[Rose76]

My boyfriend has been hospitalized for pneumonia 3 times in the last three months. The second time it was discovered that he probably has lung cancer. The third time I took a bunch of flack from a doctor at the VA hospital. They're getting tired of him showing up in the emergency room very sick.

Now the VA wants me to make him a "hospice patient." They say that will mean his problems can be handled at home and he won't need to go to the hospital so much. Here's my question: If he doesn't need to be in the hospital so much, how come they keep admitting him when I bring him to the ER? I must be a pretty good judge of when someone should be taken to an emergency room.

To me this is a bunch of double talk.

If my bf were a hospice patient, then I guess I wouldn't be able to bring him to the ER, without authorization from the hospice nurse. I guess the VA figures the hospice nurse would withhold authorization, and they wouldn't have to deal with us. To my mind, there is something fishy going on.

I put so much effort into being caregiver to my bf. Most of the time, he's comfortable and content. So I think I'm doing a good job. Now the VA is spooking me with all this stuff about how I need to hook up with hospice and stay away from the hospital.

I am demoralized by all this weird feedback I'm getting. Tonight I'm so discouraged and depressed. He gets more debilitated as time goes on. Caring for him gets tougher and tougher. On top of that, the VA seems to be telling me I'm not handling things well.

Maybe others who've had hospice for a loved one can tell me how that worked for them.

I feel like the VA has harrassed me during a difficult time. I was not expecting this.

[Wild Coyote]

Rose, I am very sorry you are going through this.

I have been following your posts and it surely seems like you take great care of your boyfriend.

I have never dealt with hospice directly. My neighbor has done so and we are very close. Around here, they don't refer anyone to hospice unless the person is expected to live less than 6 months. My neighbor's spouse was at the end of her life and went to a Hospice House, where she'd lived only 5 more days. I've had another friend referred to the Hospice House and she'd lived a month.

Do you have a similar option, a Hospice live-in center where they take care of their patients? Do you need him to have this type of care? Is his care too much for you now? Is his care too much for you if he gets worse?

If there is not a Hospice facility near you, then his care will fall, largely, upon you (at home). Hospice nurses usually don't do a lot when people are in hospice at home. They tend to do more toward the very end of life.

I tend to agree with you. I think I'd want the option of admitting him to the hospital if/when he gets worse, if there is no Hospice facility nearby.

Sometimes, this is, at least partially, about where we'd like our loved ones to pass: at home or in a hospital/facility. Yet, we must also consider if we are truly up to providing all of the care involved in home-based Hospice.

It's a lot to consider, Rose.

This is a very sensitive and a very important topic. I hope I have shown my deep respect for you and for your boyfriend. It's been my intention to show utmost respect and concern.

May you be at peace with your final decision(s).

I admire you very much. You've been a real trooper, showing a lot of love to your boyfriend. I am sorry you are both in this situation.


WC

[FallDuskTrain]

Rose, I admire and respect you so much.
I have been reading your posts and my heart sinks for you. Unfortunately, I have absolutely no idea about the VA and/or hospice system so I cannot possibly provide a helpful insight. But i know that you are always very level headed and you have a good handle of your emotions. This makes me think that your instincts about the double talk is accurate.
But please do know that I am thinking of you.

[unaluna]

(((Rose))) I think they are honoring and respecting your and his choice to stay at home. That is why they are saying it is time for hospice care at home. Then instead of going to emergency, specialized care or medication could be given at home by the hospice care personnel? I didnt think there was that much difference between the hospice care at a hospice center vs at home.

It seems it might be easier on the patient, as instead of deteriorating to the point where you say, okay we better take you to the ER, for example a change in temperature could be addressed immediately. Thats a simplistic example but you get my drift.

[*Laurie*]

Hi Rose, I encourage you and your bf to use hospice care. I believe you will both find it very helpful.

[luvyrself]

Originally Posted by *Laurie*

Hi Rose, I encourage you and your bf to use hospice care. I believe you will both find it very helpful.

