I've been watching a familiar scenario play out over the past few weeks. The wife of one of my seriously ill patients has been living a dual life. She simultaneously stays at the hospital all day to care for her husband while racing home to raise three children. Every time I see her she looks more exhausted.
Trying to be Wonder Woman isn't new among caregivers. Over the years I've seen many women, and some men, run themselves into the ground trying to care for an impaired loved one. The circumstances are always different except for one common theme. There is one woman caring for her family and her loved one, while not taking care of herself.
I read a paper a few years ago that described the various diagnoses that go untreated in female caregivers. The usual reason given for lack of medical attention was not having enough time. Number two was being unable to leave the loved one unattended while seeking the medical attention.
Those with hospitalized loved ones have an advantage over those at home. While they might be present 24/7, they aren't providing the care. They can leave the room for periods of time. Homebound caregivers may not have that luxury. Often there isn't anyone to assist or the assist is only available at certain times. Respite care seems to have become a thing of the past.
Even those who don't live at the hospital are burdened. Doctors' schedules are unpredictable, resulting in frustrated family members who want to talk to them. There are always questions being asked and decisions that need to be made. Making arrangements to bring home the loved one can be an ordeal in itself. Once the loved one comes home, caregiving becomes a 24/7 obligation.
You can tell who the caregivers are in any facility. They are the ones who look exhausted.
I've previously mentioned my disappointing stroke patient. First he had a stroke. Then he had almost every possible complication. Finally he's doing better and getting ready to go to rehab. Everyone agrees he needs to go to rehab. Now there's disagreement about which one.
In Houston there are several inpatient rehab centers. One specializes in brain injuries. His therapy team, wife, and PM and R doc want him to go there. From day one that has been our goal. Today I learned that probably won't happen.
His attending physician at my facility prefers to keep her patients local. Neither she nor the other doctors who've been following him go to the brain injury facility. It's too far away. The attending physician wants him to go to a local place. It doesn't have a good reputation. None of the patients I've worked with who've been there want to go back.
Insurance is not a problem in this case. It will pay for rehab wherever he goes, but he'll be lucky to get more than a few weeks covered. Although he will get 3 hours of therapy at both places, one will certainly be more bang for the buck.
As far as I know, no one is addressing this. The attending doctor is known for temper tantrums and yelling at people. She also brings the most admissions to the facility. I'm so far out of the loop that I would be scolded by my department head for even attempting to speak to the doctor. Although the doctor seems to care about the patients, all decisions are based on what's best for her.
My department head said she will try to talk to the doctor. What happened to making decisions based on what is best for the patient? This is worse than insurance companies practicing medicine. Where this patient goes for rehab will determine his quality of life for as long as he lives. I don't think a friendly chat with this doctor is going to fix the situation.
I really don't know what to do. I'm going to try to think of some way to bring more attention to the problem. Maybe if there's enough attention on it, the doctor will do the right thing to look good. I can hope anyway.
No, I'm not the one using a wheelchair. One of my fellow therapists is. She has chronic knee and ankle problems. It started out as wearing a walking boot, then progressed to a knee brace and either a walker or a wheelchair to get around. She chose the wheelchair.
The rest of us don't know what to think about this. She says her problem is walking across the facility. The distances are so great that walking them makes the pain unbearable. I think part of the appeal is she travels faster via chair than walking. Using the chair has also brought her much attention. At least once a day, I overhear her giving someone an update.
Here's the problem. Walking is part of her job. So is standing and transferring patients. If weight-bearing is so painful that she can't walk on the leg, is she doing her job? This is not a person who did much standing before this happened. Like clockwork all of her patients do the same activities with her sitting next to them.
Here's a bigger question. She is relieving the pain by staying off the leg. What if the pain never subsides? Is she going to continue using the chair indefinitely? Maybe since the constant walking and standing is causing her these problems, she needs to rethink where she's working. There are other settings that require much less walking and standing or where patients are brought to you.
None of the rest of us believes we would be allowed the same luxury. I limped around for 3 days on a sprained ankle, hiding from administration so I wouldn't be sent home. It never occurred to me to grab a wheelchair. I should mention we're entering our second week of wheelchair-based therapy.
I don't know about anyone else, but if I were in the hospital and my therapist came to treat me via wheelchair I'm not sure I would take that person seriously. That person might be an excellent therapist but perceptions matter. Someone rolling around in a wheelchair isn't giving me a good impression.
