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Helping Patients with Advanced Disease Breathe Easier: Expert Panel Issues Recommendations for ‘Dyspnea Crisis’

Report calls for improved care for patients who experience severe shortness of breath

October 25, 2013



elderly woman sitting in chair at home, nurse with stethoscope sits next to her

PORTLAND, Ore., October 25, 2013 – An American Thoracic Society panel of experts is calling for better care for thousands of Americans who suffer severe shortness of breath as a result of advanced lung and heart disease. These episodes can be very frightening for patients and caregivers, and the increased anxiety often makes the symptoms worse. In the current issue of the Annals of the American Thoracic Society, the panel suggests that patients work with their providers to develop individualized action plans that can keep these episodes from turning into emergencies.

“By the time paramedics arrive, the patients and their caregivers are usually panicked,” said Richard Mularski, MD, MSHS, MCR, a Kaiser Permanente pulmonologist who heads the panel that made the recommendations. “The paramedics often rely on inserting breathing tubes as the only way to safely give patients opioid medications to ease the sensation of suffocating.”

“For patients who don’t want breathing tubes or other life-sustaining measures, there are alternative relaxation and breathing techniques and medications that can ease symptoms, but these alternatives only work if they are planned for and practiced before the patient experiences shortness of breath,” added Dr. Mularski.

The panel refers to these episodes with a new term, “dyspnea crisis,” which describes an acute worsening of a dyspnea (shortness of breath) experience, a heightened psycho-social-spiritual patient response, and a setting in which unprepared caregivers are too overwhelmed to respond in an optimal manner.

To help patients develop an individual action plan, the panel suggests a pneumonic, COMFORT, that encompasses the key tools: Call for help with calming voice; Observe closely and assess dyspnea for ways to respond; Medications, which may or may not include opioids; Fan the face, which may decrease shortness of breath; Oxygen therapy if it has been helpful in past; Reassure the patient and use relaxation techniques; and Timing the interventions.

Other recommendations include:

  • Involve palliative care specialists and interdisciplinary care teams in developing the response plan.
  • Create a simple checklist for providers and caregivers with key elements of the response plan.
  • Share the checklist with all providers and post it at home where emergency responders can see it.
  • Complete and post advanced directives and Physician Orders for Life-Sustaining Treatment (POLST forms).
  • Revise response plans frequently to reflect the patient’s disease state and care goals.

Chosen by the American Thoracic Society leadership, the panel is made up of 27 clinicians, researchers and administrators specializing in pulmonary medicine, critical care, geriatrics, emergency medicine, respiratory care, nursing, medicine and social work. Members first met in 2009 to review the medical literature and systematic reviews on the management of dyspnea, including studies from 1999-2009. They have met several times since to review updated literature and to come up with the consensus recommendations.

Dr. Mularski is a pulmonary and end-of-life specialist with Kaiser Permanente Northwest, where palliative care teams work in the hospital and with outpatients in a coordinated fashion to provide the best individualized care for patients with advanced illnesses.

Panel co-chairs are Lynn E. Reinke, PhD, ARNP, of the University of Washington Medical Center; Virginia Carrieri-Kohlman, RN, DNSc, of the University of California, San Francisco; and Mark D. Fischer, MD, of Olympic Medical Center in Port Angeles, Wash.

About the Kaiser Permanente Center for Health Research
The Kaiser Permanente Center for Health Research, founded in 1964, is a nonprofit research institution dedicated to advancing knowledge to improve health. It has research sites in Portland, Ore., Honolulu and Atlanta. For more information, go to www.kpchr.org.

About Kaiser Permanente
Kaiser Permanente is committed to helping shape the future of health care. We are recognized as one of America’s leading health care providers and not-for-profit health plans. Founded in 1945, our mission is to provide high-quality, affordable health care services and to improve the health of our members and the communities we serve. We currently serve 9.1 million members in eight states and the District of Columbia. Care for members and patients is focused on their total health and guided by their personal physicians, specialists and team of caregivers. Our expert and caring medical teams are empowered and supported by industry-leading technology advances and tools for health promotion, disease prevention, state-of-the-art care delivery and world-class chronic disease management. Kaiser Permanente is dedicated to care innovations, clinical research, health education and the support of community health. For more information, go to: kp.org/share.