I write this tonight as my mother is sleeping fitfully in her room, a few steps down the hall. I'll just be dozing tonight as I'll have to be getting up to check on her every few hours. I brought her home from the hospital about four hours ago. As I start this essay, I have no idea where it's going to end up. I just have things on my mind and I want to get them out of my head and onto this screen; a nice little Christmas Eve exorcism, if you will. The past few days have been, for me, like a trip through the looking glass into a place that I simply cannot wrap my head around; an example -- just one example, I assume of many thousands or even millions of examples -- of just how badly broken the health care system is in this country. And this is probably one of the more mild examples, because at least in this one, nobody died...
Every word you will read here is true. There are no fabrications. There aren't even any exaggerations. There don't need to be.
My mother went into the hospital on Wednesday the 22nd for a "simple" surgical procedure: insertion of a feeding tube into her stomach. Why does she need one? Well, she's in advanced stages of an aggressive form of ALS (Lou Gehrig's Disease), and her ability to chew and swallow (as well as to speak) are all severely compromised by this disease. She's also more or less confined to a wheelchair. I've been living with her and taking care of her for almost seven months. When I moved in, early last June, she could still walk with a cane, she could still talk, she could still eat. Her decline has been rapid.
She was, at the time she was diagnosed (just about a year ago) on a Medicare Advantage HMO plan through AARP. She'd been on this plan ever since she became Medicare-eligible, and until she got this diagnosis, the plan worked fine for her. But the hospitals and doctors in this particular HMO don't know squat about ALS.
That's okay, at least in theory - there's another healthcare system in town that does. They have an ALS Treatment Center and a team of doctors, nurses and therapists who all specialize in this disease. The problem is, of course, that the other healthcare system isn't part of this HMO. And the position taken by the HMO from the moment she was diagnosed was "We can't do anything for you, but by God we're not going to let anyone else do anything for you, either." I spent four months filing appeal after appeal, right up the food chain to TPTB at CMS, before we got a decision allowing her to be treated at this ALS Clinic. Four months during which, btw, her condition deteriorated considerably. We're stuck with this HMO until this coming January 1, because her dx was so late last year that there was no time to research and enroll her for another plan.
Her last visit to the ALS clinic was just before Thanksgiving. "It's time for a feeding tube" - that's what the docs decided. So we strategized - do we try to get a referral approved to have the tube placed by the ALS docs, which would require another 2 to 4 months of fighting the insurance, or do we just let her current non-ALS-specialist providers do the procedure? We opted for the latter, and her primary ALS doc wrote a letter to her PCP (Primary Care Provider - through whom all referrals for any kind of care must go) with detailed recommendations for her care, to wit: 'Admit her to the hospital for overnight observation following the procedure, keep her on a Bi-Pap breathing machine while she's hospitalized, etc. Oh, and call me day or night if anything comes up so that I can provide you with assistance.' Her ALS doc is a really good guy as are all of the folks who work with this ALS clinic.
So, they start the paperwork. The ALS doc sends a request to the PCP in the other network for a referral for the feeding tube. That's sent right after Thanksgiving. The referral gets approved by her PCP sometime in the second week of December; the folks in the "Interventional Radiology" department, who will be doing the procedure, call that week and tell me that the procedure's scheduled for 1 p.m. on December 22, and for us to be there at 10 a.m. Okay. Cool. (I mention this timeline because it comes into play later in this story).
The morning of the 21st, a nursing coordinator from the hospital calls to go over some pre-procedure stuff. During the course of the conversation she asks me if my mom's pre-admission has been taken care of. I tell her I don't know - no one has said anything to me about pre-admission. She tells me to call the PCP's office and ask them to make sure it's taken care of. Sure, I say. So I call them. No, they tell me, they haven't taken care of her pre-admission because this particular PCP "doesn't admit patients to the hospital". Talk to the doctor who's doing the actual procedure, they say. It's up to him to admit her. So I call the other doc's office back and relay the substance of the conversation I just had. "No," they say. Her PCP has to admit her, we are an outpatient department and we don't admit patients. She's having a simple outpatient procedure."
I tell them that I realize it's a simple outpatient procedure but they are perfoming this simple outpatient procedure on an 80 year old woman who has advanced ALS and who cannot talk, swallow, walk, or even breathe without assistance. I tell them that I appreciate the simplicity of their procedure but I cannot understand why they would not take the severely compromised condition of the patient into consideration. They tell me that they appreciate my point but that they simply do not admit patients. It's not the protocol. They tell me that I must try again to get her PCP to admit her.
So I do. And he won't. "The doctor does not admit patients", his assistant says. "The surgeon who does the procedure has to do it." Period. I call the woman who is, supposedly, my mother's advocate in this health system; I tell her the whole story, and I ask her to intervene. No, she says, she can't do that. It's up to the doctors and there is nothing she can do.