I'm now participating in monthly conference calls for advocacy for physical therapy. Participating might be too strong a word. I listen. Others report. As a result, I've learned that much effort is being put into eliminating the therapy cap and other reimbursement issues.
At the end of the call, the facilitator encouraged everyone to keep talking to their elected officials. We were told our big ask this month involves the therapy cap. Please ask Congress to support the latest bill under discussion.
That made me wonder how many things we're asking for and who is doing the asking. The APTA has paid lobbyists. This probably happens on the state level as well. Their job is to push legislation we want. I'm not sure how the process works, but it seems to me we'd have a bigger impact if everyone was pushing a united message.
In Texas there seems to be three key areas we focus on: direct access, preservation of scope of practice, and reimbursement issues. I don't know if the same people work on all of them or if separate groups focus on each one. I do know the TPTA PAC is constantly asking for donations to push our agenda. I wonder if we would be more effective if we picked one area, say reimbursement as that affects almost everyone, and put all our efforts and funding into that legislation.
The average therapist is more worried about having a job, a decent salary and getting time off than many of the items I heard discussed. It almost sounds as if our legislative group is out of touch with the majority of practicing therapists. Of all the practicing therapists I interact with on a regular basis, only one would put direct access at the top of a list for legislation.
I'm not saying all those things aren't important. It just seems to me there's a better way to accomplish our goals with the resources we have.
Everyone who knows me knows how neuro-focused I am. It's easy to imagine me getting excited when a relatively fresh ICH patient was admitted to our facility. I felt like someone gave me a present. He'd had some complications postoperatively so he came to us prior to rehab.
As soon as I read the chart, I was already thinking of what I wanted to do. Not only was he awake, he was following commands. I teach this stuff on a regular basis. Now I could actually do what I tell others to do as well as test two of my pet theories. The patient would benefit because if anything, he'd get more therapy. This is definitely a win-win situation.
I've worked with him for three days. And to paraphrase a movie, Houston we have a problem. This guy is lazy. He doesn't want to work. He doesn't try. If it is the least bit challenging, he won't do it. My tech and I have gotten him up each day. We no more than leave the room and his wife is coming down the hall saying he's tired. He needs to go back to bed. Of course he's tired. I just wore him out.
The wife is another problem. I've never seen a family member so disinterested in therapy. She spends most of the sessions shopping on her phone. The nurses have told me she quit her job so she can stay in the room with her husband. Twice she has asked if her husband can have medical marijuana. He asks for cocaine.
I already had the nice come-to-Jesus talk. I explained what it takes to recover after a stroke. I explained how important it was for him to work with therapy and build up his endurance. I explained the criteria for inpatient rehab, which is where someone 40-something years old should go. I also explained the alternatives. I might as well have been speaking to a brick wall. No, at least the wall would have absorbed the words.
I almost want to cry. Here is someone with so much potential. This is why I do what I do. I could get him walking. Instead he wants to lie around in bed and get high. I'm going to keep trying. Maybe the light will eventually go on and he'll realize it's up to him. My tech has already told me I'm fighting a losing battle and to let it go. There is nothing I can do for someone who won't take responsibility for getting better.
I'm noticing a disturbing trend. I'm always the one pointing out the bad news. I admit I do better with realistic than cheerfully optimistic, but it seems like it's always me pointing out the flaw with a plan. If I'm not pointing out the obvious, I'm explaining why the obvious isn't going to happen. It feels like everyone else is focusing on happily ever after and I'm saying not during this admission.
This is particularly true with our PM & R crew. I've complained about them before. For some reason they ignore what the patient is currently doing in favor of what the patient wants to be able to do. I've heard one of the PAs make promises to patients that aren't realistic. Giving patients hope is one thing. Setting them up for failure is another.
When I confront them, the response is always, "Well it could happen." Sometimes I feel like I'm teaching basic rehab science to an empty room. I almost like it better when they don't interact with the patients. That tends to keep the expectations more realistic.
Most of the patients in my facility are very sick. Rehab usually isn't their biggest need. They need to get well enough to do rehab somewhere else. We're not a rehab facility. We get people ready for rehab. I'm tired of constantly explaining this to people who should know better.
Oddly I have no problems with the case managers. They all seem to get that these patients aren't going home when they leave us. They work to make the transition as easy as possible.
I don't want to be negative. I just know from experience what is possible, what is not possible and how long it takes.
