For the love of god, let the poor man go home

Miscellaneous and Personal Stuff I Must Share
1

My uncle has lung cancer. He’s dying–not just “I have lung cancer” dying, but “don’t buy me any Christmas presents” dying. We all know this. We’ve known it since he first went into the hospital this last time, the week before Thanksgiving. He was in such bad shape the night they admitted him that they called the whole family to the hospital. He fought back a little ways, though, and he’s been well enough to go home with hospice care for over a week and a half.

His doctor, though, is just hell-bent on keeping him in the hospital. At first he wanted him on the transitional care unit, which is basically intensive physical therapy for people recovering from strokes and traumas. The PT might help him get some of his strength back. Well, yeah, it might…if he had enough time left to get his strength back. But a man who was given six months to live a year and a half ago, who’s got huge tumors in his lungs with mets to his brain, bones, and kidneys doesn’t have that kind of time left. And he doesn’t need to be spending what little time he’s got left trapped in a cold, sterile hospital room, or torturing himself with PT. It’s just ridiculous.

Now that they’ve come out and told Harold that he’s not going to see Christmas, they’ve decided that he needs to stay in the hospital for pain management, as long as his insurance will pay for it. If the insurance won’t pay for it, then they’ll send him home with hospice. To me, this seems incredibly cruel. There’s no benefit to keeping him in the hospital–he’s a DNR and hospice can manage his pain at home. Besides, he wants to be at home. The whole thing is mind-bogglingly stupid.

Let the poor man go home and have some semblance of normalcy to his last days. Let him decorate his Christmas tree one last time. Let him sit in his recliner. Let him drink his coffee brewed just how he likes it out of his own cup. Let him sleep a few more nights in the same bed with his wife. Let him die with some dignity and peace of mind.

And, you know, he’s not the only one who could benefit from hospice care. Seeing him doped up at home in his own bed or his own recliner would be a lot easier for the family than seeing him doped up in a hospital bed. Most of the family could also do with the emotional support and help coming to terms with all of this that hospice provides. Especially the aunt who lost her husband to cancer 19 years ago. He died long, slow, and hard, with really bad seizures at the end, and she’s never really gotten over some of the things she saw then. The possibility of her sister having to see those sorts of thing seems to prey on her. She’s having a horrible time coping with all this.

This is what hospice if for, for pity’s sake. I just don’t understand why his doctor is so unwilling to use it.

2

What a horrible situation. You, your family, and especially your uncle and aunt, have my sympathies.

It seems to me that your uncle should be able to choose to spend the last days or weeks he has at home. Even if the doctor strongly disagrees with his patient’s decision, your uncle is still considered an adult, competent to make his own decisions, right? If he’s not physically capable of making decisions like that right now, then his family takes on that role, AFAIK. Can’t your uncle (or your uncle’s family) make his (or their) own decision? I thought doctors weren’t allowed to do much at all to or with a patient without that patient’s consent, if the patient is capable of informed consent. Doesn’t the doctor usually have to go with whatever informed choice the patient or other authorized person makes?

3

** {{{{{CrazyCatLady and family }}}}} **

I will be keeping you all in my prayers.
I agree with ** Scribble ** , maybe your Aunt or Uncle will be able to stand up and say enough.

4

Do you have hospice in your area that can help him out and let him go on his journey on his terms?

5

If the “they” you refer to is the hospital, it’s not their decision to make. They can’t keep him there against his will, or the will of whovever has durable power of attorney. Tell them this in no uncertain terms. My wife and I have been through this with two of her family members this year.

You don’t ask if he can come home. You *tell them * he is going home.

Don’t be afraid to raise your voice.

6

So sorry for all of your trouble.

Is it possible for him to just sign the release and leave?
Leaving against medical advice isn’t a great solution, but there is a time and a place for it. If he can do that and still receive hospice care, it might be an option to consider. If that’s not possible, ask for a second opinion or a different physician.

