So Abby and I met with the palliative care team (two doctors, one social worker, and a minister) at 3p Wed. Josh, who did not want to participate in the discussion, agreed to look after Sophie and Olivia in the waiting room.
At the meeting, the doctors told us that palliative/hospice care meant no feeding tube and no dialysis. They did not believe any nephrologists would sign off on Bill getting in-home dialysis because of dangers associated with doing so. So the only option is to commute to dialysis facility in the community. And the logistics/health risks to Bill would be enormous in this scenario: I live on a second floor. Bill is completely immobile, and often in pain. To move him out of bed into a gurney, gather up all his tubes, carry him down a narrow set of stairs, and unload him in some kind of special chair or bed in the van for the ride will take two men, physically strong and medically trained. To do this on both ends of the trip, several times a week seemed untenable.
It dawned on me that having Bill at home, as long as he receives dialysis, would be too hard for us and too risky for his health. But neither Abby nor I are prepared to discontinue his dialysis, which, the doctors predicted would hasten his death. They predicted that it would be a matter of, at the most, a week or two or three before Bill would slip into unconsciousness and then to death.
We told doctors what we are prepared to do was to not resuscitate him if his heart or lungs stopped working again.
The palliative team thought this was an important decision and produced a pink medical instruction sheet summarizing our desires. The attending signed off on the form and pushed it towards Abby and I for our signature. I could not sign the form right there and then. What if we are making a wrong decision for Bill? We needed to sleep on it at least for one night. To their credit, the team assured us that we could take time to make the decision. They were not ready to discharge Bill from the hospital any time soon anyway, as they felt his condition was still too unstable.
After the hour long meeting, Abby and I concluded that we needed to talk to Bill again about what he wanted to do. But Bill was too wiped out to hold this conversation after a three hour dialysis session so we decided to try again on Thursday.
Around 5p, Andrea Chung, a student of Bill's from a decade ago, came. She flew in from Hong Kong to visit Bill. I love Andrea; I remember that she made a donation honoring Bill when she was at Harvard Business School following graduation from Pomona. She was also a wonderful hostess when Bill and I visited her in Hong Kong in 2004 on our way to adopt Sophie in mainland China.
My sister Sunny also came by. She was eager to find out how our meeting with the doctors went and was happy to hear that Bill was not leaving the hospital anytime soon. While Andrea, Sophie, Olivia and I went out to dinner to a local Thai restaurant called Ocha (this has become our favorite hang out place since Eileen and Lee had taken us there when Betsy was visiting), my sister took my mother to dinner at Ikea (their favorite restaurant). Abby and Josh remained behind to keep Bill company.
I arrived at the hospital in late Thursday afternoon. Abby and Josh were already there. Bill was alert. I thought it was a perfect time to bring up the pink form. Amazingly what Abby and I told the doctors the day before was what Bill exactly wanted: Very clearly he told us he did not want CPR if his heart flatlined again. But he definitely wanted dialysis and tube feeding.
We asked him about his quality of life at the hospital. Remarkably he said he was not unhappy. He also denied feeling miserable. He was not bored. He felt ok about being in the hospital. Both Abby and I felt relieved to hear this.
While the nurse attended to Bill, Abby and I signed off on the pink form.