Kimberly Wiles, BS, RRT, CPFT
VP of Respiratory Services
Kittanning, PA 16201-1922
(724) 763-8889, ext. 5220
Fax: (724) 763-4284
Greg Spratt, BS, RRT, CPFT
Director of Clinical Marketing
3144 CR 193
Philadelphia, MO 63463
Office: (573) 439-5804
Mobile: (857) 919-2947
Kimberly Wiles, BS, RRT
It is hard to believe another year is almost behind us. We have experienced a whirlwind of change and have witnessed a transformation in health care. In the past, health care has always been focused on acute care, but with health care reform it is apparent that health care is just as important in the post-acute care setting. The respiratory therapist is positioned to be a key player in both the acute care setting and the post-acute care setting.
But if the post-acute care setting is vital to health care reform in the future, why have we seen the Home Care Section membership dwindling in numbers? Is this due to the fact that many home medical equipment companies are downsizing due to changes in reimbursement, and there are fewer practicing home care RTs?
I think the question we have to ask now, is, does the respiratory therapist have to reside in the home medical equipment company?
The home care therapist is vital in transitioning care from hospital to home. There are numerous models of care developing across the country that are involving the acute care therapist in the post-acute care arena. We need to recruit these therapists to become an active voice in the Home Care Section.
The future for cost effective care is to provide care to the patient in the home. Home is where the patient wants to be, and every respiratory therapist needs to understand the barriers that exist in the home. Recruit a member today (just direct them to section sign-up) — and remember, they don’t have to be working in a home medical equipment company. Section membership is open to any AARC member, regardless of their employment setting. We need to think outside the box and into the future of home care!
Editor’s Note: In the Summer edition of the Bulletin, Angela King introduced us to the FDA’s Manufacturer and User Facility Device Experience (MAUDE) database. In this issue, she shares some specific examples from the database related to home ventilator care.
Each Medical Device Report (MDR) in the MAUDE database includes a brief summary of the incident. Unfortunately, the situations often describe tragic events that perhaps could have been prevented with additional training for the family caregivers. Some examples follow:
An MDR from 2014 recounts that a patient was on an outing away from the rehabilitation center with a family member. During the outing, the ventilator circuit was reported to be “broken” or disconnected, creating a leak. The ventilator alarmed “low pressure.” The family member kept the patient on the device and transported him back to the rehab center rather than manually ventilating the patient and calling 911. When the patient arrived back to the rehab center, the circuit was replaced. Subsequently, the patient had a cardiac arrest and died.
A 2012 MDR reported that the patient had a mucus plug in the trach and the ventilator alarmed. It was reported that the patient passed away while connected to the ventilator. The family did not ambu bag with oxygen at the patient’s trach, but attempted to bag the patient by mouth via the mask. The patient had a cuffed trach, which was not deflated during bagging via mouth.
In both of the above examples, the family caregivers did not follow proper procedures for managing ventilator alarms and emergency situations. While neither report indicates whether the family caregivers were initially appropriately trained, the importance of periodic practice sessions on managing emergency situations with family caregivers is clear.
An MDR from 2011 reported that the patient decannulated and was sent to the emergency room. The patient’s mother claimed the alarms activated prior to discovering the decannulation but the nurse claimed no alarms were activated. The patient passed away.
A 2013 MDR stated that the patient’s father put the child down for a nap around 3 p.m. When the patient’s mother went in to check on the child at approximately 4:15 p.m., he had decannulated himself and was responsive. His trach tube was still attached to the ventilator circuit on one side of the crib, while the patient was on the other side. The breath rate was set to 12. The mother reported that the ventilator did not alarm until she disconnected the trach tube from the circuit.
Home care therapists generally test the ventilator low pressure alarm by disconnecting the ventilator circuit and verifying that a low pressure alarm occurs. An added measure of safety may be obtained by using the patient’s “emergency trach tube” to test the low pressure alarm. Checking the low pressure alarm with the trach tube attached will increase the resistance and thereby create more back-pressure, which may “satisfy” the low pressure alarm threshold, allowing a no-alarm situation. In these types of situations, the therapist should consider setting the low pressure alarm closer to the peak inspiratory pressure1, or may choose to set another type of alarm, such as a low minute exhaled volume alarm or oximeter with audible alarm.
Facilitating the patient’s ability to summon assistance
An MDR from 2009 explains that during a power outage, the ventilator never switched to its internal battery and the internal alarm never sounded to indicate a problem. The power was out for only a few hours, during which the internal battery should have kicked on and lasted until the power returned. The internal battery is supposed to last 6-8 hours and sound an alarm when the battery is low or there is a problem with the machine. The provider reported that when the client woke up, her mother had already passed away.
Another report from 2013 recounted that the patient was found in bed without the circuit attached to the trach. It was unknown if the ventilator alarmed when the problem occurred. The patient’s mother was taking a nap and did not hear any alarms when the problem occurred. The patient passed away.
Regardless of whether we are confident in the ventilator’s alarms, another layer of safety can be created if the patient is provided with a means to summon assistance. Some families provide the patient with a wireless doorbell. Others provide a bell or bicycle horn. Still others use the Med Labs E-Z Call alarm pad and speaker system. However, all of these options only help the patient reach a caregiver inside the home. If the caregiver is incapacitated or difficult to arouse from sleep, the patient may be endangered.
Ideally, all appropriate patients would have a means of summoning help from outside the home. Depending on the patient, this could be a cell phone, a landline phone, or a pendant style alarm button monitored by a professional service. In some cases, a monitored pendant style alarm can be modified so that it is activated by the patient “puffing” on a straw-like sensor mounted within reach of the patient’s lips.
