RT spoke to representatives from home ventilator vendors about the challenges of home ventilation. Our participants are Elaine Lesnak, RRT, US marketing manager for home respiratory care for Philips/ Respironics Home Healthcare Solutions, Murrysville, Pa; Roger Mecca, MD, vice president for medical affairs, ventilation, airways, and monitoring, Covidien, Boulder, Colo; and Geri Robinson, global marketing director, GE Healthcare, respiratory and sleep, Madison, Wis.
RT: Regarding special populations, such as obese patients and children, what are the unique challenges they present for administering home ventilation?
Elaine Lesnak: Let’s start off with children. One of the challenges of children who require home ventilation is portability. Parents want their children to lead as normal a life as possible, and that includes attending school and other activities. So they’re looking for a product that is highly portable. Another challenge with children is that they grow. Their ventilation needs to change, and one has to closely monitor and evaluate their needs and make adjustments when necessary. Those are probably the two main challenges that one faces with children.
Obesity, on the other hand, is a very serious chronic disease. Respiratory consequences, such as obesity hypoventilation syndrome (OHS), are one of the major concerns in this population. So, long-term noninvasive ventilation is really an effective treatment for OHS, but positive pressure ventilators present challenges because they sometimes don’t deliver sufficient tidal volume. New technologies such as AVAPS (average volume assured pressure support) can compensate for changes in body position and can ensure target tidal volume, thus improving ventilation efficacy.
From a ventilation standpoint, however, it is more difficult to treat obese patients than it is to treat children.
Roger Mecca: I think the answer to this question falls into three categories. The first is that there are unique challenges that each type of patient presents. For example, obese patients present with changes in chest wall compliance and changes in their ventilatory needs that put special limitations on the mechanical ventilator. Children, for example, have unique needs in their ability to be mobile and play in a very interactive social sense that perhaps don’t equate with those of the adults.
The second issue is that there are specific limitations and needs that each particular disease state requiring mechanical ventilation incorporates. For example, [ individuals] who are being ventilated because they have high spinal cord transections have unique needs and requirements as opposed to someone, for example, who might be ventilated for end stage chronic obstructive pulmonary disease.
Finally, the unique challenge of this entire group of patients is that they require mechanical ventilation, which is a true life-supporting modality in a home environment where there aren’t a great number of ancillary personnel available. Often, the ventilation has to be overseen and managed by family members who are very skilled, but nonetheless not very professionally trained in respiratory therapy. That does present some unique difficulties for the deployment of the technology.
Geri Robinson: With regard to special populations, one of the important things is the coordination of care between physicians, home care provider clinicians, either home nursing or lay family caregivers, as well as the patients. Mechanical ventilation needs to be optimized within the context of all of the elements in the patient’s care plan. So the quality of life for that patient is very important. Does the patient work or go to school, in the case of children? The ability to engage in recreation, collaboration, and decision making, not just about their medical conditions, but anything relative to their lives. And communication is important. So for those patients who are on mechanical ventilation via a tracheostomy, for instance, the ability to be able to speak via a speaking valve may be an important part of the patient care plan as well. So, the overall context of the patient’s life is very important.
For children, if they were born prematurely and required mechanical ventilation, mechanical ventilation is their inherent frame of reference, if you will, in contrast to a child who is on mechanical ventilation as a result of trauma. If their frame of reference has always been a life with mechanical ventilation, obviously they don’t know a life without it. So any potential transitioning is important to consider. For the latter population, where they need mechanical ventilation because of trauma or an event in their life, that’s a significant disruption to them compared to the life that they knew before. Regardless of whether it is the former situation or the latter situation, their engagement to other key elements of life is very important: the ability to go to school, enjoy recreation, family participation, and community participation. So mobility is especially important. Not just for mechanical ventilation but also for the system of medical support. Mechanical ventilation is one element of it, but usually this patient population requires more supervision. There might be more medications that are involved or humidification to better manage the airway, for instance. So there could be a number of different elements or different devices that are important to the system of the care that they need to receive.
