Tonight, 10pm, got the call from Jeff's ALF: He fell and hit his head again, and they're sending him out. "No," I say futilely, "don't do that. It will do no good. He's in hospice. Hospice says don't send him out."
"We called hospice," they say. "Hospice said to send him." (What? I'm thinking. The whole point of hospice is to care in place.) I throw my clothes back on, and drive to the ALF (fortunately only 2 minutes from my house.) I stop the paramedics as they're wheeling him out. The paramedics allow as how he doesn't need treatment, doesn't need stitches, nothing will happen, but once they get called they are obligated AND there was no Medical POA on file.
This is where I think WHAT? again. What about the Living Will which specifically names me medical decision maker. I know I gave the ALF a copy. Stink. Ultimately, after a couple calls to the mother ship, the boss EMT agrees to take my word for it (my identity having been verified by the ALF staff,) and they wheel him back inside.
So, tomorrow I will make sure the ALF has a fresh copy of that Living Will AND double check that it's adequate. If it isn't, what is? And I will call Hospice and ask how we can avoid this in the future. Not that this is entirely the issue, but I already have a $500 bill from when this exact thing happened last month. Hospice patients don't get their medical transport costs covered. Presumably because they're not supposed to need medical transport.
Any thoughts on how to avoid this kind of thing? If he were being cared for at home, he could whack his head, get good and bloody, and we would just clean it up. But at-home doesn't work anymore, which is why he's at the ALF. He's declining through stage 7, which is why he's in Hospice. How do we coordinate this so care happens IN PLACE? There is virtually no procedure (CTscan, MRI, etc) that we would need a hospital for, because we're not taking lifesaving measures. It's HOSPICE. It's palliative.
Hospice should know that you will be charged the entire bill. There cannot be any outside treatment unless you pay for it once the person is on hospice. I got charged when my dh was on hospice because I took him to the dr. to ck on some meds he was taking. Hospice kind of jumped all over me. Hospice seems to be the one at fault here....maybe a new person told them to take him out. Could have been a real expense trip for you.
My situation was both similar and different. My H was on hospice. He was in a palliative care facility, but not all patients were on hospice.
So the call comes at about 10 pm. H did x and "we" think you should come and get him so he can be evaluated. Evaluated where, well, the er of course. On a Saturday night so with traffic it would have taken me at least an hour to get there and who is going to get his 6'2" raging body into my smallish car, etc.
OR- you (me) can call bcbs and see if they will approve transport. Maybe calmly I asked what does the doc think? He had not been contacted. I said that if I had the ability to get H in the car and drive him around in the middle of night why in the world would I have placed him?
I said that I was staying put until the hospice doc called, which he did. He said the trauma to H would be worse (transport) and H did not really need the er anyway. He ordered a minor change of mere and asked for hourly monitoring until he visited the next am.
Emily I don't have any advice other than to share with you how it played out for me.
PS should have read minor change of medication. And I was also told that once a call was received the paramedics are required to respond. Maybe the hospice doc could write an order for you to be called first.
Sorry this is a mess but I am on my tablet and can't get the edit function up.
I think you should have a powwow with your hospice team. and go over the the 'what ifs' of injury and how it will be cared for. I would have thought a nurse or dr from your hospice team would have been called out first to review DH. then a decision made. sounds like maybe a different hospice could be signed on if you are not pleased with the one you are using. not all hospices OR drs are alike. I have been thru a couple myself esp drs. it was my impression if hospice ORDERS he be transported to a facility then its their financial responsibility to pay thru medicare/medicaide. also that if you want to take them to an ER you should notify hospice prior and fire them so your own medicare medicade would begin again and pay for your care. then you can reassign benefits once again to hospice if you choose to rehire them after the incidence. once benefits are assigned in writing by signing onto hospice, you have to cancel that, some accept verbal some in writing only, to start getting benefits individually again per medicare or medicaide. but check with your hospice team and or medicare directly. there are guidelines on the medicare website with regards to hospice and how it works. and by all means have them post DNR an poa on his door and a copy to local facility that would be used and of course hospice should already have one in place.
talk to your team. you should be able to iron this out easily.
I have, as of today, powwowed with the hospice nurse, the director of the memory unit, and the main nurse at the ALF, ALL of whom completely are on the same page with me about how the incident should have been handled. The problem, apparently, was that a triage nurse at hospice, when the staff called, directed them to call 911. Why? I don't know. This needs to be looked into. It was a clear mistake. Then, once 911 is called, a set of rules are in place whereby the EMTs have to carry out certain protocols.
