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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 43. This is the beginning of the thread.
Posted by Dinah on December 12, 2004, at 14:02:32
My father is in hospice for liver failure from cirrhosis. Hospice does not aggressively treat things like pneumonia. They seem to give antibiotics and oxygen and breathing treatments and meds to help him breathe. But it's not the same as having him hospitalized and treated for pneumonia. My guess is that he's more likely to die of pneumonia under hospice care than under hospital care.
Their attitude seems to be something along the lines of liver failure is a horrible painful way to die, and it might be a blessing if he died before end stage liver failure.
Yesterday my mother called them because Daddy was having trouble breathing and they came out to say that he had "turned" and was likely to die within a day if he didn't rally. After he did rally somewhat after the application of oxygen, it doesn't look like he's going to die in the next day. So the ethical dilemma I struggled with last night is put off, but probably not eliminated.
It would be so easy if it were a dog. When my dogs are dying, say, of cancer and they get pneumonia, I have the vet treat the pneumonia every bit as aggressively as if they had no other disease. But... I also know that when my dogs are in terrible pain, with only days or weeks to live, and that time in terrible pain, that I can have the vet euthanize them.
If I put my trust in the hospice, and my father dies, I will always wonder if my decision was responsible for his premature death. If I don't put my trust in hospice, and bring him to the hospital for more aggressive treatment for his liver failure, and later he is in horrible horrible pain while dying, I'll always wonder if my decision was responsible for his suffering.
Is it better to be a possible murderer or possible torturer?
(Explanatory addition. My father is not currently in any condition to give input on this matter. We have not discussed this precise scenario before. He *did* reluctantly say that he doesn't want to get CPR or be put on life support. But he also always called my mother and me murderers when we euthanized the dogs. My mother isn't much help. She claims to be as undecided as I am, but when I speak about bringing to the hospital she is decidedly opposed. Still, I don't think hers is a voice I look to for ethical guidance in this decision.)
Posted by alexandra_k on December 12, 2004, at 15:03:52
In reply to Any ethicists out there?, posted by Dinah on December 12, 2004, at 14:02:32
Wow Dinah, that is a hard decision to make.
I am not sure that ethics will help you with that decision.
Some theorists consider that there is a difference between 'active' and 'passive' euthenasia (though the distinction may ultimately be untenable I think that it does have merit and at least an initial appeal). The difference is that 'active' euthenasia involves some action that leads to the death, such as administering a lethal injection. 'Passive' euthenasia, on the other hand is refraining from treating, such as giving a do not resucitate order.
In New Zealand active euthenasia is illegal, whereas passive euthenasia is legal. There are borderline cases, however. My grandfather got leukimia and he was in a lot of pain and he wasn't going to live for very long. The hospital kept increasing the morphene dose to kill the pain, but they were also able to tell us to get the family together within two days because they could also calculate that that dosage would kill him. In that case I have no doubt that that was the kindest thing to do in that situation.
I do agree that it is likely that a hospice is more concerned with alleviating suffering and dying with dignity whereas a hospital is more geared towards the prolongation of life. It is interesting that in the case of animals most people unhesitatingly decide to alleviate suffering whereas in the case of human beings we worry...
I am sorry Dinah. I don't really think that there is anything I can say. Except that whatever you decide remember that you did it with the best of intentions and you did indeed agonise over this one. Don't regret your decision, whatever you decide to do.
Posted by Larry Hoover on December 12, 2004, at 15:38:24
In reply to Any ethicists out there?, posted by Dinah on December 12, 2004, at 14:02:32
I don't know if I'm an ethicist, but I might perhaps help clarify the decision you want to make.
> If I put my trust in the hospice, and my father dies, I will always wonder if my decision was responsible for his premature death.
> If I don't put my trust in hospice, and bring him to the hospital for more aggressive treatment for his liver failure, and later he is in horrible horrible pain while dying, I'll always wonder if my decision was responsible for his suffering.
And all you have to go on is his wishes...
> He *did* reluctantly say that he doesn't want to get CPR or be put on life support.
Here's how I see the decision tree. If he is hospitalized, heroic measures will be used, without question. Life will be prolonged until it is not possible to prolong it further. That is, unless he or next of kin sign a DNR.
Alternatively, standard care without heroic measures. It seems that this is most in line with his stated wishes.
