What about the surgery?  I wondered.  If David was eligible for hospice, surely we should cancel that.  I sent queries through the clinic portal to the urologist, the neurologist, the palliative care doctor.  They sent their questions through the portal to me.  I put those questions into an email message and sent it to the care manager at the nursing home.  Had this changed? Had that?  He emailed back: no, no.  I sent the answers through the portal to the three doctors.  By Thursday, everyone agreed that it was best to cancel the scheduled surgery and to put further decisions on hold.

On Friday, the hospice nurse called.  I spoke with her until it was time to walk down the hall to teach my last class of the semester.  She said she could start the admission process after the call; she was confident that David would be approved.  I wanted Fiona to be part of that decision, so I asked for the weekend.  We scheduled a meeting at the nursing home on Monday.                 

On the phone that evening, Fiona and I said the same things over and over.  We typed on our laptops as we talked, trying to figure out what we should be asking and trying to learn what we could.  Neither of us knew what to make of the sudden 17-pound weight loss; both of us feared that David would dwindle to bone in a matter of weeks.  The palliative care doctor and the nursing home doctor had recommended supplements along with meals, but everything we read told us that stabilizing weight reassures the family but doesn’t necessarily have clinical benefit.  We learned the word “cachexia” – the wasting away of muscle.  We weren’t shocked that it was time to consider hospice – more than four years had passed since the diagnosis – yet we were both in shock, each the other’s metallic emergency blanket.

We agreed that hospice services would be valuable whatever came next.  The hospice nurse would visit once or twice a week, the CNA more frequently.  A social worker, a music therapist, and a pastor would visit at two-week intervals.  The hospice team members would call me after each visit, and the nurse would call Fiona when she thought David was nearing death and Fiona should fly to Minnesota. 

At the Monday meeting, the social worker and I passed documents back and forth.  She gave me forms to sign, and I handed over the papers from the orange emergency file: advance directive, list of current medications, insurance information, next-of-kin contact information.  We had read that hospice can require stopping some medications, but the nurse said that David could continue taking everything on the list.  “I’m going to order comfort meds,” she said, “because pain never strikes when the pharmacy is open.”

I could see David more often now that classes had ended, and he seemed much the same.  He was sleepier, Fiona and I agreed, and he was having more trouble finding language.  Did the hospice nurse see other evidence of decline that I was missing?  Her reports varied little: his vital signs were good; his weight had stabilized.  The pastor, the social worker, and the music therapist reported that he seemed to enjoy their visits, and he let them know when the visits were over.  Being away from his desk made him anxious.  Settled there, he could monitor the goings-on around the nurse’s station and observe the activities in the dayroom.  He could rest.