Hospital is Manipulating Us??????

[LoraJ]

Cliff notes version for those of you not familiar with my story:
-Boyfriend's dad was diagnosed with colon cancer in March
-He does not have insurance. He's getting charity care and we're trying to get him medicaid.
-Last week he had exploratory surgery and they said cancer spread to his stomach, nothing they can do, find hospice care.
-he's been in the hospital for the last 3 weeks. We took him in because he couldn't keep anything down.
- Doctor won't release him until he has a safe place to go where he can be taken care of.

So, we've been in the process of figuring out where he should go, plus waiting for documents we need to arrive to get the medicaid. While we were at the hospital tonight, the general doctor calls my boyfriend. He tells us that the hospital is giving him a lot of heat and they need to get his dad out of there and why is he keeping him there.

Then he goes on to say, that the DNR is not right. We were lied to about the way it was written up. We didn't want a feeding tube, but wanted to keep him on his IV (fluids and vitamins) and his tube that takes stuff from his stomach so that he isn't throwing up every time he moves an inch. The nun who helped us write that up said that fell under the keeping him comfortable definition. The nutrients part would be if there was a feeding tube.

So the doctor is telling us the hospital wants to send him to hospice that will not provide him with the things he needs to truly be comfortable (specifically that tube). He says people are coming to see his dad during the day and talking him into things he shouldn't be agreeing to. Their definition of comfort care is just pain meds. So we're going to re-write this tomorrow. And apparently, the nice nun lady who seemed to be such a help last week in writing this up, was screaming at the doctor today. Not sure about what since he told my BF over the phone and it's hard to understand him.

I'm not sure of all of the details, but his doctor said that over the weekend, someone from the hospital was changing his dad's charts. How can they even get away with this?

So last week, the surgeon was telling us there is nothing we could do. Now the general doctor is saying we should get him to another hospital for a second opinion because maybe there is a chance for him.

I am just so confused right now. I just don't know who to trust. I'm all for getting him over to the other hospital. That's where we wanted him in the first place. But I just can't get over all of this other BS going on.

We're both taking off work tomorrow so that we can go to the hospital and try and figure everything out. Apparently the doctor was yelling at our social worker today for being so incompetant. Ugh this is just such a big huge mess. We're stressed out enough dealing with everything and it just gets worse and worse. The doctor kept going on and on about manipulating us and his dad into things that are not in his best interest.

We're supposed to meet with some doctor who is a bio-ethics something? What exactly is that? The general doctor mentioned something about the hospital hiring someone to do whatever they can to get the patient out of the hospital. So we're kind of suspicious that this is that person. Because someone was telling his dad about spending the rest of his life in a nice place where he can look at mountains and puppies or something.

ugh my head is spinning!!!!!!

 

[chyam]

Please........check into the hospice, I don't think you are getting all the info correct about them. They were absolutely wonderful for my mother, who also had colon cancer that had spread, ANYTHING that she wanted and needed they handled, they even visited her at home when she didn't really need anything until near the end. I cannot say enough good things about this organization.

 

[Caradana]

I am totally confused. Did another hospital agree to take him? I find it hard to believe that a hospice would deny a feeding tube to a patient who remains articulate, albeit hard to understand. I'm unclear as to how a bioethicist fits into this - do you have any sense about what specific issue this person will want to discuss? I assume it's larger than the DNR?

Maybe it would help to recap this:
- Where does the hospital want him to go?
- Where do you want him to go? How does it differ from the hospital's choice?
- Will the place you want to send him take him, given indigence?
- What does your boyfriend want to do?
-

 

[LoraJ]

Please........check into the hospice, I don't think you are getting all the info correct about them. They were absolutely wonderful for my mother, who also had colon cancer that had spread, ANYTHING that she wanted and needed they handled, they even visited her at home when she didn't really need anything until near the end. I cannot say enough good things about this organization.

We're still going to, it just has to be in a nursing home.
I'm just so confused about everything we are being told from all sides.

 

[LoraJ]

I am totally confused. Did another hospital agree to take him? I find it hard to believe that a hospice would deny a feeding tube to a patient who remains articulate, albeit hard to understand. I'm unclear as to how a bioethicist fits into this - do you have any sense about what specific issue this person will want to discuss? I assume it's larger than the DNR?

Maybe it would help to recap this:
- Where does the hospital want him to go?
- Where do you want him to go? How does it differ from the hospital's choice?
- Will the place you want to send him take him, given indigence?
- What does your boyfriend want to do?
-

I'm totally confused too.
By definition, hospice care is basically a home health aid that comes by a few times a week. They also provide 24/7 on call nurse and counseling.

