IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
VENTILATOR-ASSISTED LIVING
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VOLUME 30, NUMBER 6
DECEMBER 2016
Dr. Keens, in the Division of Pediatric Pulmonology and Sleep Medicine, and Professor of Pediatrics, Physiology and Biophysics at the Keck School of Medicine at the University of Southern California, was honored October 25, 2016 for his 39 years of caring for children living in the home on ventilators.
His first child, diagnosed with Congenital Central Hypoventilation Syndrome (CCHS) was discharged to home in 1977, on a Bird Mark 7 Respirator........MORE
Post-Polio Health International (PHI) and the International Ventilator Users Network (IVUN) announces that it has contributed $67,000 to The CHEST Foundation, the philanthropic arm of the American Academy of Chest Physicians (ACCP), to fully endow the Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation.
The purpose of the endowment is to honor an individual who possesses superior knowledge of home mechanical ventilation (HMV) and who promotes the health professional/patient partnership............MORE
ADDITIONAL SECTIONS
Ventilator Users Speak
Answer questions; learn from others.
Advocacy
Educate, discuss, take action.
Networking
Sharing the work of others
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters.
Industry
The business of living with a ventilator.
Supported by:
Ventilator-Assisted Living
Vol. 30, No. 6, December 2016
Editor: Joan L. Headley
Designer: Brian Tiburzi
ISSN 1066-534X
© 2016 Post-Polio Health International.
Permission to reprint must be obtained from Post-Polio Health International (PHI) at info@post-polio.org.
Ventilator users, health professionals, non-profits, company representatives – send comments and updates to info@ventusers.org.
Dr. Thomas G. Keens, Children’s Hospital Los Angeles (CHLA), presents the Pfrommer Lecture at CHEST 2016
Dr. Keens, in the Division of Pediatric Pulmonology and Sleep Medicine, and Professor of Pediatrics, Physiology and Biophysics at the Keck School of Medicine at the University of Southern California, was honored October 25, 2016 for his 39 years of caring for children living in the home on ventilators.
His first child, diagnosed with Congenital Central Hypoventilation Syndrome (CCHS) was discharged to home in 1977, on a Bird Mark 7 Respirator.
Keens gave the Margaret Pfrommer Memorial Lecture in Long-Term Mechanical Ventilation at CHEST 2016 in Los Angeles. His presentation began with the case history of the first Children's Hospital Los Angeles (CHLA) child discharged on home mechanical ventilation.
This was the 16th year the lecture was given at the annual meeting of pulmonologists to educate physicians about home mechanical ventilation.
1977
2016
Highlights from
Unsung Heroes: Children on Home Mechanical Ventilation
Thomas G. Keens, MD, Los Angeles, California
After successfully discharging our first child in 1977, we asked ourselves: What are we doing? What kind of a life are we imposing on the child? On the family? Won’t they just die at home anyway?
We answered: What we do medically should be guided to enable families to follow their dreams; to enable families to be heroes!
CHLA and its staff needed to give families the tools to care for their children safely at home and to provide a safe equipment. Our goal was to foster the hope that their ventilator-assisted child would live a fulfilling life. We needed to empower each family to fashion a meaningful life for their child and to help them to live their dream.
Our philosophy of ventilation in chronic respiratory failure is to adjust the ventilator to completely meet the child’s breathing requirements.
We want the child to expend as little available energy as possible on the work of breathing, so that greater energy is available for activities which enhance the quality of life.
How much should children be ventilated at home? Based on our experience, we ventilate to PETco2 ≤35 torr (carbon dioxide partial pressure equal to or less than 35 torr - a unit of pressure equal to 1/760 of an atmosphere).
We have found that the children are less likely to fight the ventilator at this setting and that it provides reserve for changes in respiratory mechanics or acute respiratory infections. This setting decreases pulmonary hypertension, provides better spontaneous ventilation while awake, and we have better clinical outcomes.
We use small, uncuffed tracheostomy tubes in children on HMV, which permits speech, prevents tracheomalacia and allows use of a one-way speaking valve (Passy-Muir) to increase power of voice on or off the ventilator.
