Hospital is Manipulating Us??????

[LoraJ]

I understand what you are saying Hannathy. The hospital we want him to go to already has his whole medical history. His surgical oncologist is there and he was supposed to go there anyway to have the tumor removed. So it's not like it is a brand new hospital. I have been trying to find out how much in the loop the surgical oncologist is in, but I haven't gotten a clear answer. Hopefully that is somethign I can find out tomorrow.

If they can't take him, then so be it. But it's worth a shot. He does get charity care at least, so it's not a total loss for the hospital.

Just writing everything down tonight has really helped me sort the situation out. It's really all very overwhelming. But I have more of a clear head of what to do now.

My boyfriend asked me on the way home tonight how do we know who to trust at the hospital. I told him we'll trust whomever has his dad's best interest the most.

ETA:
According to the fact sheet of the place we would like to get the second opinion from:
74% of inpatients are Charity Care, Self-Pay, Medicaid, and Medicaid HMO
So there is a good chance that they'll take him, or at least I would think so.

 

[Maleficent13]

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.

Just wanted to address this. Obviously, not all hospices are run the same way, but I have worked for a hospice for many years and it is their policy to do anything and everything to provide for the comfort of the patient...the only thing they do NOT do is actively treat the disease process. An NG tube and IV fluids are NOT treating the disease process and therefore were perfectly acceptable. Chemo, for example, WOULD be treating the disease process and therefore would not be acceptable for a hospice.

My advice to the OP is to quit trying to talk to the hospital or anyone affliated with it and go directly to the hospice and talk with them. They are going to be the most knowledgable about what they can and can't provide, and they also employ social workers whose sole job is to gather information and find alternatives for the patients. Also, they will have a medical director who can review the father's charts and be able to provide a fresh opinion on the diagnosis. In addition...hospice workers are the most kind, compassionate people I have ever had the pleasure of working with...they are truly patient advocates.

JMHO. Much luck, Lora.

 

[LoraJ]

Good advice Mal,
I had actually called the Hospice program in the area last week. They confirmed for me that the place down the street would be able to give him the care he needs. I called them and left a message but didn't get a call back. I had also called Gilda's Club, and they gave me the number of someone who could help us place him somewhere where he doesn't need any insurance. I'll be giving him a call today.

We're going to the hospital soon because we're supposed to meet with the doctor and the ethicist. If there's a chance of transfering him to get a second opinion, we'd like to do that. But at the same time we're trying to do what we can to keep them from tossing him out on the street. They're really coming down hard on the doctor. We also need to get the DNR and living will re-written just in case something happens in the meantime. But I am pretty much done with the hospital social worker and just about everyone there except for the nice nurses.

 

[disneyfanz04]

I am with everyone else about the Hospice Facility. When DH's Grandfather was diagnosed with cancer, he was in the hospital for a long time...and the nurses were so ignorant and mean to him, as soon as he went to Hospice, the nurses there were AWESOME...they made him so comfortable, and were so nice to the family. Even though he only made it not even 48 hours, I cannot say enough great things about the nurses and care that he got while there. PLEASE chech into it, and do whatever you can to get him into Hospice care. How much time have they given DFIL, do they say there is no chance of recovery???

I wish you the best of luck, and prayers & PD for DFIL, you and DBF.

 

[lbgraves]

So sorry that you are going thru all of this. My MIL was diagnosed with stage 4 colon cancer 5 years ago. She has been battling it ever since (I honestly do not know how she is still alive) and I have battled with her insurance company because they keep denying her chemo treatments...but that is another post entirely. Even if you have insurance, you can have a very hard time getting your loved ones the proper treatment for cancer.

One thing that I found that helped me was calling the American Cancer Society. They are there for patients & their families. I received alot of information regarding the disease that we didn't know & the person I talked to was very supportive. They also directed me to patient advocate groups who helped me prepare for the fight against the insurance company. I was never charged for any of the help that they gave me to help my MIL. This might help you to sort thru all of the information you are being given. They can help you make a plan.