He will soon die. The day of his death is not in your hands. I hope you can put your faith in your own judgment. I think you will know, as events unfold, what choices to make.
Lar
Posted by Dinah on December 12, 2004, at 15:59:36
In reply to Re: Any ethicists out there?, posted by alexandra_k on December 12, 2004, at 15:03:52
That's the main message my therapist sent as well. And my husband. But I'm the only one to make these decisions, and I can't help thinking of causal relationships. Whatever I do there will be consequences. And I'm not sure I'm strong enough to live with whatever consequences there might be.
I have no trouble with my husband's mother, supporting her and her husband's decision not to go to the hospital, whatever happens. But they are both more capable of making those decisions, and they both understand (at some level) the consequences of those decisions.
For some reason, I thought this sort of thing would be more clear. I didn't realize all the gradations involved.
Posted by Dinah on December 12, 2004, at 16:10:46
In reply to Re: Any ethicists out there? » Dinah, posted by Larry Hoover on December 12, 2004, at 15:38:24
> > If I don't put my trust in hospice, and bring him to the hospital for more aggressive treatment for his liver failure,
I realized I made a typo there. I meant his breathing problems, possibly pneumonia. I have no trouble with no agressive treatment for the actual liver failure. I understand that that is what hospice is for. It's just that there seems to be a difference between aggressively treating what he's dying of, and aggressively treating a complication of being bedridden.
>
> And all you have to go on is his wishes...
>
> > He *did* reluctantly say that he doesn't want to get CPR or be put on life support.
>
> Here's how I see the decision tree. If he is hospitalized, heroic measures will be used, without question. Life will be prolonged until it is not possible to prolong it further. That is, unless he or next of kin sign a DNR.
>
> Alternatively, standard care without heroic measures. It seems that this is most in line with his stated wishes.I wish he had been more clear about his stated wishes. Here is the man who has been saying he was going to die and be glad of it since I was a little girl. Yet every time he has a choice to prolong life, or to enjoy it more, he's chosen to prolong it. He gave up smoking and drinking, both of which he said he would never do. He was very very ambivilant about giving me permission to sign the DNR. He finally gave permission, but he certainly wasn't emphatic about it. I know what I would want in the circumstances. But I don't want to let that influence what I choose to do as his representative. :( He chose me to be his representative because he knows I'm scrupulous about following his stated wishes above my own inclinations. But we just never discussed this. Or if we did, he blew it off.
>
> He will soon die. The day of his death is not in your hands. I hope you can put your faith in your own judgment. I think you will know, as events unfold, what choices to make.
>
> LarThanks Lar. Faith in my own judgment is something I've never really had. I've assiduously avoided responsibility my entire life. I do know he's going to die. And soon. His decline in the last three months has been so swift that you can see changes day to day. But I... I dunno. I just want to do the right thing.
(My therapist says he's noticed more than a touch of grandiosity in my responsibility OCD. And I remember learning in ethics class in college that scrupulosity is considered a sin of pride. But I just can't get past causal relationships.)
Posted by Dinah on December 12, 2004, at 16:11:11
In reply to Re: Any ethicists out there?, posted by Dinah on December 12, 2004, at 16:10:46
Posted by daisym on December 12, 2004, at 16:19:11
In reply to Re: Any ethicists out there? » alexandra_k, posted by Dinah on December 12, 2004, at 15:59:36
Dinah,
You know that my husband is dying. If one disease doesn't kill him, the other must surely will. There are days when I think, "please God, take him quick." And others where I think I'm not ready. But whatever decisions we make, his death is going to happen. It is God's decision.
Your dad has lived a long full life. He hasn't asked you to "do whatever it takes." If he felt strongly about that, he would have done that by now. Hospice knows what they are doing. Try to spend the time you have left remember the good things, ignoring his bad moods and holding his hand. Agonizing over decisions like this steal your time and energy. I know it isn't easy. But whatever you decide, home or hospital, it will be OK. Please don't keep second guessing yourself. None of this is your fault. Let your husband support you, he probably has a less emotional view of it.
I wish I could reach out and hug you. I absolutely know the agony you are in. It sucks.