By this time it's late in the day and people have stopped answering their phones. I give up and go ahead and pack an overnight bag anyway. I know as well as I know my own name that she is not going to be in any condition to be sent home after this procedure is done, and I decide that if I have to, I'll take her out of the hospital and wheel her to the Urgent Care Center that's right next door and get her admitted that way. Oh, did I mention that I'm way past furious at this point? I am.
So Wednesday morning rolls around. I get Mom up, bathed and dressed and get her into her power wheelchair. Our part-time helper/caregiver arrives; she's going to go to the hospital with us, mostly for moral support. Our transport arrives - the local ALS Assocation is giving us the use of a wheelchair-accessible van and driver to take Mom to the hospital. It's raining heavily as we put her into the van and head out -- Mom, the driver and our helper in the van, me following in my car. We get to the hospital at the appointed time and are sent to the surgical admitting desk to fill out forms and sign stuff. The nurse at the desk looks at my mom, looks at the paperwork and asks if she's being admitted to the hospital. As she asks the question, my cell phone rings. I answer, giving the nurse the 'just a second' signal. The call is from the surgeon's office, the one who's going to be doing the feeding tube in just a couple of hours. They are calling me to remind me that they are NOT admitting my mother to the hospital and they just want to make sure I'm very clear about that. I say yes, I'm very clear about that, and repeat what I've just been told to the surgical admitting nurse on the other side of the counter where I am standing. Her jaw drops. "Unacceptable", she says. "I agree," I reply. She tells us to wait in the waiting area while she goes to talk to her supervisor. The supervisor comes and talks to me and I tell her the whole story. She leaves; twenty minutes later she comes back with her supervisor, and I repeat the story again.
We end up waiting for seven - count 'em! - hours. The procedure was scheduled for 1 pm - and they finally took her in to do it at 4:45 p.m. In the interim, a series of nurses, nursing supervisors, and case workers come to talk to me. To each one I say the same thing: I want my mother admitted overnight because I know that she won't be in any condition to be sent home after the procedure is done. I'm not mean, I'm not nasty, but I'm pretty damn firm and insistent about it. And every time someone says "I can't do anything to help you," I say "Then please refer me to someone who can."
Finally, the person who shows up to talk to me is the surgeon himself. He's polite and civil, but he makes it clear that he's pretty pissed off - at whom, I'm not sure, but then again, I'm way past caring about that by now. He refers to "this admission controversy" and asks why we didn't get this procedure done at the other hospital, the one that wrote the letter with all of those recommendations? "Because her insurance will not allow us to," I tell him. He hems and haws and makes a few other comments about how inappropriate all of this is, just so that we're all crystal clear that he's pissed off. I am unrepentant and refuse to back down. My mother is starting to get upset (with me, naturally - God forbid she direct her anger where it deserves to go). The surgeon finally says, "Okay, I'll figure out a way to have your mother admitted. I don't do admissions but I'll have my assistant find someone who will. I don't understand why your mother's PCP didn't take care of this." "I don't understand either," I reply. "But he flatly refused to do it." So the surgeon turns to my mother who is sitting right there in her wheelchair, and starts asking her some questions ("What day is it today?") She answers them as best she can -- she has a great deal of difficulty speaking -- and he says to her "Well, you're pretty alert and with it for someone with Alzheimer's."
My jaw drops.
"Dr. ________, my mother doesn't have Alzheimers. She has ALS." He looks at me blankly. "ALS. Amyotrophic Lateral Sclerosis." Blank look. "Lou Gehrig's Disease." Ah, okay, now the lightbulb goes off. "Oh, I read her chart wrong, sorry about that," he says. I'm so flabbergasted that I am literally speechless. I actually have to sit down for a moment, as I look at him with my jaw hanging open. I spend the next thirty seconds seriously wondering if I should grab my mother and run like hell. But she says no, she wants to get this over with, so with seriously grave misgivings, I let them take her for the procedure.
(Have I mentioned yet that we are in a hospital that claims to be not just the top hospital in this county but also one of the top hospitals in the United States?)
Fast forward about 45 minutes. By now it's 5:30 p.m. and I'm looking for a spot with a cell signal, where I can call the driver to tell him that my mom is not going home tonight (he's been waiting all day to find out when he should come and get us, and I've been unable to tell him.) As I come back to the waiting area the surgeon is just coming out - he tells me that the procedure went well and that my mom is in recovery.