Last month we had a PTA student at my facility. The other PT was his CI because while schedule facilitates time at the barn, no one else wants to start work at 6 in the morning. From the beginning, the student made it clear he planned to work in an outpatient orthopedic clinic. I believe he had already lined up a job.
I didn't think much about it until a doctor wanted a functional assessment of an incomplete SCI patient. Because I'm the neuro person, the student asked me. I tried to explain the ASIS scale to him. He didn't know what it was, which didn't surprise me. What surprised me was his attitude. He didn't want to know. He said he was going to treat orthopedic patients so it wasn't that important.
My response was pointing out there will be an ASIA question somewhere on the exam. He will need to know it to pass his neurological course. I guess he plans on memorizing for the exam and then forgetting like everything else neurological.
It seems like all students want to either do orthopedics or pediatrics. But this is the first time I've heard anyone be so dismissive of neurological principles. The sad fact is, as much as I wouldn't want to, if a total joint patient rolled into the gym I could treat the patient. I wouldn't enjoy it but I could do it. If a stroke patient ends up at an ortho clinic, they are clueless. Unless it's someone with minimal impairment, they don't know what to do.
I didn't bother to give this guy an attitude adjustment. Sometimes you just have to let nature take its course. It's bad enough that wherever I go, I hear the DPT graduates aren't prepared for anything but to be called doctor. Now I've met this guy who seems to think a good part of physical therapy education isn't necessary.
Is the problem us? Is it the programs? Did he just not say anything to anyone previously? Had he been my student, I would have called the program. All of the previous students I've encountered have been told to keep biases to themselves and concentrate on the current setting. I hope this one was the exception to the rule.
Currently I have an elderly gentleman with a traumatic brain injury from a fall. One version says he tripped over his dogs. Another says he had a seizure. Either way he hit his head on the way down, developed a bleed and had a craniotomy. The man was clearly ambulatory and functional prior to his injury.
I'm not getting anywhere with him. It took a while for him to wake up. It took a little longer for his aphasia to improve. Lying peacefully in bed, he can speak in complete sentences most of the time. In fact he is pretty well behaved until I try to move him.
He has perceptual deficits and possibly a right visual field cut. He's a little weaker on the left compared to the right. Those are all things I can deal with. The problem is the premorbid alcoholism. According to his chart, he averaged a bottle of vodka a day. Add that to some dementia. As soon as I try to move him, he fights me.
About every third day he is relatively clear. He sits EOB with SBA. He follows commands. He even stands with assist. I could have him walking if not for the confusion and combativeness. His sitting balance is good enough for a w/c but I can't put him in one. Someone would get hurt in the process. Every day I stand in his door and try to figure out what to do.
He will discharge to a SNF, where if his behavior continues he will become bed bound. Everything I could want in an ICH patient is there except for the cognition. How many times is it the other way around? Usually I have patients who can participate but lack motor activation.
My tech is a real sport about this. He gets the brunt of the resistance. Yet he still smiles and says okay if I want to try sitting this guy up. We can't do this much longer. We're getting beaten up. Pretty soon I'm going to have to accept there is nothing I can do about this.
This morning I was working on discharge planning with one of our case managers. A doctor was ready to discharge a patient and she had asked me for recommendations. I immediately said SNF. He wasn't able to safely transfer out of bed. I had yet to see him walk due to complaints of back pain. And he lacks insight into his limitations. The case manager agreed with me but said the patient was refusing to go anywhere but home.
Believe me, this is not someone who needs to go home. He can't make it to the bathroom without assist. I don't know how he would function if he were home alone. On top of that he has a 10-step entry into his home. Finally the case manager called the man's wife. After some hemming and hawing, she stated the patient's brother had recently moved in and would be able to assist her with assisting him.
Both the case manager and I know that isn't going to work. His family isn't going to be able to manage him. The case manager informed me his insurance won't pay our facility if we say he needs to go to a SNF and he goes home. The only way we'll be reimbursed is if he follows whatever discharge plan we establish.
I get that is a problem. What I don't understand is when did we stop billing these people? Who decided and when that patients are no longer responsible for medical bills? Maybe the question is when did people stop caring whether medical bills were paid? Once again, we have decisions being made based on reimbursement that aren't in the best interest of the patient.
Both the case manager and I documented our concerns. She added a statement that his wife states she and his brother will be able to adequately care for him 24/7. Both of us know that isn't correct but there's nothing we can do about it. It'll only be a matter of time until he is readmitted, probably worse than he already is. How is this good patient care? How is this good discharge planning?