Anyway, the Advance Directive, designating me as health-care decision maker ARE now up front in his file AND I had just filled out a specific form stating preferences such as Palliative Care Only, and Do Not Transport. His DNR order is in place...so none of this should have happened.
What needs to be done, is the staff on the floor needs to be educated as to how to proceed henceforth, because hospice cases and other cases are not the same. A big sign might help. At the very least, I MUST be called before 911 is called, because then I can at least make sure that the RIGHT people at Hospice have been contacted.
At least I was able to put a stop to it last night. Now I need a nap.
Emily: I am so sorry that you had to go through this. I had a similar experience, except hospice didn't cause it. My DW fell and broke her hip in the nursing home. Ok. They (the nursing home) sent her to the wrong hospital. The one that didn't have a contract with our hospice people. You talk about a nightmare. I had to cancel hospice that same day or medicare wouldn't cover her hospital stay. Of course, she never got up and when she passed away two weeks, we weren't able to have hospice to help us.
Because my husband was not on medicare due to his age and because he had not been on ssdi for the qualifying time I was told pretty much what Dean said. Not only for er but even to go to urgent care, he would have had to sign off hospice and use bcbs, then, upon transfer back to alf he could be recertified for hospice. It sounds like making things more difficult but apparently because hospice is a medicare benefit it has to be this way? I was also told that this bounce back and forth between insurer and hospice is generally pretty frequent. Like we need more stress.
Abby: We were told that we had to be off of medicare for 24 hrs before we could re-enroll in hospice. That would have been taking a terrible risk. What if we had to go to the ER during that time. Neither medicare or hospice would have covered us. Couldn't afford to take that chance.
Emily and other caregivers reading this. I have learned from experience, carry a copy of any legal paperwork that you have WITH YOU AT ALL TIMES. It is so frustrating to have to run home or have someone fax over ANOTHER copy. Prayers for you.
Good idea Phranque: When my DW got Sepsis and we weren't in the hospital where we had already produced the DNR, the hospital demanded a DNR within the next five minutes or they were going to put her on life support. That was the last thing that we wanted to happen. So, we were fortunate enough to get one faxed to the hospital just in time.
emily--Steve was on Hospice several years ago and when he first moved to the ALF, due to a big weight loss. At that time, I saw absolutely no advantage to the Hospice involvement (both at home and at the ALF). Two years later, he may perhaps qualify again due to disease progression and further weight loss, but I've been trying to evaluate whether it would be worth it. Like Jeff, he's stage 7 and still ambulatory. My point is--is it really an advantage at this point for Jeff? I'm wondering if adding another layer actually might add to the confusion if an emergency situation arises--like when Jeff hit his head? I'd like to hear your opinion.
Several months ago, when Steve was given a strong painkiller, he went into delirium and was falling frequently. Since he's not on Hospice, the nurse called me at 1 a.m., said Steve had fallen a few times, and that they had called the portable X-ray service. He wanted to know if they should send Steve to the ER. I asked what Steve was doing and the nurse said "sleeping". So my answer was NO. Subsequently, the physical therapist recommended I buy a soft helmet to protect Steve's head if he falls and/or bangs his head on the wall. He gave me a source and I did it (it was about $160 and I'm trying to get Medicare to reimburse me.) Steve isn't crazy about wearing it--he sometimes takes it off--so they only put it on him if it seems he's having a bad day and might crash into something. I will do anything to prevent a potential ER visit and/or hospital stay.
Yep Marilyn...I will too--do anything to avoid the ER/hospital.
As for the value of Hospice, at this point. In our case I'm going to say yes, it's valuable. This is because 1)There are regular caseworkers coming several times a week to help with various aspects of Jeff's care. Not that the ALF staff wouldn't be doing these things anyway, but it's nice to know that a little of the pressure is off, and there are more hands on deck. 2)The main Hospice nurse for Jeff happens to be a woman whose father lives just a few doors down from Jeff, in the dementia area. So, she's there frequently, and keeping close tabs on how the Hospice patients are doing, whether med tweaks would be advisable, etc. Again, this would be taken care of, but I really appreciate her input, expertise, and advice. Also, she's another advocate in the whole issue that arose--that is, to make sure the regular staff knows how to handle falls and similar episodes which trigger them to launch certain interventions (911, specifically) which shouldn't be launched.
Another service that Hospice has supplied is to take the initiative in ordering the portable x-ray service, when it was needed.
It seems like the main problem here is that the staff needs to understand NOT to call 911 right off the bat, and I've been assured that this is being covered with them.
