MSI Press Blog

  I would be remiss if I did not follow-up on the story of the horrible hospice from hell . Once the complaint was raised by the California office to the federal level, months passed. I wondered if justice would be served. But I kept hearing that one or another person who had witnessed the inadequacies of the horrible hospice from hell were being interviewed. I also heard that the hospice was called in for interview and that a couple surprise visits were made by state staff.  After nine long months, I got a written response from the state. Wow! The hospice had to post that they were not meeting state requirements. They had a two-page long list of deficiencies to correct with a time frame for doing so and an oversight plan. I was not only satisfied, but I was also impressed with the efficacy of California's oversight. It could not bring Carl back; it could not undo the harm it had done to him; it could and likely would spare many others from the kind of trauma we had through. ...

I have put off talking about this topic on Cancer Diary for a while because the memory is so painful. However, it did happen, and therefore it probably happens more often than one would think or hope. When it became time for Carl to go on hospice, we chose home hospice and looked forward to him being back home from the hospital with his family and having the support of professionals in our own.  Alas, that did not happen. Whatever could go wrong did go wrong -- and it would appear that with this particular hospice, it might have been regular practice rather than something going wrong. The easiest way to share is probably just to provide a list of everything that went wrong. (Any one of these might go wrong with any hospice, something caregivers should be prepared for. All of them going wrong is simply incompetence, uncaring, and abuse on the part of the hospice.) [In this list, Hospice C is the first hospice we worked with, the bad one, and Hospice B is the second one, the good one...

  When Carl came home from the hospital and was put on in-home hospice, we, the members of his family (my daughter had come from the East Coast with her family and my son had come from Sacramento), did our best to learn all about his medical needs. The kids had come home because it was clear the end was near, and we wanted to make sure that his time at home was as pleasant as possible, surrounded by family. We learned about the various medications he had been taking and would be taking. He was not able to communicate well by then, but he had quite an arsenal of regular pills that he took every day, and once he stopped being able to sort them out himself, we had to figure out which he needed when. He was also given new drugs -- morphine, which he used only a little of, and an anti-anxiety drug, which he never needed. With the morphine, instructions were unclear, and we guessed at amounts. Checking in with the hospice nurse, we learned that we were giving a 300-pound man the dosage t...

  Emergencies don’t always come with flashing lights. Sometimes, they come with silence. My son—45, living with CHARGE Syndrome—was eating in a booth at Fosters Freeze when he began choking. He stopped talking and sat perfectly still, rigid. A super example of hyperactivity, he does not know to sit still; this was not normal. Then, his body turned rubbery. His skin changed color. His eyes locked and rolled back. He wasn’t breathing. We were the only customers. I asked twice— please call 911 . No one moved. And so, I stopped speaking. I stopped asking. I did what decades of caring for him trained me to do. I tried to save him. He was wedged into the booth. I couldn’t lift him out—I couldn’t fully lift him at all. I managed to pull him partway out, enough to get his head hanging down over the bench. I hit his back, again and again, and waited for breath to return. It took minutes. I’m not sure how many—time doesn’t tick normally when your child is blue. Eventually, his lungs be...