Christmas 2014 was a bittersweet celebration for us. We knew Priscilla would be going into hospice first thing in the new year, with an estimated life expectancy of three months. (That is, if she didn’t die suddenly in the night, which could happen at any time.)
We listened once again to the King’s College Service of Lessons and Carols on Christmas Eve, this time in its full musical glory on our sound system, instead of on the emergency radio we’d used the year before during the power outage. The next morning I surprised Priscilla by using our special Christmas dishes for breakfast. I’d secretly pulled them out of storage. She was moved to tears because she’d been wishing for some nice holiday touch like that, but she hadn’t wanted to ask me to do any extra work. A neighbor brought us a lamb dinner for that evening and some other friends brought us cinnamon rolls for the next morning.
As a Christmas present, Priscilla gave me a book about the St. Albans Psalter, a beautiful illuminated biblical manuscript from the Middle Ages. We had several opportunities in the following days to sit together in the living room, winter sunlight streaming through the windows, and read aloud through the book, pausing to admire and discuss the many illustrations. These were timeless moments.
Priscilla said grateful goodbyes to her home health care nurse and aide during the last week of December. They’d been with her for nearly a year and she’d become close to both of them, particularly since they shared her Christian faith and hope and cared for her in light of it. For example, Priscilla once mentioned to the nurse how much she was looking forward to “going home” soon. She responded, “When a patient says something like that, we’re supposed to note in their file that they’re suicidal, and ask the doctor to prescribe anti-depressants. But I can tell you’re not depressed, you’re joyful!” (No notation was made in the file.)
On Monday, January 5, 2015, Priscilla entered a home hospice program. Three weeks later, she withdrew and returned to regular home care.
Why? It simply wasn’t time yet, and that became apparent right away. The hospice culture, quite understandably, was geared towards patients who were near death, and who were therefore typically unresponsive or even unconscious. Priscilla, by contrast, was still willing and able to take an active part in decisions about her own care. And so there was a mismatch between the culture and her capabilities.
Hospice caregivers would look at me and ask, “Do you think she would like such-and-such?” I’d turn to Priscilla and say, “What do you think, would you like that?” Then she’d answer the person herself.
At one point a caregiver, after asking Priscilla various check-up questions, went silent for quite some time, clacking away at her computer keyboard. Finally Priscilla inquired, “Is there something else you need to ask me?” “Oh, I’m done with you,” came the reply, “I’m just ‘charting’ now.” (Filling out Priscilla’s medical chart.)
This would have been perfectly reasonable with an unresponsive or unconscious patient. But we had things we needed to get done pretty much every minute of the day, and we couldn’t afford to wait around while somebody charted. Nor did we want to leave a visitor in one room while we attended to responsibilities in another. We had to explain our situation to several different hospice staff to get them to chart somewhere else (back at the office, or in their cars) once they finished their actual work with Priscilla.
It didn’t take long for the mismatch to become uncomfortable. When we explained the situation to Priscilla’s medical team, they understood and agreed that she should return to home care until her condition became much more limiting. And so, in the last week of January, Priscilla happily welcomed back her home care nurse and aide, both of whose schedules permitted them to add her as a patient once again.
One good thing did come from her brief stay in home hospice. The agency sent over a physical therapist to do an evaluation, and he quickly determined that her shoulder, elbow, wrist, and finger joints were at risk of painfully locking up, as her lower-body joints had been earlier, because she wasn’t using them much any more. We needed to add upper-body range-of-motion exercises to her repertoire, and these helped her remain flexible and pain-free the rest of the way.
As the physical therapist was teaching me these exercises, he kept saying, “I feel as if I know you from somewhere.” He asked a few questions about us, and when he learned that I’d been the pastor of a church in town, he exclaimed, “That’s it!” He and his family had attended the same church under my predecessor, and while they’d moved to a different one before my time, they’d always come back for Christmas Eve. He’d heard me preach on that occasion several times. When he explained this, I recognized him as well, from the greetings we’d exchanged after those services.
Priscilla’s medical team planned to revisit in March the question of what program would be best for her. Meanwhile, they’d work on making resources to address “air panic” available for quick deployment if they were ever needed. Her home care nurse discovered that her doctor could actually write her a prescription for liquid morphine under justifying circumstances, so that became our contingency plan.
In early March, Priscilla’s nurse practitioner told her, “I think you’ve got more than three weeks left, though I’m not sure you’ve got twelve.” (In other words, she might make it into June.) Nevertheless, her supervisor already wanted someone else to assume her role, because she wasn’t yet hospice-certified, and “end of life” issues were sure to arise soon.
Priscilla didn’t want to lose this nurse practitioner. The home care nurse had found her when looking for someone who could write medical orders who would be able to visit regularly in person. We all agreed that she was exceptionally skillful and perceptive, and she’d become a friend to Priscilla as well.
As a temporary compromise, Priscilla agreed to go into a local hospital’s pre-hospice program, which would add a hospice-certified doctor and nurse to her medical team without causing her to lose any of its other members. But when the program’s intake nurse interviewed her, she said, “Actually, we wouldn’t put you in pre-hospice. You’re the kind of patient we’d put right into hospice itself.” So that plan didn’t work.
Finally the nurse practitioner’s supervisor came with her to see Priscilla. She recognized that she had a great team of capable people working with her and that she had a good relationship with all of them. The supervisor agreed that Priscilla would be well served by keeping each of these team members in place for as long as possible. Since her condition seemed stable, the question of the “best program” was put off again, to the beginning of June.
When that month arrived, we let sleeping dogs lie, nobody else pursued the question, and the issue of hospice slipped quietly off the agenda.