Knowing you can help someone regain their health and quality of life is a major driver and motivator for respiratory therapists. For many, that is what keeps them in the profession.
Neurorespiratory disease patients are a unique group and it takes a special therapist to work with them and their families. Lee Guion, BA, RRT, who recently retired from her position as a neuromuscular specialist at the Forbes Norris MDA/ALS Research and Treatment Center at California Pacific Medical Center in San Francisco, devoted much of her long career to these patients and authored the textbook, Respiratory Management of ALS, to help guide other RTs in the specialty.
Here is her best advice for anyone considering this area of care –
First and foremost, assess your comfort level working with people who have been diagnosed with a life-limiting disease, one for which there is no cure, and which may progress rapidly over a period of 2-5 years. Even more than knowledge, your patients and their families will be looking to you to listen to their symptoms and concerns with attention and empathy. Establishing trust is important to patients’ acceptance of timely respiratory interventions. Making informed decisions is important when patients and family discuss advanced directives, palliative care, and end-of-life goals. RTs play an important role as we elicit changes in lung function and breathing comfort.
Enjoy working with a multidisciplinary team of nurses, physicians, and allied health professionals. Because many neuromuscular diseases and motor neuron diseases like ALS affect all areas of the body, it takes a team to successfully provide care. You will operate independently as you assess signs of lung muscle weakness, elicit patient symptoms, and conduct lung function testing. But you will work with a team as you communicate your findings and incorporate others’ observations in order to reach comprehensive treatment recommendations.
Be comfortable in the role of liaison between the neuromuscular clinic, the hospital, and respiratory home care companies. Continuum of care is the Gold Standard of patient care, and we see it with neuromuscular and motor neuron diseases. When patients need respiratory interventions via mask ventilation, lung hyperinflation, cough assistance, or invasive ventilation, clinic-based RTs usually recommend initial settings for comfort and effectiveness. Treatment is initiated by a home care RT. Patient response to therapy, via clinical and data reports, is shared by home care RTs and adjustments are made as necessary. If a patient is admitted to the emergency department or CCU, clinic RTs can communicate current treatment and goals of therapy to their hospital-based colleagues or physicians. Clinic RTs can assist discharge planners with a patient’s smooth transition back home.
Connect with colleagues in neurorespiratory care, learning from them and sharing your experiences. Fortunately, diseases like ALS and Duchene’s muscular dystrophy are relatively rare. But because of this we may not encounter them in our textbooks or in our hospitals. Therefore, it falls to us to educate ourselves on the basics of the diseases and current treatment guidelines. Connect with others online through the AARC Neurorespiratory Community and at our conferences. The American Academy of Neurology hosts a daylong Allied Professionals Symposium prior to their annual ALS Meeting. The ALS Association hosts allied health conferences as well, where clinical research and best practice are shared. The camaraderie is inspiring and energizing.
Keep the conversation going
Join the AARC’s Neurorespiratory Community on AARConnect to network with other Association members who work in or are interested in this area of care.