INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
This issue sponsored by:
VOLUME 32, NUMBER 6
Douglas A. McKim, MD, FCCP, DABSM
This year's Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation was awarded to Douglas A. McKim, MD, FRCPC, FCCP, DABSM and was presented on October 8th at CHEST 2018 in San Antonio, Texas. Dr. McKim is Professor of Medicine, University of Ottawa and Medical Director, CANVent Respiratory Services and The Ottawa Hospital Sleep Centre in Ottawa, Canada. This was the 18th year the lecture was given at the annual meeting of pulmonologists to educate physicians about home mechanical ventilation..............MORE
IVUN is preparing the 2019 edition of our popular Resource Directory for Ventilator-Assisted Living. Be sure to check your listing and respond to IVUN with any corrections or updates................MORE
Vol. 32, No. 6, December 2018
Editor: Brian Tiburzi
Designer: Brian Tiburzi
Permission to reprint must be obtained from Post-Polio Health International (PHI) at firstname.lastname@example.org.
Saving Lives, One Ventilator at a Time…
HMV in 2018… and beyond
The 2018 Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation
Douglas A. McKim, MD, FCCP, DABSM
This year's Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation was awarded to Douglas A. McKim, MD, FRCPC, FCCP, DABSM and was presented on October 8th at CHEST 2018 in San Antonio, Texas. Dr. McKim is Professor of Medicine, University of Ottawa and Medical Director, CANVent Respiratory Services and The Ottawa Hospital Sleep Centre in Ottawa, Canada. This was the 18th year the lecture was given at the annual meeting of pulmonologists to educate physicians about home mechanical ventilation. This is Part 2 of 2. Part 1 appeared in the October issue.
Douglas A. McKim, MD
Now, I want to spend a very brief moment discussing ventilation. This talk is about ventilation after all, isn’t it?
A word or two about Ti. Inspiratory time, or Ti, is the time over which pressure support is provided from the moment ventilator is triggered or machine initiated to the moment its cycles in to exhalation. I took this figure from Lisa Wolfe’s lovely review paper on the initiation of NIV. Of critical importance in restrictive respiratory mechanics, even having set the inspiratory time at a specific value, the true Ti may be considerably shorter.
Click any image in this article to expand
I am not going to suggest that this is a one way to achieve adequate ventilatory support with minimal pressures but I am going to share my “unbiased” view.
This is an excellent paper to help one better understand modes of noninvasive ventilation. Briefly, inspiratory time and cycling into exhalation in the spontaneous mode are determined by inspiratory flow rate and therefore patient effort. When inspiratory flow drops to a preset value, the default usually being 25% of maximum inspiratory flow, the ventilator cycles into exhalation. The more rapidly inspiratory flow falls, the shorter the inspiratory time is and therefore the smaller tidal volume will be. In the context of neuromuscular restriction and weakened inspiratory muscles, inspiratory flow drops rapidly resulting in what may be extremely short inspiratory times and decreased minute ventilation.
Therefore, particularly in the context of neuromuscular weakness, we must control the minimum inspiratory time. In the pressure control mode,m whether or not there is a spontaneous or a machine delivered breaths, the inspiratory time is maintained at a given preset minimum value. Many sleep laboratories set bilevel devices in the spontaneous mode with a minimum inspiratory time as little as 0.3 seconds. Generally, our minimum inspiratory time is 1.5 seconds, often longer.
Consider the expanded illustration of pressure support in the S/T mode, where only breaths indicated by the downward spike, circled in red, are machine delivered. One can see that the inspiratory time during the machine delivered breaths is markedly greater then the spontaneous, patient initiated breaths. The significantly reduced inspiratory time results in a decreased tidal volume and an overall reduction in minute ventilation.
The set inspiratory time in the S/T mode only applies to machine delivered breaths (in Respironics products). The spontaneous breaths are provided in the auto track™ system and cycling into exhalation is determined solely by the ability to sustain inspiratory flow, not by the set inspiratory time. A Ti set at 1.5 seconds, could in reality be as little as 0.5 seconds.
