I Didn't But Wish I Had

My husband died two days ago after being on Home Hospice for five months.  With metastatic liver cancer and congestive heart failure, he remained surprisingly stable until two weeks before his death when his condition just plummeted and it was probably his heart that took him out in the end. We were pleased with Hospice until shortly before his death, but  if I had it to do again I would have taken him off Hospice and put him in the hospital when he started getting sicker.  As he deteriorated, we went five horrible days without a nurse visit as he became too weak even to turn over in bed, confused,  incontinent,  choking even on ice chips, unable to take medication, and finally breathless and panicky. There seems to be acute awareness of the need to keep Hospice staff from burning out by not working an intensive schedule---in five months our nurse took three vacations and worked four days a week while our chaplain took two vacations and worked three days a week, and we did not find on-call and coverage to be adequate.  My husband died dehydrated and acutely thirsty (but barely able to swallow) and he gasped for breath for four hours before he died.  I followed the nurse's instructions to the letter but relief did not come. I think that in a hospital he would received skilled professional nursing care and not the Amateur Show that I provided---been better medicated and maybe made more comfortable with an IV or oxygen or some other measure.  He did not die comfortable, and I reproach myself that I did not remove him from Hospice.  For the $10,000 a month that Hospice billed Medicare, they did not help him to a good death, which I believe is their reason for being. And, a minor addendum: now that  he has died I am learning something else about Home Hospice:  our bedroom, which formerly was a refuge, has now become a place filled with nightmarish memories of my husband's struggling death. 
rosaflor rosaflor
1 Response Jul 23, 2010

My family and I are close to that situation. As my mom sits at home in our care under the "guidance" of Hospice we find ourselves praying for her to be released of this life and worse yet -- praying that my dad will follow soon after her -- since I don't see how he can sleep in that room alone! This hospice experience has been pure hell! I've complained to no avail and found little comfort from others who think hospice is the end all be all beautiful way to go! I will keep you in my thought and in my heart!