Hospice Patients Alliance: Consumer Advocacy


Jose was a father, husband, brother and loved family member. We cannot put in words how much he meant to us, and still does. But everything changed when he became sick. And then it became worse, we learned that it was a terminal disease! Nothing could be done the doctor said. So we were told that hospice should be called in. "They know what to do," we thought. "They'll take care of everything." We were wrong...oh, so wrong.

When the hospice staff came out, they told us that Jose was so sick that they had to take him to their facility. Jose said he wanted to stay at home, and we begged the hospice to try to keep him home with us. Couldn't they bring some nurses in the home, like we had heard they do?? "No," they said. They had to bring him to the hospice's own facility, because there were "no nurses available" to take care of him at home. We had no choice but to move him to the facility, ...where he didn't want to be, where he didn't want to go.

His brothers and relatives wanted to keep him at home and so did we. But we didn't know what else to do. Every day at the hospice care facility, Jose begged to go home. "Let me go home," he said, over and over. But no one at the hospice did anything to bring him home. At least, until we spoke with one nurse. He listened and told us he'd ask the hospice management what they could do to bring Jose home. We wrote a letter which was given to the hospice management and placed in the chart as well.

But the hospice management never responded. They ignored us, and ignored Jose's wish to go home, even though he begged to go home every day. Did the hospice management care? No, not at all.

We felt terrible that we couldn't bring Jose home. And later we learned that the hospice had lied to us! Because Jose's symptoms were so severe, the hospice was required to help us at home and try to control his symptoms, but they never tried at all. Of course, now we know that they were billing for room and board at their facility and getting money from our insurance company for the hospice services too. It was all about money, nothing about what was right for Jose. We didn't know then what the law was, what Jose's rights were. Unfortunately, we can't go back and change things. We wish that we could have known then what we know now.

When a complaint was made to the State inspectors, they investigated and told us that the hospice was in violation of the law. They should have helped Jose at home. But the hospice management was only interested in money!

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