So I'm in favor for now. Hospice supplied a wheelchair a month or so ago, and it didn't seem he would sit still enough, but this week he seems to be off his feet more, and they've been using it a bit to get him to meals. It reclines and gives him a comfortable place to just hang out. It's too soon to call, but it seems possible that Jeff is--due to issues related to his falls, energy, cognition, general slowing, is settling into wheelchair usage a bit.
Not that we want to limit the ambulation of people who can still do so, but he's reached a point where it's often more hazard than benefit.
emily, seems like all "professional" caregivers (aides, cna's, etc) are trained to call 911 first. I think much of it has to do with the liability issues. When we had a substitute aide here I asked him how would he handle a situation with Rich if he fell, escaed, etc. In every scenario his answer was to call 911. I was surprised and told him he needed to notify me first and I would make the decision on how we would handle the situation. In fact when Rich escaped one night from the house, the substitute aide immediately wanted to call 911. I said we would look for Rich first and if we couldn't find him within a reasonable time we would call 911. We found him in the neighborhood 3 houses away.
One of the things I liked about Hospice was they took the burden of ordering all the medication Jim needed before he passed. And, they added various medications when he needed them. Also they worked closely with the visiting nurses association paid for through the VA and coordinated his care with them. That really took a burden off me and provided all the supplies he needed for from bedding to bath, etc. All this help allowed me to keep my dh home until the end. Of course when he started down hill he really went fast like within just a few months.
A friend, whose husband was was taken to ER yesterday from ALF, told me that in order to have a Do Not Transport order obeyed in our area the person has to be on hospice. She is meeting with hospice tomorrow (he was on hospice before). And she had to call the emergency room to tell the doctor to not do a CAT scan of his head (he fell and hit his head). His is late stage.
The facility where I really wanted to place my husband but could not because of anticipated cost had a standard policy like that, paulc. I don't think it went as far as to transport but did in terms of calling 911. It was not a palliative care only and although some patients were on hospice the percentage was much smaller than in the alf where he was located.
After my incident above, the administrator at alf said that staff was confused especially because every other patient had medicare coverage while my H was still covered by BCBS.
Hospice provided him with a deluxe wheelchair, sized so that he could not drag his feet and an extra long bed.
Because of my own stress I may have misunderstood some things. Like this one: I was told he would never walk again and this knocked the emotional wind out of me. I guess I thought the attempt would be to transition him to a walker. I was told that walkers cannot or should not be used for AD or FTD patients. I got that feeling where your world kind of turns over and wondered if this was hospice policy, ALF policy or just a mistake.
dean, I was told that if there was a transport H would be signed out of Hospice immediatly and private insurance would take over and be responsible until transport back to ALF. But, if he was returned within 48 hours, there was no interruption in service.
Five days before Lloyd died, he went to the ER, but he had fallen down the stairs and through a window in the landing. The curtains and blind protected him from cuts, but the impact injured him. They gave him 2 mg of ativan in the squad. Once he got there, they decided he needed a CT scan and claimed it would take 10 minutes. Almost an hour later they came out and said they had to give him 4 more mg ativan to do the CT scan. If I had been consulted, I would have never allowed the extra ativan. That CT scan was just not worth it. There was no information from that CT scan that would alter the outcome of this frikken disease. I know the Alzheimer's killed him, but I do occasionally wonder if he could have pulled out of it if he hadn't been over-medicated. I do not see the point of Ct scans in this situation. They are very expensive. I was told he could be bleeding into his brain on prior visits and actually was given the option (which I fought for). I even had to sign papers saying I would not allow it. Dying from a brain hemmorhage would be merciful in most advanced cases od this disease.
On Friday I took the wife to meet with the psychiatrist who prescribes the anti-depressants and Klonopin because he has to see her once a year to renew the prescriptions that TRY to control her constant crying.
We were discussing what she was currently taking and what might be better and he tried to tell me that he was concerned because one of the meds she is either currently taking or one he wanted to change to has "sudden death" as a side effect.
I told him I did not see that side effect as being a 'problem'. I guess nobody had ever told him that before and he then told me that they don't do euthanasia. I replied that there is no reason to extend this.
Linda--that's exactly it. What if he bumps his head and has internal bleeding? If they take extraordinary measures to "save" him from that, he's still going to be more brain-damaged than he already is, and he already is stage 7. There is no reason. Comfort is paramount. Sustaining some version of life at all costs is not. That's where I am anyway.
I hear you, Emily. He needed to "go" to release him from this zero quality life. I would have taken care of him forever...and it probably would have killed me somewhere along the way. God knows I miss him each and every day, but he is in a better place and not suffering or frustrated anymore. His dying was for him, not for me. It happened in a way that I prayed for - fast, although not necessarily totally painless.