Our helper and I go in to find her disoriented and heaving; the procedure went well, but she's absolutely miserable. The anesthesia they used has made her violently nauseous. She has a suction tube in her mouth (one of the worst things that can happen with an ALS patient is aspiration of food, fluid or vomit -- just one of several reasons I was so adamant that she needed to be admitted for at least one night following this procedure.) So we stand there and take turns alternately holding the suction tube and her breathing mask while the nurse goes to arrange for her room. The nurse says to me "Well, given how she's doing, we would have admitted her anyway," -- to which I reply, "You know, you could have just said that to me two days ago and saved everyone a lot of aggravation instead of insisting that you were not going to admit her under any circumstances." The nurse shrugs and says she can't understand why anyone would have told me that. I say that at it wasn't just a single person; by that point least a dozen different people from at least four different departments of the hospital had told me that.
At about 6:30, they take her, on a gurney, up to her room. The trip only intensifies her nausea. Our helper has to leave by now, because she has a second job she has to get to, so I am forced to leave long enough to take her to pick up her car. I return to the hospital an hour later, in time to meet the doctor who actually admitted her. Apparently this system has what they call "hospitalists" - doctors whose job it is, among other things, to admit patients that nobody else will admit. Or something. Anyway, he seems like a nice guy. He's giving orders to a nurse and a respiratory therapist, who are both busy with my mom. Mom is still heaving and is still looking completely miserable. The doctor asks me a few questions, we discuss her situation for a few minutes, and then he leaves. The nurses come in and out frequently, and after about an hour, as I sit semi-dozing in the chair next to her bed, her nurse comes in and says that he's decided to move her to a room closer to the nurse's station since she's having to be monitored so closely. I appreciate the sentiment, but moving her just ramps the nausea up another notch, so it's a mixed bag. Finally, they give her a dose of anti-nausea medicine and she seems to calm down a bit. I stay till late, and finally leave to go home and sleep.
The next morning I arrive to find her still nauseous. There has been a shift change so I go through the whole explanation of her condition with the new nurse ("No, she can't speak. No, she can't lie in bed without her breathing mask on. No, she can't roll over on her side without assistance. No, she can't walk to the bathroom." Etc.) I sit with her all day. The "hospitalist" doctor comes in a couple of times. I ask him every time I see him if she's going to stay another night, and I tell him that I absolutely do not think she's in any shape to go home. He is nice but noncommittal until the early evening, at which point he finally agrees that it's not a good idea to send her home yet.
I tell him that I now have a new problem; the van and driver that was on standby to take her home won't be available the next day (Christmas Eve), so alternative transport has to be arranged. He says he'll get a case manager on it, and he leaves. A while later, a woman comes in and introduces herself as the case manager and says she has questions about this 'tranport' issue, so I explain to her that the ride we'd arranged was no longer available because of the holiday. To which she replies... "Well, you probably shouldn't have scheduled this procedure so close to the holiday because it's not going to be easy for me to find someone to take her home this close to Christmas."
Really, lady? Really? You want to go there with me?
I finally, totally lose it. I tell her that A) I am deeply sorry that I wasn't better able to manage the progression of my mother's fatal disease so as to avoid major holidays, and B) I hadn't been the one to schedule the date of the procedure to begin with, I was given a date by the hospital. I'm quite sure I have steam coming from my ears. She turns a deep red and says that 'she hadn't meant it that way, of course', to which I reply that I was sure she hadn't. So then she leaves, only to return about an hour later to say that so far she's only been able to line up an ambulance to take my mom home the following day. I point to the hulking wheelchair sitting right next to her and say "What about that?" "Well, can't you take that home yourself?" she asks. "Um, no, I can't," I say. "I drive a Corolla that probably doesn't weigh much more than that chair does." "Well, we may have to store that here for you until you can arrange to have it picked up," she says. "Well, that presents a bit of a problem," I say, "because we don't have a spare one at the house for her to use. We just have the one chair. I'm sorry, but you have to figure out a way to get it back to our house tomorrow."
So she goes off again to try to figure out what to do, and I go home to try to get some sleep.
So, when I get back to the hospital again this morning, finally, pretty much everything and everyone seems to be not fucking up for a change. Mom is finally getting over the nausea. She's getting her first feeding via the tube and that's not fucking up. Transport has been arranged. A home nursing visit was arranged, and the nurse in fact just left here after a two hour session that was about equal parts teaching me how to operate and maintain my mom's new feeding tube pump and care for her incision, and filling out and signing paperwork. (I lost count after the tenth signature).
So now it's 8:00 on Christmas Eve. I should be feeling festive, or.... I dunno, prayerful, or something. But all I feel is utterly overwhelmed and completely exhausted.
And that, boys and girls, is just one example of how health care "works" in America, this Christmas Eve 2010. Santa has just one thing to say to all of the good little boys and girls out there tonight:
Don't get sick.
Merry Christmas to all, and to all a good night.