JOAN’S BLOG, THURSDAY, OCTOBER 16, 2014 – HOSPICE MUSICAL CHAIRS

My sporadic blog writing is due to two factors. The first is that the constant phone calls, meetings with multiple groups of care workers, fighting to be heard, and Sid’s overall decline have left me sapped of energy for anything else. The second is the emotional toll this is taking on me has made such a jumble of my thoughts that I have been unable to write anything coherent. It is time to update you on what has been going on for the last 3 weeks. As always, a lot of what I am writing is for you to add to your own knowledge, so you will be prepared with as much information as possible if you encounter a situation similar to mine.

I want to make it perfectly clear that I have NO complaints concerning the care and concern my husband has received from Hospice. All of the Hospice workers from CNA’s to social workers to nurses to administrators have been nothing but well educated, professional, and dedicated.

Although basically designed to provide the same level and type of care, Hospice rules appear to differ from State to State. It is also important to understand that Medicare pays for Hospice, and Medicare has tightened the rules for eligibility because of the expense and previous abuse of the system. Therefore, the Hospice administrators and nurses who evaluate patients are under pressure to adhere strictly to the guidelines for admission to, and release from, Hospice as set by Medicare. These guidelines have very specific criteria for individual diseases, and allow no leeway or interpretation. Each patient is re-evaluated every 3 months.

Regardless of the fact that my husband lost 19 pounds in September; 19 pounds in ONE month; has significantly declined in his mental capacity, including the ability to express himself, understand where he is and why; has become so restless and fidgety that his calming medication had to be increased; and no matter what is done with the anti-rage medication, he has become increasingly combative, is sleeping more, and has lost his appetite, Hospice has determined that he has “improved” since his initial evaluation, and therefore is no longer eligible for their services.

As has been my complaint since Sid went into the nursing home 14 months ago, I was not consulted, nor were my observations taken into account. I was called and told of the decision. My counselor arranged a meeting for me with all the parties involved, hoping to avoid a complete emotional collapse on my part.

During the meeting, I explained to everyone that Hospice initially evaluated Sid two days after he was released from the hospital. He was in the worst mental, physical, and emotional state possible, due to the trauma of the hospital stay, as well as the new heart problems. Therefore, his symptoms qualified him for Hospice Care. Of course, going by that baseline, he has “improved” since then. It took about two weeks, but he finally settled back into the NH routine, although he no longer knew where he was or why, as I have previously stated. I went on to explain that he has dramatically declined since BEFORE his hospital stay to NOW, citing the symptoms I described above ( dramatic weight loss, etc.) Although they agreed with me on those points, they scored him at the end of Level 6, which does NOT meet eligibility criteria, whereas initially they scored him at the beginning Level 7, which DOES meet eligibility criteria. Nothing else matters, including taking into account that the reports of his condition by the nursing home nurses differed widely from one to the other due to a litany of revolving nurses at the nursing home, most of whom were not familiar with him.

This next part is also important for your future reference. I was informed that I could appeal their decision to an outside arbitrator. Hospice services would continue until the arbitrator made his/her decision. If the decision went in my favor, nothing would change. He would remain on Hospice services. HOWEVER, if the decision went against me, I would be responsible for ALL Hospice charges from the time I signed the request for an appeal until the decision was made. $$$$$$$$$

At that point, I made my own decision. I had a pre-scheduled care plan meeting with the nursing home staff that same afternoon. I told the Hospice team that if I could get a written order for “palliative care only” from the nursing home, I would not appeal Hospice’s decision. I wanted assurance from the nursing home that Sid would not be transported to the hospital if he had a crisis, nor would any aggressive measures be taken to treat him for any condition. The only thing left for me to do for him is to see that he is calm and peaceful, as pain free as possible, and that this nightmare is not prolonged unnecessarily. Hospice, being familiar with facilities, was sure that the nursing home would honor my request.

Another However. They told me that this happens all of the time – that patients are evaluated at their worst, show improvement, are discharged from Hospice, decline again, are picked up again, are reevaluated, discharged again, and on and on. I said that there was no way I was going through this repeatedly. If the nursing home agreed to, and followed through on, “Palliative Care”, I would accept it and not play musical chairs with Hospice.

At the afternoon meeting with the nursing home staff, they not only agreed to my request, but by the time I returned to Sid’s unit after the meeting, the doctor had already been called, and he had changed Sid’s orders to “palliative care only”. I also had a meeting with the head nursing home administrator to discuss the situation. So far, everything seems to working as it should. 

Sid continues to decline. He no longer asks for me when I am not there; he barely responds to me when I am there, although he knows who I am; his aggression is still not under control, nor is his restlessness; he cannot find the words to express himself; and he often makes no sense when he does speak. He has very little appetite. He is angry and confused. And I am helpless to do anything about it except watch the dismantling and destruction of a once tall, strong, vibrant, loving man. A peaceful death is all I can fight for, and I will until his last breath.

What I want my readers to take from this blog is an understanding of how Hospice works:

1. Hospice is funded by Medicare.
2. Although States differ in their rules and regulations, because Medicare is tightening the purse strings, Hospice must be extremely strict in their criteria for acceptance and discharge.
3. You may appeal Hospice’s decision to discharge, but if the ruling goes against you, YOU are responsible for all Hospice fees during the arbitration.
4. Most nursing homes have a “palliative care” option – ask about it and its rules if you feel comfortable with the facility handling the “end of life” care.

If you are caring for your spouse at home, you will have more control over how the situation is handled. You will be minus an entire team of revolving nursing home personnel with which to deal. You will be working in tandem with Hospice, their doctors, nurses, and CNA’s. The same admittance and discharge criteria will apply, but you will have only one layer of bureaucracy to navigate. As always, I hope my experience has informed and helped those of you who are facing, or will be facing this issue in the future.

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