Daisy
Posted by alexandra_k on December 12, 2004, at 16:46:13
In reply to Any ethicists out there?, posted by Dinah on December 12, 2004, at 14:02:32
I am not sure what you mean when you talk about not being able to get past the causal relationship.
Do you mean that If you get more agressive treatment for him (in the hospital) then the effect of that is that he lives for longer whereas If you don't then the effect is that he dies sooner?
Is that what is bugging you?
I think that it is perfectly okay to try to get beyond that by reflecting on quality of life. Not only quality of life for him, but quality of life for the other people who are in his life too. Now, if he was emphatic that he wanted to live NO MATTER WHAT then that would alter the situation, but he seems ambivalent and it is really unfortunate that this hard decision has fallen on your hands.
I think that it is okay to reflect on quality of life. Also the quality of the memories of the other people who are left behind. Also the quality of their life in looking after him at such an advanced stage of his illness. With respect to what you would want were you to be in his situation, well I guess that when their wishes are so unclear we can only do what we think is best.
There aren't any easy answers.
Hugs.
Posted by Dinah on December 12, 2004, at 16:54:16
In reply to Re: Any ethicists out there? » Dinah, posted by alexandra_k on December 12, 2004, at 16:46:13
Yes, that is what I meant. I tend to be rather concrete in my reasoning, and I just can't seem to get past the fact that there is a causal relationship between my decisions and what happens later. The fact that I meant well, or what my intentions were don't matter. What matters most is that if I do A then X will happen and if I do B then Y will happen. That makes X and Y my fault. Trouble is that X and Y are unknowns. I can guess, but I don't know what they are yet. The fact that I don't know doesn't matter either.
I *hate* those quality of life decisions. That really does feel like playing God or being grandiose. Even with the dogs.
Posted by Dinah on December 12, 2004, at 17:01:17
In reply to Re: Any ethicists out there? » Dinah, posted by daisym on December 12, 2004, at 16:19:11
You're right. Except maybe about my husband. :)
I just wish I trusted the hospice people as much as I trust my vet. They seem to be really good at easing death, but I'm not sure they are really good at determining when to do it. :(
I *know* my father's doctor signed him into hospice, and I understand that that means he is saying that my father is terminal and death is expected withing 6 months. But 6 months can be a very long time. A good long time, or a bad long time.
I think hospice has different objectives than I do. What I'd like to understand is why. If I understood why I'd be able to trust them more. I've sort of asked, but they aren't good at answering.
((((Daisy))))
As hard as this is for me, I can't imagine dealing with it over a husband.
Posted by alexandra_k on December 12, 2004, at 17:19:49
In reply to Re: Any ethicists out there? » alexandra_k, posted by Dinah on December 12, 2004, at 16:54:16
Even with causal relationships, though, it makes a hell of a difference how we choose to describe them. For example, you could describe the causal relationship as one where the hospice is maximising quality of life whereas the hospital is minimising it. Or, of course you could describe it the way you have. My point is just that there are many causal relationships that could be described, so don't get too hung up on that.
> The fact that I meant well, or what my intentions were don't matter.
Yet I do not think that you would think this in the case of another? It seems to me that one could decide on selfish grounds, in which case one has acted badly not because of the outcome (which may be a good one) but because one has malicious intent. Likewise, the fact that you do mean well and are at pains over making such a hard decision should indeed factor in (in my opinion). This is the difference between virtue ethics (which includes intent) and Kant's moral law (for example) which does not.
>What matters most is that if I do A then X will happen and if I do B then Y will happen. That makes X and Y my fault. Trouble is that X and Y are unknowns. I can guess, but I don't know what they are yet. The fact that I don't know doesn't matter either.
I don't think that it makes it your fault - especially if you don't know what X and Y are! There are also many different ways in which to describe X and Y. Some good some bad. That is all I mean when I say that you should not regret your decision (whatever you decide). You should focus on the good that comes of it. Not get hung up on the negatives. Well, as much as is humanly possible anyway.
> I *hate* those quality of life decisions. That really does feel like playing God or being grandiose. Even with the dogs.You didn't choose to make this decision, it has been thrust upon you. What a b*gg*r of a situation...
Posted by TofuEmmy on December 12, 2004, at 18:10:23
In reply to Re: Any ethicists out there? » daisym, posted by Dinah on December 12, 2004, at 17:01:17
>I think hospice has different objectives than I do. What I'd like to understand is why. If I understood why I'd be able to trust them more. I've sort of asked, but they aren't good at answering.