I think that we need to recognize John Bach and others for encouraging us to recognize those individuals with little or no respiratory function and up to 24-hour ventilator dependence who can still be successfully weaned from invasive ventilation.
This is a young man (below) with DMD whom I had never seen before. He was intubated for acute respiratory failure, bilateral pneumonia and had no experience with noninvasive ventilation or airway clearance strategies. His vital capacity measured through the endotracheal tube was 230 cc.
In spite of this and all due credit to the critical care physicians I work with who remain open-minded to my approaches, he was extubated within 48 hours to noninvasive support, using a mouthpiece while awake and a noninvasive mask when asleep. He underwent frequent mechanical airway clearance with the cough assist device as well as learning how to perform LVR with the mouthpiece. His vital capacity gradually increased to 600 cc, his MIC to 845 cc and at the time of discharge home had weaned himself to nighttime only NIV.
Prior to his extubation, I took the opportunity to record different pressures and cough flows through the endotracheal tube. Interestingly, even at pressures of +40 and -50 through a #8 endotracheal tube, peak expiratory flows were only 135 L/m. And yet, these flows did appear to be clinically effective resulting in the clearance of secretions through the endotracheal tube.
Once extubated and using a noninvasive mask for mechanical cough assistance, again it was seen that at typical pressures of +40 and – 40 centimeters H2O, peak expired flows were barely over 100 L/m. Although clinically effective, these results beg the question as to how we may best individually tailor mechanical cough assistance in order to optimize inspiratory volumes and expiratory flows.
In the interests of either preventing the unnecessary intubation of patients with severe respiratory muscle weakness or successfully extubating them, I would love to show you this video [this video is not available to IVUN] which demonstrates use of mouthpiece ventilation in the critical care unit accompanied by mechanical cough assistance and manually assisted cough in order, in this case, to prevent the intubation of a gentleman with Becker’s muscular dystrophy. He successfully managed to avoid intubation.
Similarly, this gentleman with C2 tetraplegia has understandably no vital capacity and yet with glottic control can easily perform lung volume recruitment with a Passy-Muir valve in line.
One can ensure the performance of effective LVR by monitoring the airway pressure on the ventilator which you can see rises with sequential breaths up to almost 50 centimeters H2O.
The resulting MIC can also be measured and is in fact over 4 L in a patient with a zero vital capacity. Indeed, it is my view that it is critical to measure the MIC VC difference early in the respiratory care of individuals with spinal cord injury and to follow this value regularly as a measure of general health, bulbar function and perhaps most importantly, respiratory system compliance. In this case, compliance>=80 cc/cm H2O.
Mouthpiece ventilation is very useful in this context in order to maintain more autonomous ventilatory support and to facilitate lung volume recruitment and speech, as well as to increase the hours of ventilation without the tracheostomy. This can easily perform a bridge to full-time noninvasive ventilatory support and eventual decannulation. Before this gentleman had his diaphragm pacer installed he spent all day, much of it outside of his ICU room, using mouthpiece ventilation.
I think that we as a community owe a considerable amount to John Bach, Miguel Goncalvez and others in the effort to recognize the utility of 24-hour noninvasive ventilatory support in the prevention of unnecessary tracheostomy ventilation. We have also tried to present our experience with full-time noninvasive ventilatory support in Duchenne muscular dystrophy and ALS. With this effort in mind, we have provided 24-hour noninvasive ventilatory support to more than 60 patients with ALS, muscular dystrophy, spinal cord injury, post-polio syndrome, syringomyelia and myopathies. The ability to prevent invasive ventilatory support in appropriate individuals or to convert invasive to full-time noninvasive support will decrease the complexity of care and facilitate return to the community.