Physical growth and nutrition needs are also important. In particular, if there’s a goal or an ability to wean off the ventilator or be on ventilation less than 24 hours a day, or noninvasive ventilation if they currently have a tracheostomy, those would all be additional considerations that would be very important as well.
RT: What strides are being made to improve quality of life for patients on home ventilation?
Lesnak: Technology is making ventilation easier to use, more versatile, and more portable for these patients. Ventilators are becoming smaller and lighter primarily because of battery technology. As a result, patients are experiencing greater mobility. Recent ventilator technology also allows the caregiver to easily switch between daytime and nighttime settings, helping to decrease errors in the home.
Another trend in home ventilators is improved monitoring ability. For example, we’re introducing new ventilation data management software for our Trilogy100 product. It is called DirectView. This software allows physicians to effectively manage ventilation therapy and make adjustments when necessary, ultimately improving patient care.
Mecca: There are many advances that have been made in improving the quality of life. Certainly, the ability to provide extended periods of ventilation without the device having to be plugged into AC power is a major advancement with respect to mobility. There are batteries now that supply many hours of ongoing ventilation. So, people can be more mobile now; they can actually attend events that are outside without the fear of losing power on a ventilator and having to go to a hand ventilator until the ventilator can be recharged. Also, the ventilators are becoming smaller, lighter, and much more easily transportable, which again significantly improves people’s ability to be mobile and have more of a mobile lifestyle.
I think this is particularly important in pediatric applications of ventilators. We recently finished a consumer preference review of our new 540 home ventilators, where it was trialed on a young baby, and for the first time in her life, she was actually able to leave her crib and get down on the floor and play because of the lightness and portability of this new ventilator. Though that may seem trivial, for that family and that baby, it was actually a life-changing step forward in quality of life.
So there are many advances that improve the quality of life. The ventilators are getting quieter, they’re getting more effective, and there’s better alarming, so it improves safety. I think the entire industry is becoming more patient centric now with respect to quality of life.
Robinson: There are two important strides, I think. Certainly, within the last 10 years, the mechanical ventilation devices are clearly smaller. So they have smaller footprints, and they are also lighter in weight. In addition to that, they have higher functionality. What that means is that the device is able to handle more complex patient needs. For example, relative to the portability factor, devices used to be 35 to 50 pounds, 10 or 15 years ago. Now, they’re probably 15 to 25 pounds. The battery devices within these devices are also a lot better. So, you don’t have to be plugged into electrical outlets inside the home or inside a building. Now, they have internal batteries that vary in terms of duration. There are also backup batteries that are more transportable. So, it gives the patient a lot more freedom to participate in community activities and not be so tethered to a stationary space. Because of higher functionality of the ventilators, patients might be able to go home sooner than they might have otherwise in the past. So they would be able to transition from a hospital setting, or from a transitional setting, to the home, which gets them back into their more natural environment sooner.
RT: Will we be seeing any major shifts in home ventilation treatment in the coming years?
Lesnak: I believe so. I think we’ll continue to see that all who are involved with home ventilator patients make efforts to improve home monitoring and connectivity between the patients and their caregivers. This data connectivity from the home care patient to the care source has the potential to improve the quality of care and also the speed with which we can respond to situations that may arise in the home.
Mecca: I think there will be major shifts. I think, given the pressures that are on inpatient health care facilities, we’re going to see an increase in the complexity of problems with mechanical ventilatory issues that are dealt with outside the acute care facilities in home or in subacute settings. That will require, number one, ventilators that possess a slightly greater range of features and modalities than those that might currently be available. Number two, ventilators that are potentially a little bit smarter and a little bit more supportive of the nonprofessional user out in the home care setting than perhaps they are now. I know that in our research and development of our home ventilators, both of those issues are right up there on the radar screen as important features for the future.
Robinson: Perhaps different aspects of patient care will come together more. Currently, the patient may have a ventilator, a circuit, a humidification device, perhaps a nebulizer, often a wheelchair is in place, maybe suction equipment. So I think some of those elements may come together more.