It may seem like they’re forcing him to stay, but there are things you could do to get him out, the doctor is just taking a chance that you won’t do any of them.

7

Don’t hospitals all have patient advocates and social workers? I would think they could persuad the doctor if the family can’t. My dad died at home, and although it was hard, it would’ve been worse in a hospital room.

StG

8

I’m sorry to hear you and your family have to go through this. I can explain the why doctors do what you discribe, but I can in no way justify it.
In med school they are taught that death is the ENEMY and the fight must be taken to the last possible moment.
What they weren’t taught, is that death always wins. What they should be taught is that death isn’t the enemy at all.
Med school also teaches them that patients are not the same as people. People have hopes, dreams and families. Patients are the reason they are doctors.
I hope everything works out. I’m sorry I sound bitter about such things, its part of the reason I don’t work anymore. I hate the dehumanization that medicine inflicts at the end of life.

9

My heart goes out to you and your family. :frowning: I agree with those who said that nobody has the right to detain him in the hospital against his will. Surely there must be a way to work around this misguided doctor. I hope that your uncle finds a way to return home in dignity and comfort soon.

10

Thank you all for your good wishes and sympathy.

There are details I’m not privy to in this situation, partly because my aunt is a very private person who tends to not always share relevant information, partly because I’m 700 miles away. My understanding of the situation, though, is that if he goes home, it would require signing out AMA. That wouldn’t be a bad thing in and of itself, except that his oncologist would then not do whatever paperwork and such is required to get him into hospice care. Going home without hospice care lined up is simply not an option at this point. The options are a) throw a fit and get this doctor to discharge him home with hospice care b)fire this doctor and find one who’ll send him home with hospice care or c) go with this guy’s idiotic plan.

My aunt isn’t a fit thrower. Ordinarily, I like this about her, but it’s a very frustrating quality in situations like this when a fit desperately needs throwing. She’s just not the sort of person to tell anybody, “Look, this is how it’s going to go.” Neither is my uncle. We’ve got plenty of other folks in the family who would be willing to say just exactly that, but don’t feel it’s their place to do so. This is Barbara and Harold’s decision to make, after all, and everyone feels it would be overstepping their bounds to try to talk either of them into insisting on going home. That kind of knocks option A out of the running.

Option B ain’t looking so likely either. My family has this weird, fatalistic attitude toward doctors. Part of it is that there aren’t very many doctors in the area, at least not for a place that size, so it’s hard to find a new doctor at all. Part of it is that most of them don’t really know much about medicine, so they often don’t realize that the care they’re getting is substandard; they think all doctors will treat them the same way, so they just don’t bother to look for a new one. And I think part of it is that they’re somewhat intimidated by doctors, especially on that side. My dad was the first person in his extended family to attend college at all, and he didn’t finish. The lack of education tends to make them hesitant to contradict someone who went through college and med school. At any rate, I just don’t forsee them firing this oncologist and finding a new one. It’s just not how they are.

So they seem to have chosen option C.

Stuff like this is what’s hardest about living so far from my family. I feel like they need me and there’s not really much that I can do to help them. And it’s frustrating, because if I was there to call this guy on his bullshit in person, it would either prompt my aunt or uncle to take a stand or prompt my other aunt to descend on him with all the furies of hell, whether it’s her place or not. She’s a fit-thrower extraordinaire anyway, but with all those unresolved feelings from losing her husband…oh, boy. Scorched earth wouldn’t even begin to describe it. Over the phone and mail, though, my fussing and protesting doesn’t do a damn bit of good. My family’s weird like that.

11

Oh, CCL, I’m so sorry. Not only that this is a horrifying ordeal for you family, but that you are far away from them. Know that you’re in my thoughts.

12

If it makes you feel any better, we aren’t really taught this anymore. Hospice care is integrated into the curriculum just about anywhere. The “bio-psycho-social” model gets harped on continually; this leads to many unfortunate attempts to teach what I consider to be unteachable.

