQP’s Advanced Illness Care Action Team, which includes 25 patients, care providers, physicians, nurses, spiritual advisors, and other experts from the public and private sectors, developed the issue brief. More than two dozen individuals and organizations that are leading robust initiatives to transform advanced illness care in the Unites States also provided input.

“NQP’s advanced illness care initiative unites the nation’s most influential stakeholders to spur national dialogue and action on this critical issue,” said Susan Frampton, PhD, president of Planetree, who co- chairs NQP’s Advanced Illness Care Action Team with David Longnecker, MD, chief clinical innovations
officer, The Coalition to Transform Advanced Care (C-TAC). “Now, more than ever, we must recognize that better patient engagement improves healthcare quality and lowers costs.”

“We are issuing a national call to action for healthcare systems, communities, and policymakers to work together to improve the lives of those with advanced illness,” said Dr. Longnecker. “We must ensure that in our highly fragmented and uncoordinated healthcare system, the goals, choices, and preferences of individuals with advanced illness care are the guiding North Star of all care decisions.”

Advanced illness care encompasses a range of services that bridge families, caregivers, communities, and the healthcare system. People with complex medical needs benefit from palliative care in various settings—including home, community, hospital, hospice, nursing homes, and other long-term care facilities—especially at the end of life, which may include hospice care.

In January 2016, the Centers for Medicare & Medicaid Services issued a final rule that reimburses physicians and other healthcare providers to engage in end-of-life discussions with patients. However, recent studies show that nearly two-thirds of physicians feel inadequately trained to address these challenging and often culturally taboo subjects. The issue brief highlights preferences of individuals with advanced illness to help guide these conversations.

Action Team members will discuss the issue brief in depth during a public webinar today from 2:00 – 3:30 pm ET and during an #hpm chat, Wednesday, November 16, 9:00 pm – 10:00 pm ET.

About NQF
The National Quality Forum leads national collaboration to improve health and healthcare quality. Learn more at www.qualityforum.org

About C-TAC
C-TAC is a non-profit, non-partisan coalition comprised of over 140 national organizations including patient and consumer advocacy groups, health care professionals and providers, private sector stakeholders, faith-based organizations, and health care payers that share a common vision of improving advanced illness care for all Americans. The Coalition works to ensure that all those with advanced illness, especially the sickest and most vulnerable, receive comprehensive, high-quality, person- and family-centered care that is consistent with their goals and values and honors their dignity.

Defining Advanced Illness Care
C-TAC defines advanced illness care as care that occurs when one or more conditions becomes serious enough that general health and functioning begin to decline, treatment may no longer lead to preferred outcomes, and care oriented toward comfort may take precedence over attempts to cure – a process that extends to the end of life.

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