In addition, I think there may be greater focus on solving patient needs as a system rather than piecemeal. So there may be improved innovations that are coming to the fore, and I think there may be additional avenues where there is greater self-management and self-education via some technology tools.
RT: Some clinicians feel there is a lack of standardized clinical practices and expectations in home ventilation. How is the industry helping to address these concerns?
Lesnak: I don’t agree with that statement as a whole. I think there may be areas that continue to need improvement. But there are standard clinical guidelines for home ventilation. The American Association for Respiratory Care (AARC) has clinical practice guidelines for long-term invasive mechanical ventilation in the home. Home care companies that provide equipment management and clinical respiratory services for ventilator patients have clinical practice and policy procedures, and they are typically accredited by organizations, such as The Joint Commission.
However, I do agree that one of the biggest ongoing challenges for the home care providers is the ability to provide training for their staff, especially as it relates to new technology. Philips Respironics provides resources to help clinicians using ventilation products to help better understand, troubleshoot, and operate the products. We also offer continuing education credits, product instructional CDs, and ventilation workshops for hands-on training. We offer patient and caregiver materials, such as DVDs and instructional manuals. It is our goal to continuously work to help clinicians, caregivers, and patients with product training.
Mecca: That’s an interesting question. To a degree, the clinical practice, the promulgation of standardized approaches, must fall into the realm of the physicians, respiratory therapists, and other health care professionals who deal with mechanical ventilation, and the societies that they generate to help standardize the care. Industry, to a degree, has to stay at arm’s length from prescribing or guiding actual clinical practices and the standardization thereof, because it’s not really the place of the device maker to promulgate that. Certainly, industry can participate in standardizing safety protocols and risk mitigations, and we can advise and, to a degree, orient the practice community. But that type of standardization really has to come from the providers. One unique challenge of home ventilation in that sphere is that there is often a durable medical equipment provider partnering with or acting as a surrogate for the health care provider who prescribes and oversees the home ventilation regimen. That can be a little bit difficult, because the physician and the respiratory therapist are a little bit more at arm’s length from the home ventilated patient than they are, for example, from the intensive care ventilated patient.
Now, I’ll put my physician hat on: I always keep my eyes open for opportunities, especially in this sphere of mechanical ventilation, to make suggestions or to try to promulgate a consensus among providers for different approaches to ventilation.
Robinson: Clinical education and support are extremely important. Manufacturers will continue sponsorship of education, not just product promotion. In terms of home mechanical ventilation globally, what are some best practice models? The United States may be a leading practice model, but there could be other models, say in Europe or Asia, that would be considered beneficial here in the United States as well. There are industry organizations that I believe have increased their focus on mechanical ventilation—both the AARC and FOCUS are examples of those.
RT: The economy continues to put pressure on already limited or poor insurance reimbursement for home mechanical ventilation and, in particular, backup ventilators. How is the industry helping patients to afford the care that they need?
Lesnak: These are clearly two different questions. Let’s talk first about the backup ventilators. Most insurers will not pay for backup equipment no matter what it is. But they will pay for a second ventilator if it falls within certain criteria. Some require the second ventilator to be used for portability. Or, if a patient lives in a remote location and can’t be reached in adequate time by the home care provider or emergency services, then they’ll pay for what they term a second ventilator. But it’s pretty standard that they won’t pay for backup systems in the home, but will pay for second pieces of equipment when it’s justified.
The second question: How is industry helping patients to afford care? When I look at it from a Philips Respironics standpoint, and being part of this industry, I think that we’re working to meet the demands of an aging population that’s managing more chronic diseases, and therefore utilizing more health care services. We believe that care in the home is a viable, cost-effective solution, and as a company, we believe in making care accessible through innovative product offerings. We’re also developing programs that help patients understand their health care options, and we’re actively supporting industry associations and industry groups. Some examples of that are we recently helped a young girl who was traveling to Florida through the Make a Wish organization. We helped with some issues with her equipment. We also recently partnered with a home care provider in lending EverGo portable concentrators to a group of COPD patients who were traveling with the Respiratory Alliance Smooth Sailing Cruise. So we work with several organizations trying to make a difference through community outreach.
