August 9, 2010

I don't know any way to accurately convey the utter sadness, frustration, anger and meaninglessness of Sunday, August 8, 2010, except to give you a minute by minute, blow by blow description of what has happened to us.

7:30 a.m. - After a night of alternating chills and fevers from her hospital acquired MRSA infection, Linda told me she wants to give up and discontinue treatment. Her exact words were "I can't do this anymore."

7:35 a.m. - I ask the night shift nurse whose shift is now ending to get an attending physician to write the orders discontinuing Linda's treatment, as she has a right to do.

8:35 a.m. - Dr. Kubal shows up and tries to talk Linda out of discontinuing treatment. He refuses to write the orders discontinuing treatment, saying he is "not the attending" and lacks authority to write such orders.

8:40 a.m. - I ask the day shift nurse who took over Linda's care at 8 a.m. to get the attending doctor and a chaplain, who, according to the hospital's information packed handed to us on Linda's admission, is supposed to provide ethical support to patients and families. A chaplain arrives at 8:42 and Dr. Fridell arrives at 8: 45.

Dr. Fridell refuses to write the orders discontinuing Linda's treatment, saying that to do so is "above his pay grade.: When I asked him directly whether Dr. Tector was the only one with authority to write such orders, he refused to answer me and stalked out of the room. We got no support from the Chaplain whatsoever. Whenever I referred to our need for "ethical" support he kept substituting the word "spiritual" for "ethical." When I pointed out to him that he was deliberately misinterpreting what I was asking for, three times in a row, he walked out.

8:52 a.m. - The charge nurse called Dr. Tector. After announcing that, everyone left the room, leaving me and Linda alone without any word as to when Dr. Tector was expected on the unit, or why some other Dr. from the Hospice service could not write the orders discontinuing Linda's care.

8:55 a.m. - I ask Linda's nurse to have the patient advocate come to the room and speak with us. While the nurse was in the room Linda has a bowel movement with diarrhea, and the nurse called for the lift team to help clean her up, and did her beginning of shift assessment. When she finished the assessment she left Linda lying in her own excrement, pending arrival of the lift team, and she sat down in the chair next to me and asked me if I had ever asked God to reveal himself to me, and told me Jesus doesn't want Linda to die.

9:20 a.m. - Linda's sister Debbie arrives. When I relate a summary of the foregoing to her she asks Linda if she wants to die, and turns to me and says "I don't feel I got a clear answer from Linda."

9:53 a.m. - The infectious disease doctor comes in to examine and asses Linda, including her newly observed swollen left hand and forearm, which is exquisitely tender and hot to the touch over the back of her left hand. When I ask her about Linda's request to discontinue treatment, she tells me that "this is not the setting to discontinue treatment" and says Linda's request amounts to assisted suicide. She announces "apparently you don't need my services any longer." and leaves the room.

One by one Linda's doctors are abandoning her rather than carrying out her wishes to discontinue treatment. The nurses and respiratory therapists feel their licensure is threatened if they discontinue treatment without a doctor's written order to do so, and they continue as before.

10:09 a.m. - After an hour and 15 minutes lying on the hospital bed in the pool of her diarrhea, the lift team finally arrives in the scene to help the nurse clean Linda up and change her bed linens.

10:13 a.m. - Before she can bathe Linda, the nurse is called away to attend to another patient.

10:19 a.m. - The nurse returns to begin cleaning Linda up after an hour and 24 minutes, apologizing for the delay due to "a call from the lab on something else." Linda grimaces in pain as the nurse washes the feces Linda has been lying in for an hour and 24 minutes off her behind.

10:27 a.m. - As the nurse and the lift team are finishing the elaborate ritual of rolling Linda from one side to the other as they slide the clean linens beneath her, Linda defecates again. The nurse asks Linda if she wants to be changed again right away, Linda says no. The lift team leaves the room as Linda grimaces in pain while the nurse changes her into a clean gown but leaves her once again lying in a puddle of her own excrement.

10:45 a.m. - The patient advocate phones into the room responding to the page from the nursing staff. She announces that they don’t work on weekends, and says she will call the associate administrator to respond. I told the patient advocate to alert the administrator that the issue was doctors refusing to write orders carrying out Linda's express desire to discontinue treatment. The nurse overhearing my end of the conversation acknowledged that my statements to the patient advocate were "very clear."

10:53 a.m. - A new medication for Linda - intravenous iron - is brought into the room. I asked the nurse the purpose of this new treatment. She says it was prescribed Saturday by Dr. Kubal. She doesn't know why. She calls him to find out, and can't tell whether any was given to Linda yesterday.

11:03 a.m. - Linda spontaneously tells her sister Debbie "I can't do this anymore." Debbie asks Linda if she understands that discontinuing her treatment will result in her death. Linda answers "yes," and Debbie responds "ok."

11:27 a.m. - Dr. Kubal phones in to say it will be OK to hold the IV iron.

12:06 p.m. - Dr. Tector arrives. He insists on speaking with Linda with me out of the room to see if she really wants to discontinue treatment. I refuse to leave, telling him I'm not going to put Linda in a situation where Dr. Tector is the only witness to his conversation with her, as she can't talk and I don't trust him to tell the truth about what her responses were. After a lengthy discussion during which Dr. Tector refuses to write orders discontinuing Linda's treatment, I suggest I will let him talk to her alone if he agrees to videotape the entire conversation in a manner so that her face and lips are on camera at all times. I said I would arrange the details if he would get the name of a courtroom videographer from his lawyer for me.

12:25 p.m. Tector announces that he has to go down to the OR to perform a transplant surgery, and we will have to wait for an answer to the videotape suggestion until he finishes the surgery and gets in touch with his lawyer.

12:53 a.m. the lift team finally returns to the room to help in cleaning up Linda's second bowel movement which happened two hours and 26 minutes earlier. I take a photograph of Linda's grimace as they roll her to the right to clean off her rear end and change out only the chux pad on her bed.

3:30 p.m. - Finally the assistant administrator shows up in response to my request made at 10:45 a.m. - 4 hours and 45 minutes ago. I ask him to prepare whatever Linda would have to sign to leave the hospital against medical advice. He agrees to get the paperwork ready. He readily acknowledges that my suggested compromise of videotaping Dr. Tector's proposed one on one conversation with Linda is a good compromise. Dr. Tector is still in surgery.

3:54 p.m. - I telephone Kindred Northlake and RML Specialty Hospital, the two vent weaning LCTAH facilities Tector and Fridell want to send Linda to in order to get her breathing on her own, to whether her hospital acquired MRSA infection will stand in the way of her admission there. RML says it will not, Kindred can't give me an answer on a weekend day.

4:15 p.m. Dr. Tector returns from the surgery. He and I leave Linda's room to go into a conference room, at his request, to discuss the videotaping proposal. At 5:05 p.m. Tector agrees it is a workable solution for both of us, and says he will have his lawyer set it up for tomorrow.

6:30 p.m. - The assistant administrator finally shows up with the blank papers for discharging Linda against medical advice. Of course, their form includes a release of all claims.

10:05 p.m. - One of the respiratory therapists who has cared for Linda over the last month or so stops by the room to look in on her. Linda tells the therapist that Dr. Tector won't honor Linda's desire to discontinue treatment. The therapist steps out to the nursing staff computer to file an incident report over the issue. After she leaves I explain the proposed videotaping to Linda, who responds emphatically: "Do it!"

Tomorrow evening I should be able to report to all of you on both Linda's videotaping with Dr. Tector and mine with NBC News anchor Anne Marie Tiernon.