Educating Patients and Families

 Published: January 2, 2019

By: Heather Willden


image of medical professional working with older woman

Every patient and informal caregiver dealing with a chronic disease needs patient education, and that’s especially true for those struggling to cope with a chronic disease that affects the ability to breathe. When taking that next breath no longer comes quite as naturally as it once did, people have questions, and they want answers.

Respiratory therapists are the right people to provide these answers.

It’s part of the culture here

“We are the frontline responders for patients who have breathing difficulties, whether acute or chronic, and are the experts in lung disease,” said Rita Edwards, BS, RRT, RPFT, from Paoli Hospital in Paoli, PA. “We know the disease processes and how to manage them, and given the volume of patients we deal with, how to educate them, their family members, and caretakers.”

She and her colleagues in the Pulmonary Diagnostics & Wellness Center often see patients in the outpatient setting who were in the COPD pathway while they were inpatients, and especially if the diagnosis is new to them, they will bring a family member or caregiver along when they come in for testing.

“We discuss pulmonary rehab, their given diagnosis, pursed lip breathing exercises and treatment options, and at times, general results of the studies performed,” Edwards said. “A common statement I hear is, ‘I got more information from you than my doctor!’”

She says it’s the culture in her center — which also provides pulmonary rehab — to make sure patients and family have all the information they need to manage their disease at home, whether that be COPD or asthma or ILD or another condition. Because of that commitment, they walk out the door knowing “they can do this,” she said.

Thank-you note tells the story

As manager of the pulmonary rehabilitation program at Orange Regional Medical Center in Middletown, NY, patient and family education is something Elyse Carroll, BSRC, RRT, CTTS, is in engaged in every day of the week.

“Chronic lung disease affects the whole family, directly and indirectly,” she said. Family members often feel helpless and sad about what they have lost in having to care for someone with a chronic condition.

“The family or spouse may have had different dreams for their future, like traveling when retired and now unable to,” she said.

In addition to providing education about the disease itself and how to care for it at home, the RT can address these feelings.

“RTs have seen this before and can support the family and help them find joy in things that are possible — like traveling differently with portable oxygen or offering resources to assist with that,” Carroll said.

Patients and families appreciate that high touch level of care. She shares a recent thank-you note she received from a patient and family that shows it —

You gave us hope, you shared your years of invaluable experience and expertise by answering every question with lifesaving information, demos and humor! WE felt so comfortable sharing our feelings and physical challenges. You are an excellent listener and observer . . . Our lives are better because of you!”

“The patient came feeling hopeless and left feeling grateful!” Carroll said. “He reported rethinking his bucket list!”

Whenever and wherever

John Basile, BA, RRT, is a clinical specialist at Memorial Medical Center in Carson, WA, who makes it a point to provide patient education at the bedside whenever and wherever he feels it is needed.

“Respiratory therapists have the needed knowledge of cardiopulmonary physiology and therapy to benefit patients and their families,” he said. “When family members or caregivers are in the room, I ask them if they have questions and if I can explain what the therapy is and how the therapy works. I also explain how outpatient therapy, especially pulmonary rehabilitation, if applicable, can benefit the patient in the long-term.”

For example, a patient may want to know how his oxygen therapy is actually helping him/her, or a caretaker may have questions about the medications the patient has been prescribed. Basile will take the time to provide answers in lay terms the patient/family can easily understand and will also explain how to best utilize medications and treatments at home, emphasizing that proper use of medications and devices like CPAP can reduce the chance of ending up back in the hospital.

“The feedback that I’ve received from family members and caregivers has always been positive as they express how it helps them understand better how to help their loved one,” he said. “I believe that respiratory care practitioners should be providing more patient education to help reduce COPD readmissions and improve the overall quality of life for our patient population.”

24/7 support

Access Respiratory Homecare is a full line HME company in Southern Louisiana with nine RTs on staff who spend much of their time in the home instructing patients and families on the use of respiratory equipment that can range from positive airway pressure devices and apnea monitors to high flow therapies and ventilators.

“RTs make routine follow up support calls and are on call 24/7 to support our patients with all of their respiratory needs,” said Anna Campo, BSRT, RRT, vice president of clinical services for the firm. “Additionally, RTs are available for walk-in consultation at our retail/clinical store.”

She says it’s rare for the company to receive any negative feedback about these visits — the vast majority of patient comments are extremely positive — but on the off chance that they do, they use it as a learning moment to devise even better ways to interact with their clients.

“It is usually the transfer patients who are the most appreciative of the expertise of a readily available RT to assist them,” Campo said. “For them, that is a service that is lacking in other HME companies as a way to cut cost.”

Her company is committed to continuing the service.

“It is our experience here at Access Respiratory Homecare that it is best practice to invest upfront in good, qualified, compassionate, and knowledgeable RTs. This keeps our patients adherent to therapy and as healthy as possible,” Campo said.

Talk with, not at

Roxanne Seieroe, MS, RRT, RPFT, isn’t in a formal patient education role right now — she’s serving as the coordinator of non-invasive pulmonary diagnostics at CHI Health in Omaha, NE — but she is passionate about patient education.

So passionate, in fact, that she earned her master’s degree in health education.

“I believe that giving patients the resources and knowledge to feel confident about their ability to manage their disease on a daily basis is key to our patients’ maintaining a good quality of life,” Seieroe said.

Her master’s program taught her a lot about the right way to go about that.

“My program allowed me to understand not only the importance of dialogue with the patients and to understand when family members are a help as well as an obstacle, but it gave me insight into creating materials or using existing materials, that are understandable and easy to follow,” she said.

She emphasizes, in particular, the need to talk with patients and families rather than talk at them, noting she has seen too many patient educators deliver information in more of a lecture format, with little interaction with the people they are attempting to teach.

“This may be fine for a few well-motivated patients who are going to do what they can to improve their health regardless of how the information is delivered but doesn’t work for most people who may feel that they are being told what to do,” she said.

Active dialogue not only engages the patient in making his own self-management plan, but it also helps the educator uncover potential barriers to success and solutions to overcome them.

That’s the tactic she and her RTs in the diagnostics lab try to follow when providing brief education to their patients on correct MDI technique. “They are grateful that someone has taken the time to explain what the med does and how to use it,” Seieroe said.

Everyone needs to jump in

Clearly, patient and caregiver education are everyone’s job in respiratory care, and the better we all become at it, the more our patients will benefit from fewer hospitalizations and improved quality of life.

Want to get up to speed on patient education? Consider taking the AARC’s Pulmonary Disease Educator Course.

Email with questions or comments, we’d love to hear from you.

Heather Willden

Heather Willden is the Director of Governance and Strategic Initiatives for the AARC where she works with state affiliates as the HOD liaison. She also manages DEI efforts and strategic initiatives. Connect with her about these topics by email, AARConnect or LinkedIn. When she's not working, you can find her podcasting with her husband, exploring new hiking trails, photographing, and spending time with her family.

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