 

[Pea-n-Me]

Thank you, Lisa, for bringing up the American Cancer Society. It is truly a great organization that benefits people with cancer. You don't ever really expect to need their services, but when you do, they're there. I am getting ready to do my second Relay for Life to benefit the ACS. I am happy to do this because I myself benefitted from their services two years ago. Relay for Life events are going on now throughout the country. Nice to hear about your MIL.

 

[RitaZ.]

When my dad was in the final stages of cancer (brain tumor), we opted for hospice. His neurosurgeon (very well respected) suggested surgery one more time. His oncologist couldn't believe the surgeon recommended surgery again. We all knew there was no hope for recovery.

Anyway, the process of getting my dad into hospice wasn't anywhere as difficult as you are going through. The nurse came to my home to meet with me and explain the process and their role in it. Their role was to provide comfort in the final stage. Their nurses were the most compassionate and caring nurses I've ever come across. BTW, there were other patients in that hospice that had no insurance and no money, and they received the same care as my dad.

The $ aid is there, it may not be advertised, but you have to look for it and ask. Call the Catholic church, they have programs to help those without insurance and money. The majority of their funding for these programs comes from The United Way. Give it a try, explain your FIL's entire situation and they may be able to help you or direct you to someone that can.

Good luck!

 

[RitaZ.]

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.

That's right, show no compassion! Kick them all to the curb!

 

[Nancy]

Lora, I wish you lived closer I would send my MIL over to help you! She is a social worker and before taking her current job with the foster child program she was a patient advocate for the elderly in nursing homes, hospitals, etc. She stinks at running her own life, but man can she get results when she is helping others.

I hope everything works out ok for your BF's dad, I know how hard this must be on all of you.

 

[Cool-Beans]

I do not understand why whatever is being administered by IV is being debated. Is he being "fed" through the IV or getting electrolytes or what (it will be labeled on the bag)? And who wants to discontinue it and why?

It sounds crass, but the hospital wants him out because they are losing money on him and/or may need the bed for someone they can help.

Some people want to do everything they can to prolong the life of their loved one, hoping for a cure. Others want them to go quickly to avoid any possible long-term suffering. I firmly believe that both decisions are made out of love, and hope you get the help you need with whatever course of action you decide to take.

I'll tell you what I'd do if it were my family. I'd go with the hospice. No way would I put a loved one of mine in a long-term (non-hospice) care facility. And I'd shoot myself (literally) before I'd go to one. Those places are nice for the family, but no place for a sick person to be. (OK, technically, if it were my family, I'd take them home and do it myself, but you get my point.)

Social workers are notorious for doing nothing. You might try calling the United Way's First Call For Help to find an agency that will help. The number is 211 in most areas. If that doesn't work, information will have the number.

 

[LoraJ]

Thanks everyone for sharing your stories.

We were at the hospital most of the day today. We first met with the nun, the social worker (stil useless) and the charge nurse. They are pushing hard for us to take him off the IV. All the IV is, is electolytes. Until someone convinces us otherwise, I would think being dehydrated to death would not be a fun way to die. He can't drink water because it will just get pumped back out from the NG tube.

They are going to send someone over from our first choice inpatient hospice facility tomorrow and he will be evaluated. They couldn't give us an answer on how long it will take to move him there. I hope they get him there before it is too late. I also hope some family members of his will finally let reality hit and come up here and see him.

We gave up on the second opinion deal. We talked to his oncologist and she said the biopsies came back showing the obstructions in his stomach were definitely cancer. She explained that his stomach just doesn't work anymore. We complained to the administrator who came to see us about the social worker.

Apparently some calls were made to medicaid about speeding up the process. So now it's just wait and see. Although tomorrow I will ask around about that some more.

Thanks again everyone. I will keep you all updated.

 

[lsyorke]

Contrary to popular belief, dehydration doesn't hurt. Maintaining a dying body with fluids just results in a prolonged dying process. Is hospice willing to take him with the IV fluids?

 

[LoraJ]

Contrary to popular belief, dehydration doesn't hurt. Maintaining a dying body with fluids just results in a prolonged dying process. Is hospice willing to take him with the IV fluids?

