I’m starting to think our problems with hospice have all been about slow dying versus active dying. They may be great at providing services for active dying, but not for slow dying.
We weren’t sure we wanted hospice in the first place back when Larry was being released from the hospital. Our concerns weren’t that we had to give up on treatment or cures because we’d long since given up – with Multiple System Atrophy there are no treatments or cures. His neurologist had told him he was “end stage.”
Our concern was more about quality of life – moving from the focus on living to focus on dying, and giving up our privacy by having unknown caregivers come and go. But we enrolled because we couldn’t get the equipment he needed through home health – the oxygen, the cough assist, etc.
With daily respiratory treatments and new medications we settled back into the slow decline of MSA. As he got weaker, we added CNA services to help with his showers. We worked very hard to focus on living rather than dying. In retrospect, I think that the nurses saw that as one sign of improvement to a stable condition.
But they aren’t familiar with MSA so they don’t know what to look for. It is a disease that doesn’t have a typical death trajectory. Death often comes suddenly because the atrophied brain stops telling the body to breath, or because aspiration pneumonia sets in, or because the patient chokes, or because of a urinary infection. There are subtle changes that lead to these deaths but they didn’t know what to look for and document according to Medicare guidelines. They didn’t even document his weight loss.
Who cares for those who are dying slowly? Are we to keep running from doctor to doctor and to the ER with symptom flare ups?
Even if we excuse Tidewell Hospice’s lack of knowledge of his rare disease process and poor documentation, I fault their communication, their lack of empathy, their inability to put themselves in our shoes.
Living day to day with dying, never knowing whether Larry will still be breathing, constantly dealing with choking and diarrhea and weakness is hard enough without additional emotional and strategic injury. They should have prepared us better.
I wished they’d explained the recertification process well in advance, explained what they’d be looking for, let us know when we might expect it to happen, how we’d be notified, what we do next.
We’ll probably file an appeal, which is our right. On the other hand, we’re not sure we want to have his care or his death in the hands of people who don’t understand his disease.
And I’m so tired of it all.