IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
IVUN
INTERNATIONAL VENTILATOR USERS NETWORK
an affiliate of Post-Polio Health International
CONNECTING
VENTILATOR USERS,
HEALTH PROFESSIONALS,
AND INDUSTRY
VENTILATOR-ASSISTED LIVING
VOLUME 37, NUMBER 4
AUGUST 2023
When James McLelland was only a few weeks old, he had to undergo surgery to place a tracheostomy tube for breathing and a gastrostomy tube for feeding due to a complex craniofacial syndrome. Though born in Fresno County, California, James's condition required that he stay in a sub-acute facility in the Bay Area. His mother, Jennifer, had to split time between their home and the facility where James was being cared for before he eventually transitioned home.
Like many parents in her situation, Jennifer has been forced almost by necessity to become an expert on issues relating to home care for medically fragile pediatric patients. In an interview with IVUN, she graciously offered insights into her life as a mother caring for James, now 12, shedding light on the challenges surrounding caring for children with complex medical needs that many such families face - nursing shortages, equipment supply concerns, and access to quality education......................................................................................MORE
ADDITIONAL SECTIONS
Advocacy
Educate, discuss, take action
Networking
Sharing the work of others
Recent Relevant Publications
Summaries, links to selected professional, disability, disease journals and newsletters
Educational Opportunities
Conferences and webinars for health professionals and ventilator users
Industry
The business of living with a ventilator
Ventilator-Assisted Living
Vol. 37, No. 4, August 2023
Editor: Brian Tiburzi
Designer: Brian Tiburzi
ISSN 1066-534X
© 2023 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.
Navigating the Complexities of Home Health Care
An interview with Jennifer McLelland
When James McLelland was only a few weeks old, he had to undergo surgery to place a tracheostomy tube for breathing and a gastrostomy tube for feeding due to a complex craniofacial syndrome. Though born in Fresno County, California, James's condition required that he stay in a sub-acute facility in the Bay Area. His mother, Jennifer, had to split time between their home and the facility where James was being cared for before he eventually transitioned home.
Like many parents in her situation, Jennifer has been forced almost by necessity to become an expert on issues relating to home care for medically fragile pediatric patients. In an interview with IVUN, she graciously offered insights into her life as a mother caring for James, now 12, shedding light on the challenges surrounding caring for children with complex medical needs that many such families face - nursing shortages, equipment supply concerns, and access to quality education.
Jennifer (far right) with James (second from right) and family.
IVUN: Tell me a little bit about James and his situation.
McLelland: My son James is 12 years old. He has had a tracheostomy since birth due to craniofacial syndrome and also uses a ventilator at night. He is in the process of transitioning from a Trilogy to an Evo. We just got custody of a new one when the most recent recall was announced. Now we're in a holding pattern while the DME decides which recall is worse.
IVUN: The recall has certainly been unfortunate. I think there are many people who feel that communication from Philips about the recall wasn’t great and guidance over how to deal with the recall was incomplete.
McLelland: The guidance was to talk to your doctor, but it's not like doctors have a secret closet full of ventilators. We're now three years into the recall. I believe I’m really good at managing the system. We have good insurance, and it was still three years before we got a replacement - which is still not functional because of the filter recall.
I spoke to a product liability attorney, and they don't even know how to settle this because how do you prove damage? Who is liable when the DME is the one that simply couldn't manage to replace it? Philips recalled this ventilator, and we continued using it for three years.
IVUN: You've spoken before about some of the dysfunction in the home nursing care system. In your opinion, what factors contribute to this dysfunction, particularly for children who use ventilators?
McLelland: So the number one factor is a systematic refusal to pay market wages. Nurses in institutional care are making between $32 and $38 per hour here in California. The reimbursement rate for licensed vocational nurses (LVNs) who work home care cases, number one, is not bracketed, so complex cases pay more money; and number two, it's simply not competitive. The nursing agencies here make $44.12 per hour and they pay down between $24 and $26 per hour to the actual nurse who works the case. So nurses are looking at a $10 pay cut off the top to take a home care case. And as bad as it is in California, it's worse everywhere else. There are nurses making under $15 per hour in other states.
IVUN: So in your opinion, is increasing pay the solution, or are there other initiatives that would need to be put in place to improve the situation?