Small uncuffed tracheostomy tubes cause large, variable leaks around tracheostomies. The volume preset mode cannot compensate for variable leaks, so we use pressure control (pressure plateau) to inflate lungs to the same PIP (Peak Inspiratory Pressure) on each breath and compensate for variable trach leaks.
MV in Children: It takes a village in hospital and in home
Over the years, studies have been done about causes of death of HMV users and number of and reasons for ventilator failure. We conducted two other studies that have guided us.
At home, parents and home nurses are the ones who respond to emergency situations. We asked, “How much do they know?” We surveyed 108 parents and 44 in-home nurses of children using positive pressure ventilation via tracheostomy. The survey was 25 True/False questions about emergency situations with the tracheostomy and/or ventilator.
The results were published (Kun, S.S., et al. Pediatr. Pulmonol., 47: 409-413, 2011) and told us that our caregivers correctly answered a mean of 20.2 questions (81%). The range was 12 (48%) to 25 (100%).
The most commonly missed questions dealt with ventilator alarms and detecting an emergency early.
Our conclusion: Training for HMV caregivers should emphasize technical aspects of the ventilator and emergency response.
We also analyzed and published (Kun, S.S., et al. Pediatr. Pulmonol., 47: 409-413, 2011) information about unplanned hospital readmission of children on HMV.
Of 109 children discharged on HMV between 2003-2009, 40% had unplanned readmissions in the first year.
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46% of admissions occurred with 3-months.
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Most common causes were pneumonia (28%) and tracheitis (17%).
The study revealed that the most important predictor of readmission was a change in medical care within 7 days before discharge. And, 80% of those were readmitted within 30 days.
Multidisciplinary Action Plan (MAP)
In July of 2013, we started our Home Mechanical Ventilation Multidisciplinary Action Plan (MAP).
It is a 6-7 week discharge plan that starts with the family’s agreement to and commitment to caring for HMV dependent child at home. It includes:
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Early establishment of target discharge dates.
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Early household assessment for suitability for safe care.
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Assignment of specific tasks/responsibilities to each home care team member with accountability.
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Minimum weekly team review of progress.
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Close adherence to projected timeframe.
Education is important. We recognize that, in spite of the advances in ventilator technology and our vast experience, going home on ventilator support is a novel experience for the parents every time. Hence meticulous attention is paid to the training process to make sure the home procedures are well learned. Individual education/training is enhanced by our coordinated effort to cover all the home procedures, such as trach care, ventilator care, giving of medications, feeding, etc.
Parents and caregivers are graded on their ability to provide the care.
We suspend the process in event of a significant interval medical problem and/or if we make changes to medical care within 7 days before discharge, or we move back the discharge date.
We discharged 26 HMV children in the first 18-months using MAP with an impressive decrease improvement in readmissions.
School
HMV children should go to the least restrictive school they can.
School provides education, social contact and challenge. It is important to make it work, enlisting teachers and the district’s official. We explain the medical needs, assure safety and help in advocating for needed nursing or caregiver assistance.
If we do our job right, we provide the tools for HMV children and families to fashion fulfilling lives.
They are the unsung heroes who make HMV worth it.
The next issue of Ventilator-Assisted Living will publish Dr. Keen’s team approach to answering the question: Can We Wean HMV Children?
Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation
Post-Polio Health International (PHI) and the International Ventilator Users Network (IVUN) announces that it has contributed $67,000 to The CHEST Foundation, the philanthropic arm of the American Academy of Chest Physicians (ACCP), to fully endow the Margaret Pfrommer Endowed Memorial Lecture in Home-Based Mechanical Ventilation.
The purpose of the endowment is to honor an individual who possesses superior knowledge of home mechanical ventilation (HMV) and who promotes the health professional/patient partnership.
Each year an individual deemed expert in home mechanical ventilation is honored for their work and is asked to lecture at the annual meeting of the ACCP.
PHI Board President William G. Stothers, San Diego, California, comments, “As a HMV user, I am keenly aware of the importance of educating medical providers so that I and many others continue to live independently in our own homes. We can breathe a bit easier thanks to this effort to provide long-term funding for the Pfrommer Lecture.”
