Cancer Diary: The Horrible Hospice from Hell

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.

• Hospice C, upon intake, asked Carl to sign a blank advance health directive. He was in no condition to think wisely about anything, including the unwiseness of signing blank documents for any reason. Before he was ill, he never would have acceded. (He also might have been persuaded by his strong desire to come home.) Later, we learned that Hospice C had filled in the directive in ways that did not match the directives he had on file at the hospital and in direct opposition to what his wishes were; they matched it to their convenience.
• At the last minute, Hopsice C called to say that they had no way to transport Carl home; they called an ambulance. We learned later that they did not pay the ambulance, and Carl was billed thousands of dollars. (We are still working through that one.)
• They sent no supplies home with Carl and did not provide any supplies for four days. 
• Because Carl was a 300-pound man, regular diapers would not fit him. There was no way we could change him, and he sat in dirty diapers for those four days.
• We frantically called and begged for supplies from Hospice C, but we often got voice mail only.
• We also could find no large diapers locally and were so overwhelmed with other aspects of his care for which we were also getting no support that it was hard to cast the net wider. Fortunately, a friend of ours searched every supply house and on the fourth day found one 30 minutes away that not only had bariatric diapers but, feeling bad that Carl had been in the same diaper for four days, sold them at cost to our friend. 
• Supplies and a nurse showed up at noon on the fourth day one hour after I called the State healthcare oversight office and complained; Hopsice C confirmed being contacted by the State. The nurse with supplies had been here only about ten minutes when our friend marched in with several big boxes of diapers. Without realizing who was there with us, she announced, "I have the diapers, and the supply house felt so bad about that horrible hospice that it gave them to me at cost." (Oh, the look on Hospice C's nurse's face!)
• We did get an intake nurse who came by on the second day. When we asked her to help with wound care, she agreed, but she had to borrow our personal supplies! As for changing the diaper, she was not interested. She did promise to have Hospice C send us supplies right away. If two days later was "right away," I wonder how long "in due course" would have taken!

• The real aide who was supposed to be helping us showed up for the first time on the fourth day -- and, again, that came after our complaint to the State and as a result of it.
• Not only did the smaller supplies not get provided with Carl's transport home, but the Hoyer lift we needed to move him from one place to another did not arrive until the third day, so for three days, he was stuck in a dirty diaper in the same chair where the ambulance personnel had left him.
• The required bariatric bed fell into the same group of things not provided. We got it on the third day. 
• Nurse used our supplies.
• As with the supplies, medications were not provided to Carl until the very end of the fourth day.
• I called 2-3 times a day for the meds. Mostly, I got voice mail. When I got a person, I was transferred and got empty promises.
• A friend of ours called on our behalf and made quite a fuss. Perhaps they thought he was a doctor. At any rate, that was the fourth day in the morning; they admitted to him that the meds had not been sent nor ordered, but that they would be sent by the end of the day -- we got them in the evening.
• Our friend told us that in talking to him, they violated our HIPAA rights in several ways.
• We found an alternative at the end of the fourth day, thanks to our priest, and the Hospice B director showed up first thing in the morning. 
• We signed the paperwork to change hospices and faxed the paperwork to Hospice C. That should have been the end of everything bad and the start of everything good, but Hospice C was not done being bad yet.
• Within an hour of our fax, the director of Hospice C showed up at my door, pushed her way in, and proceeded to harass me (my daughter, a psychologist who observed it, called it bullying). She also threatened me: Hospice B needed us to give back the bariatric bed immediately, even though we had only been an hour with Hospice, which needed a few hours to get a bad out to us. My daughter's observation: the director was so brazen in her bullying that it seemed clear that this was a regular behavior for her and the hospice -- they were very likely bad to many people, not just to us. In fact, at one point, the things she was saying were so egregious and so clearly wrong, that I put her on speaker phone with the director of Hospice B and also talked to him while she sat that. As he suggested, I finally pushed her out the door, nearly literally. Ironically, the threat of sending someone to pick up the bariatric bed immediately was an empty one. We had to beg someone to come get the bed hours after Carl died. We lived with two bariatric beds Carl's last four days. Hospice B picked up their bed and equipment almost immediately. Hospice C was still using our house to store their stuff hours later -- and, again, it took a special phone call -- this time to the company that owned the bed -- stating that we would be putting the bed on the curb at the end of the day to get someone to come pick it up.
• The next morning when we expected staff from Hospice B to come help, the director called me at 0800 and said that Hospice C had not released the medical records the previous day. He spent the morning and early afternoon, calling Hospice C administrators, proceeding up the chain of command until he got to the owner. My daughter contacted a friend in San Francisco who is a respected lawyer. Her quick letter to the owner of the Hospice C chain yielded results within minutes. Hospice B got the records! 

Hospice B turned out to be very responsive. Once the medical paperwork was made available to them, they sent two aides, and, even before getting all the paperwork, they provided all the needed supplies and the bariatric bed. Night and day difference! Alas, Carl survived only four more days. It would have been wonderful if all his days at home could have been comfortable. Half of the last days that he had on this earth were made miserable by the horrible Hospice C.

A friend of ours who had worked for years as a hospice chaplain in another state suggested that rather than sue Hospice C, which in our angry moments we considered, given that we had two lawyer friends who would have been happy to jump into the fray, but rather to seek action to cause change so that Hospice C would have to and would want to change its behaviors. We followed that guidance.

• We put up a Yelp! notice, hoping to prevent others from experiencing the same misery. 
• We used the tella channel, as in tell a person, tell a friend, tell everyone you know to get the word out, and mentioned it widely on Face Book.
• We also reported the problems formally to the State, which has found irregularities and transgressions by Hospice C. Hospice B confirmed our complaint. Now, the complaint has been raised to the federal level. 
• While it is clear that Hospice C will get its comeuppance, or so we have been led to believe, how does a future client found out about a hospice on probation or disciplined in order to make an informed choice? Caveat emptor would seem to be in order. Before agreeing to a hospice, do the research. Hopsice C was recommended by the hospital, but, then, as we found out, all local hospices are recommended by the hospital. We did not know that then. We do know, and we share that information widely -- do not depend upon a hospital's recommendation. 

Our advice? It it becomes time for your loved one to be on hospice, ask a funeral director. They generally know which are the best hospices around. 

Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness. To that end, it is expanded and updated weekly. As part of this effort, each week, on Monday, this blog will carry an informative, cancer-related story -- and be open to guest posts: Cancer Diary.