Browbeating

I started calling the hospital at 7:45 this morning. The only phone number I had was for the floor Dad is on, so I called there hoping to get someone who could either tell me Suzanne's last name (the SLP) or a number where she could be reached. At 7:45, the nurse didn't know her last name or number but promised to leave a message for her. At 9:00 I got Dad's day nurse who found out Suzanne's last name, so I was able to get a phone number from the main hospital line. His daytime nurse also left a message for her. Then I left a message at the inpatient ST office, then called the pager number given on the message from the office. That at least got me a call back from another SLP, who also said she would pass my message along to Suzanne (McClure, in case you ever need to call her!).

Finally, just after noon, Suzanne called me back. My first question (after clarifying that she was the main SLP who had been seeing Dad since his trache was put in) was if there was any compelling reason why Dad should not be getting swallowing therapy. She told me the same thing she has told others--Sinai is an acute care facility, not a rehab facility. I said that's the reason why she won't do the therapy, which wasn't what I was asking. I wanted to know if there was any medical reason why he shouldn't be getting this therapy, which I assume he would get if he were in a rehab facility with no questions asked. She said that it's not just swallowing therapy that he needs--he needs to regain his strength through better nutrition and physical therapy. She said she's been very frustrated with the situation and has watched Dad lose his strength in the two months since he got out of CICU. She agreed that if Dad had received the proper swallowing therapy two months ago when he was stronger, he would have long since been out of the hospital. Then she went on to say that she isn't supposed to provide therapy, she's only supposed to assess new patients and determine their therapy needs. I asked why, if that's the case, she has been seeing Dad for two months--he's hardly a new patient. She said it's because he keeps needing to be reassessed. I gather from this that she sees him, but doesn't actually do any therapy. I didn't point out what was obvious to me--if they had been doing the correct therapy, they wouldn't need to keep reassessing him! She said that their department is very understaffed, that she has 20 patients and their families who are just as frustrated as I am, and she can't give everyone the therapy they need. I told her I didn't care what her problems were, the only thing I cared about was that my father needed treatment that she wouldn't provide. She said that she's tried to get the doctors to agree to better therapy, but they wouldn't, and since she's only the ST, she can't get the nutritionist and physical therapists to do what they need to to get Dad better. She thinks it would be best if we could all meet to talk about what needs to be done. We tried to get this sort of meeting together six weeks ago, but the people who should be involved couldn't coordinate their schedules. She said she could meet any day after 10 a.m.

I asked her about the swallow test Dad passed; she said that test was just for thin liquids and that he had been taken off of these not because of swallowing problems but because of his digestion problems and that it was someone else who put in the NPO order (for nothing by mouth). I asked why, if that was the case, he wasn't allowed liquids even during the times when his digestion has settled. She said that wasn't her call, but the doctors'. I kept coming back to why he couldn't get the swallowing therapy now, since the GI tube is the cause of so many of his problems and the only hope, in my mind, is to get the tube out which we can't do until he's able to eat. She said I need to talk with her supervisor, Paula Leonard (she seemed unsure if Paula is her supervisor; she said there is a lot of transition in the department now) and would give Paula my number. She also said that if we wanted to hire a home health agency therapist to come in and provide this therapy to Dad, that would be fine (which makes me wonder if she is being entirely truthful that swallowing therapy wouldn't work without better bodily strength).

After my conversation with Suzanne, I started in on Dr. Morad, Dad's internist who has overseen his care since he got out of CICU. Mom warned me that she wasn't the best at returning calls, so I did the same thing I did for getting Suzanne--left one message, called an hour later and left another message telling her I was planning to call every hour so she may as well return my call. While waiting for a return call from her, I called Irene, the social worker/case manager and asked her to set up a meeting by the end of the week with Dr. Morad, Dr. Hiatt, Dr. Okolo, the speech therapist, physical therapist, and nutritionist. She said she'd get on it immediately. Dr. Morad then called back a half hour after I left my second message for her (as we keep telling Mom, you don't have to be particularly articulate and you don't have to be especially nice, you just have to be persistent and loud).

Dr. Morad and I spoke for about 20 minutes. She seemed genuinely frustrated and worried about Dad's situation, about how close we've been in the past to getting him into rehab and how various complications, mostly GI problems, keep getting in the way of his recovery. In the course of our conversation it came out that she didn't know that Dad's GI problems started with the tube surgery--that in CICU he had no problems at all with GI motility (which most of us call digestion) when he was being fed through a tube in his nose. She thought that his weakness and GI problems resulted from his heart surgery. I encouraged her to go back and look at his chart from when he was in CICU and told her that this is why we are being so adamant about getting him swallowing therapy and why I think we really need to work towards getting rid of the stomach tube. She also didn't know that swallowing therapy was an option--if she had known, she said she would have ordered it. She only knew of swallowing tests. She said that Suzanne's "not my job" line was no excuse--if there is therapy available that can help a patient, it needs to be given. I told her Suzanne said she had requested better therapy. Dr. Morad said that that was certainly untrue in her case, although Suzanne may have spoken with other doctors. We talked about Dad's complications; she thinks that at this point he will probably never be back to the strength and abilities he had prior to his heart attack. I said that we need to assume that complications are the norm with him and plan accordingly--certainly work towards getting him stable and healthy enough to go into rehab, but also do whatever rehab work we can right now because nothing is going to get better by ignoring it and waiting. She said she had been requesting physical therapy daily, and that she agrees that he needs this therapy to strengthen his muscles, get him moving, and hopefully improve his digestion in the process. I told her that the physical therapists almost never come by (Mom said they visit about once a week). She said she would make herself available at any time for a meeting of the whole care team.

About 10 minutes after we hung up, she called back to tell me that Irene had contacted her about a meeting and it looked like it would be tomorrow at 11 a.m. since Dr. Hiatt will be going out of town on Thursday. The only problem is that Dr. Okolo is in surgery all day. Irene then called me with the same information, but said that Dr. Okolo said he would stop by at his lunch break to meet with whoever is there. I'd rather not wait until everyone is free at the same time (although I told Irene I'd be perfectly happy to come in at 6 a.m. or have the meeting at midnight if that's what it took) so that's what we're going to do--two doctors, three therapists, a social worker, Amy, me, maybe Katie if she can get away, Mom, and Dad all in Dad's tiny room at 11 a.m. tomorrow.

So there it is for today. I was willing to then start in on the physical therapists, but Mom told me to just wait until the meeting tomorrow. Too bad--I was feeling kinda feisty by then.