PHI’s gift assures that home mechanical ventilation will always be a topic at the annual meeting and assures that younger physicians will be exposed to the philosophy, skills and techniques of providing care for adults and children with neuromuscular disease who live at home on mechanical ventilation.
During the discussions, it was decided to slightly revise the criteria for selecting the recipient of the award. Consideration for the award shall be given to a researcher, clinician or ventilator-assisted individual or parent of a ventilator-assisted child from any country (translator will be provided for non-English speaking individuals), and previous recipients if they have contributed new knowledge to HMV.
The Steering Committee of the Home-Based Mechanical Ventilation and Neuromuscular Disease NetWork of the ACCP will be instrumental in nominating an individual to receive the honor. The final decision will be made by the Scientific Presentations and Awards Committee of the ACCP.
Nominations for the award can also be made through IVUN.
Established in 1999 by Dr. Allen Goldberg and Dr. Eveline Faure, the lecture honors polio survivor and advocate Margaret Pfrommer from Chicago, Illinois. Pfrommer, a quadriplegic from polio, spent part of her life in a nursing home after her mother’s death. This experience compelled her to become an advocate for herself and for all those with significant disabilities.
She was one of the first to pilot a motorized wheelchair with a “sip-and-puff” mechanism. Her consultation and feedback were instrumental in developing the prototype and other technologies that allowed Margaret and many others with significant disabilities to live independently.
Daniel J. Wilson, PhD, Allentown, Pennsylvania, Chair of PHI’s Research Committee adds, “This award, supported by PHI, honors the memory of Margaret Pfrommer and the many other polio survivors who pushed the medical profession to help us live full and independent lives.”
Drs. Goldberg and Faure issued a $10,000 matching challenge to their colleagues at the ACCP to assist in fully funding the lecture. Thanks to generous donations from them and other supporters of HMV, the goal was met.
Joan L. Headley, Executive Director at PHI, says, “During this whole process, I kept remembering many of the other impressive polio survivors who were long-term ventilator users who also made their mark in the world. We list some of them here along with the past recipients of 'the Pfrommer.'”
In Memory of polio survivors who were long-term ventilator users whose lives intersected with PHI/IVUN.
Sally Arbogast
Susan Armbrecht
Dawn Bearchild
Billy Beer
Arnold Beisser
Doris Benedict
Bud Blitzer
Ida Brinkman
Doris Campbell
Terrance Connelly
Ellen Crim
Deborah Cunningham
Mollie David
Jean Davis
Ruth Davis
H. LeRoy deBoom
Willis Dey
Soley Dietz
James Donald
Ronald Doneff
Lillian Dunford
Richard Eckhardt
Alan Fiala
Gloria Finkel
Richard Flickinger
Charles Froelicher
Dan Garrison
Jack Genskow
Benjamin Gerson
Allan Gouldburn
Annette Gorman
Sheryl Dawn Grosser
Iva Sue Grover
Lewis Gumerman
Mary Ann Hamilton
Ira Holland
Yvonne Hudson
Sherry Hurst
Jean Iutzi
Dick Jaskela
Doris Jones
Todd Keepfer
Sheila Keogh
Larry Kohout
Oscar Kuentz
Paul Liebowitz
Paul Longmore
Gene Love
Money Luckett
Lynn Martinka
Martha Mason
Anna Mae Mayer
Robert McCown
Karen McKibben
Gary McPherson
Betty Mielke
Mary K. Miller
Dorothy Mosey
Tony Nadeau
Kathleen Navarre
Richard Nolte
Mark O’Brien
Diana O’Dell
Vera Overholt
Jean Packer
Carol Parsons
Jamie Paul
Charles Perry
Linda Pickle
Jon Will Pitts
Pat Prell
John Prestwich
Imogene Prichard
Nancy Quinn
Susan Ray
Charline Roberts
Ed Roberts
Marilyn Rogers
Thomas Rogers
Stanley Rose
Marilyn Rosen
Desha Sanders
Sam Sanders
Arthur Sauter
Walter Sawyer, Jr.
