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EDITORIALS

Advancing a Common Understanding and Approach to


Dyspnea Management
Consensus Proposal for the Chronic Breathlessness Syndrome
Richard A. Mularski
Pulmonary & Critical Care Medicine, Kaiser Permanente Northwest, Portland, Oregon
ORCID ID: 0000-0001-6979-2542 (R.A.M.).

Dyspnea is an unpleasant subjective breathlessness—a more patient-centric motivated and informed by prior work
experience of discomfort with breathing and understandable term to those who characterizing the common patient
that generally worsens as underlying experience the symptoms of dyspnea (7, experience of reduced activity, emotional
disease processes increase in severity; in its 8). In responding to patient outcry about burden, and poor quality of life across
chronic and severe state, it can lead to crises of severe, acute breathlessness, the etiological diseases and pathophysiological
significant disability, progressive inactivity, ATS sponsored a project focused on pathways, the research group sought
social isolation, and substantive suffering identification, management, and optimal to characterize this subacute intense
(1–3). A number of groups have put resource use for effective palliation experience of breathlessness. Seeking
forward statements and guidelines to of acute episodes of dyspnea. An to refine the shared understanding of
inform care provision for dyspnea both interdisciplinary work group developed breathlessness that persists despite optimal
within common cardiopulmonary disease a consensus definition for a clinical treatment of the underlying conditions,
recommendations and more generally in entity called dyspnea crisis, giving the group sought to describe and define
cross-cutting works (1, 4–6). In the last our field a common vernacular and a syndrome by international expert
few years, the focus on dyspnea has begun understanding of the experience as consensus to move the field further forward
experiencing a renaissance similar to “sustained and severe resting breathing and provide a clear path for palliative care
the emphasis on the symptom of pain discomfort that occurs in patients with exploration and implementation.
some decades ago that advanced the advanced, often life-limiting illness [that] Using a three-stage Delphi consensus
understanding and management of this overwhelms the patient and caregivers’ process, international experts were
prevalent common experience of disease ability to achieve symptom relief” (9). In systematically interrogated to advance the
(7). As the field of palliative care advances, moving our field forward, the ATS panel agreement of nomenclature and defining
emphasis on dyspnea is needed across the suggested that patients work with their characteristics for the chronic experience
health care spectrum spanning research providers to develop individualized of breathlessness. Efforts emphasized
through care provision, with particular response plans that can limit such the need for a syndrome definition that
interest on shared understanding of episodes of acute breathlessness could cross languages and care settings
concepts that are grounded in patient from spiraling into anxiety-filled to primarily drive recognition of the
experiences to make coordinated progress crises that often result in medical clinical experience of breathlessness that
in discovery, treatment, and policy emergencies. is otherwise restricted without a common
decisions. In the European Respiratory Journal, focus in shared clinician–patient discourse.
In the last 5 years, the American Johnson and colleagues provided a mixed- In particular, a distancing from the
Thoracic Society (ATS) has revised its methods consensus-driven process to currently used adjective of refractory
comprehensive physiologically based bring experts in the field to a refined was purposely advanced, citing
statement on dyspnea with an update understanding of the more persistent unintended barriers that might be
on the mechanisms, assessment, and experience of severe dyspnea, as well as to created in suggesting futility in treatment
management of dyspnea (3). It has also provide a similar, unifying nomenclature or limiting palliative management
partnered with patient organizations such for the entity to guide further exploration opportunities that exist across causes or
as the COPD Foundation and others to and begin to establish a common approach pathophysiological mechanisms. Rigor
listen and respond to the patient’s voice by for advancing work on this particular was applied to span shared comprehension
exploring the individual’s experience with symptom experience (10). Similarly across Western languages in the