This is one of our more recent mouthpiece ventilated patients with ALS who successfully used 24-hour noninvasive ventilation including mouthpiece during the daytime for 7 years. He refused to undergo a tracheostomy.
This is a breath to breath download from his overnight trilogy ventilator demonstrating 100% machine delivered breaths, a fixed backup rate and an excellent tidal volume of approximately 700 cc. And, a perfectly normal overnight oximetry.
One can see here the complete loss of spontaneous VC but the maintenance of an almost normal MIC. It is only with the loss of the MIC-VC difference that continuous NIV becomes more difficult or impossible.
Of course, in individuals who experience increasing impairment in bulbar function and risk for aspiration or the inability to retain the mouthpiece any longer, such as in ALS, the timing for end-of-life care or tracheostomy support, if desired, can be indicated by the loss of MIC VC difference as one can see here dropping over a period of months from almost 2 L to 200 cc. This patient went on to have successful elective tracheostomy.
Could a free pool of ventilators assist you in your work?
We are very fortunate in Ontario and in a couple of other provinces in the country to have access to provincially funded respiratory equipment. This is funded through the Ministry of Health, supported by general taxation.
This allows for the provision of up to two bilevel devices or ventilators in the home in addition to a cough assist for those who qualify. Handheld resuscitation bags for LVR are also available and for children, oximeters and apnea monitors. All respiratory devices are equipped with backup rates and many ventilatory modes are available including volume assured pressure support including automatic EPAP. Not only are these devices available as a lifetime loan, but a small quarterly allowance is also provided to assist in the purchase of disposables such as tubing, filters and masks.
There are well over 5000 individuals served by the ventilator equipment pool (VEP). An educational visit is provided in the home by a VEP respiratory therapist for each device acquired. There is a 24-hour toll free line for troubleshooting, and faulty devices can be replaced within hours. The largest proportion of individuals utilizing the VEP have neuromuscular disorders, although, as everywhere, the proportion of complex apnea and obesity hypoventilation is rising. The proportion of individuals with COPD remains low.
Of the total number of devices which are distributed, 72% our bilevel devices, 8% are hybrid ventilators (of which three-quarters are invasive), 9% are CoughAssist devices and 12% are oximeters in the pediatric age group. These numbers highlight the small proportion of invasive ventilatory support in the community.
Not that size matters but…we have over 900 clients in our region who utilize services from the ventilator equipment pool.
I wanted you to appreciate the "onerous" process that one must navigate in order to obtain a bilevel device a cough assist device or a ventilator for a patient. It takes all of a few checkmarks, a signature and a date. The cost per year per client - $1177 CAD. One year in an ICU costs roughly $1,200,000 CAD. This is an incredibly cost-efficient health service for which we are very thankful.
The other clear advantage of working with the VEP is the large population of ventilator users on whom data is being collected. This is a graphic illustration of preliminary data on 19 ALS patient’s using the CoughAssist device. Each point represents a treatment session and the top graft shows the distribution of sessions throughout a 24-hour period begins with 19 patients and Ann’s with 45. Interestingly, there appear to be 3 phases, the first one randomly distributed between 5 am and 4 pm and the final one clearly illustrating much more timed administration, suggesting possibly longer survivors are being provided cough assistance on a caregiver schedule. The graft below illustrates peak cough flows generated by the CoughAssist device and, interestingly, the vast majority is below the generally accepted requirement of 270 L/m.
In this graphic representation one can again see in the small number of Duchenne patients around the random initial utilization followed by a very set schedule. Again, peak cough flows fall well below those generally agreed to be effective. One must question therefore whether or not these seemingly lower cough flows are effective or not and if so, do we need to re-think the requirement for a specific threshold value or make an assessment of clinical effectiveness.
To the best of our abilities we have also been involved in knowledge translation. With a grant from Muscular Dystrophy Canada and The Ottawa Hospital Academic Medical Organization we have developed the CANVent website as an educational resource for clinicians, at risk or ventilator-assisted individuals and caregivers.