Claire Schnitz
Floy Schoenfelder
Willa Schuster
Annice Smith
Mary Lou Spiess
Sheila Stuckey
Linda Sutherland
Robert Tabor
William Taylor
Richard Thamm
James Thompson
JoAnn Ulvested
Dan Vachon
Nita Weil
Sunny Weingarten
Leah Welch
Richard Weiler
Sandy Wilpula
Ray Youdath
Buzz Zucker
Margaret Pfrommer Memorial Awards in Long-Term Mechanical Ventilation Through the Years
1999
2000
2001
2002
2003
2004
2005
2006
2007
2008
2009
2010
2011
2012
2013
2014
2015
2016
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
Barbara Rogers
Not awarded
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
Ventilator Users Speak
Program allows people with disabilities to retain precious independence
Audrey King loves the program because there are “no agency ‘policies and procedures’ to interfere with the assistance you need or how it happens.”
“As an employer, the accountability and responsibility between you and your attendant or attendants is direct. There is no middle manager off-site,” she says. “As a result, you respect each other and care about each other more.” Read more at thestar.com.
Anderson Cooper: What Were You Thinking?
"As my disease progresses, I benefit from excellent medical care and advances in technology; most recently, I’ve attached a ventilator to my wheelchair to help me breathe," David Bekhour writes.
Space Anthropologist Keirsten Snover Encourages Others to Pursue Scientific Passions
“I use a power wheelchair to get around because it’s hard for me to walk. I use a feeding tube to eat food and drink water because my stomach muscles don’t really work anymore. I use hearing aids to help me hear. I have special glasses because I have double vision. I use a ventilator because it’s hard for me to breathe.” Read more from the MDA's profile of Keirsten Snover.
Also, exposing the system
Missouri patients on ventilators are leaving the state for care. Here's why.
St. Louis Public Radio
An operation two years ago left her paralyzed from the neck down, unable to breathe without a ventilator. But finding a skilled nursing facility nearby...
Disabled advocate loses own battle
Indianapolis Star
“Nurses provided medical assistance for 20.5 hours a day; volunteers covered the additional 3.5 hours. Vaughn, who needs a tracheotomy and a ventilator at night to help her breathe, communicated how often the trach needed to be suctioned — sometimes it’s once an evening; sometimes four times an hour.”
Advocacy
21st Century Cures Act
It is hard to find an unbiased summary of the 21st Century Cures Act. The University of South Florida offers this information.
The provision, that at first glance, would affect users or potential users of home mechanical ventilation is streamlining the drug and device development process. Reportedly industry and some patient groups are pleased with words of caution from other patient groups regarding the dangers of fast-tracking drugs and devices.
STAT wrote an article about winners and losers that was picked up by PBS Newshour.
Update on Contact with CMS Regarding Coverage of RADS and Vents
NAMDRC (National Association for Medical Direction of Respiratory Care) facilitated a conference call with an aid from the congressional office of Chris Collins (R - NY). Congressman Collins is a member of the House Energy & Commerce Committee. The bulk of the time was spent articulating the issue to him.
Networking
Post-Polio Health International filmed sessions at Polio Australia’s September 2016 Conference. These two, from Anne Duncan, Victorian Respiratory Support Services, Austin Hospital, Heidelberg, Victoria, are useful to ventilator users.
Learn more about CCHS
The CCHS (Congenital Central Hypoventilation Syndrome) Network upgraded its website recently and explains more about the CCHS Foundation.
University of Washington's SCI Empowerment Project
The SCI Empowerment Project produced two videos about respiratory management:
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Manual Assisted Cough
Manual assisted coughing, also known as "quad coughing," is a method to help people with SCI clear their airways. Learn this important life-saving skill in our short video.
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Manual Hyperinflation
A manual hyperinflation device can help give you a bigger breath than you can take on your own, maintain airway clearance, and decrease your potential for lung infection.
New Simon Frazer University professorship to boost research collaboration with Royal Columbia Hospital in Burnaby, British Columbia, Canada.
Dr. Steve Reynolds is working with SFU professor Andy Hoffer and Burnaby-based Lungpacer Medical Inc. to advance the Lungpacer Diaphragm Pacing System. The technology aims to improve patients’ chances of re-establishing diaphragm strength for a faster return to unassisted breathing.
