Hospice in the Stimulus Bill

I'm way behind in updating the blog, so I'm going to point you to this article about the hospice provision in the recently passed and signed Obama Stimulus Bill. It probably has more information than I would have given anyway.

Continuous Care Issues

I received this comment/question to a prior post about Continuous Home Care, and thought I would push it to the top of the blog to see what reactions others may have.

OK, here's my question. I was TOLD by a hospice here in Illinois (trying to get my business), that because my father was w/i 2 weeks of dying (we ended dialysis), they would provide two 12 hour shifts of continuous care (one CNA in the AM hours, and one LPN in the pm hours). However, as you might imagine, it is not the same individual, but, I was just told that after only 4 days of continuous care that I should be charting and giving medications. I don't understand? I would have opted to have my father go to a hospice wing of a hospital vs. coming home because I have so very limited experience with end of life care. The hospice LPN last night made a medication error, and this morning neglected to give a much needed medication. Now, we have to wait for the Hospice RN because my father has a G-Tube & the CNA is not authorized to give medications. Is this the kind of standard of care that Hospice provides? Please tell me it's not so.... Karen in IL

Karen, I have a million different thoughts about the situation you have presented here, and I'm hoping other readers will help by adding theirs and correcting me where they think I'm wrong.

First, I would say that, given the information you have provided, I don't think they should have put your father on Continuous Care in the first place; he doesn't seem to have an acute medical crisis that needs that type of attention. I am sure they should have never promised that they would provide 24/7 continuous care until your father passes away. Assuming he does/did have a crisis that qualified him for this level of care in the first place, there is the hope that the crisis would be resolved and he would no longer need this level of care. From personal experience I can tell you that the two week prognosis for someone ending dialysis isn't always correct. I don't write this to give you false hope, because I have seen things progress very fast when dialysis is ended. I only write this because I have seen a patient live for almost nine months after ending dialysis. She was very sick upon hospice admission, but became stable and even enjoyed some quality days for quite some time. She clearly was not in need of continuous care.

Second, the medication errors are regrettable, but I have trouble getting too upset; people do make mistakes. It is true that a CNA (in most states) can not give medications, so waiting for the RN is what you are stuck with. Hopefully you won't have to wait long, which brings me to point three.

In the end, I believe you have been done a disservice by whoever explained hospice to you in the beginning. Basically, I think you are getting more care than the hospice should be providing. (Again, I don't know everything that is going on with your father, so I could be wrong about that.) In a normal case, the hospice should have talked to you about learning, over time, how to administer the medications yourself. You would have also been responsible for many of the recurring tasks that the Continuous Care staff is doing at this point like helping with bowel movements. In trying to get this point across, I often tell families that we are somewhat like computer technical support. You can always call us when you don't know what to do, but you are the one who actually does much of the work (when we are not there). When things go wrong hospice will be there to help, but hospice was never intended to provide 24/7 care. Typically, a nurse visits a couple of times a week and a nurse's aide can come daily to help with bathing, dressing, and personal care. The normal things that happen between those visits (dirty linens, feeding, getting in and out of bed…) is the primary caregiver's (in this case that is you Karen) responsibility.

It sounds to me that you would not have brought your father home if you they would have explained these responsibilities to you upfront. It is quite possible that they made you these promises knowing that they were not going to "get your business" without them. I hope you understand that this type of practice is not what hospice is all about. I'm sorry you are going through all of this and wish I had more words of comfort for you.

HG

Links

I am regretfully late in pointing out that a Grand Rounds for Palliative Care blogs has been started. Check out the first round up over at pallimed!

(For those who are not familiar with Grand Rounds, it is a roundup of the best of the blog posts on a given topic. Palliative Care Grand Rounds will be published monthly and is hosted by a different blogger each time. The host reviews submissions from many different blogs and posts a list of links and summaries of the best of the best. This one has some great reading.)

I also wanted to pass along a link I received from a reader who has started a blog about her experience as a patient on hospice. It is called Life as a Hospice Patient and is interesting reading. What I like most is that the blog is much more about her life than it is about hospice, and that's how it should be. Hospice should not be the focus of any hospice patient. The hospice's job is to help the patient live their life as much as possible. For this patient, that means trips out to lunch or hosting visitors at her house. I think if you read between the lines, you'll find a hospice that is going a good job of helping while staying out of the way. It's probably a good reminder to those of us who do this for a living that we are the behind the scenes folks.