Dinah - I used to volunteer at Hospice, working on an in-patient unit. It sounds like you are feeling that the Hospice people are almost in a rush. Those folks have seen a lot of "good deaths" and "bad deaths". If you ever feel like they are hurrying things, that may be why. They simply want to spare the patient and the family a "bad death". I'm so sorry if that sounds blunt. I couldn't think of another way to word it.
It sounds like their social worker should be spending more time talking to you about this issue. Of course, Hospice is one of the most poorly funded non-profits in the country, so their resources are scarce. Their staff are some of the worst paid human services people you'll meet, and imho, some of the most amazing.
I hope you can grab someone there and vent some of this concern. They should hear it, and resolve it. Take care.
emmy
Posted by Dinah on December 12, 2004, at 18:24:08
In reply to Re: Any ethicists out there? » Dinah, posted by TofuEmmy on December 12, 2004, at 18:10:23
That would be the good reason for what they're doing, Emmy. And I'd like to think that was why they're doing it.
But I sometimes wonder if it's more that they just are in a hospice state of mind, so to speak. That they, for perfectly understandable reasons, fall into a routine. I kind of got that idea from almost everyone there. Instant intimacy on their parts, lots of honeys and dears, and not a whole lot of "realness". I just wonder if that pervades their medical thinking as well.
I'm not actually thinking that they are malevolent or anything. Just that they aren't flexible. For example, the last time they told me this was the natural progression of the disease and that he had just gotten worse was when he really just had a buildup of unneccessary morphine in his system (fortunately my dad isn't in any real pain yet). It took a heck of a lot of squawking on my part to get the doctor to step back, take a look, and say "Yes, it's the morphine. his liver can't handle it." I guess that incident more than any other made me uneasy with them. I think they would have just kept giving him morphine for the leg cramps he's been using tylenol for.
And this is not a nonprofit hospice. It's for-profit. I'm enough of an optimist about human nature to hope that doesn't make a big difference. Or even that it would be in their economic best interests to keep the customer alive...
Posted by Dinah on December 12, 2004, at 18:24:35
In reply to Re: Any ethicists out there?, posted by Dinah on December 12, 2004, at 18:24:08
Posted by gardenergirl on December 12, 2004, at 18:38:50
In reply to Re: Any ethicists out there? » Dinah, posted by TofuEmmy on December 12, 2004, at 18:10:23
Oh Dinah, what a difficult situation.
I was struck by a couple of things in your original post. First, it sounds like they ARE treating the pneumonia, although perhaps not as aggressively as they might in the hospital. In his condition, I have to think it would be impossible to know if more aggressive treatment would actually make a difference or not. So it doesn't feel to me as if treatment were being withheld in order to speed his death. Perhaps I am assuming too much, however.
I know that one thing Hospice does in order to increase comfort and quality of life in the end is to avoid constant back and forths to the hospital. I've seen lots of older adults in nursing homes, who, when they deteriorate, can be back and forth so much it makes your head spin. All that transporting and changing caregivers, chaos, and so on seems like it would be disturbing on some level. So that may be another reason they are treating the pneumonia as they are...to avoid beginning a cycle of back and forths.
Regarding causality, I can certainly understand the distress that thinking along those lines would bring. And I think most of us would worry about second-guessing and whether we made the right choice or not. But there is another factor or two that is at play. Regardless of the decision, it's also up to your dad's body and spirit to some extent. And perhaps God. Or fate, or whatever you believe. I guess I'm just saying there's more at play in the outcome than any one decision.
Okay, mostly I just want to be with you in spirit. I'll be thinking of you in the coming days, and I hope you know you are valued here and I'm sure IRL. I know you will not make a capricious decision and that will be hard for you. Just know that we care.
'K?
((((((dinah))))))
gg
Posted by TofuEmmy on December 12, 2004, at 18:40:54
In reply to Re: Any ethicists out there?, posted by Dinah on December 12, 2004, at 18:24:08
If you haven't already, please tell the social worker about this and how it makes you suspect of relying on their judgement. They obviously need to be reminded of the importance of their place in your life, and in your dad's life.
em
Posted by pegasus on December 12, 2004, at 18:44:26
In reply to Re: Any ethicists out there? » alexandra_k, posted by Dinah on December 12, 2004, at 16:54:16
>The fact that I meant well, or what my intentions were don't matter.