- Where does the hospital want him to go? - At this point I am not clear on this. Hopefully we will find out tomorrow. Last week they wanted him to go home and have us care for him 24/7. Today someone told his dad about going somewhere where he could look out the window at mountains and be able to pet puppies or something like that. Not sure what place they are talking about. But they want him only to have pain meds. No IV fluids or anti-vomit tube.

- Where do you want him to go? How does it differ from the hospital's choice? We want him to be where he can see mountains and pet puppies. Where he'll be able to get the IV fluids and keep the anti-vomiting tube in.

- Will the place you want to send him take him, given indigence? Not sure. There was a place I had talked to last week that would take him but we would have to pay out of pocket and get reimbursed by Medicaid.

- What does your boyfriend want to do? We both want to see what we can do about getting the second opinion from the other hospital. Not sure what the process would be to get him there since the doctor rambled about it over the phone tonight. It will be something we will discuss with him tomorrow.

I have no clue about the bioethics doctor either. That's another thing we have to find out about tomorrow. It's so hard to get a straight story between what his dad says (heavily medicated) and the doctor (heavy accent).

 

[Snow Brite]

I have been following your story and this is just ridiculous. You need to go to the Chief of Staff or Hospital Administrator tomorrow and get answers. It almost sounds like you are caught in the middle of something political with the doctor, social worker and administration. Explain the situation to the person in charge of the hospital, tell them you all want the same goal and let them know your concerns:

1) You want to get Dad out of the hospital as soon as possible, but are getting no help from the Social Worker in finding a placement that will meet his needs and that is financially feasible.

2) The patient advocate has not returned your calls for assistance.

3) You have been told that your Dad's medical files have been altered and this concerns you a great deal.

4) You cannot get a straight answer from anyone, spent hours and energy crafting a DNR with the help of someone you were told knew what they were doing (the nun) and now find out it is not right.

5) You understand that people have been coming in to talk to Dad about choices he can make when neither you or BF (who has the power of attorney) are there. All discussions of this sort should be when he is there as he is going to be making the choices.

6) You have gotten a terminal diagnosis and want and deserve a second opinion in a timely manner. No one should have to accept a terminal diagnosis without a second opinion.

7) Ask how the hospital will be answering these concerns and by when and that you want it all in writing. That should put the fear in them.

Did your BF's Dad have a doctor before being admitted to the hospital? If so, talk to him and get him involved even if he doesnt have hospital privledges at this hospital.

 

[LoraJ]

I'll try his last doctor, but she's pretty useless. My boyfriend has called her several times and she would never return his calls. The only time she ever called was to say his dad missed an appointment. But we had called the cancelation line the day before when his dad was in the emergency room and they were about to admit him. Oh yeah, BF asked her to call anyway to talk to her about the new hospital ordeal, but she never returned that call. But miss an appointment she calls.

I am going to write a list of questions to ask tomorrow to the highest person I can. Apparently his doctor has a meeting with the vice president of the hospital tomorrow who is also trying to get him out of the hospital asap.

If the social workers had worked with us and not against us, maybe this all wouldn't have been an issue.

 

[phillybeth]

I'm totally confused too.
By definition, hospice care is basically a home health aid that comes by a few times a week. They also provide 24/7 on call nurse and counseling.

There are inpatient hospices as well- they are NOT nursing homes. Check with your local/regional cancer treatment center- they will have the info for you. A regular nursing home will NOT give your FIL the level of care he deserves.

 

[LoraJ]

There are inpatient hospices as well- they are NOT nursing homes. Check with your local/regional cancer treatment center- they will have the info for you. A regular nursing home will NOT give your FIL the level of care he deserves.

The place we'd prefer he goes to is two blocks away from us. They have it all there, nursing, hospice, rehab, assisted living. If we can only figure out a way to get him there.

 

[Caradana]

Lora, do you have a savvy, smart, pragmatic friend who can accompany you tomorrow?
I wonder if you might have more success with an advocate by your side to help you make sense of your options.

 

[LoraJ]

Lora, do you have a savvy, smart, pragmatic friend who can accompany you tomorrow?
I wonder if you might have more success with an advocate by your side to help you make sense of your options.

Nope. Unfortunately there is only stupid me and my equally stupid boyfriend available.

 

[Pea-n-Me]

I would suggest requesting a "family meeting" with all parties involved to be present so things can be made clear and decisions can be made. Make a list of issues you wish to have clarified. Keep the tone cordial, it will be most conducive to a good, productive meeting. Keep that as the focus right now, don't rehash who did or didn't do what at this time, just where do we go from here.