With patient and caregiver engagement we have tried to provide education and noninvasive airway management in a chronological fashion from at-risk through to NIV, intubation and decannulation. There is an associated YouTube channel with multiple videos and patient experiences. The GPB video has over 50,000 hits! We sincerely hope that you and your patients find this useful and will try to keep it updated.
The Future of HMV?
Tele-monitoring and remote adjustments
ExPRT (extended practice RT)
Weaning invasive to continuous NIV for RMW
Transitions: Pediatric to Adult, Home-Hospital-Home
Radiology of MIC-VC
Individually tailored Mechanical Cough Assistance
I am not going to suggest that there is one way to achieve adequate ventilatory support with minimal pressures, but I am going to share my “unbiased” view. You will of course recall this successful use on noninvasive ventilation early in my career.
Her daughter is now 32, and I am still looking after her mother more than 30 years later!
This is not the only time we have used NIV to assist a mother through pregnancy and respiratory failure. This is a young pregnant woman with spinal muscular atrophy, managed with negative pressure “poncho” ventilation. (This NEV 100, negative pressure ventilator also came from the ventilator equipment pool.)
This result has to be among the greatest joys we can obtain from our work. That’s two lives saved, one ventilator at a time.
That must be a Number Needed to Treat of 0.5! That is why, in the immortal words of Aretha Franklin, those of us who do this work deserve a little more R-E-S-P-E-C-T!
We need to remember our responsibility to continue to bring the greatest level of independence to our patients. Margaret Pfrommer, who was living in a nursing home, was encouraged by a physician to seek a better, more independent life.
I did not have time to speak about all the work that has been published by the CANuVENT group in Canada led by Louise Rose, but if there is any interest I suggest that you Google or PubMed "Louise Rose." Thank you.
Past Awardees of the Margaret Pfrommer Memorial Lecture in Home-Based Mechanical Ventilation
Dominique Robert, MD
Colin Sullivan, BScMed, MB, BS, PhD, FRA PhD, FRACP, FAA
Augusta Alba, MD
Joseph Ramsdell, MD, FCCP
Anita Simonds, MD, FRCP
John Downes, MD, FCCP
Barry Make, MD, FCCP
Allen Goldberg, MD, FCCP
Dudley Childress, MD
Joshua Benditt, MD, FCCP
Nicholas Hill, MD, FCCP
Norma Braun, MD, FCCP
Roger Goldstein, MD, FCCP
Judith Fischer, MSLS, and Joan L. Headley, MS
John R. Bach, MD, FCCP
Thomas G. Keens, MD
Audrey J. King, MA
2019 RESOURCE DIRECTORY COMING SOON
IVUN is preparing the 2019 edition of our popular Resource Directory for Ventilator-Assisted Living. If you are listed in the Resource Directory, please check your information to ensure it is correct. If you are not listed but would like to be, please contact us at email@example.com with the relevant information. We also rely on our members to keep up us up-to-date by providing us with recommendations of physicians and facilities for inclusion in the Resource Directory. Email or call us at 314-600-2113 if you have anyone to recommend.
The 46-page resource contains listings for:
Respiratory Home Care Companies/DMEs
In-home Care Agencies
Networking Resources for Ventilator Users
Ventilator Equipment and Aids
Organizations, Associations and Foundations
Ventilator Care Facilities
Congregate Homes for Long-Term Ventilator Users
The Resource Directory is always available to view online for free. For those who wish to have a print copy, one may be ordered online in our secure store for $15. Other terrific IVUN publications, such as the Home Ventilator Guide and Take Charge, Not Chances, are also available.
New Disability Rights Factsheet for Public Schools Published
The NIDILRR-funded Southwest ADA Regional Center has published a new factsheet, Disability Rights Laws for Public Primary and Secondary Education. The factsheet explains the general obligations that public elementary and secondary schools have toward students with disabilities and discusses how Federal legislation such as the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA) affect the rights of students with disabilities. The factsheet also briefly touches upon bullying, nonacademic services, enforcement, and discrimination, and provides resources for parents and educators.