Oh, Dinah, yes they do! They matter the most! Whatever you decide, and whatever ends up happening, it seems clear that you'll be trying to make the decision that would be best for your dad. If he dies earlier, or suffers more, it's not because you made a decision for that to happen. You are making decisions that you hope will be best for his continuing life (at least as far as he'd want to) and for limiting his suffering. Whatever *actually* happens, if the outcome is worse than you want, it's not because of your negligence. It's just because you made the best choice you could figure out, and then things you couldn't forsee happened. It's totally unfair to call yourself a murderer or torturer. You are so clearly trying not to be either of those things. If he dies or suffers it will *not* be your fault. It will be desipite your best efforts.
(((Dinah)))
pegasus
Posted by anastasia56 on December 12, 2004, at 20:02:39
In reply to Re: Any ethicists out there? » Dinah, posted by pegasus on December 12, 2004, at 18:44:26
All the posts you have received have been so incredibly supportive.
When the time came for my father and then my grandmother to pass on they each labored long and hard during the process. With each one, at the end all I could think was that I was so grateful they were finally done with the difficult task of dying and could be at peace.
When it is more painful for your father to continue living than it is for him to die you will have no regrets about any decisions you have made.
anastasia
Posted by fallsfall on December 12, 2004, at 20:46:37
In reply to Any ethicists out there?, posted by Dinah on December 12, 2004, at 14:02:32
I have no words of wisdom for you. But I do have compassion. And hugs - lots of hugs if they help.
((((((((((Dinah))))))))))
You love your dad a great deal. That has been so clear here on the board. And he loves you - remember that he told you so recently.
I think that this is one of those decisions where you need to let your heart guide you rather than your head. The decision has too many unknowns, and it is not possible to weigh the options - the options are not comparable. Can you accept that there *is* no way to "logically" make this decision? And let your heart make it? Can you sit with him and hold his hand and let his presence let you know what to do? You can make the decision together (even if he doesn't communicate conventionally with you). He trusts you. Now you need to trust you.
(((((Dinah)))))
Posted by All Done on December 13, 2004, at 3:44:04
In reply to Re: Any ethicists out there?, posted by anastasia56 on December 12, 2004, at 20:02:39
(((Dinah))),
I started to write a long post, but I realized it might be triggering and I'm not sure how much you want to hear right now. Just know that my family and I went through circumstances very similar to yours when my father passed away. If you want to talk to me about it, e-mail me. If it would be too difficult, please know that I'm praying for and thinking of you. It is so hard.
Please take care,
Laurie
Posted by Dinah on December 13, 2004, at 12:40:53
In reply to Any ethicists out there?, posted by Dinah on December 12, 2004, at 14:02:32
I'm heading there now and may not be back until after it's over, unless he rallies. She says it could be hours or days.
I've hired a night nurse without getting my mother's ok. Even if she wants to, she shouldn't have to do the physical stuff at this stage.
I guess I decided to trust hospice. I talked to my boss, and my cousin, and of course you guys. I'm having my mother call their regular doctor to see what he thinks. But then I guess I'll trust them.
I wish I had my Daddy to talk this sort of thing over with.
Posted by gardenergirl on December 13, 2004, at 12:49:26
In reply to Nurse says end is near, posted by Dinah on December 13, 2004, at 12:40:53
Posted by All Done on December 13, 2004, at 13:28:41
In reply to Nurse says end is near, posted by Dinah on December 13, 2004, at 12:40:53
(((((Dinah))))),
I am praying for you, your father, and your family.
We will be here for you when you need us.
Laurie
Posted by TofuEmmy on December 13, 2004, at 15:51:00
In reply to Nurse says end is near, posted by Dinah on December 13, 2004, at 12:40:53
http://www.dr-bob.org/babble/faith/20041120/msgs/428974.html
There is a link on the Faith board too for prayers and hugs.
emmy
Posted by fallsfall on December 13, 2004, at 16:53:54
In reply to Re: Praying for you and your family, posted by TofuEmmy on December 13, 2004, at 15:51:00
((((((((((Dinah & Dinah's Daddy))))))))))
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