The saddest part of this is that it's not an isolated case. It goes on every day where I work and in facilities throughout the country. These people are in and out of the same facilities over and over again. Eventually the insurance companies will refuse to pay us because of multiple admissions for the same problem.
As part of my leadership program, I attended the Texas Physical Therapy Association (TPTA) strategic planning meeting last weekend. The idea was to get newer and upcoming leaders to meet and mingle with people in leadership positions. We also got insight into how decisions are made and what is on tap for us in the future.
I loved it. I chose to participate in the professional development subcommittee. I think I have found a new niche. Right away I realized things I've been thinking and saying were parallel with what was going on. I was able to make some suggestions that were added as steps to the overall strategic plan. I want to do more of that.
There's one problem. All of the people involved beside a few leadership fellows hold elected positions. In order to attend further meetings, I need to be elected as either a district chair or to a state-level office. I'm on the nominating committee but am not chair so that doesn't help. I don't think I'd be turned down if I wanted to attend again, but I need to ask in such a way that it's obvious I will be a contributor.
It's been a while since I've done something I've actually enjoyed doing. Other than teaching and keeping up with the stroke literature, there hasn't been much. My eyes have been opened to a new avenue to pursue: leadership. I'm not sure what's out there but I need to investigate.
As a leadership fellow, I'm expected to complete a service project for the TPTA by October of next year. I have until October of this year to select what it will be. I'll be working with a mentor to complete the project. The purpose of the mentor is to problem-solve and keep me from reinventing the wheel. I brought the materials home to study. Ideally I would like to dovetail my project onto this meeting.
I also discovered that a horse show is an acceptable excuse for missing some meetings. Several others mentioned they wouldn't have been there if "blank" was going on. I can't describe how relieved I felt. It was worth it. Allie and I got three firsts but I felt I was missing an obligation. In order to run for higher office I must serve as a delegate. That requires some travel. I'm not sure how that will work out in the future but planning is everything.
A few weeks ago, a woman was admitted to our facility with a knee injury. She appeared to have ligamentous damage on top of arthritic deformities. She came to us for medical management and antibiotics prior to surgery. Before she was admitted, her orthopedist ordered a KAFO for the involved leg.
I'm not a big believer in KAFOs. In my experience they are bulky and uncomfortable. In this case the woman weighed more than 300 pounds with chronic lower-leg edema, although her skin was intact. This meant the brace required extra reinforcement to be able to support her.
When the brace was finally completed, it cost $2,500. My facility refused to pay for it because that money would come out of their reimbursement. Management stated the brace was ordered before she was admitted and therefore wasn't our responsibility. Furthermore, the brace wouldn't be used until after the surgery, when she would transition to a SNF, so the SNF should pay for it. Naturally the brace company wouldn't release the brace to her without reimbursement.
I wish I could say this was an isolated incident. Maybe the cost is a little more than usual, but it happens all the time. No facility wants to pay for any sort of brace or orthotic. If something off the shelf can't be used, the patient must wait until transferring to the next facility or using Medicare part B if discharged home. Stroke patients do much better with hinged AFOs but they are almost impossible to get.
It almost seems like facilities and insurance companies are practicing medicine. The need is identified. The physician writes the order. Then either the insurance refuses to pay for it or the facility does. Insurances simply say the device wasn't covered. Facilities say the patient can get it at the next level of care, which also won't pay for it. The end result is something deemed medically necessary with a physician's order isn't purchased for the patient.
Last month I went to an onsite CEU course. Back in the day, I was a CEU junkie. I'd go not just for CEUs but if the topic sounded interesting. More recently I've had to cut back and limit myself to CSM. This year I got burned by the stroke course at CSM. Needless to say, I was a little nervous about this one.
The topic was motor learning. It was taught by someone I'd heard speak previously. He was interesting a few years ago. More importantly I was positive he knew more about the topic than I did. I was correct. It wasn't so much that I learned new information. I learned better application of what I knew and gained some insight into why I see some of what I do.
It was nice to sit in the class for a change. I didn't have to watch the clock. I didn't have to be on for 6 straight hours. I could go to the bathroom whenever I wanted. People attending a class don't realize this. They can get up and run to the bathroom whenever they want. The instructor can only go on the breaks.
I realize the more I know about a topic, the less there is for others to teach me. I'm trying to pick things that are newer or unfamiliar. Having written course descriptions and the like, I'm getting better at reading between the lines.
