Associations use education, research, and policy to help patients regain their quality of life

25 April 2022

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As an occupational therapist with a focus on hand therapy, Rachel Pigott, MPH, OTR/L, CHT, Immediate Past President of the American Society of Hand Therapists (ASHT), Occupational Therapist and Certified Hand Therapist, Johns Hopkins Hospital, works every day with patients who have suffered traumatic injuries. But one patient in particular stands out in her recollection.

“I had a patient who is a scientist, and for his work, he needed to be able to use his hands quite dexterously,” Pigott said. “He was involved in a significant accident that caused a devastating injury.”

When the scientist initially came in for treatment, Pigott, knowing the couple had a long road ahead, showed his wife how to change the dressings on the wounds. Despite the fact that the extent of the injury precluded any guarantee of the final outcome, Pigott stuck to her usual philosophy of treatment: patient inclusion.

“I like to transmit knowledge to my patients so they understand what’s going on. Primed with information, they can be an important partner in regaining their health,” Pigott said.

With a measured approach, and working alongside the patient every step of the way, she was able to help him restore his functioning completely. “He said to me that he felt like I gave him his life back and I saved his family’s life,” she said. “To hear somebody say that makes you feel like what you’re doing is very important, and I get very emotional about that.”

Pigott’s story is just one of many tales of healthcare professionals fundamentally improving the course of someone’s life forever. Those who work in healthcare are in the unique position of regularly meeting people at their worst moments — and then helping to make them whole again. Healthcare associations, through the myriad forms of support they provide their members, are an essential element in centering the needs of patients and the communities around them.

Education and Research Help Put Patients Center Stage
Healthcare associations exist for a variety of reasons. They bring like-minded professionals together, yes, but they also make enormous strides in education and research. For an organization like ASHT, which is centered around the merging of occupational and physical therapy disciplines that combines comprehensive knowledge of the structure of the upper limb with function and activity. Specialties by their nature are on the receiving end of less study and less funding than broader areas of healthcare.

According to Gene Terry, CAE, IOM, Executive Director of ASHT, while umbrella organizations, like the American Occupational Therapy Association and the American Physical Therapy Association, provide education across the entire spectrum of rehabilitation, a specialty organization such as ASHT offers focused education and professional development.

“It is rare to find extensive education in a targeted discipline like hand and upper extremity therapy in an organization that encompasses an entire field of study. And that really speaks to the need for and value of specialty associations,” Terry said. “When you’re talking about wound care nurses, heart failure nurses, academic neurologists — they’re all subsets of a larger discipline, and the respective specialty associations are best positioned to provide specialty-specific quality data, clinical practice guidelines, and measures.”

For this reason, many groups, including the American Association of Heart Failure Nurses (AAHFN), prioritize continuing education and professional development. According to Karyn Lockshine, Executive Director of AAHFN, over 7 million people in the United States have heart failure, and because heart failure is not a recoverable disease — meaning that it can be managed for a better quality of life, but not cured — the research in the field is very active, and heart failure specialists need access to the latest information.

“The mission of AAHFN is to unite all the heart failure clinician specialists, patients, and caregivers in the support and advancement of heart failure practice, education, and research, because all of those things really promote optimal patient outcomes,” Lockshine said.

In highly targeted areas like heart failure, specialists themselves can be few and far between. This dearth of specialists is why the Wound, Ostomy, and Continence Nurses Society (WOCN) works to educate not only its own members but other nurses and healthcare professionals around the world. With just 6,000 WOC nurses in all healthcare settings in the United States, there are not enough specialists to meet the need for the skills they provide. To help address the gap in care, WOCN has developed a suite of web-based clinical tools that can guide healthcare workers through a series of questions to determine how to treat WOC patients, and the group collaborates with and educates all manner of organizations, from medics in the U.S. military to WOC-equivalent nurses in China.

Other education from specialty organizations might be business-focused. The Private Practice Section (PPS) of the American Physical Therapy Association (APTA) offers extensive resources for managing a practice so that therapists can focus on what they got into the field to do: help people.

“The education and tools that can immediately be put into practice allow us to be more patient-centered and less worried about the operations or the regulatory details. That’s a tremendous help to me and keeps me from losing sleep at night trying to make sense of all the details on the business side of things,” said Cristina Faucheux, PT, Chair of PPS Key Contact Committee, Owner of Moreau Physical Therapy.

Treating the Patient as a Whole Person
The multifaceted web of educational and research support associations provide their members is key to promoting the quality of life of the patients with whom those members work — and the quality of life of their surrounding communities.

Deb Dupnik, Executive Director of the Nurses Organization of Veterans Affairs (NOVA), has devoted her career to work that supports VA nurses after experiencing the outpouring of kindness and advocacy those nurses showed her family when her father was injured later in life in connection with his military service. His injury left him paralyzed from the neck down. Paralysis brings with it a host of secondary medical issues, from pressure sores to respiratory conditions, and for the remaining 11 years of his life, he was a regular patient at the VA Hospital in Boston. The logistics of the family’s lives were turned upside down, and they needed guidance in making the countless adjustments required by the injury.

“The care that he received at that facility really left an impact on me and my family. An injury like that is catastrophic, and your whole family is affected,” Dupnik said. “The VA nurses were incredible. They helped my mom navigate every aspect of it.”

While improving the quality of life in patients can mean helping them learn to live to the fullest with partial rehabilitation, it can also mean assisting them on their journeys to total or near-total rehabilitation. Nicolette Zuecca, MPA, CAE, Chief Staff Executive of WOCN, has seen firsthand the way receiving specialized care has transformed people’s lives, even those who have chronic conditions.

“I’ve met individuals with ostomies who are climbing Mount Everest, they are dancing tango, they are doing anything and everything that people do, and you never know they had an ostomy,” Zuecca said. “These are people who were absolutely desperate, and many of them near death, frankly, before having an ostomy. And it’s amazing to see them completely rehabilitate and enjoy their lives because of the care a WOC nurse has given them.”

This level of rehabilitation is possible because WOC nurses look both to heal their patients and to teach them to manage their conditions by arming them with information on how to assess, identify, prevent, and if necessary manage any issues that arise.

AAHFN brings patients, caregivers, and nurses together in a similar manner through their dedicated website Together in HF. The site brings patients and caregivers together with nurses to get not medical advice but instead advice on how to manage heart failure as part of daily life. “By reaching out to the patient and caregiver directly to help them with their concerns, we are enhancing their lives on a personal level,” Lockshine said.

Specialty organizations also bring the practitioners themselves together, offering members opportunities for improving patient care by learning from one another. For Faucheux, PPS fills a void of information on running physical therapy practices, and it also connects people willing to serve as mentors — or people seeking mentors.

“You can’t possibly be an expert in all things that are necessary to have a successful physical therapy practice, because there are so many different areas, from legal compliance to how to keep your team motivated,” Faucheux said. “Hearing from people in our field who are implementing various unique services to their patients motivates others to develop similar services to bring to patients in their own communities. Ultimately, the most important goal is delivering the best care possible to your patients.”

When it comes to physical therapy, the best care possible often involves long-term care, and long-term care like that afforded by the members of PPS and other specialty organizations is often overlooked, especially when the initial care is significant in nature. For example, there are times when a hand therapist enters the point of care following a traumatic upper extremity injury and a surgeon has already completed a major procedure, whether by setting a shattered wrist or reattaching a severed finger, but there still remains a great deal of work to undertake.

“The collaborative process and trust between surgeon, therapist, and patient enables hand therapists to make the right decisions and maximize outcomes,” Terry said. “A therapist’s ability to provide options of motion parameters and orthosis designs that will protect while allowing safe function can have a remarkable impact.”

For people like the scientist Pigott worked with to rehabilitate, or like Cake Boss baker Buddy Valastro, whose hand was severely damaged in a freak bowling pin machine accident and whose hand therapy team included a member of ASHT, the rehabilitation required to restore functionality does more than that — it enables them to return to the pursuit of their passions. And this idea of patients’ passions and who they are as individuals is central to their recovery. Each patient’s needs are different, and by truly hearing what those needs are, healthcare professionals can work with them to develop a plan of care that will bring them as close to where they want to be as possible.

Tara Whitmire, DNP, APRN-NP, CHFN, Secretary of AAHFN, Associate Professor and BSN to DNP Director at Nebraska Methodist College, also works part-time as a nurse practitioner (NP) with cardiothoracic surgery at Methodist Hospital. Because her work at the hospital is part-time, she often sees patients only once before they’re discharged, so she cherishes the occasional opportunities she has to work with the patient a few times before they leave the hospital; seeing their improvement gives her a sense of relief.

“I recently started a conversation with a patient, and when I came back the next day, we picked up right where we left off. Getting to know him and his thoughts and beliefs didn’t technically impact the direct care I was giving him, but I think it helped him just to connect with me,” Whitmire said. “As nurse practitioners, we connect with patients differently, so we can allow ourselves that extra time to talk to them and really get to know them better. It’s not always about what medicine I gave you or the procedure I performed on you; it’s about how I treated you as a person.”

Public Policy Shapes Patient Outcomes
To facilitate patients’ access to the individualized care that is the harbinger of the best possible treatment outcomes, healthcare associations often have robust lobbying operations in place. Much of the associations’ work in this arena focuses on securing funding for research and care and improving patient access to medications and treatment plans.

From a health policy perspective, WOCN currently has numerous bills in their sights, because they have to focus on their three areas of specialty — wound-related issues, ostomy, and continence. “We have to have quite a few tentacles in the public policy arena, so we are continually advocating with policymakers, legislators, and regulators on behalf of the WOC nurse and the patients that we serve, seeking support for services, supplies, and especially access to care,” said Zuecca.

NOVA also finds itself working in support of a range of policies, because they advocate not just for VA nurses but for the VA itself, seeking policies that will provide top-of-the-line care to veterans and enable VA facilities to be fully staffed with nurses specifically trained to provide care to veterans.

