Last June the doctors told us that Dad wouldn’t “live to see Christmas.” At the time it seemed just plain silly to me. Sure, Dad was showing signs of what the Alzheimer’s Disease was doing to his memory. And sure, his PSA levels were ridiculously high. He had some problems, but absolutely nothing that seemed to actually be life threatening.
We took it seriously enough to enroll him in a hospice program (for some of the trials and tribulations of that search, click here). After a lot of researching and interviewing we selected the Big Statewide Hospice Company. BS Hospice has not been without its challenges, but overall they have been satisfactory. (Note that the names of all health care providers have been changed – mostly for my amusement).
Two weeks ago, things changed dramatically. Overnight, Dad was suffering severe pain in his lower spine, left hip, and left femur. This is potentially very bad. It means either that the cancer has metastasized into his bones, or that we have a new problem. If it is the cancer, then this is the beginning of the end. He will be in constant pain until the cancer kills him. If it is something new, then we may or may not be able to do something to help him.
BS Hospice responded admirably. They immediately started him on a rotating program of the holy trinity – Roxanol (liquid morphine),
Gabapentin. While this keeps him pretty dopey, it does allow him to be much more comfortable.
After a week of this “pain management” Dad’s condition was unchanged. BS Hospice Nurse #5 (the RN Case Managers from BS Hospice change so frequently that I haven’t named them, just numbered them) decided that she should refer Dad back to his primary care doctor (Dr. Primary) to get a bone scan done. This is HUGE. From all of my research, I understand that it would not be unusual for a lesser hospice company (like Dr. Asshat’s Lying Thieving Hospice Company) to simply declare that this was a symptom of the cancer and nothing was to be done. In that case, your only options are to wait for death or to quit the hospice company. But BS Hospice did the right thing – they decided to actually gather some evidence and make an informed decision about his care.
So immediately after Nurse #5’s visit on Monday I called Dr. Primary to make this happen. Now you may not know this, but while Dr. Primary is wonderful he works in an office under the direction of Dr. Asshat. So it was no surprise that when I called I got a bunch of bullshit about how Dr. Primary was out of the office blah blah blah blah blah blah “but if you were with [Dr. Asshat’s Lying Thieving Hospice Company], then [Dr. Asshat] could order the bone scan today. Would you like to change hospice companies?”
I put up with this nonsense over a series of phone calls, until finally on Wednesday morning I explained to the Useless C on the phone that this was illegal, and I was certain that the state regulators would love to hear about it – and that I was going to find a new primary care doctor immediately. And then I hung up.
In less than 10 minutes, Miss Useful (the office scheduler) called back to let me know that Dad’s bone scan was scheduled for Friday morning at 10. Wow, isn’t that amazing? Providing medical care for Dad is simply not possible unless they are threatened! Who woulda thunk it?
Now, lest you think that this is simply a rant about a single bad provider (Dr. Asshat), let me continue. As soon as Miss Useful scheduled Dad’s bone scan at North Ottawa Community Hospital I called BS Hospice to let them know that we finally had the test scheduled. While I had them on the phone, I also let them know that Dad was getting progressively weaker and now needed assistance to get up. I asked if they could provide me with a gait belt so that I could assist him without throwing out my back.
Keeping in mind that I was praising the BS Hospice Company only a few paragraphs back, what do you think their response was to this question? Why, the ever so pleasant and less-than-helpful voice said to me “I don’t think that we can provide that.”
Since I was already on my last nerve for the day, I simply stated “Since Dad is 6 feet tall and weighs 270 pounds, it is dangerous for me to try and assist him unaided. Since you can’t provide me with a simple device to assist him, I am going to be forced to call you and request a nurse visit EVERY time he needs to stand up or sit down. Thank you.” And then I hung up.
Wow, that hanging up thing really works! In less than 20 minutes Nurse #5 called to let me know that she had been updated on the bone scan – AND – that she would be stopping by later in the day to deliver a gait belt! Isn’t it amazing!
It really frightens me that Dad gets treated like this. He has good insurance, is a compliant patient, and has a full-time in-home caregiver (me) who advocates for him. I cannot imagine what it must be like for someone lacking these advantages to try and navigate through the system.