On Thursday morning, Dr. Pamela Horst, director of Palliative Care, comes to see me. She only has four beds, all occupied, and cannot transfer me. She says it’s not an appropriate placement; I say that it’s less inappropriate than 3-6; she agrees. In fact, she can’t do anything for me, but she gets it: it’s about COMMUNITY. I am desperate for human contact. I have been lying at home in bed forever, too sick to go out and nobody comes in (except an aide three times a week). What does it mean to be human if not to have contact with others of your own kind?
Dr. Horst leaves around 11:00 a.m. after telling me that there will be a meeting Friday morning at 8:00 a.m., including—at least—Dr. Tucker, Dr. Levine and someone from her staff.
“My team” consists of Levine; Amy as discharge planner; Kyle as social worker; Sarah as primary nurse; a different charge nurse each shift, and a different staff person (bedside nurse) each shift. At noon, they send in the youngest, newest member of the team (Victoria, who is 20 and still lives with her parents) to tell me that I am being discharged immediately. I call for the charge nurse, Traci, who adds that Levine is ordering Security to take me out at 2:00 p.m.
All is insanity. I need to be in a skilled nursing bed but I am being put out on the street. I am terrified, horrified, panic-stricken. There is no discharge plan. Victoria has brought the discharge medication sheet—I take no medications—initialed by Levine, and the Notice of Discharge Appeal. I call IPRO (Island Peer Review Organization). At 1:55 p.m., IPRO puts a hold on my discharge. Has Levine completely taken leave of his senses? Is he borderline psychotic?
Amy tells me that IPRO is supposed to fill out my discharge plan. IPRO says of course not, the hospital is supposed to. The NYS Patients’ Bill of Rights says that “The hospital must provide you with a written discharge plan.” At 3:00 p.m. they bring me the Discharge Plan: it is virtually blank. Nothing filled in on diet, activities or any other thing. Roger Levine’s name is absent from “attending physician”; they have filled in James Tucker as attending and left primary care blank. “Primary diagnosis” has been crossed out and filled in with the name of my home care agency. Catheter care, respiratory care, palliative care, medical equipment and everything else has been left blank. They have no idea who I am or what it has taken to sustain me up to this point. No social work interview has been done. The discharge plan is unsigned.
My medical records are faxed to IPRO on Thursday. They will review them on Friday and notify me of the decision on Saturday. Meanwhile, in bizarro-land, there will be a discharge planning meeting on Friday, the day after Levine tried to discharge me. I ask to attend and am told no. Steve Wechsler asks to attend and is told no.
The meeting takes place and is attended by 15-25 doctors, directors and vice presidents. Steve is inadvertently ushered into the room and thinks it is a staff meeting. Dr. Tucker assures him it is only an Anne Woodlen meeting. I’m pretty sure it includes, at least, Tucker, Edwards, Levine, Horst, Gilbert and Sulik. And maybe a bunch of complete strangers who’ve never met me. They discuss the fact that I went AMA out of two previous nursing homes. Nobody asks why. The first time I had been given a homeopathic remedy and was doing so well that the staff kept telling me I didn’t need to be there; I agreed. The second time the nursing home was dangerously substandard. They jammed my catheter bag into the bed springs so that I couldn’t get out; I was virtually tied to the bed. When I rang my call bell, they didn’t answer for 41 minutes. My roommate’s daughter, a nurse, had already filed a DOH complaint. None of this was entered into St. Joe’s meeting in defense of my actions.
At 10:00 a.m., there is a meeting with Dr. Tucker, Levine, Amy, Judy, Steve and me. Tucker says that all 28 nursing homes in the county have been surveyed and not one will take me. This is variously attributed to nursing homes being prima donnas who pick and choose; me having gone out AMA twice; me having a bad reputation. Nobody wants me. They grind it in. They have not, for example, queried my apartment building manager, who thinks I’m fantastic.
I have been an activist for more than a decade. I cannot believe that nursing homes can reject a patient without just cause. They are receiving Medicare and Medicaid funds; they exist under state and federal rules. Get me a phone and my computer and I can deal with this. I will do the research. I will use my contacts, including the top guy at Medicaid in NYS, and an attorney at the U.S. Dept. of Justice. I know how to do this. Get me a phone and computer and I can crack this impasse.
Levine kinda-sorta agrees that I can have a phone and computer. Steve, who is optimistic and naïve, is excited. I alone know that Levine is a fucking liar. I keep pushing him on the phone calls. What he finally says is that I will be allowed to make phone calls only with each one being individually approved by his staff.
We move on to the computer. Levine says I can have the computer, according to policy. Again, I push him to declare himself in front of Steve and Dr. Tucker. I know what policy is. Finally I state it: policy is that only students doing homework can have computers for one hour; in other words, Levine is telling Steve and Tucker that I can have a computer when what he means is that I can’t have a computer. I ask Levine if this is the policy he intends to enforce. He says yes.
I report that he was going to have me taken out by Security on Thursday. Levine loudly yells that is not true, not true, and he doesn’t know why the staff is making up things, then says he doesn’t have to listen to this and gets up and walks out. Later, I ask Traci, the charge nurse, and she confirms that Levine told her Security would be called.