Abstract
Over the course of the next several months Chronic Respiratory Disease will publish a series of articles that focus on palliation of dyspnea. Contributors to the series come from several disciplines as befits a symptom that defies our traditional narrow biomedical approaches. They will be providing insights from their expertise in pulmonary rehabilitation, spiritual care, pediatrics and conventional adult practice. The range of articles is a response to the inherent complexity of a symptom that has long lagged behind pain as worthy of our research, educational and clinical endeavors. As this decade progresses, we will see some major advances in our understanding of dyspnea, an understanding that will inform and hopefully transform traditional strategies. Innovative thinking and a move toward a more holistic approach able to appreciate and address the affective impacts of dyspnea 1 will be at the core of these patient- and family-centered initiatives.
On an individual patient basis, such initiatives may come in the form of a ‘Cadillac action plan,’ a phrase recently coined by a patient’s daughter. Her mother had struggled with advanced chronic obstructive pulmonary disease (COPD) for years, had lost faith in her previous physicians, had lost hope and was ready to die after yet one more admission to a medical floor. Some years later, this same woman made a video which I will show at conferences from time to time. Her last words on this film say it all – ‘I still enjoy my life.’ What changed? I would argue that we simply took the time required for both of us to better understand her illness, her values, beliefs and how these influenced her desired goals of care. We moved away from the traditional and reactive hospital-based management and toward a wider focus that included in-home education, specialist visits and the creation of an enhanced support network to strengthen hope and psychosocial coping. In a second phase, we implemented targeted interventions for the management of her chronic dyspnea, viscid secretions and her acute dyspnea crises (including instructions in use of sublingual fentanyl). All these have allowed her to remain at home for subsequent years with only occasional short admissions for exacerbations. It has been a remarkable and very rewarding turnaround, but it is not unique. It is simply an example of an effective multifaceted approach to dyspnea 2,3 that can be life changing when tailored to individual patient and family needs.
On a broader societal basis, I suspect that the United Kingdom and Europe may be ahead of those of us living in Canada in terms of implementation of outreach programs. We initiated one here in Halifax last year, which was in effect the knowledge translation piece following some years of research funded by the Canadian Institutes of Health Research to understand how to improve quality of life for those living with advanced COPD. It is remarkable how effective some relatively simple strategies can be: educational interventions in the home, access to an effective help line, an action plan to use when the next exacerbation looms 4 – in short, ‘right care, right place, right time.’ Among a cohort of patients with multiple previous admissions and in addition to consistently positive and appreciative feedback, we have seen significant reductions in emergency room visits and in hospital length of stay for those enrolled in the program, and many also engaged in advance care planning discussions at home. It is not uncommon to hear these patients labeled as ‘frequent flyers' but they do not choose to ‘fly,’ and the perks of loyalty programs elude them. The problem, as Sara Booth so eloquently puts it recently, 2 is that no one addresses the real reasons behind each ‘flight.’ To do so, we require to move beyond strictly biomedical to explore new territory and respect expertise unfamiliar to many traditionally trained chest physicians. Grappling more effectively with the psychosocial and existential distress of living with dyspnea and the associated uncertainty of exacerbations and crises demands new skills, new teams and new approaches. Over the next year, this series will cover some aspects of such multifaceted approaches, beginning with a contribution from Duke University in North Carolina outlining their experiences with a rapid education model. My thanks to the editorial board of Chronic Respiratory Disease for this opportunity to highlight some initiatives and perspectives that I hope will be of interest.