Cynthia Knoche, BBA, RRT, Director, Chapter Care Services, The ALS Association
Respiratory therapists providing care for patients in their homes are preeminently positioned to take the lead in providing respiratory support solutions to those diagnosed with amyotrophic lateral sclerosis (ALS).
ALS, commonly known as Lou Gehrig’s disease, is among the most devastating neuromuscular diseases. Described by Charcot in 1874, this motor neuron disease is characterized by progressive degeneration of the corticospinal tracts, the anterior horn cells, and bulbar motor nuclei. Progressive degeneration of the motor neurons eventually leads to their death, resulting in the inability of the brain to initiate and control muscle movement. Patients diagnosed with ALS lose the ability to move, speak, eat, and eventually breathe. Death is usually the result of respiratory insufficiency.1
With a worldwide incidence of two per 100,000 population and a prevalence of six per 100,000, over 6,000 people in the U.S. are diagnosed with ALS each year, with nearly 20,000 people living with this frequently rapidly progressing neurodegenerative disease at any point in time. Prognosis is typically death within 3-5 years from initial symptom onset, although up to 10% of diagnosed persons may live ten years, and 5% may live up to 20 years.
For yet undetermined reasons, U.S. veterans of service are nearly twice as likely to be diagnosed with ALS as the general population. Veterans from any era who served greater than 90 days of active service and are diagnosed with ALS are eligible for 100% service-connected benefits.2
Presentation and support
Patients most commonly present with appendicular onset, with weakness of upper or lower limbs, followed by bulbar onset, with slurred speech or difficulty swallowing. Less frequently do patients present with initial shortness of breath complaints resulting from a weakened diaphragm. Nearly 90% of ALS occurs sporadically, with 10% of those diagnosed having a close family member with the disease.
The FDA currently approves just one drug, Riluzole, for the treatment of ALS. This antiglutamate drug was shown to prolong the life of persons with ALS by at least a few months. Associated symptoms such as muscle cramps, sialorrhea, and depression can be managed with pharmacological treatments.
Although the disease is relentless in its progression, major mobility challenges presented in ALS have been addressed by high-tech power wheelchairs, and communication challenges have been met with new generation communication devices and apps, including complex eye-gaze modalities. Adequate nutrition can frequently be maintained via PEG or RIG feeding tube placement.
Patients access the above adaptive devices via their physician or multidisciplinary ALS clinic and continue to live with the challenges ALS presents as outpatients. Daily activities, however limited or supported they may be, are experienced in their own homes with the support of durable medical equipment and family or out-of-pocket paid caregivers.
Maintaining adequate ventilation
Critical to survival for the ALS patient is maintaining adequate ventilation and airway clearance. American Academy of Neurology ALS Practice Parameters recommend consideration of mechanical insufflation-exsufflation devices to clear secretions in patients with demonstrated peak cough flows of less than 270L/min. In addition, noninvasive ventilation (NIV) should be considered for respiratory insufficiency (FVC <50% predicted, Paco2 >45 MM/Hg, MIP < -60 cm/H2O) to both decrease the rate of FVC decline and lengthen survival.3
Although NIV may maintain adequate ventilation for a significant amount of time, the disease continues to progress and patients may ultimately require tracheostomy ventilation (TV). Recent advances in technology have provided portable invasive ventilators with increased battery life, which support mobility and quality of life (QOL) for TV patients.
The constant challenge for ALS patients remains the progressive nature of the disease and QOL issues associated with relying on technology for complex mobility, communication, nutrition, and respiratory support. Patients choosing NIV or TV report a positive impact on QOL, and overwhelmingly (81-94%) state they would repeat their chosen respiratory support modality. However, primary family caregivers actually report a lower QOL than ALS patients receiving TV.3
Home care challenges
The challenges for home care therapists are multifold. Therapists must maintain leading edge knowledge of tools used to monitor and evaluate the ventilation status of patients seen in ALS clinics and during home patient evaluations, including: FVC, MIP, SNIP, SpO2, and EtCO2. Respiratory therapists’ expertise with regard to airway clearance devices and appropriate use of bi-level ventilation support, sip-and-puff ventilation, NIV, and TV ventilation is vital for optimal ALS respiratory support.
Because of the progressive nature of ALS, patients are constantly experiencing changes in mobility, communication, nutrition, and respiratory status. Collaboration with multidisciplinary ALS clinic physicians, respiratory therapists, physical therapists, speech therapists, and dietitians can maximize efforts to decrease the patient’s work of breathing and maintain appropriate adequate ventilation.
Although the current reimbursement environment presents challenges, regular, ongoing home evaluation of the patient, his equipment, and his environment is paramount to providing appropriate, optimal care for patients with this progressive, degenerative disease. This includes physical, cognitive, and social assessments; caregiver assessment; and monitoring and evaluating downloaded data from medical devices. Adjustments to equipment to address such detailed parameters as rise time, trigger, or cycle sensitivity can make an enormous difference in successful home ventilation.4
Acknowledging that patients have the right to confer with their health care team in developing their own health care plan, it is imperative for therapists to provide patients and families with education and information related to respiratory care options, and honor patients’ decisions to accept or decline specific respiratory support. Palliative care and therapy delivered through hospice care plans support optimum QOL during many patients’ most precious days.
Additional information related to ALS ventilation support can be obtained via the AARC Neurorespiratory Roundtable (membership is open to any AARC member for no additional charge) or the ALS Association.
Recruit a new member: Know an AARC member who could benefit from section membership? Direct them to section sign-up. It’s the easiest way to add section membership to their overall membership package.