I don’t completely understand why this is happening. The hesitance to move on to end-of-life care I can chalk up to unrealistic expectations, and we’ve all been guilty of that. But as long as there is a reasonably good hospice organization in place and a reasonable, there is no reason whatsoever that end-of-life pain management has to be done in the hospital. Giving the doc the benefit of the doubt, he might not be trusting of the local hospice/home health organizations. Assuming the worst, he might be keeping him there so he can still bill for that daily visit. Then again, it might be old-fashioned incompetence.

Like CCL, I hate that I’m not around. I could make a doc-to-doc call, but since this is an oncologist and I’m a mere internal medicine resident 700 miles away, not to mention a relatively recent in-law, he probably isn’t going to think much of what I have to say. What I want to happen is for one of them around there to call the hospice people themselves; the doc might move a bit more in that direction if Hospice is already on board.

Oh, and leaving AMA is problematic for a host of reasons, not the least of which is payment. I have heard of entire hospital stays having payment denied if the patient left AMA, which sticks the family with a gigantic bill. It’s easy to say that sort of thing doesn’t matter, but when you’re talking about many, many thousands of dollars, it really does.

13

that’s “and a reasonable family and home situation, there is no reason whatsoever…”

14

I’m sorry for the situation you are in.

My dad used to work as a home health care nurse. Most of his patients were terminally ill folks who preferred to spend their last days at home. I lost my Grandmother to cancer, and it is a heart-wrenching experience.

:frowning:

15

What an awful situation. The doctor is refusing to look at the big picture when he says he won’t support hospice until the insurance runs out. Or he’s looking at the profits he and the hospital are making while your uncle is in there (the cynical part of me says).

Hospice’s freakin’ job is to help with things like arranging nursing care at home. I’ve always said that a hospital is no place for a sick person.

Nothing to add beyond what others have said (get the hospital’s patient advocates etc. involved) but I’ll be watching for your posts to gather ideas, as my mother will likely be in this situation within the year. any smokers reading this: QUIT NOW!!!

16

But you don’t want to just tell him anything anyway; you want to ask him intelligent questions that (hopefully) get him to realize that there’s no good reason not to discharge CCL’s uncle to hospice. ISTM that that’s what your training should be good for in this situation. You’re not an expert, but I expect you know enough to ask the right questions.

That would be a good way to go, but it sounds like it might be a challenge to convince CCL’s family to take even that step.

17

I’m somewhat confused. When my FIL was dying, they told him that he could go home only he agreed to hospice. They didn’t insist he stay in the hospital. Dad thought it was a rip-off, but Ivylad explained that it wasn’t a rip-off, and that the hospice wasn’t just for him, but to help out Mom too.

If there is no hope, then hospice needs to get involved. The doctor was the one who told us about hospice, and they were wonderful.

I don’t know if you have any closer family members who can help out, but for God’s sake, don’t subject the man to anymore pointless tests. Send him home. There’s nothing more they can do.

18

Thanks again, everyone. I really appreciate all the suggestions and good wishes, and I feel much better for my wallow in the self-pity trough. Mama, I’m sorry about your mom. I wish I had some advice or wisdom to share with you, but unfortunately all I’ve got to offer is sympathy.

RTF, there doesn’t seem to be any medical knowlege needed to ask the relevant questions, just a willingness to ask them. At this point, where everyone has accepted that there is no hope and they’re doing nothing but palliative care, the only treatment decision to make is where he’s going to be when he gets his morphine. The only question to ask is, “What can you do to keep him comfortable here that Hospice can’t do for him at home?” The answer, near as I can tell, is “not a damned thing.” So then, the question becomes, “Well, wtf is he still doing here, then?”

And yes, there’s plenty of family right there in town who could ask these questions. He’s got a wife and two grown kids, a brother, and various siblings-in-law. There’s generally at least two or three of them at the hospital at any given time. But they can’t or won’t ask a doctor, “What the hell is this shit, bitch?” I, however, have no such compunctions. Just ask Dr.J. :stuck_out_tongue: