Illustration of Institutional Barriers

For my first 3 years as a therapist, I worked in a skilled nursing facility (SNF). All SNFs do not all have the same set up, but ours was designed to have 50% short stay patients to be rehabilitated after a hospital stay and then discharged to home, with the other 50% as long term care residents. As the only evaluating physical therapist with a team of 2-3 physical therapy assistants, it was my job to do all the initial evaluations, as well as to screen the long term care residents for any changes in mobility status that might warrant a course of physical therapy. Occasionally, people who came in as rehab patients never progressed to the functional level necessary to return home, and they would become long term care residents. This story is about one such patient.

The gentleman I’m describing came to rehab after a stroke. He had a lot of medical complications like extreme blood pressure fluctuations, UTIs, and frequent pneumonia, as well as a lot of behavioral complications like refusing to follow his prescribed dietary consistency (which caused his frequent pneumonias) and refusing to spend time out of bed except when in therapy. None of these complications are unusual in a SNF setting, but they all lead to decreased ability to participate with therapy. He ended up staying long term. Somewhere along the line he was diagnosed with diabetes, which subsequently resulted in bilateral lower limb amputations. When he returned back to our facility after his second amputation, I evaluated him again for physical therapy, as I had every time he returned from a hospital stay. He declined all participation, saying he just wanted to lie in bed, as he had for the past year or two. I accepted his decision and reminded him that we were just down the hall if he ever changed his mind.

About 6 months later, much to my surprise, this man called me (from down the hall!) to say he wanted to speak to someone about getting prosthetic legs. These limbs are custom made and expensive, and typically insurance requires a letter or some communication from a physical therapist in order to pay for them. I told my patient, “Listen. I don’t know if you’ll be able to walk even if you get them. And right now, I can’t recommend them because you have refused all PT for the last 2 years, and you haven’t spent time out of bed in at least 6 months. If you get out of bed for at least 2 hours every day for the next month, I will write the letter for you and get the ball rolling for prosthetic legs.” I was intrigued, but honestly had no expectations.

But, he faithfully got out of bed every day for a whole month. On the first day of the following month, he had a nursing assistant bring him in the wheelchair to visit me in the rehab gym, with a huge smile on his face. We high fived, and I called the prosthetist immediately. The prosthetist was initially hesitant to custom fit prosthetic limbs for someone who hadn’t stood in 2+ years, but with this patient’s persistence, he agreed. I put the patient on my schedule, and we got started right away on stretching and strengthening in preparation for standing. The prosthetist returned a few weeks later to try the new “legs”. When they fit well in sitting, the 3 of us looked at each other quietly for a moment. The patient said, “I know I can stand because I have legs now. Let’s do it.” The prosthetist looked at me, as if to say, are you really sure about this? I wheeled him into the parallel bars, gave him instructions on where to place his hands, and on leaning forward “nose over toes”. Then on the count of 3, we tried.

Much to everyone’s surprise, the patient popped right up out of his chair. I assisted some, but honestly not as much as I expected. We all waited for him to get dizzy, or his knees to buckle, or express the need to sit because of pain…but instead he started to wiggle his hips and do his best Elvis Presley impersonation for 2 whole songs! We all laughed, and we all cried. The prosthetist and I were truly surprised, but the patient was beaming. He bragged about standing to anyone who would listen on the ride back to his room.

Over the next few months, he worked tirelessly on balance, strength, coordination, endurance, and gait. He was so motivated, and he was so excited every session to work hard. We developed a great relationship, and he performed many Elvis songs for the entire therapy gym. He was walking a little over 100 ft with a walker, requiring only stand by assist (someone very close with arms out ready for a loss of balance). Unfortunately, around he ran out of insurance money to cover therapy, and he did not have the means to pay privately to continue. At that time, people with Medicare were allotted a certain sum of money to cover all outpatient therapy services for the year, regardless of diagnosis. Because he was a long term care resident, his therapy was considered to be outpatient. So, I was required to discontinue therapy services, per our institution’s policy. He was devastated, but I reassured him that he would definitely continue walking with our restorative nursing aide at least 3 times a week. I wrote a clear restorative nursing plan, gave it directly to our wonderful restorative nurse, and even had her practice walking with him during our last therapy session so they would both be comfortable continuing without me. This whole story is a giant win for compassionate care. Everyone from the team actively listened to the patient’s wishes, followed his cues, and worked together with good communication for his benefit.

But here is where things break down. Our facility, like most others, never had enough nursing assistants on staff. No matter what, they would not hire more than the bare minimum to get the job done. So, any time one would call out sick, or if a patient was having some type of emergency (which honestly happens a lot in a 120 bed nursing facility), they would pull the restorative nurse to do nursing assistant work. Then, one of the nursing assistants quit, so they pulled her permanently into nursing assistant work until they hired someone new. Which they never did.

My patient was furious. He wheeled down to therapy every day to yell at me that he wasn’t getting any walking practice. He went to the director of nursing and building administrator several times a week to yell at them. He berated the former restorative nurse every time he saw her for not walking with him. He was not allowed to come back to therapy, since he was out of PT money for the year. And I certainly wasn’t allowed to take him for walks on my own, since that would be a big hit to my productivity ratio. He went months without walking.

I changed jobs several months after his therapy was discontinued, and I honestly have no idea what happened to him. I like to imagine that additional nursing staff was hired to allow for a restorative nurse to work with patients on mobility issues, and I love to imagine him walking down the hallway singing Elvis. More likely though, his prostheses sat in the back of his closet, unused, while he gave up fighting against an immutable system. This scenario plays out in so many ways daily for patients, nurses, and therapists, all who have the same goal, but for one reason or another, aren’t allowed to do what’s best by the patient. Imagine implementing best evidence by acting compassionately, coordinating with other providers, and working for months toward a goal, only to have progress halted in its tracks because of a corporate decision not to hire one minimum wage employee. It's no wonder nurses, therapists, and many other players in the health care world are suffering from burnout, especially in today's climate. The research supports the idea that providing space and support for compassionate care protects against provider burnout, and I’ll get into that in next week’s post. This week, I want my patient’s story to stand as an example that, even when compassionate care is provided at the individual level, compassionate care cannot prevail if the health system is functioning with only the financial bottom line in mind.