Assistive Technology in the Classroom
Writing for eParent.com, Tara Peifer of Disability Rights Tennessee outlines what assistive technology (AT) is, how is may help your child in the classroom, what is required under the law and how to get your child an assessment.
ALS Association Details Actions They are Taking to Increase Access to Medicare Home Health Benefits
On their official blog this month, the ALS Association listed ways in which they are fighting to make sure people with ALS who rely on Medicare have access to home health care benefits. The group believes flaws in Medicare’s reimbursement system make it hard for people with ALS to access the benefits they need – even if they meet all criteria.
Dr. Neil Thakur, executive vice president for mission strategy at The ALS Association stated, “Many such beneficiaries, despite being fully qualified, are turned down for the home health benefits they deserve. Other beneficiaries are able to receive Medicare home health but deal with inadequate hours of service and inappropriate termination from care.”
Global Tracheostomy Collaborative
The Global Tracheostomy Collaborative has a collection of webinars it has held in the past available for viewing on its website. Titles include "The Voice of Patients and Families in Tracheostomy," "Thriving with a Tracheostomy in the Community," and others.
Not Dead Yet on Disaster Preparedness
The advocacy group Not Dead Yet recently published a commentary on disaster preparedness as it relates to those with disabilities. Anita Cameron's piece, "In Disasters We Lose," argues that jurisdictions often exclude people with disabilities from their disaster plans, causing those with disabilities to be displaced or unnecessarily institutionalized in the wake of a disaster, sometimes leading to death. To help remedy this, Cameron calls on Congress to pass the READI (Readying Elders and Americans with Disabilities Inclusively) for Disasters Act. This piece of legislation was introduced in the Senate at the end of November.
What the Texas Ruling Means for the Affordable Care Act
Earlier this month, a federal judge in Texas struck down the entire ACA. He did not issue an injunction against it, meaning, for now, the law still stands. NPR broke down what the ruling means and what may lie ahead. If you are looking for a more detailed analysis, you might check out a report from the Kaiser Family Foundation, "Potential Impact of Texas v. U.S. Decision on Key Provisions of the Affordable Care Act."
Money Follows the Person Set to Run Out of Money by Year's End
The Money Follows the Person program is expected to run out of funds at the end of 2018. The program allows states to help people with disabilities transition from nursing homes or other institutions to an apartment or small group home by paying for programs not normally covered by Medicaid such as employment and housing services.
It has served over 88,000 people since its inception a decade ago. Advocates have urged Congress to pass the EMPOWER Care Act, or H.R. 5306, which would reauthorize the program for one year at $450 million. Congress has yet to do so despite the fact that most evaluation have found that the programs saves Medicaid money.
Pulmonary NP ensures care continuity, reduces readmissions
“Unplanned readmissions declined among tracheostomy/ventilator-dependent children whose discharge process involved a pulmonary nurse practitioner to coordinate continuity of care, a study of more than 70 patients has found.
“ ‘The technology-dependent pediatric population who is going home with tracheostomy and ventilator dependence is at risk for hospital readmission, and having an advanced practice provider in a continuity role promotes adherence to our standards of practice and improves transition to home,’ Sarah Barry, CRNP, of Children’s Hospital of Philadelphia (CHOP), said in an interview.”
CHEST Physician. October 9, 2018. Link to article.
Challenges, Benefits of Noninvasive Mechanical Ventilation for ALS Patients Reviewed in Study
“Survival and quality of life of patients with more advanced amyotrophic lateral sclerosis (ALS) can be improved significantly with the use of noninvasive mechanical ventilation (NIV). But many factors can contribute to a delayed decision on when to start mechanical ventilation, as well as on the effectiveness of the intervention, according to a review study.