McLelland: So, across the board, we need pay increases for Medicaid - both Early and Periodic Screening, Diagnostic and Treatment (EPSDT) nursing, which addresses children, and also for adults, whose rates generally mirror those rates, even though adults are heavier, more difficult to manage and more complex. So as bad as the staffing issues are for the pediatric cases, it's a hundred times worse for adults. We also need to resolve pipeline issues with new nurses entering the field and with nurses staying in the field. Some states, California for one, have been working to remove tracheostomy and ventilator care from the scope of practice for LVNs, making it a registered nurse-only task, and that would absolutely destroy home care and long-term care as we know it. As bad as the staffing problems are for LVNs, if we had to replace LVNs with RNs, no case would ever be staffed.
IVUN: Is this a state-level issue or is there a federal solution?
McLelland: With Medicaid rates, it's a 50-state grind because Medicaid funding goes to the states who then contract and pick away at those rates. At the federal level, Money Follows the Person is the correct way to fix home care funding. And with Money Follows the Person, states would simply have an incentive to fix their home nursing rates. For example, the rate for my son to be in sub-acute is more than half a million dollars per year. That is a substantial budget that is simply not spent in home care. Number one, because there's no staffing. But even if he were staffed at 24 hours a day, it would be nowhere close to the cost of institutional care.
IVUN: In looking at the transition process from institution to home, and considering James’s experience with that, as well, what changes might be made to improve that experience?
McLelland: I would say that hospitals need to take an active role in: 1) helping families actually find nursing, and 2) when they can't find workarounds, arriving at a safe discharge plan. What I see a lot of is hospitals holding kids until parents can arrange 16 hours/day of nursing. That's simply not possible. It's a hoop that cannot be jumped through. So, these kids wind up in institutional care for months or years on end, but as soon as discharge is processed, no one ever asks again if you have home nursing. It's a one-time thing where they throw up this massive barrier and then if your nurse quits, no one cares ever again. It's a bizarre liability-based requirement.
IVUN: We’ve heard from a lot of parents who don’t feel properly educated before their children transition to home. Is better patient education needed?
McLelland: I think no matter how well you train mom and dad on management of a ventilator, sooner or later they have to go to sleep. So, no amount of training and no amount of competence can solve the problem of 24-hour care.
IVUN: A big issue for those on home mechanical ventilation in the early part of the pandemic was a shortage of ventilator supplies, particularly circuits. How has that situation evolved?
McLelland: On the supply side, the situation has improved. The shortages are less real, however durable medical equipment (DME) companies and insurance companies got used to supplying less. And so what we've seen is that, even though the emergency of the supply chain has faded, the rationing just became normal.
In California, the standard order here was four circuits per month. Through Covid that went down to two, then down to one, and then we simply didn't get circuits for about six months. Now they just brought the order back to two per month, which is a 50% reduction, but it's just the way things are now. And no one is tracking whether there are infections, whether there is wear and tear to stoma, or whether there are deaths resulting from this. So I would say that it's been an experiment, but if no one pays attention to the results, then it's just rationing.
The Bivona tracheostomy tubes are still in hard shortage. At our ENT appointment two weeks ago, the doctor said that they've been leaving kids intubated for lack of tracheostomy tubes, which is catastrophically bad. When the shortages hit the home care population, it was like, "Okay, fine, I'm washing and reusing trachs in the kitchen sink. I'm sterilizing in an Instant Pot. It's not great. But we have a trach tube." For children to remain sedated and on an endotracheal tube? That's insanity.
IVUN: In your opinion, what can be done to improve the situation?
McLelland: Increased Medicaid reimbursement rates for the tubes, which I hate doing because it's rewarding bad behavior from the manufacturer. The manufacturing plants have prioritized profitable products over pediatric trach tubes. They've made a business decision to keep this shortage in place.
I think overall every solution comes down to money. Increase Medicaid funding across the board and create clear pathways to long-term Medicaid eligibility in order to access home care and equipment.
IVUN: Besides equipment shortages, what are some other areas of concern?
McLelland: Pediatric nursing in school systems is a clear right under the Individuals with Disabilities Education Act (IDEA), but it's been a district-by-district, kid-by-kid battle to actually get it in place. That's something that affects the pediatric population. Even beyond the home nursing shortage, kids are being deprived of an education because of the nursing shortage.
