Hospice Horror Stories

As ever, I provoke. In comments on Dethmama Chronicles I've pledged to share my hospice horror stories. First, I must say hospice is important and good. I believe a good death is possible, I believe hospice is an important player and partner as we talk about reforming health care in America, and I refer folks to hospice in general whenever I can. Dorcasina has discussed it so much more wisely and clearly than I can:

"I know that in retrospect, survivors are grateful for the slow easing away that hospice can provide; glad that they didn't abandon their patient to the studied impersonality of the hospital room, grateful for those moments of quiet hand-holding amid the medical turmoil that accompanies changes in states of being. But the anticipation of loss is unbearable, the opening up of an abyss of sorrow and terror. I have had to remind myself that suffering now is not preventative; this future loss will be no easier for the grief we are feeling today."

The day I signed Gavin into hospice I had to pull over on the parkway to cry. I had been screaming inside for days. And yes, I was grateful to not keep escalating the medical farce and to begin to understand, to let go, to let in things that are so much terribly larger than I could understand. BUT. We had some astonishingly insensitive experiences in hospice*:

1. The M.D. in hospice stubbornly refused to believe that I was Gavin's wife, not his daughter. Yes, he's 20 years older than me, but I said it several times and pointed at Short Stack, and he kept going. "But the file says his daughter...." His apology? "Oh, I thought because you are so young... " Yeah, duh, the word is "sorry."
2. The staff didn't treat me as single point of contact, and followed conflicting care orders from my very anxious mother (who had a valid concern, but one that was manageable) rather than checking with me or containing her.
   
3. They did not know how to deal with his pacemaker/defibrillator. There was no plan at intake. I understand that this is a lack of protocol throughout the "system," but it could have been really traumatic and we should have received guidance -- we should not have had to initiate the topic on his last day and rush the Medtronic rep in at the last minute. Talk about deus ex machina...
   
4. Gavin died Friday evening. The social worker called me first thing Monday morning and said, "Well, that sure was quick!" I understand these things are not predictable -- I know they did not anticipate how quickly things moved for him -- perhaps it was her form of apology for not being around at the right moment -- but Lord, this is a very very offensive thing to tell a fresh widow.
5. The other social worker, who may or may not have apologized for the other one, asked me in a session if I'd read "The Year of Magical Thinking." (Yes, I could benefit from reading accounts of grieving, maybe Kubler-Ross,** but to suggest I read a book where the author loses first husband then child...?) I recoiled. "Of course not."
6. The staff managed to lose the bag of cassettes, pictures, and treasures from his room that I had left behind that night. Did they really think I'd want to pop back over there quickly? They were dripping with volunteers who could have delivered it before it got "lost" (or insufficiently sought).
   

Yes -- I hear you -- there is no good way. Yes, much of this is my projection or transference or something. Maybe I'm blaming the messenger. Maybe I was too nuts to do anything right. I certainly could not handle details, or care, or emotions, or my family members. BUT STILL. Isn't this pretty bad?


* Everyone in the ICU and the hospice salesperson, I mean intake person, really pushed me to go to inpatient hospice, a lovely small facility. Of course, I thought they wouldn't have room for us, it was very exclusive all their literature really discouraged one from applying. Like the Seinfeld: "If you're thinking of getting a place [in Tuscany], don't bother. There's really nothing available."

Oh -- but those rooms are reserved for people who aren't expected to last more than two weeks. We couldn't possibly take it. He should have another few months, he's been living with all these problems for nearly two years now! And he's very motivated. And he really wants to come home.

The small number of rooms dovetailed nicely with my general feeling that I'm excluded from the good stuff.

"We think he's a good candidate for inpatient services."
"But what about the two weeks thing?"
"That's not important. It's the right thing for him."

Then I think of what they were looking at -- me, desperately looking for another solution, defending the new med, seeking whole brain radiation for two tiny asymptomatic mets that were not the problem, helpless without a real doctor (ours didn't have rights there), deny deny deny -- me with a small child, still trying to work, managing his mother, with so little help... -- I know the truth was that they knew I could not handle his at-home care even with their help. And since I still thought it would be a few months of this care with only limited support from hospice, friends, and family -- and him, contagious with shingles, with a 2 year old and several seniors underfoot -- him, severely hypoxic, too weak to get up from bed -- I believed them.

Of course they were right. But if I'd known it would be just three more days?

** Dorcasina's quote brings up an element of grieving that I would not have guessed: Kubler-Ross says that it's a hallmark of grieving to think there's a formula that you are not following -- a general sense of deficiency, that maybe there are rules you don't know or understand -- and it was an immense relief to me to learn this, when I finally did, long after one year had passed.


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