Not sure yet, we'll find that out tomorrow. Ultimately it will be his dad's decision whether or not to take the IV's off. I told DBF that he needs to speak with his family members (ex-step mom and his little sister, his dad's sister and his dad's dad) and see if any of them are coming up here for goodbyes. He isn't getting any kind of food either, so would he suffer from starvation?

 

[lsyorke]

If I can be blunt here.. with non working stomach there's not much else to do. To administer hyperalimentation(IV nutrition) would be basically feeding the cancer and prolonging the inevitible. I know how hard this has been for you and the hospital has not been forthcoming with help. Lets hope that hospice is will to accept him and you and your boyfriend(and his Dad) can find some peace in all this.

Having to make these decisions when finances aren't an issue is hard enough. To add that stress on top of it all must be agonizing. Prayers for all of you that this can be resolved quickly with everyone comfortable with the decisions made.

 

[Puffy2]

As an RN and former hospice nurse, I agree with the last post - the hyperal is definately over doing it for a hospice patient. There just isn't any point to it AND it is very expensive. You can still give fluids to him in a regular IV (normal saline or something like that as determined by the hospice doctor). Different hospices have different policies , but we have had patients on suction, and IV's. Having said that, I've NEVER seen a hospice patient "suffer" do to lack of fluids or food.

I'm not sure what is up with the one doc saying that "something could still be done" but the reality of it is, unless a hospital and doctor at another location are willing to take him (without insurance) there really isn't much you can do about it and I think it is only hurtful to you and your boyfriend to worry about it much beyond knowing that. Although a conversation with the nursing supervisor of the hospital might be in order since you have had another doc say that to you - just to get everything clarified.

 

[RitaZ.]

If I can be blunt here.. with non working stomach there's not much else to do. To administer hyperalimentation(IV nutrition) would be basically feeding the cancer and prolonging the inevitible. I know how hard this has been for you and the hospital has not been forthcoming with help. Lets hope that hospice is will to accept him and you and your boyfriend(and his Dad) can find some peace in all this.

Having to make these decisions when finances aren't an issue is hard enough. To add that stress on top of it all must be agonizing. Prayers for all of you that this can be resolved quickly with everyone comfortable with the decisions made.

I agree.

What does your FIL want to do? If he is aware of what's happening to him and, if so, has he been told how advanced the cancer is?

Is the rest of the family in denial or not aware of your FIL's state? It sounds like this is all on your DB and you. Maybe your DB can ask for their help, not necessarily financial, but emotional support. If not for you, then for your FIL.

Good luck and hang in there. This is a painful and difficult process.

 

[LoraJ]

He's aware of everything that is going on. The doctor who yesterday was saying maybe something could be done, now agrees with the rest that there is nothing else. FIL wants IV with fluids only, no nutrition. At least for now. BF doesn't want to decide otherwise until we know if family will be making there way up here and when.

FIL also wants to know if having no IV is the best way to go, but no one seemed to convince him of it, that he wouldn't suffer. Looking up info on the internet and of course there are those for it and those against it. Want to consult with otehr family members to get their input.

 

[RitaZ.]

Lora, .

 

[Pea-n-Me]

I am not experienced in Hospice. However, for the past 20 years I have taken care of many dying patients in the hospital. The basic IV, IMO, isn't really going to "make or break" anything. If it makes FIL (and family) happy and secure to have it, then they should probably not insist on taking it away (maybe you could compromise and run it at a very slow rate). Will it prolong suffering? Who knows. It's important for him to feel that his care team is not "giving up" on him.

The IV will keep him hydrated and his kidneys perfused, at least up to the time he goes into a multisystem organ failure (which is what will ultimately bring about death). I take care of primarily a cardiac population and I have seen the IV contribute to a buildup of fluids in the lungs, and that can be a source of discomfort and anxiety from not being able to breathe - that might be a consideration if he becomes short of breath. Of course it might be an issue if the facility he's planning to go to does not do IVs. Hopefully he will be kept comfortable with basic care, the NGT and as much pain medication as he needs.

Best of luck, will keep you all in my prayers. Thank you for being there for FIL and his son. It sounds like a really difficult situation.

 

[DISUNC]

Wishing Yourself , Boyfriend, B/f family & his father Peace.