----Im sure you want to spend your time enjoying each other as much as possible. This may be the way to do that. My mom is paying $15,000 per month for hospice care.
He earned the care he can receive. My ex husband served in Vietnam, and it is a relief to me that hospice would be available to him someday. Blessings to you!

Doctors can be pretty terrible at talking about these issues. I nearly came unglued at how insensitive they can be. They don’t understand what it’s like to hear this. They don’t understand emotionally feeling a fatal blow.

We weren’t ready for hospice and hadn’t given up yet when we were told. There were more options to be tried, but the doctors wanted us out of there and not taking up a precious bed.

I’m not sure if that is what you mean.

A Pallative care director finally came to talk to us about what it means. Talking out whether he wanted to spend all his time in hospitals undergoing procedures and being with all the tubes going in and such vs. being home and being with family and doing enjoyable things if possible and being made comfortable.

He chose the hospital because he didn’t want to give up.

But that was his choice, not theirs.

I know it’s hard

[Rose76]

What's different about our situation is that I'm a retired nurse and he gets better care at home from me than anywhere else. There is no actual hospice facility . . . just regular nursing homes.

The good news is that he's made quite a good recovery from the pneumonia. Hospice care could not have accomplished this.

I thank you all for your thoughtful responses above. I wrote a long post to respond, but somehow I lost it.

[*Laurie*]

Originally Posted by Rose76

What's different about our situation is that I'm a retired nurse and he gets better care at home from me than anywhere else. There is no actual hospice facility . . . just regular nursing homes.

The good news is that he's made quite a good recovery from the pneumonia. Hospice care could not have accomplished this.

I thank you all for your thoughtful responses above. I wrote a long post to respond, but somehow I lost it.

Oftentimes hospice sends people to your home (or to the patient's home) to help with care. That might give you a break, you know?

Originally Posted by Rose76

I am demoralized by all this weird feedback I'm getting. Tonight I'm so discouraged and depressed. He gets more debilitated as time goes on. Caring for him gets tougher and tougher. On top of that, the VA seems to be telling me I'm not handling things well.

Please don't listen to the VA. This is their MO. My brother gets his health care from them and I am terrified for him. I told him he will be dead if he keeps listening to them.

The only want people to die so they can go back to sleep and make their budget. I am afraid the VA is a very negative force and I am not sure it can be fixed as it is a real attitude among the workers.

If you think it is right to bring your BF to the ER.. you do so and laugh at their objections. They know the only way to keep you from doing so is to intimidate you. Tell them you won't be intimidated and they will stop.

[Rose76]

Medicaid does provide a home attendant for 30 hours/week. So I get breaks when she is here. The VA sends a nurse every three weeks who orders any equipment and supplies that we need. She also draws blood for labs. Also a nurse practituoner comes every few months to order all meds. So there is a lot in place already.

Hospitals are audited for certain statistics that they like to keep low. If they readmit someone for a diagnosis they just recently treated, it looks bad. They get audited for their "30 day readmit" statistic - how often someone comes back in the hospital less than 30 days after they were already in the hospital for the same thing. My bf had two admissions during February - both for pneumonia. That looks bad for them. Also they try to keep their mortality statistic low - that counts how many deaths occur in the hospital. Acute care hospitals don't want you dying under their roof. They would rather you due at home or in another type of facility, like a nursing home. That actually makes sense in some respects. General hospitals are not supposed to admit people they can't really help. Hospital administrations look at these numbers and pressure doctors to keep them low.

Emily, I'm sorry your brother has not been well. The VA has sure been guilty of some screw ups. I hope they do right by your brother. We've actually been pretty happy with the care in general. But I am mindful that there can be another agenda influencing things besides what is best for an individual patient.

[Wild Coyote]

(((((( Rose ))))))

[Wild Coyote]

I am thinking of you, Rose.
i am hoping all is going as well as possible.

WC

[Rose76]

I had a really good day yesterday. My bf is feeling pretty good. I am getting caught up on things I neglected. I feel hopeful.

[luvyrself]

Originally Posted by Rose76

What's different about our situation is that I'm a retired nurse and he gets better care at home from me than anywhere else. There is no actual hospice facility . . . just regular nursing homes.

