For most individuals, the COVID-19 pandemic was the first time that they experienced what it is like to have to stay in their homes, only leaving on carefully planned trips for necessities. But, for the over 1.5 million adults living in the United States reliant on long term oxygen therapy, this need to carefully plan any trip outside the home was already their reality.
While individuals who are prescribed oxygen therapy are provided the equipment needed to sustain life inside their homes, they are not provided with the necessary resources to keep living fully – for that they must invest their own money, time, and energy.
In the United States, 6.4 percent of adults reported being diagnosed with chronic obstructive pulmonary diseases (COPD) in 2013, the most common reason patients use oxygen at home. The unfortunate misconception is that adults with COPD living on oxygen have gotten that way solely due to poor personal choices that could have been avoided. While it is true that a majority of COPD diagnoses can be linked to cigarette use, there are many other factors such as environmental pollution, medical history, and even genetic makeup that can cause COPD. As a result of a COPD diagnosis and oxygen dependence, these patients frequently report mobility issues, lack of access to portable concentrators, and equipment malfunctions as their main limitations, though they also cited inadequate information and insurance coverage as being of high concern as well.
Similarly, a survey of over 830 COPD patients found that “challenges with portable oxygen have been shown to hinder activities of daily living, exercise, socialization, work and travel.” This is exacerbated by the fact that the most commonly prescribed portable oxygen delivery system, gas tanks, only allow for 1.4-2.3 hours of use, dependent on tank size.
The inability to leave the home due to inadequate oxygen supply affects patients with multiple cardiac and pulmonary diseases but is most profound for patients who have high oxygen requirements.
While portable oxygen concentrators can provide for longer periods of time away from the home and are the only FAA-approved devices for air travel, these can be cost prohibitive for many patients or require authorization periods. As a result, when patients need to travel, it requires extensive planning and often extra costs.
Given these complexities, in late 2021 researchers at the National Consumer Law Center and Yale conducted interviews with patients who require oxygen to explore the physical, social, and financial costs of living reliant on long term oxygen therapy. The results suggest that while patients are provided with the equipment needed to maintain life, they are not provided with what is necessary to live a fully participatory and comfortable life with dignity.
All respondents spoke of how disruptive home concentrators are for them and their family — the machines are loud and heavy, the nose pieces are uncomfortable, and the extensive lengths of tubing are cumbersome and present a tripping hazard.
Often patients had to incur additional, non-covered expenses to maintain their quality of life and safety, such as purchasing retractable tubing to prevent falls, better fitted nasal cannulas to prevent complications such as bleeding, additional POC/tanks to keep their oxygen levels within a normal range when they leave the house, and backup generators to prevent abnormally low oxygen levels in the event of a power outage.
Even with portable equipment, every outing takes extensive planning, making travel feel like an impossible activity for many. Respondents also mentioned a broad lack of understanding (equipment dropped off without any training provided), and even stigma around living with oxygen, and frequently talked about the need to educate themselves, their friends and family, the public, and sometimes even their own physicians.
For patients with COPD and many other diagnoses that require home oxygen therapy, patients, physicians, nurses, respiratory therapists and insurance companies should develop individualized plans to meet the needs of each patient. These therapy plans should consider mobility, home living circumstance, emergency situations such as power outages, and comfort and safety within the home.
Local, state and federal laws must be updated to ensure the needs of those using oxygen are fully met, including working with stakeholders to understand and meet these needs. Ultimately, it is only through considering the entirety of our patients’ needs that their quality of life can meaningfully be improved.
Anna Kowanko is a research associate at the National Consumer Law Center.
Susan Jacobs, MS RN FAAN, is Research Nurse Manager at Stanford University and Chair of the American Thoracic Society (ATS), Oxygen Special Interest Group.
Dr. Peter Kahn is a fellow in the Section of Pulmonary, Critical Care and Sleep Medicine at Yale School of Medicine. He graduated from the Albert Einstein College of Medicine with honors and his M.P.H. from the Johns Hopkins Bloomberg School of Public Health in the department of Health Policy and Management. Dr. Kahn’s research has focused on health policy with a particular interest in the impact of climate change and utilities on health policy. Follow him on Twitter @PeterKahnMD