“In the study, ‘Continuous noninvasive ventilation for respiratory failure in patients with amyotrophic lateral sclerosis: current perspectives,’ Italian researchers reviewed some of the technical factors affecting the use of NIV and its overall impact on quality of life for ALS patients. The review was published in the journal Degenerative Neurological and Neuromuscular Disease.”
ALS News Today, Sept. 18, 2018. Link to article.
Comparison of two cough-augmentation techniques delivered by home ventilator in subjects with neuromuscular disease.
Castrillo LDA, Lacombe M, Boré A, Vaugier I, Falaize L, Orlikowski D, Prigent H, Lofaso F.
Cough peak flow (CPF) “increased with both techniques but was higher with VCM (volumetric cough mode) than with breath-stacking in 16 subjects. In 17 subjects, CPF was highest with the technique that produced the greatest inspiratory capacity.
“Our results indicate that both breath-stacking and VCM are useful cough-augmentation techniques. Displaying insufflated volumes on the ventilator screen is a simple and accessible method for selecting the most efficient cough-augmentation technique delivered by a home ventilator”
Respiratory Care. November 2018, respcare.06259; doi: 10.4187/respcare.06259
NAMDRC 2019 Annual Conference
NAMDRC will host its 2019 Annual Conference from March 14-16, 2019 at the Fairmont Sonoma Mission Inn, Sonoma, CA. The 2019 program is entitled, “NAMDRC 2019: Advances in Pulmonary, Critical Care and Sleep Medicine” and features the following keynote speakers Bartolome Celli, MD, Professor of Medicine at Tufts and Harvard Medical School and E. Wesley Ely, MD, Professor of Medicine at Vanderbilt University School of Medicine. Download the brochure or register online.
Canadian Respiratory Conference
ATS Conference 2019
The American Thoracic Society will hold their 2019 conference in Dallas Texas, May 17-22. Registration will be available in early December 2018. Click here to complete and submit the form to start your registration.
A second conference will take place in 2019 at the Poughkeepsie Grand Hotel in Poughkeepsie, New York on Wednesday, October 2nd, 2019. This well-established conference will be celebrating its 40th anniversary and is one of the longest continuously running Respiratory Care & Sleep Medicine conferences in the country.
AARC Congress 2019
AARC Congress 2019 will be held November 9–12, 2019, in New Orleans, Louisiana. Highlights from the recent 2018 Congress can be found on their website.
Ventec Life Systems, maker of the VOCSN, details how new CMS payment rule for multi function ventilators will affect its business
On November 1, 2018 the Centers for Medicare & Medicaid Services (CMS) released the final 2019 payment rule announcing a new Medicare Part B reimbursement policy for multi-function ventilators. The agency also established a new billing code, HCPCS code E0467. Beginning on January 1, 2019, Medicare suppliers can bill for VOCSN using the new code. A Medicare beneficiary who requires a vent and only one other therapy is eligible for a multi-function vent. CMS also released its 2019 fee schedule for DMEPOS. Though the fee schedule can vary from state to state, in general multi-function ventilators will be paid about 15% to 20% more than traditional vents, according to Ventec.
Beneficiaries who have been using traditional ventilators can transition to a multi-function ventilator unless they already own one of the devices that provides one of the four additional therapies (oxygen concentrator, cough assist, nebulizer and suction). Those beneficiaries can transition to a multi-function vent after the five-year reasonable useful lifetime of those devices. Ventec has more information about the new policy on its website.
AirFit F30, ResMed’s First Minimal-contact Full Face Mask, Now Available in the US, Canada
The AirFit F30, the latest addition to ResMed's AirFit mask portfolio, is available for sale now in the United States and Canada.
ResMed claims the AirFit F30 fits 93 percent of patients, and features a minimal-contact cushion that sits just below the nose, preventing top-of-the-nose red marks and irritation, plus reducing feelings of claustrophobia for some full face wearers. It also has ResMed’s QuietAir vent, making the mask quieter than ambient noise in the bedroom.