The good news is that he's made quite a good recovery from the pneumonia. Hospice care could not have accomplished this.

I thank you all for your thoughtful responses above. I wrote a long post to respond, but somehow I lost it.

——I don’t want people to think patients can’t recover in hospice-that just isn’t true. My mom really bounced back In a private hospice. However, My partner is a vet so I’m so sorry to have to say this:
While I don’t know any particular hospice facility, he didn’t do well under va care in LA. I am talking about outpatient care, not hospital or hospice. I had to switch him over to private care.
So. I guess everything depends on what the patients goals are.

[Rose76]

I think hospice as a modality of care has its rightful place. The classic hospice situation is a cancer patient who has gotten to the point where further radiation and chemotherapy is more burdensome than the cancer those therapies are supposed to treat. Hospice then shifts the focus away from attacking the cancer and moves it toward treating pain and psychological distress. The patient and family accepts that the diagnosis is terminal and tries to make the best of the time that's left.

I worked as a private nurse for a wealthy lady who was getting chemotherapy to treat her cancer, which was terminal. The chemo made her horribly sick and she suffered after each treatment. She got chemo up until three days before she died. That's a good example of someone who should have been transitioned into hospice care.

Though my s.o. is now diagnosed with probable cancer, he is not receiving any treatment for it - no chemo, nor radiation, nor surgery. There are no "heroics" going on. He doesn't even have any pain. But he has gotten repeatedly very sick with respiratory infections . . . that had him feverish, extremely weak and mentally confused. I brought him to the ER for the URI. They admitted him, treated him with I/V antibiotics and discharged him feeling vastly improved. They did that twice in February. (Maybe he was discharged too soon the first time.) To my mind, that's an appropriate use of the general hospital. He is currently walking, eating heartily and enjoying watching movies and talking on the phone with his family. He doesn't need a special program to "make him comfortable." He is quite comfortable. He is quite content. I've had pneumonia. It feels awful. He was very acutely sick. Now he's not. He has chronic problems, including the newly discovered lung cancer. We're not asking for any big deal cure for that. A younger man would likely be a candidate to have a portion of a lung removed. That's not recommended for him, and we understand that and agree.

He's not in need of morphine, Ativan or Adderall. I don't need visits from a "grief counselor." Neither of us wants visits by some hired "chaplain" to tend to us "spiritually." We know where the church is. We've recently been visited, multiple times, by a clergyman of our own faith.
I think the hospice recommendation was premature. The palliative care nurse stated she wanted me to explain my "values." None of her business what "my values" are. I'ld like to know what she was fishing around for. She asked me right at my boyfriend's bedside - didn't I find that his dementia was getting worse with each illness? What was I supposed to say? "Yeah, he just gets further and further out to lunch . . . a little loopier every few months." These are the folks who are supposedly ultra-sensitive to feelings and respecting of dignity. It all struck me as kind of creepy. They come across to me as kind of cult-like.

[luvyrself]

Originally Posted by Rose76

I think hospice as a modality of care has its rightful place. The classic hospice situation is a cancer patient who has gotten to the point where further radiation and chemotherapy is more burdensome than the cancer those therapies are supposed to treat. Hospice then shifts the focus away from attacking the cancer and moves it toward treating pain and psychological distress. The patient and family accepts that the diagnosis is terminal and tries to make the best of the time that's left.

I worked as a private nurse for a wealthy lady who was getting chemotherapy to treat her cancer, which was terminal. The chemo made her horribly sick and she suffered after each treatment. She got chemo up until three days before she died. That's a good example of someone who should have been transitioned into hospice care.

Though my s.o. is now diagnosed with probable cancer, he is not receiving any treatment for it - no chemo, nor radiation, nor surgery. There are no "heroics" going on. He doesn't even have any pain. But he has gotten repeatedly very sick with respiratory infections . . . that had him feverish, extremely weak and mentally confused. I brought him to the ER for the URI. They admitted him, treated him with I/V antibiotics and discharged him feeling vastly improved. They did that twice in February. (Maybe he was discharged too soon the first time.) To my mind, that's an appropriate use of the general hospital. He is currently walking, eating heartily and enjoying watching movies and talking on the phone with his family. He doesn't need a special program to "make him comfortable." He is quite comfortable. He is quite content. I've had pneumonia. It feels awful. He was very acutely sick. Now he's not. He has chronic problems, including the newly discovered lung cancer. We're not asking for any big deal cure for that. A younger man would likely be a candidate to have a portion of a lung removed. That's not recommended for him, and we understand that and agree.