It was a nice experience to sit back and listen to someone else for a change. Not once did I have to sit on my hands to keep from correcting him. Nor did I have the urge to cite literature contradicting what was being said. More importantly, I actually received useful treatment suggestions for application in the clinical setting. I didn't agree with everything he said, but he supported what he said with research so I understood how he drew those conclusions.
When I attend courses, I try to be considerate. I keep quiet if I disagree or have evidence otherwise. If I want to discuss something, I wait until the break. It was nice to actually get more than my money's worth this time.
The facility I work in isn't very large. We have a cafeteria that's only open a few hours at time. For lunch we have two entrees, soup or the grill. Just like everywhere else I've worked, we all complain how expensive it is. When you check out, there's a small cup for pennies. The cup rarely holds just pennies. There are usually a few dimes, nickels and even a quarter. It's never empty.
At first I would drop in the pennies I got in change. Then I started adding more. I'm afraid I'll be short one day when buying lunch. I put more in so I won't feel guilty if I have to rely on it to make up the difference. Now I probably put in anywhere from 50 cents to a dollar each week.
A few days ago I was behind someone who was 20 cents short. The woman was going to run back to her purse and get the difference. The cashier grabbed the difference from the change cup and told her not to worry. When I checked out a few minutes later, I added the difference to the cup from my change and told her not to worry.
Since that time, I've seen the same thing happen three times. Now I know why the change cup is always full. We're all putting in extra change to cover everyone else.
Wouldn't it be nice if we could do that on a larger scale?
Last weekend I was describing a difficult patient I had worked with earlier in the month. It was someone with several chronic and out-of-control problems, obesity and medical noncompliance. I summarized my statement with, "I don't feel sorry for him. He created his situation."
I was immediately taken to task by someone who overheard some of what I said. I was told I shouldn't be working at that facility, much less in the profession if I don't feel sorry for my patients. This was someone who never works directly with patient care. She also only eavesdropped on part of the conversation because the statement made more sense in its entirety.
My eavesdropper apparently has equated good, quality care with feeling sorry for a patient. I don't feel very sorry for people who bring it upon themselves by neglecting diets, skipping medicines and becoming obese. That doesn't mean I won't provide the best care I can for them. Nor does it mean I don't want them to improve. I don't have to feel sorry for you to treat you to the best of my ability.
The sad truth is much of what we do involves working with people who don't want to do therapy. Or who don't want to get better. Or who don't want to take responsibility for anything. They would rather have a PT lay hands on and heal them. Once they leave the facility, it's only a matter time before they return with exactly the same diagnosis and deficits.
One such patient was an obese gentleman who came to us with an infection and chronic back pain. He didn't want to walk because it was painful. He couldn't move enough to make exercises effective. The only thing that was going to significantly help his pain was weight loss. He didn't think weight loss would work because he'd always been big-boned. That was not someone who was easy to help.
People don't always make the best choices. Just because I don't feel sorry for you for making bad choices doesn't mean I won't help you try to get better.
This is something I've never experienced. The facility I work for uses therapy gerichairs as recliners for patient family members. For some reason, the facility has yet to invest in recliners that can be put in patients' rooms. When a family member or patient requests a recliner, someone is dispatched to the rehab department to retrieve a chair.
This creates many problems. Once the chair goes into a room, I'm not allowed to remove it. This decreases my already limited supply of chairs for patients. I'm not allowed to remove the chair to keep the patient or family happy. Currently I know of two chairs being used as recliners in rooms where the patient isn't on caseload.
If I point out I need the chairs for patient comfort, I'm told to make do with what I have, but make sure the patient is happy. Usually this means rotating the chairs between several patients so everyone gets out of bed but for a limited time.
To make matters worse, whenever a chair is commandeered it's always one of the newest ones. Family members sit in the newer chairs. Patients sit in the older, less comfortable ones. I'm already forever searching for wheelchairs that have been commandeered to transport family members, then left in the room so the visitors have some place to sit. Now I have this.
When I brought the problem to administration, everyone agreed it was a problem. Everyone agreed the patients needed the chairs. Currently there is no money in the budget to buy recliners, or any other chair for visitors. It wasn't budgeted for. That's interesting. This problem has existed for years and no one has thought to budget for even one chair.
This is another one of those battles I cannot win. More chairs are not the answer. I got more chairs this year. I can't keep them in the department.