continuous care issues

Tuesday, February 17, 2009

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.




I agree with all that hospice guy has written. We have often provided continuous care help when a patient first comes home from the hospital in order to help get the patient stabilized and to provide the extensive teaching needed for a family unaccustomed to providing hands on medical care. The idea in those situations would be to taper off services as the family mastered the knowledge. There have been many situations where we presented this plan before beginning services and the family seemed to understand. However, in the midst of their distress they became upset when it was time to assume more resposibility for care of the patient, feeling they were promised that hospice would take care of everything 24/7. We knew we never said this but somehow that is what they heard. We try to be impeccable in our communication of exactly the level of support that we are allowed to provide under Medicare regulations, but misunderstandings do arise.


Having been in hospice for only 4 years, I am already tired of seeing the CHC benefit exploited and abused. In my town, one agency offers this to every patient and family leaving the hospital; they really zero in on the “achieve palliation” portion of the COP.

I do have to concur with HG regarding the OP; your dad was probably not appropriate for CHC to begin with. How could the hospice know when your dad was going to pass? They sold you a line of goods to get you to commit to that hospice.

Again, agreeing with HG, ALL HOSPICES ARE NOT THE SAME! Unfortunatly, you probably did not know that, and went with what they told you. Hopefully, there are other hospices in your area; you do have the option to revoke with Hospice A, and elect care from Company B. It may be necessary for you to sit and interview different hospices to see what type of care they offer your dad, and what type of education/support they will provide to you.

I truly want to beleive that all hospices have the common goal of caring for the patient at end of life; yet some are willing to go to whatever lengths necessary to “convince” a family that they can do better.


I am sorry for what you have experienced Karen. I am a Licensed Clinical Social Worker practicing in California. I work in the home hospice division of a large not for profit HMO. I agree with HG on his analysis of your experience and I am gratified to see an administer be so honest and straight forward.

The continuous care part of the hospice benefit is meant to help stabilize a patient having severe symptoms at home, symptoms that a family member, even with telephone support, can’t handle. Although it can apply to many symptom situations in my experience it usually comes near the end of life when some patients experience what is referred to as terminal agitation. That is not a situation I would expect to see with the withdrawal of dialysis. It would be more likely for a patient to just become more and more lethargic and then just not wake up. The hospice promising continuous care would certainly know that. And as HG says, it is not unheard of to have a a patient taken off dialysis, only to live a long time….so they didn’t need it anyway but for whatever reason, and that changed dynamic was never challenged by the physicians involved.

It is sad to say but I do see hospices, usually larger for profit operations who will promise the moon and deliver a quarter. Frequently my employer (for whatever insane reason) will out source our MediCare folks and if they survive and the patient’s benefit reaches the six month mark they are returned to us. These hospices operate quick and dirty and don’t want a fraud challenge. They do want that six month first admission period where they are relatively free from audit challenge.

Trillium makes a good point too about impeccable communication, but when families are under stress what is said and what is heard can be remarkably dissonant. Sometimes I think families just unconsciously change their mind about the commitment to being with the dying process, especially when a lot of personalities come into play. That said, those who walk the whole road usually find the experience has been a tremendous gift. I hope your experience has or will ultimately turned out that way.


I agree with Christopher and the Hospice Guy with respect to the use of continuous care. I can’t believe folks think a “medical crisis” is “often provided to help when a patient first comes home for the hosptial to get them stabilzied.” That is a complete misuse of the CC portion of the Medicare Benefit and one of the reasons the Benefit is in question with MedPAC and I believe these hospices will soon be exposed. I’m deeply sorry for the patient and family to experience what they did. Good ole fashioned hospice care can be done without CC on a regular basis, especially if we’re talking about patient and family education and walking through the process with them. I agree, it’s sad about the medication mix up and it can happen, but it should not happen often and should be corrected immediately and teaching caregivers how to do this is vital for the patient and empowers the family and caregivers to give back to their loved one.


