November 29, 2021.
Pat has been receiving palliative care from a local agency for about a month. But I’ve been encouraged to engage that agency’s Hospice team because they could offer many services and, more importantly, hospice would concentrate upon maximizing Pat’s comfort. I was assured that it was not necessary for Pat to be facing imminent death for her to qualify for hospice.
Today Pat and I met with Alexandra, a hospice representative. She discussed the benefits we will receive from hospice, most immediately a Broda wheelchair. Hospice will also take over providing many medications and sanitary supplies and they will designate a care team including a nurse, social worker, spiritual counselor, and even a music therapist.
And then came the critical question: “Is Pat on DNR (Do Not Resuscitate) status?
What a sobering question! Pat and I had discussed this topic a couple years ago, when we made advanced directives, but it was only theory then. Now it is real. Alexandra suggested I meet with Jim, a hospice social worker, and I agreed. I dug out Pat’s advanced directive and showed it to him. The directive includes the following three passages:
- Pat agrees that I, as her agent, can make the decision to refuse or stop tube feedings and/or IV fluids.
- Pat does want to receive all treatments to keep her alive, unless her doctor determines those treatments would harm Pat more than they would help her.
- Pat does want CPR (cardiopulmonary resuscitation) unless a doctor determines she has a medical condition and no reasonable chance of survival with CPR or that CPR would harm Pat more than help her.
Jim told me that these terms were acceptable. Pat could join hospice without full DNR status. Also, I am free to temporarily remove Pat from hospice if we opt to treat a potentially fatal condition, and then we could rejoin hospice when that condition had been favorably resolved.
I tried to double check Pat’s directives with her, but Pat had trouble understanding them at this time; Pat told me she trusted me to make the decision for her.
As of now, Pat is on a limited form of DNR, as noted in #2 and #3 above. I think this is the best possible resolution, maximizing Pat’s comfort while maintaining some flexibility in the future.
Later, at lunch, Pat looked sad, and I felt sad. We quietly held hands, sharing our grief.
Pat’s comments: No additional comments from Pat on this chapter.