Two years ago today my mother died at home with me embracing her. I recently learned that as recently as a generation ago, midwives in England helped people die at home. Although I am not a midwife, the experience of being with my mother as she died was similar to those I’ve had in helping mothers birth their children. That part of it was powerful and even beautiful, but the health care system part failed all of us. My mother was in a hospice program at the time: a hospice program that was abysmal. My father was her primary caregiver and the hospice nurse had failed to explain to him pain and hallucination control. The hospice ‘comfort kit’ with liquid morphine for pain and Haldol for agitation sat sealed at the back of their refrigerator until I arrived five days before she died. As both a hospital and home health nurse, I had been with people before as they died. This, of course, was different since it was my mother. After she had taken what I thought was her last breath (it is hard to tell sometimes), I called hospice to have them send someone to declare death so I could call the funeral home. The person answering at the hospice (unfortunately a large for-profit hospice company) told me they didn’t do that (this was during regular ‘business hours’ and not some after-hours answering service). I told them I could not be expected to declare my own mother dead and they’d better send someone. I discovered after that experience that it is not easy to find out how to file an official complaint about hospice care. I think they make it difficult on purpose and hospice care is largely unregulated in this country.
On this anniversary of my mother’s death, I am hoping that hospice care is better this time around for my father—and for me. We are going with a different, smaller and not-for-profit hospice program in hopes they are of better quality. The hospice intake nurse came to meet with my father and me last week to do an assessment. It is unclear whether or not he qualifies for hospice yet as he is not oxygen-dependent. Seems there are fairly rigid Medicare rules about who qualifies for hospice with the primary diagnosis of heart failure. The nurse said he may have to wait until he has been in and out of the hospital a few more times (oh—that makes a lot of sense!). They have calls into my father’s family doctor and cardiologist to ‘get more information’ to decide if he qualifies for care. It has been a week and the doctors haven’t called them back. It is a fulltime job just trying to get little pieces of the health care system to talk to each other, and I am a health care insider. I think about Joan Didion’s The Year of Magical Thinking, which I found and read at my parent’s house last week (excellent book, somewhat similar in spirit to Terry Tempest William’s Refuge). For Didion, the magical thinking was holding on to her dead husband’s shoes, thinking he would need them when he came back. For me, the magical thinking is that our health care system will start working better, if not in my father’s lifetime, at least in mine.