In 2017 the researchers hope to undertake a long-term study with hospitals in the U.S. to study the design’s effectiveness.
Recent Relevant Publications
In CHEST Journal
"Giants in Chest Medicine: Bartolome Celli, MD, FCCP" by Gerard J. Criner.
Polio survivor Jeff DeTray, Napoleon, Ohio, wrote about Dr. Celli in Ventilator-Assisted Living, Vol. 29, No. 6, December 2015. See "In Pursuit of a New Vent."
From Biogen
Nusinersen (Spinraza) met its primary efficacy endpoint for spinal muscular atrophy in a phase III trial interim analysis, said sponsors Biogen and Ionis, who hope for FDA approval as early as this December.
In American Journal of Respiratory and Critical Care Medicine
New Guidelines Published for Discontinuing Mechanical Ventilation in ICU
The American College of Chest Physicians (CHEST) and the American Thoracic Society (ATS) have published new guidelines for discontinuing mechanical ventilation in critically ill adults. The goal of the guidelines is to help physicians and other health care professionals determine when patients with acute respiratory failure can breathe on their own, as well as provide clinical advice that may increase the chances for successful extubation.
A press release from the ATS summarizes the Guidelines.
“Menopause is Associated with Accelerated Lung Function Decline”
European researchers report that both forced vital capacity (FVC), a measure of lung size, and forced expiratory volume in one second (FEV1), a measure of how much air can be forcefully exhaled in one second, declined in women going through the menopausal transition and after menopause beyond what would be expected through normal aging.
In what they believe is the first longitudinal population-based study of lung function and menopause, the researchers analyzed data from 1,438 women enrolled in the European Respiratory Health Survey. Participants in the study ranged in age from 25 to 48 at enrollment, and none was menopausal when the study began. They were followed for 20 years and during that time most went through the menopausal transition or became postmenopausal.
See more at Articles in Press.
Industry
PCEye Mini from Tobii Dynavox Wins Award
Tobii Dynavox, the global leader in eye tracking and touch based communication devices, announced that the PCEye Mini with IS4 Eye Tracker was named a CES 2017 Best of Innovation Award Honoree in the “Tech for a Better World” product category. The annual CES Innovation Awards celebrate outstanding product design and engineering in brand-new consumer technology products.
The Tobii Dynavox PCEye Mini is the smallest eye tracker on the market and optimized for individuals that do not have use of their hands—due in part to disabilities such as Spinal Cord Injuries, ALS, Stroke, Cerebral Palsy, Rett Syndrome, or other degenerative conditions.
The device enables users to control a computer, laptop or tablet using only their eyes. With the PCEye Mini, individuals with disabilities that inhibit the use of their hands or arms can remain in the workplace longer or even return to work.
TeleFlex Medical Recalls Tracheostomy Tube Set
TeleFlex is recalling the Willy Rusch Tracheostomy Tube Set (last updated 10/20/2016) due to the possibility that the connector may disconnect from the tracheostomy tube during use on a ventilated patient. If the connector detaches from the tracheostomy tube shaft during use, it can deprive the patient of adequate ventilation and would require immediate medical intervention including changing the tracheostomy tube and placing a new tube. The use of affected products may cause serious adverse health consequences including oxygen deprivation, brain damage and death.
Cloud-based Remote Monitoring and New Masks from ResMed
AirView for Astral™ provides physicians and providers access to key data from their life support ventilator users in ResMed's secure cloud network. Clinicians can access their patient data in AirView or through the ResMed Data Exchange where they can integrate their system's electronic health records with AirView.
AirFit F20 and N20 masks are currently being rolled out in Europe, the Middle East, Africa and Asia-Pacific (available in the United States later this year subject to clearance by the U.S. Food and Drug Administration).
AirFit F20 is a full face mask specially-designed to fit all patients, regardless of facial profile. The modular frame fits all cushion sizes. There is a model “for her.”
AirFit N20 is a nasal mask with magnetic clips and a quick-release elbow.