Mecca: Certainly, industry, as the provider of mechanical ventilators, does everything possible to keep the cost of those ventilators both affordable for those patients and competitive within the industry. There is a certain amount of activity between industry and certainly between Covidien and regulatory bodies and insurance companies that might be providing insurance reimbursement for home ventilation. I will tell you that [regarding] the issue of a second backup ventilator in this particular venue, I personally feel that it is critical for patient safety and for the mental comfort of those who need to oversee home ventilation for a loved one. So I would certainly support any activities that were required to enhance the reimbursement for a backup ventilator. I don’t think that that’s a luxury. I think that’s a necessity for patient safety. I’m saying that as a physician, not as an industry representative for Covidien.
Robinson: The obvious way we help is by focusing on reducing cost as part of innovation. That’s clearly one way, but it’s also a difficult challenge. Another is a flexible cost structure. Maybe a simpler device at less cost may be appropriate for certain patient conditions, but another patient may need a more complex device. So, industry can help provide solutions that are not perhaps one size fits all, but maybe more customized so that it’s not costing the health care system a higher total across the patient population.
In terms of backup ventilators, I think that’s been a challenge for a long time. I think there is a trend for utilization of a less complex and less expensive backup option, or if home care providers are able to reach that patient within a certain period of time, there may be consideration to not have a backup device. That may also have tradeoffs in terms of stress for the patient or family if they have to use a different backup and learn how to use a different device. Optimally serving the patient is what is important. I think another element is that industry can help to educate the government and other appropriate entities about the total cost picture, and make sure that as legislators determine reimbursement guidelines, it’s done with the full picture of the patient’s condition, and not just the cost of the device or ancillary product needs.
RT: Do you believe there are enough community resources supporting the home mechanical ventilator patient and provider? How would you advise RTs to help their patients find more community resources?
Lesnak: There are a number of community resources available. Of course, that’s going to vary from area to area, but I think agencies such as the United Way, as well as disease-specific organizations, such as the ALS Association and the MDA, [can help]. There are also state resources. Some states have ventilator programs that help these patients. The Internet is also a good place to start searching from a clinician’s standpoint, to find resources for their patients. There’s also an organization called the International Ventilator Users Network, which supports ventilator users through education, research, and networking.
Mecca: There are never enough community resources to support people who are in the home care environment. I think that the resources that are available are highly motivated toward improving overall patient care and supporting people who are on individual mechanical ventilation. I think that the Internet is an evolving but still poorly used modality to bring educational support resources right into people’s homes for mechanical ventilation. I would advise respiratory therapists to explore what Web sites are available and to begin to interface with both regional and national societies and with industry to demand that additional Web-based support resources be generated for both the respiratory therapists who are interfacing with these patients and for the patients and families themselves. Judging from what is available, we need to support initiatives like interfacing with electronic retail, interfacing with entertainment venues, interfacing with search engines. I can’t believe that we can’t generate on a national basis a much more robust network of support sites on the Web for people who require home mechanical ventilation. If I were to advise industry, that would be the direction that I would look. One, because it’s wide open, and two, because it’s relatively inexpensive, and three, it’s definitely the wave of the future.
Robinson: There are myriad patient advocacy and community resources. Some are directly related to mechanical ventilation. Many are related to patient conditions that may need mechanical ventilation. The ALS Association is one, and NECA ([removed]National Emphysema/COPD Association[/removed]) is another. There’s the International Ventilator Users Network, so clearly there are some good ones out there.
In terms of respiratory therapists and physicians who are involved, there’s always additional room for professionals to be involved in the community forum. Clinicians working with home care patients are also involved in nonclinical impacts to a greater degree, be it logistics of school and work, variations in support, or key relationships for that patient. A good example of patient advocacy is Barbara Rogers’ work. She is a patient, but she’s also a tremendous patient advocate. She’s a founder of NECA. She is also a founder of Women in Lung Disease, also known as “WILD.” These are examples of unique collaborations between the patients, industry, and the clinical community.
Tor Valenza is staff writer for RT. For further information, contact [email protected]