He's not in need of morphine, Ativan or Adderall. I don't need visits from a "grief counselor." Neither of us wants visits by some hired "chaplain" to tend to us "spiritually." We know where the church is. We've recently been visited, multiple times, by a clergyman of our own faith.
I think the hospice recommendation was premature. The palliative care nurse stated she wanted me to explain my "values." None of her business what "my values" are. I'ld like to know what she was fishing around for. She asked me right at my boyfriend's bedside - didn't I find that his dementia was getting worse with each illness? What was I supposed to say? "Yeah, he just gets further and further out to lunch . . . a little loopier every few months." These are the folks who are supposedly ultra-sensitive to feelings and respecting of dignity. It all struck me as kind of creepy. They come across to me as kind of cult-like.

-------Your boyfriend is very lucky that you have training as a nurse. Because of that, you can yourself give him an exceptional level of care. Still, the system can be so frustrating. My partner has serious health conditions (cardiomyopathy, diabetes) and is not proactive with his healthcare, so a lot falls on my shoulders even though we have excellent insurance. For regular folks like me, with no medical training, it is so difficult. Especially since each provider has its own agenda which is often hard to decipher.
Imagine how difficult this is for an older or disabled person with failing health and some degree of dementia. Someone I know worked for a hospital system as a counselor for the elderly with lesser funds. Sadly, with todays healthcare system, I think every patient needs an advocate like you have been for your boyfriend. Wishful thinking unless we speak up, organize, lobby hard, vote, etc. You are doing such a good job. You are a very special person!

Hospice care can also be like basic hospital care outside an hospital. E.g. maybe he'd be able to get those IV antibiotics at home, with a nurse coming to change the bag every few hours - and someone on call if needed earlier (if the IV catheter dislodges or whatever). Same for nasal cannulas, and those things that suck the mucus out his airway.

I do understand you don't want a nurse to decide whether you bring your boyfriend to the ER! Is that really the rules, that you need their freaking permission?

[unaluna]

from what ive read, you can still request whatever care you want and medicare will cover it, even if it is considered "outside" hospice, like going to the hospital if the home iv antibiotics arent enough. Its not like the threatened death panels have taken over.

[Rose76]

Breadfish - no, they would not be doing I/V antibiotics in the home. They would offer oral antibiotics. But that option was available to the E.R. doctor, when I brought him to the hospital. It was the E.R. that determined he was too sick to be sent home with just an oral prescription. The E.R. admits when it looks like "the big guns" are needed. That means I/V hydration and I/V medication, along with frequent blood draws for labs to check the body's response to the therapy (like white blood cell count.) I/V sites do have to be watched and changed, often at unexpected times. The patient has to be monitored for sepsis and infection getting into the blood stream. Oxygen level has to be monitored.

The lay public often does not know certain realities. The reason why Medicare is happy to pay for hospice is to reduce the cost of end of life care. It is not intended to be just like hospital care, only at home. It is intended to be less expensive for the government and the insurance companies. That is the reality.

The hospice "contract" requires the patient and family to sign away their right to go to an emergency room. Instead, they must refer that decision to the hospice nurse. That nurse works for an agency selling the hospice service. The agency has a powerful financial incentive to discourage patients going to the hospital. (They may lose a lot of money, if the patient does. That's because the hospital may end up billing the hospice agency for the E.R. service and the admission. Medicare sets it up, so that can potentially happen.) You have to understand what agenda is driving each provider. That basically comes down to issues of money.

[Rose76]

Originally Posted by unaluna

from what ive read, you can still request whatever care you want and medicare will cover it, even if it is considered "outside" hospice, like going to the hospital if the home iv antibiotics arent enough. Its not like the threatened death panels have taken over.

