March 28, 2025

Patient Refused

I need to do a deep dive back through Mom’s hospital notes (In my spare time) to see how her patient refusals that I’ve heard so much about are documented. From the few I’ve taken a peek at, I am disappointed by how little detail is recorded about Mom’s stated reason for her refusal in many cases.

One stand out area of “self-limiting behavior,” as one Physical Therapist coined it at an intensive rehab Mom went to for therapy during our current 7 month journey, was declining PT during periods of abdominal discomfort or episodes of more intense abdominal pain. Mom also has terrible arthritis and now has bone on bone knees so walking around for her is excruciatingly painful. Medical professionals often agree that she is physically able to take more steps than she typically does, but as it is difficult to experience someone else’s pain directly, it’s just an area of significant difficulty that impacts her treatment. She is being treated for ongoing Adhesive Disease following a hernia repair and bowel blockage surgery. Along the way she has had a significant post-surgical infection during which she experienced so much pain that she could not tolerate food or liquids and they ended up putting her on TPN (total IV nutrition). We learned later that there was so much junk in the TPN that it caused her to gain weight at a time when her extra weight was a limiting factor as well.

Hospital Tip: No matter how uncomfortable your loved one feels, if they need PT and OT while inpatient I strongly advise them to participate when the PT and/or OT is in their room. Now PT and OT will not allow the patient to continue beyond what they truly can handle (for example if they become dizzy, they will have the patient sit down or if the patient’s BP is too high or too low for activity they are not going to push those limits). But you should know that not only are there far too few PTs and OTs (and I’m quite sure this is true for Speech Therapists and other specialties as well, but we do not yet have experience with a need for Speech support) working in regular inpatient hospitals to meet the need, but Also your loved one’s “refusals” are being counted and held against them.

What do I mean by that? Anytime your loved one is in need of some kind of aftercare for which the patient and family are not paying out of pocket (and probably even in cases of private pay the notes are being examined to determine appropriate level of care) the admissions staff at the skilled nursing centers, intensive rehabs, or home health agencies are thoroughly reading through your loved one’s chart. They are not just looking for diagnoses and needs that they may or may not be able to meet, but they are also noting what kind of patient your loved one has been. If they are repeatedly asking PT and OT to come back later when they feel better (pro tip: they don’t have time to come back as there is already not enough of them to go around so if they ever do do that for you, Wow, they are trying to go above and beyond for you with limited resources) they are not considered the ideal patient and are unlikely to be accepted at an intensive rehab (more on the differences between aftercare facilities in a future post). They are also reading all about how the patient cooperates or does not cooperate with taking medications and with complying with nurse recommendations and provider orders. Your loved one’s moods and rough days while going through health issues that have them in the hospital are part of the clinical picture of them that may or may not set them up for success when you are hoping to get them a bed at the nicer facilities with better care.

Early on when I was first learning about aftercare and how the facilities get a 1-5 star rating in PA from Medicare (It’s still not clear to me what all factors into that, but I think I just need more time for research), I called the only 5 star skilled nursing facility close enough to home that we hoped to have Mom go there for rehab. She had been rejected from this facility and at the time I did not know (and I think I really didn’t want to know) if that was because of her physical condition at the time or because Mom’s notes may reflect that she hadn’t been too keen on doing PT with abdominal pain (typically from ongoing partial bowel blockages) and her bone on bone knees. The facility had communicated back and forth with our hospital social worker and the social worker made me aware of the rejection. However, I thought that if this facility knew how dedicated we are as a family to bringing Mom home just as soon as she was just a little stronger and could get to know me by phone and see what a support system she has in her family and hear about all of the accommodations we have for her at home, they would surely reconsider admitting her. I was very wrong. Before I got much of a word in edgewise the admissions director snapped at me that Mom was reviewed by their whole team and she is rejected because she is at risk for readmission. No chance to explain who we are and what she has to come home to after a little support. I wonder if the hospital staff is considerate in the word picture they paint of the patient.

You may find your loved one rejected from multiple facilities and if other desirable ones who would normally accept your loved one do not have a bed or cannot accommodate something (such as a wound vac) that your loved one is currently managing with temporarily, you may find yourself choosing between home before your loved one is ready and a couple of 1 or 2 star facilities while the hospital is announcing that your loved one is medically stable for discharge and you’d better make that impossible decision right away. And if you don’t, your option is to appeal to Medicare or start paying the full hospital bills after noon the next day.

Key Takeaway for you: Talk about this with those you love. Demonstrating treatment compliance and noted refusals has proven very significant in opening and closing doors for Mom along the way. Think about how you will handle similar situations if you and your loved ones are faced with them.