Hospice and Government Regulations

After seeing what I had posted earlier today, an attorney friend of mine got in touch with me to inquire which hospice organization we are using.  I have deliberately not used the name of that particular hospice as I believed that it was not fair to give them bad publicity without giving some time to rectify what had happened. 

This good and powerful friend of mine made some phone calls, and I soon heard from the hospice director.  A few things were straightened out.  First, which I had not mentioned in the blog before, we still had not received the promised set of medications (the Comfort Pack) that would give us the ability to manage my mother's pain.  So we had been home with her for five days without those important meds.  She had been admitted over a holiday weekend, and the out of state pharmacy used didn't fill orders during that time, but no arrangements of any kind had been made to get a local pharmacy to send them.  

We do not think our mother is in a great deal of pain, but we actually don't know as she has very much lost touch with what her body is doing and feeling. And when the supervisor described to me the signs of pain that a person in that situation usually gives, I realized my mother had been giving most of those.  This just breaks my heart.

 

Second, the nursing supervisor, whom I had nicknamed "Miss Arrogant-Snip" has been removed from our case and I understand will have no decisions concerning her future care. For that I am thankful.  I also hope this is a learning experience for her.

Third, we were offered a bit more help, but it is still a drop in the bucket compared to what we need.

Now, another friend has just commented, "Since we were told that we cannot under any circumstances leave my mother alone, why does that not qualify us for continuous care?" 

Good question.  Answer:  because it doesn't.  Period.  According to the person with whom I spoke today, "her hands are tied" by government regulations as to what they can and cannot offer. Although my mother is terminal, we are probably some time yet from the final days, and there is no continuous care offered until one of their medical personnel decide that she is about to breath her last.

So, if we had agreed to let medical people do what they wanted with my mother's body last week, we could have kept her in the hospital for a while, with all charges covered by Medicare.  Then they would have shuffled her back to the rehab-skilled nursing center, with all charges covered by Medicare, where they would have worked with her a little while until the next medical crisis would have sent her back to the hospital again.  Each of these organizations charge exorbitant amounts to Medicare on behalf of my mother. However, because we chose to do the honorable thing, we're stuck with the bill for the vast majority of her care.

Let me ask you: how many of you are able to completely set your lives aside in order to care for your aging family members and help them have a dignified dying process? How many can leave behind work, family, church and social obligations to make sure that those parents and grandparents who gave so much to us are properly cared for at the end of their lives?  

My mother sacrificially saved and invested her money all her life.  To know that we are going to be spending a large portion of that carefully built-up savings on the extra nursing care we must have in order to keep our own sanity and health would break her heart.  She would have gladly sought a way to gently and painlessly end her life if such a thought had ever occurred to her.  She had made these wishes abundantly clear. 

Am I calling for assisted suicide here?  No, I am not.  But I've asked medical personnel after medical personnel from the beginning of this journey if this is the way they want to die.  Every one of them has said, "No."

We have got to change this system.  Contact your congressional representatives.  Send a link to this blog to help raise the question.  Raise a ruckus.  If you think this won't happen to you, you are probably wrong.  Speak up now.  There are a huge number of baby boomers getting ready to enter these complicated years where we must make end of life decisions.  We've got to deal with this before too many of us Boomers reach the state my mother is in.  We will bankrupt the entire nation with our medical needs at the end of our lives if we can't find a more reasonable way to approach this time.