Yes and no. You can "quit" hospice any time you want . . . or so they say. Medicare will only pay for you to go to the hospital, if that is to treat something unrelated to the diagnosis that got you into hospice. Arguing that something is unrelated can get problematic. But it could happen. Like - say you're in hospice because you have incurable lung cancer. Now - say you burn your hand in the kitchen and it gets badly infected. Medicare might well pay for you to be in the hospital for that.

Those type of scenarios are not common. In an elderly person with deteriorating health, everything tends to be related. This is more like "death panels" than you realize. We do spend an enormous amount of money on hospital care during the last few months of older people's lives. It does make sense to question the utility and the wisdom of that. (Part of the problem is that hospital care is so ridiculously costly in this country, which could potentially be changed by socializing the way we finance it, as every single other modern nation does.) Medicare is desperately seeking to reduce what gets spent on elders during the last year or so of their lives. I agree with that goal. As a society, we have other things we need to spend money on. Hospice was supposed to be a way to get people to not suck up so much costly attention, when they are likely soon going to die anyway.

When the medical teams at hospitals see an elder coming back repeatedly with expensive problems that can only be helped temporarily, they start thinking, "Maybe we ought to stop trying so hard to save this person." And they do have a point. That's the reality. "Death panel" is not an elegant way to describe that. But you are talking about a group of people reaching a consensus of informed opinion that Aunt Mable needs to go to her eternal reward, sooner rather than later. Call it what you will.

[Rose76]

Originally Posted by luvyrself

-------Your boyfriend is very lucky that you have training as a nurse. Because of that, you can yourself give him an exceptional level of care. Still, the system can be so frustrating. My partner has serious health conditions (cardiomyopathy, diabetes) and is not proactive with his healthcare, so a lot falls on my shoulders even though we have excellent insurance. For regular folks like me, with no medical training, it is so difficult. Especially since each provider has its own agenda which is often hard to decipher.
Imagine how difficult this is for an older or disabled person with failing health and some degree of dementia. Someone I know worked for a hospital system as a counselor for the elderly with lesser funds. Sadly, with todays healthcare system, I think every patient needs an advocate like you have been for your boyfriend. Wishful thinking unless we speak up, organize, lobby hard, vote, etc. You are doing such a good job. You are a very special person!

Thank you, luv. I try, and I have the skill set to make a big difference. Hospitals aren't typically dealing with a very debilitated elder who happens to have the advocacy that my guy gets through me. I think it's somewhat pissing them off. I'm not the only nurse with a sick significant other. But most nurses with a sick elderly partner are elderly themselves and not able to do as much of the care as I do. Our situation is unusual, if not unique. My boyfriend is awfully lucky. I won't be that lucky myself. It's much harder to advocate for yourself when you are sick . . . as I have found.

You identify a core issue when you mention provider's agendas. They do have them and there isn't the transparency that we would wish. I'm also coming to suspect that the old-fashioned paternalism that doctors used to be accused of isn't dead. Doctors are not talking with me as one intelligent person to another. It's patronizing. They don't really want to share with me their thinking. I have to discern that as best I can. Instead they send a palliative care nurse to the room to talk around in circles. As you rightly point out, they can get away with a lot when they deal with lay people. I think it intensely annoys them to get as much push back from a person like me. They are just not used to that . . . especially in a VA facility, which traditionally tends to serve a population that is not the most able to be demanding or challenging. Historically, the VA attracted a lot of the down and out of society.

I wish you well in your efforts on behalf of your partner. I truly know how tough it can be. When I worked privately for wealthy families, they would tell me that part of why they kept me around was just to have someone explain things to them. These were often well-educated people of means and with connections. Yet, in a hospital setting, they felt at the mercy of the system.

We need to change things. I agree with you that we will need to do that through political processes. And we just need to be aware of "agendas." Those tend to boil down to matters of money. That doesn't mean that all the players are evil with nefarious intentions. But we need to understand the pressures that even good people are under. We need always to ask, "How is this person being incentivised in their thinking?"