This includes the RAISE Act, which increases the pay cap for VA nurses and physicians’ assistants and was passed as part of the Consolidated Appropriations Act in March 2022. “The increases in pay as a result of the RAISE Act will help the VA compete with the private sector. Because it’s a federal healthcare system, the VA can’t be a pay leader in any community, but the increase will allow the VA to recruit more nurses, not just in hospitals, but in community-based outpatient clinics and other VA facilities,” said Teresa Morris, Director of Advocacy & Government Relations for NOVA.

The organization is also seeking to ensure that if any VA facilities are closed, whether permanently or as part of an upgrade, veterans will continue to have access to the same level of specialized care they currently receive. This access to care is a concern shared by all areas of healthcare. For AAHFN, there is a particular focus on ensuring newly developed devices that assist heart failure patients to get approved under Medicare.

Meanwhile, therapy organizations like ASHT and PPS lobbied to lift annual visit caps, which prevent Medicare patients from attending more than a certain number of physical, occupational, or speech therapy sessions per year until the caps were finally eliminated in 2018. The caps are a prime example of a policy that didn’t take individual patient needs under consideration, as Mark E. Reitz, PT, Chair of the PPS Government Affairs Committee, Owner of Penn Therapy Associates, experienced firsthand with a patient he has been working with since 1984.

Joe, who was in his late thirties when he began attending weekly appointments with Reitz, has quadriplegic cerebral palsy. “Cerebral palsy patients have numerous medical issues that cause internal organ compromise, and they end up with pneumonia, bowel obstructions, and other horrible illnesses that can wind up being fatal,” Reitz said. “Because of our ability to see Joe on a weekly basis, he is still an independent person with a full-time aide. We have kept him alive.”

Now 70 years old, Joe is still doing amazingly well. But that was not always the case. Every year until 2018, the number of physical therapy visits he was allowed would run out, and Reitz continued to treat him for free. One year, though, Joe refused the gratis treatment, saying it was unfair to Reitz. Within three or four months of not attending appointments, he contracted pneumonia and a bowel obstruction and almost died.

With the caps lifted, Medicare patients and their providers will no longer have to worry about access to care disappearing. And it’s successes like this one that shows lobbyists and advocates that their work is meaningful and can create tangible changes in people’s lives.

To further these policy goals, some organizations, including both PPS and NOVA, are working to pair members with congressional representatives from their states and districts, because there are always more policy changes that can improve patients’ lives and health outcomes. Faucheux’s role as part of the Key Contact Committee at PPS is both recruiting organization members to pair with members of Congress and training them on how to develop relationships and advocate for the organization. Morris, as the Director of Advocacy & Government Relationships for NOVA, plays a similarly educational role as part of her position, preparing simple guidelines on topics like how to schedule meetings with Congress members and what the NOVA’s aims are.

“The main concern of individual congressional members is what’s happening in their particular district with their own constituents,” said Morris. “And veterans are in every district in every state, which connects every member of Congress to the veteran population and the veterans’ vote. So they always want to know, ‘What can we do for the veteran this year, and how can we improve the healthcare provided at VA?’”

For any association, lobbying is ultimately person-to-person work. By educating members of Congress on their specialties, advocates are able to put a human face on the budgets and policies being voted for on Capitol Hill, and they are able to explain in layman’s terms the enormous impact these issues have on patients’ lives.

Helping Patients Move On
Whether educating their members, conducting research, facilitating relationships between patients and healthcare professionals, or advocating for better, more patient-centric government policies, associations create a home base for professionals to turn to as they seek to achieve the best possible outcome for each person who comes under their care. This drawing together of experts allows them to encourage and inspire one another, and in turn their patients and communities.

Vashti Livingston, MS, RN, Director of WOCN, Clinical Wound, Ostomy and Continence Nurse Specialist at Memorial Sloan Kettering Cancer Center, fully embraced the culture of being a WOC nurse from the very beginning, and she has been involved with the organization as a volunteer at every level. Like any healthcare worker, her job affects other people’s lives every day. And she hopes that she’s impacted them, helped them, coached them, and moved them along in their journey.

“When I was relatively new to being a WOC nurse, I was called to the home of a rabbi,” Livingston said. “He was totally overwhelmed by the whole idea of having to change his pouch and care for his ostomy. There he was, practically in tears, holding his discharge instructions with 20 steps of what to do and a bag full of unorganized supplies. He didn’t know where to start, he was leaking every day, and he was scared to leave his house. He couldn’t even go to synagogue, which was six blocks away.”

The rabbi told Livingston he felt as if his life was over. And when any patient says that, Livingston said, it’s time to take a pause. She sat with him, and together, they simplified the process to three steps: clean it, dry it, and apply a new pouch.

“I said, ‘Rabbi, you’ve got the inside connection. Pray this stays on,’” Livingston said. “Then I prepared two kits for him with written instructions so he could duplicate what we did. And a few days later he called the office and said, ‘Thanks for giving me back my life. I went out and went to the synagogue. I can see myself moving on.’ And this is what we as healthcare workers want to hear from our patients.”

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