It sounds as if the nun was helping FIL with his wishes, sort of like a "living will" (not sure why a nun would be doing this; is it a Catholic hospital?). A DNR/DNI is a physician's order that states, based on the patient's wishes, whether the person wishes to be resuscitated and/or intubated in the event of a cardiopulmonary arrest. If a patient is DNR/DNI then that patient would not be resuscitated. It does not mean that comfort measures or other care should be withdrawn. There is a lot of work going on around these very issues within the disiplines of medicine and nursing. Most people who have widespread and/or terminal cancer choose to be DNR/DNI, but not always. It is an individual decision, and should not be forced on someone against their wishes. Within the DNR/DNI conditions can be added such as vasopressors and chest compressions ok, but no shock, etc.

I am of the mind that a second opinion is a good thing. If it were my family member I would go for it. The insurance issue will make it a bit tricky perhaps, but go to a major cancer center and explain the situation, see if they'll get him in to see a specialist in colon cancer.

Re: hospice. It sounds like you are describing hospice as a "facility" - when in fact, hospice is actually an appoach to care. http://www.hospicenet.org/ The type of facility you describe sounds to me like a palliative care center. I don't know why they would not be able to manage an IV and/or a nasogastric tube, but I guess it would depend on the skill level the facility is meant for. Call and ask to speak with the Director of Nursing, also see if they can send you their brochure and admission packet ahead of time so you can look it over and see what the facility is designed to do (and whether it is right for FIL).

Do you know anyone on staff at this hospital, where FIL is now? If so, I would ask them to help you figure this all out if they could. Also, I don't know how the nurses are in this hospital, but ideally FILs nurse should be able to help you sort it through. You could always go to visit the nurse manager and ask for support there too. Move up the ladder to the Director of Nursing if need be. Nurses are your advocates, but in some facilities they are not empowered to act as freely as they may be in other places.

I'm not sure why the "general doctor" is telling you things that are accusatory and inflammatory about other members of the care team. It doesn't seem at all helpful to the situation at hand, and certainly doesn't help to instill your confidence in anyone. He should be leading the team in all of this. He should be seeing FIL daily and directing all team members in the plan of care via his notes and verbal communications. Has he been doing that? Why all of a sudden all the pressure to get FIL out of there? I don't understand about changing the chart, either. Changing what? Deliberately entering false or inaccurate information is illegal.

the nice nun lady who seemed to be such a help last week in writing this up, was screaming at the doctor today.

Very interesting (and perhaps telling ). I'm trying to picture it.

An ethicist is an onstaff person specializing in difficult medical/legal/ethical situations in the hospital. There is usually an Ethics Team. Cases are presented to them and they discuss them and try to come to the best, most "ethical" solution for all involved. This is generally speaking, I can't say exactly what it is like in that particular hospital. I wouldn't write off the social worker just yet, or just because the doctor yelled at her. Seems that that doctor is doing a lot of yelling - maybe it's not the other people, but him. Just a thought.

Hope this was helpful and not more confusing. I feel for your FIL's situation, it must be very difficult not knowing who to trust. It also makes me sad to think that people can have these types of experiences, especially when he's so ill.

Good luck tomorrow.

 

[DVC Sadie]

If you are looking into a place where your BF's dad can go to pet puppies and look at mountains please realize that those types of places can cost upwards of 6,000.00 a month and medicare does not pay all of it.

It sounds as if the hospital is trying to get your BF to take his dad home and to have hospice come out and basically treat him for pain management so he can die at home.

If you and your BF would rather have him placed in a nursing home instead of taking him home then you need to tell them that. The nursing homes I have seen do not use feeding tubes for patients who have a terminal illness such as certain types of cancers.

 

[Pea-n-Me]

his tube that takes stuff from his stomach so that he isn't throwing up every time he moves an inch.

Just to clarify, he does not have a feeding tube. He has a nasogastric (NG)tube, which is attached to suction. It decompresses the stomach and removes stomach contents and secretions. Without it, as the OP says, he would be very uncomfortable and possibly vomiting. He is not eating at this time, presumably due to the stomach cancer.

 

[LoraJ]

Pea-n-Me,
I have definitely had thoughts that the doctor may have some sort of ulterior motive.

I think the nun (yes it is a catholic hospital) was helping with his wishes, but I think he was thinking of it as if he were in a vegetative state and she was thinking of it as now. We'll spend some time tomorrow redefining everything in it so that there will be no confusion. I know he meant it as if he has a heart attack or anything like that he doesn't want to be on a reperator. But I think they are using what he said as his condition is terminal now so his body can go on its own now. If that makes sense.