I think the defining issue is that school districts have internalized their legal responsibility and forked over more money because we know that Medicaid rates are too low to secure nurses. Districts aren't held to the Medicaid rate and when districts pay market rates they find nurses. It's just a question of convincing the district that their legal obligation goes beyond negotiated Medicaid rates.
ADVOCACY
States Chart Path Forward On Paying Parents As Caregivers
The expiration of the declared public health emergency due to COVID-19 in May 2023 ended Medicaid payments to "legally responsible individuals," including parents caring for their children with disabilities. The end of payments left many families in uncertainty. Some states plan to make such programs permanent, hoping to address shortages of direct care workers, but concerns arise about potential limitations on paid hours and eligibility. Families are advocating for a federal law allowing Medicaid payments to caregivers, but concerns about costs persist. Various states are considering permanent caregiver payment programs with different restrictions on hours and eligibility, creating challenges for families like Lindsey Sodano in Ohio who rely heavily on caregiving support for their children with disabilities. Disability Scoop has more.
Medicaid Extends Flexibilities for Disability Services Implemented During Pandemic
Federal Medicaid officials have announced their intention to extend certain flexibilities for home and community-based services that were introduced during the COVID-19 pandemic in an effort to support the struggling disability services sector. The Centers for Medicare and Medicaid Services (CMS) issued guidance allowing states to continue using changes introduced during the pandemic while they work to formally integrate them into their waiver programs. The flexibility includes measures such as telehealth, increased payment rates, expanded service delivery models, and the involvement of family members and legally responsible individuals as caregivers. This extension aims to prevent disruption to beneficiaries, providers, and states, and it addresses concerns about staffing challenges and service continuity within the disability services sector.
NETWORKING
From the Mütter Museum: Interview of Thomas Fetterman
At just eight years old, Thomas Fetterman caught polio and was partially-paralyzed. Throughout his stays in various hospitals, including a few months in an iron lung, Thomas maintained a positive attitude. Despite his many challenges and being made aware of the fragility of life at such a young age, he did not despair, always looking for the positive aspects of his experiences. Today Thomas helps others all around the world who have suffered from polio paralysis or similar ailments by designing comfortable and durable crutch tips. The interview was conducted by Meredith Sellers and produced by Jonah Stern.
The Autumn Ghost: How the Battle Against a Polio Epidemic Revolutionized Modern Medical Care
Intensive care units and mechanical ventilation are a crucial foundation of modern medical care: without them, the appalling death toll of the COVID-19 pandemic would be even higher. In The Autumn Ghost: How the Battle Against a Polio Epidemic Revolutionized Modern Medical Care, Dr. Hannah Wunsch traces the origins of these two innovations back to a polio epidemic in the autumn of 1952. Drawing on compelling testimony from doctors, nurses, medical students, and patients, it's a gripping tale of an epidemic that changed the world.
Faced with an onslaught of polio cases, a few doctors in Copenhagen came together, desperate for a way to save their patients’ lives. They experimented on a twelve year old girl dying from polio, giving her a tracheostomy and blowing air into her lungs to keep her alive. The experiment was successful. But without modern ventilators, they turned to the medical students of the city for help. These students sat at the bedsides of polio patients in shifts, hand-ventilating them 24 hours a day through the many months of the epidemic. This radical approach to care marked a turning point in the treatment of patients around the world—sparking the rise of life support and the creation of intensive care units, and fundamentally altering modern medicine.
Watch below as author Hannah Wunsch joins the American Philosophical Society to discuss her new book.
Seeking Users of Negative Pressure Ventilation for Interview
Dr. Norma Braun is seeking to interview post-polio patients and others who can describe their experiences when in negative pressure devices (iron lungs, chest cuirasses), and who might have needed ventilatory support in later years. She plans to include patients’ experiences as part of a book chapter being written for the 21st century. This will be unique for a medical text. Any person so willing to be interviewed can be assured that no identifying data will be included. Your privacy will be protected.
The interviews will be conducted by phone or Zoom. Please contact Dr. Braun via her email, norma.braun@mountsinai.org.