These kinds of stories break my heart, because I see it as an agency trying to take advantage of someone who is perhaps at the most vulnerable time in their life. There’s just no excuse for this. If there is truly a need for CHC, then provide it, but this sounds like the need was more for daily living tasks.

I am in Illinois, and the agency I work for is extremely judicious in its use of CHC; I think it must because our case managers/teams are so attentive to a patient and family’s needs, that crises are often averted. It’s also a top-down message that we don’t do things to cause Medicare to question our practices.

I remember going to do an information visit one time, in a large hospital, and found out afterwards that the family had interviewed two other hospices that day, prior to ours. One of the hospices told the family that they actually ‘rent’ a room from the hospital so that the patient can stay there and not have to be moved (the family did not want to take this patient home). I tried to explain the difference between renting and ‘contracting’, but this family could not get passed the attraction of having a room ‘rented’ for them, and thus went with the hospice that offered this, even though I tried to explain that what they were providing, was exactly what we would provide, but it’s called contracting with the hospital. I definitely got the sense that that family had very high expectations from this other hospice, and I hoped that in the end, they were not disappointed, or now have memories of hospices as being corrupt.


Oh boy. I would like to think the Hospice was well meaning, wanting your father to be at home, comfortable, surrounded by his family.

I would like to think there were some kind of symptoms that warranted the CC benefit.

I would like to think that someone was very clear that CC is only ever intended to be a short term intervention (in my experience, 1-2 days at most) until the patient is comfortable and the family can take over.

I hate to think you have been put in this situation because someone wanted your “business.” As a Hospice nurse, this is distasteful.

The RN should teach you how to give meds in the Gtube, it is not nearly as complex as you might imagine. To have a loved one die at home, this is an example of the tasks caregivers must courageously learn. I hope you can find some peace in knowing your Dad is where he wants to be in his final days. I hope that you can find peace knowing you gave this gift to him.

K.B. Rn


Hospice care differs tremendously from one hospice to the next. Years ago, I was hired as an admissions RN for a hospice, and I had been on the job for 4 months before I even heard that continuous care was an option for hospice patients. Go figure!


Is this the same hospice that just settled the 24.7 million dollar whistleblower suit??? It sure sounds like something they would promise (and I can say this because I did clean up for the marketers in this company).


It wouldn’t be that hospice, susy – that hospice may offer it but rarely followed through on “CTC” – they just didn’t staff for it. There are any number of other hospices it could have been, including a couple very large ones that really push CC as a revenue source.


Allen-As someone who used to work for that particular hospice, I can tell you that it CERTAINLY could be that particular hospice!
In our area, that hospice DOES HAVE a dedicated CC team-in fact, when they were “slow,” they leaned on the marketing department to make sure the CC program was being properly “educated” to the referral sources so that the team was being utilized.
In fact, that hospice, again, in this area, is notorious for offering CC and GIP to referral sources to “assist” patients and their families.
Sometimes, unfortunatly, hospice is truly a “business.”


I am new to this and would like to know when a hospice provider has to provide CC and for how long do they have to continue the CC.



Does anyone know how I can find out how many hospice are for profit and how many non profit?

kimj hospice team mgr

I too feel that your hospice provider didn't explain things as thoroughly as they should have. That being said, my agency always leaves everything is writing to help combat the lack of retention many families have due to their grief reactions. They can go back and review the info when they have questions or can't remember what was told to them. I have also seen ICC being used inappropriately by other agencies. It is defined as CRISIS care with the goal being palliation of the symptom or condition that is out of control. When placing a pt on ICC I try to remind the family that keeping their loved one at home is a partnership. We provide the knowledge and supplementary staff but they must be willing and able to do the leg work. It isn't the right answer for every family and I wonder if this writer was given the option of placement on an inpatient unit or nursing home for end of life care.


My grandmother was under hospice care three years ago and the caregiver made similar errors in medication administration. It is easy to get infuriated, however, we are all human and make mistakes.

Moorpark Hospice

Very sensitive post and i like it.Keep writing such articles so that issues like this can be discussed on such portal.Thank you………