I don't know anyone on the staff. The problem with the social worker is that they haven't been easy to get in touch with. If they want us to fill out paper work, instead of calling us and telling us they need us to do something, they just wait days for us to call them. When I asked questions about getting the medicaid taken care of, she said "it takes 5 months to process so don't even bother".

And the way you describe hospice is what I understand it to be too. The people at the hospital want him home which we can't do. The doctor wants him at an inpatient hospice like the nursing facility down the street which provides such care.

Hopefully we'll be able to get this all sorted out tomorrow. I have been writing down everything that has been said here, especially the questions to ask. You're all so helpful. We sure are learning a lot from this experience. Every time I talk to my parents I tell them they better have all of their health insurance and finances in order because I do not want to go through this again.

 

[lsyorke]

You need to clarify what his prognosis is. Hospice is for patient who are not going to survive for 6 months. Hospice will not give IV fluids, since that only prolongs the inevitable outcome. They would probably do an NGT IF it is for comfort of the patient. If you stop IV fluids those stomach fluids would also decrease. This would require a documented terminal diagnosis.

If you're looking to continue IV fluids and gastric suction then hospice is probably not the way to go(this would be considered life sustaining and not in the hospice concept). Some long term care facilities will do IV fluids, but not many that I know.

Sounds like you have conflicting physician information. Meet with the ethics doctor. He will have to evaluate ALL information and talk to all parties involved, which is what you need to make an informed decision.

 

[Pea-n-Me]

I think the nun (yes it is a catholic hospital) was helping with his wishes, but I think he was thinking of it as if he were in a vegetative state and she was thinking of it as now. We'll spend some time tomorrow redefining everything in it so that there will be no confusion. I know he meant it as if he has a heart attack or anything like that he doesn't want to be on a reperator. But I think they are using what he said as his condition is terminal now so his body can go on its own now. If that makes sense.

It does make sense, or, at least I should say I understand why FIL may have blended the two together - it happens often. You have so much information coming at you, you can't remember who said what or what they were even talking about sometimes.

Generally, the physician discusses with the patient their wishes about "code status" (i.e. DNR/DNI). Others can talk about it too, but the physician has to be very clear on it as only he or she writes the actual order. Without a DNR/DNI order, the patient would be a "full code".

I want to stress again, though, that even though a terminally ill patient has a code status of DNR/DNI, it should not necessarily mean that care is withdrawn. Care is still provided.

Things could be different than I know them due to it being a catholic facility. I would think that nun risked getting in a lot of trouble by yelling at that doctor (never good to do unless you're in a back room somewhere not in front of patients and families). She must have been very passionate about what she was doing for whatever reason. My guess would be she was advocating for FIL. It would be interesting to hear what she has to say.

 

[Hannathy]

I don't mean to sound crass but everyone needs to remember this man has no insurance, no funds, no government type insurance. My father died from cancer and he had very good insurance, medicare, and assets and it was very difficult to arrange his care.Many places have waiting lists and private hospice live in centers are expensive. My Mother still had to pay to have private caregivers come in even with Hospicecare when he went home. The hospice director told me that we should take leaves from work and care for him because they did not provide all the care needed or pay for private aides. If he had been destitute we still could have brought him home or get on the waiting list for the county nursing home. Hospice will give you so many visits but it isn't 24 hr care. Talking about getting second oppinions from specialists without any way to pay is wishful thinking and not required by the hospital. Many specialists don't take medicaid, and he doesn't even have that yet. and no hospital is going to accept him as a transfer. If you get admitted to a hospital they have to treat you at an the current and acceptable level they do not have to offer you anything extra including outside consults or private care.

If you want to have choices in your healthcare you get insurance if you do not then you have to be willing to accept care that others decide is appropriate. I'm sorry but I have seen your posts before and I am very surprised the hospital has not pressured you more to discharge him by now.

 

[palmtreegirl]

I think you should definitely try and get a second opinion, if possible. I'm sorry they're giving you such a hard time, all the red tape and passing the buck can be maddening when all you're trying to do is help a loved one.

I hope everything works out better for you tomorrow, I wish I had some advice.

 

[Pea-n-Me]

Talking about getting second oppinions from specialists without any way to pay is wishful thinking

Some hospitals do provide "free care", and that care is comparable to the care that anyone else gets. Money is available, albeit it has become less and less over the years. Major cancer centers have many, many donors and would not turn someone away based on their inability to pay to the best of my knowledge. Granted, as I said before, it may be more complicated, but free care is alive and well at many hospitals. Obviously, funds are not unlimited, but are designed to get someone over the hump until medicaid can kick in.