RECENT RELEVANT PUBLICATIONS
Home health nurses for children with invasive mechanical ventilation (IMV): Perspectives on gaps and opportunities for recruitment
Sobotka SA, Lynch E, Laudon S, Whitmore K.
“Children with medical complexity (CMC) dependent on invasive mechanical ventilation (IMV) often require private duty home nursing; however, there are ubiquitous shortages. Home health is an especially vulnerable nursing sector because of less competitive wages and less prominence during nursing education. We sought to understand nurses' perspectives on gaps and opportunities for recruiting home care nurses for children with IMV.”
J Pediatr Nurs. 2023 Jun 30:S0882-5963(23)00155-0. doi: 10.1016/j.pedn.2023.06.023.
What Circuits, Masks and Filters Should Be Used in Home Non-Invasive Mechanical Ventilation
Luján M, Flórez P, Pomares X.
“Most of the published reviews about non-invasive home ventilation mainly reflect the technical aspects of ventilators. There is much less information about the consumables most used at home. However, the choice of a good interface or tubing system can lead to physiological changes in the patient-ventilator interaction that the clinician should be aware of. These physiological changes may affect the performance of the ventilator itself, the reliability of monitoring and, of course, the comfort of the patient. The use of different circuits, masks or filters is therefore related to the concepts of rebreathing, compressible volume, instrumental dead space or leak estimation and tidal volume. Through certain bench experiments, it is possible to determine the implications that each of these elements may have in clinical practice.”
J Clin Med. 2023 Apr 4;12(7):2692. doi: 10.3390/jcm12072692.
Moving from Inpatient to Outpatient or Home Initiation of Non-Invasive Home Mechanical Ventilation
Kampelmacher MJ.
“Home mechanical ventilation (HMV) is an effective treatment for patients with chronic hypercapnic respiratory failure caused by restrictive or obstructive pulmonary disorders. Traditionally, HMV is initiated in the hospital, nowadays usually on a pulmonary ward. The success of HMV, and especially non-invasive home mechanical ventilation (NIV), has led to a steep and ongoing increase in the incidence and prevalence of HMV, in particular for patients with COPD or obesity hypoventilation syndrome. Consequently, the number of available hospital beds to accommodate these patients has become insufficient, and models of care that minimize the use of (acute) hospital beds need to be developed. At present, the practices for initiation of NIV vary widely, reflecting the limited research on which to base model-of-care decisions, local health system features, funding models, and historical practices. Hence, the opportunity to establish outpatient and home initiation may differ between countries, regions, and even HMV centres. In this narrative review, we will describe the evidence regarding the feasibility, effectiveness, safety, and cost savings of outpatient and home initiation of NIV. In addition, the benefits and challenges of both initiation strategies will be discussed. Finally, patient selection and execution of both approaches will be examined.”
J Clin Med. 2023 Apr 19;12(8):2981. doi: 10.3390/jcm12082981.
EDUCATIONAL
OPPORTUNITIES
ERS International Congress 2023
The European Respiratory Society (ERS) International Congress will take place in Milan, Italy, September 9-13, 2023. Find out more at www.ersnet.org/congress-and-events/congress/.
CHEST 2023
October 8-11, 2023, Honolulu, Hawaii. The CHEST 2023 Annual Meeting will take place in person and will offer more than 300 educational sessions, including simulation and interactive learning opportunities. Sign up at the link above to receive the latest updates via email.
INDUSTRY
Philips Respironics Recalls Trilogy Evo, Evo O2, EV300, and Evo Universal Ventilators After Finding Dust and Dirt in Air Path That Can Reduce Air Flow to Patients
Philips is recalling Trilogy Evo, Evo O2, EV300, and Evo Universal ventilators after detecting dust and dirt from the environment in the air path of some devices. Extended exposure to environmental contaminants such as dust and dirt can lead to buildup that may block air vents and cause the device to stop delivering the right amount of air pressure, or air volume/flow.
If the ventilator fails to provide the right level of breathing support, patients may not receive enough oxygen (hypoventilation) and may experience a build-up of carbon dioxide or other gas pressure, which can lead to serious injury or death.
Philips has received 542 reports about this issue. There are currently two reported injuries and one death.
The FDA has identified this as a Class I recall, the most serious type of recall. Learn more at FDA.gov.