(Received in original form April 2, 2017; accepted in final form April 3, 2017 )
Correspondence and requests for reprints should be addressed to Richard A. Mularski, M.D., M.S.H.S., M.C.R., Pulmonary & Critical Care Medicine, The Center
for Health Research, Kaiser Permanente Northwest, 3800 North Interstate, WIN 1060, Portland, OR 97227. E-mail: richard.a.mularski@kpchr.org
Ann Am Thorac Soc Vol 14, No 7, pp 1108–1110, Jul 2017
Copyright © 2017 by the American Thoracic Society
DOI: 10.1513/AnnalsATS.201704-285ED
Internet address: www.atsjournals.org

1108 AnnalsATS Volume 14 Number 7 | July 2017


EDITORIALS

hope of describing the individual’s evolution that has led to expanding comprehensively evaluate implementation
disability in response to underlying management opportunities for those strategies (13–15).
impaired health in a consistent experiencing acute and chronic pain, a The authors of the European
manner, but Asian, Indian, Middle common acknowledgment of distinct Respiratory Journal chronic breathlessness
Eastern, Slavic, and other languages patient-centric experiential states syndrome work (10), like other pioneers in
were underrepresented in this initial across the continuum of dyspnea, such the field of dyspnea who have advanced
effort. The term chronic breathlessness as dyspnea crisis or chronic breathlessness shared understanding and better global
syndrome was advanced as satisfying the syndrome, gives our field a shared recognition of distinct patient experiences,
expert’s input and evolving framework to advance. As the authors have provided much opportunity for
consensus (10). note, acknowledgment alone, such as further work to expand research, advance
Chronic breathlessness syndrome was documented in pain as the fifth clinical care, and empower providers to
was further defined as “the experience vital sign movement, albeit necessary to partner with patients and caregivers
of breathlessness that persists despite allow further investigation and advance in seeking to manage and reduce the
optimal treatment of the underlying management of the dyspnea experience, suffering resulting from breathlessness.
pathophysiology and results in disability is unlikely to be sufficient to drive Johnson and colleagues noted, as
for the patient” (10). Focusing less on practice change or improve symptom the authors of the preceding ATS
pathophysiological basis, the research control (10–12). Much like the pivotal statements on dyspnea also emphasized,
group sought to delineate a syndrome mechanistic work done by many of the that, to move the field forward and
that, by better clinical recognition, may basic scientists and physiologists involved advance patient well-being, care
provide a framework for advancing in the current project, understanding providers must recognize the profound
understanding, documentation, and of fundamental human experiences of psychosocial impact that breathlessness
subsequent exploration of this symptom dyspnea is crucial, but our field must in all its forms has on quality of life and
experience. By clearly differentiating move toward the desperately needed must be willing to address palliative care
chronic breathlessness syndrome from clinical translation of palliation of needs concomitant with disease-focused
acute dyspnea worsening or, at its extreme, breathlessness within holistic health care for patients and their families (1, 3, 9,
the entity of dyspnea crisis, the opportunity care delivery. Effective therapy of 10). The challenging work ahead is to
is put forward to focus on the persistent breathlessness is complex, but build on these fundamental milestones in
patient and caregiver experience and thus comprehensive management programs dyspnea understanding to develop more
advance the palliative understanding and such as the Breathlessness Intervention integrated, comprehensive, and patient-
potential interventions associated with the Service in Cambridge, United Kingdom, centered approaches to manage
day-in and day-out experience of and the INSPIRED COPD Outreach breathlessness. n
breathlessness. Program in Halifax, Nova Scotia, Canada,
Similarly to the early work in pain are beginning to translate palliative care Author disclosures are available with the text
symptom characterization and the understanding of dyspnea and to of this article at www.atsjournals.org.

References dyspnea in patients with advanced chronic obstructive pulmonary


disease: a Canadian Thoracic Society clinical practice guideline. Can
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Editorials 1109
EDITORIALS

11 Mularski RA, Campbell ML, Asch SM, Reeve BB, Basch E, Maxwell TL, of a mixed-method randomised controlled trial. BMC Med
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1110 AnnalsATS Volume 14 Number 7 | July 2017


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