OT: End of life, Family conflict, damned if you do and if you don't, thought?

[Kirk007]

Out of respect for the collective wisdom, life experience and kindness of so many on this forum whom I've come to know electronically over the years, I seek any counsel that you may offer; perhaps some of you have been through this and made it through to the other side relatively intact.

Situation: 92 year old father in law, in year 10 of dementia, hospitalized 11 days ago with pneumonia, UTI and septicemia. Hanging on by a thread with multiple antibiotics and IVs. Barely eating.

Brother in law is Guardian and has Power of Attorney for medical decisions. Living will in place. Physician's Directive in place directing antibiotics for comfort only, no tube feeding. Brother in law thinks he can be saved, and now trying to go back on the Directive, which he executed a few years ago as guardian.

Wife (and me and the rest of the family). Adamantly against extraordinary life extending measures, believe this man has suffered enough and current efforts by brother in law are extending suffering and are being made for his own interest/inability to accept death. Brother-in-law is very angry, nasty lashing out at everyone and anyone, including health care providers as not doing enough to save his father (long pattern of narcissistic behaivour here). Acting independently, not seeking input from other family members and ignoring counseling of at least 3 doctors.

I am torn as to what to do, if anything, as is my wife. On the one hand we believe her father to be suffering and her brother's conduct, while in some ways understandable nevertheless is inhumanely selfish and contrary to his duties as Guardian to do what is in the best interests of his father. His conduct is deepening the gulf that already exists between him and his sister, and me and other family members.

If we say nothing, father-in-laws suffering may continue through the "miracles" of modern medicine.

If we confront, even gently and with kindness, brother-in-law, the likelihood of him hearing and reconsidering his path is remote. Far greater is the likelihood that he lashes out even more at the family and the family relations deteriorate even further. Yet, continuing to say nothing results in a continuous loop in my mind of the saying that all it takes for evil to succeed is for good men to do nothing.

This is sadly a lose, lose situation I think. The biggest loser short-term at least in my view is my father in law whose suffering is needlessly prolonged. For my wife, this is her only living brother and as the conflict continues she loses him as well, but the relationship is not, as of yet irreparable (but it could become that). Ultimately her brother stands to be the biggest long term loser as he drives the rest of the family away from him. Never married, too self centered for the give and take of any relationship, he is on the path to a lonely future.

All of these outcomes suck, for everyone. And so my (our) dilemma - keep quiet unless asked or speak up (wife very conflict avoidant as her brother gets verbally nasty)? Third party intervention? How far do you go (trying to hold my litigator training at bay)?

Again if anyone has gone through a situ like this and had a good outcome, I'd love to hear how you did it.

Grazie mille,

Greg

[Aaron O]

Jeeze...I don't think there is a right answer here. Everyone wants to do the right thing, the chasm is going to be definitive, with no possibility of compromise, and anything you do could come back to hurt the relationship.

I got nothing...other than to try and be very gentle and calm in any debate/discussions.

I can tell you that I would not want to be alive like that. We have the sense to be merciful to our pets, but not to one another. I hope to God that if I'm ever in this sort of situation I have my faculties and can exert my own will...or exert my will before I reach this position.

[eddief]

sounds like the law is probably on the side of BIL. Those folks who agree with you ought to have a shot at an intervention with him; on your own or with an experienced neutral third party. If he hears you all give your heartfelt points of view and he still won't flex, then you did your best. Makes me wonder how he ended being the guardian. We often think blood is thicker than water, but often it's not. Let go, let god to all of you.

Is this happening in WA? Maybe some resources like these could be helpful:

https://www.compassionandchoices.org/who-we-are/
http://endoflifewa.org/about-us/what-we-do/

[parris]

Kirk I'm very sorry for what you're going through. You're right in this being a situation that sucks any way you look at it.

What if anything can brothere in law do to change the health directive? If nothing nature will take its course without extending his suffering.

A buddy of mine told me many years ago that I'd be shocked at how some people would act during times like this.

Trying to explain something to someone like your brother in law is futile at best and often leads to years of divisio having experienced this first hand it's no fun.

Maybe talk to the Dr and get his/her take. Good luck

[jtakeda]

Very tricky situation.

My mother died of a similar condition. She had Huntingtons disease so her symptoms were very similar to Alzheimer's with a hint of Parkinson's thrown on for good measure.

Your situation sounds similar to my mother. Fever-uti-pneumonia. She had a DNR and no feeding tube directive. My grandmother (her mother) wanted to do anything and everything to keep her going. She would get better for a few weeks, then catch a cold or a virus or some other bacterial infection and get super sick to the point of death.

This happened a few times and eventually we got to a point where we realized (and when I say we I mean my sister and I explained to my grandmother) that this cycle will continue and that my mother was in pain.

It might take your brother a little bit of time and you all might have to experience this first hand to really understand the level of discomfort your father will be in. My mother was 54 when she passed so it was really hard for my grandmother to let go.

I think it's important to remember all the good times you had and make sure your brother understands that it's very difficult and painful for your father to see people so worried, sad, confused, and argumentive over his state of health.

It's such a tough place to be. I'm very sorry you have to go through this. I think the best course of action is to help your brother understand why the living will was written as it was. It was put in place to avoid these kind of arguments within the family and to help get past the difficult decision and to aid in a healthier form of grieving.

Best of luck and sorry about your situation.

[titans]

Going through decisions now but Dont have your specific issue so just an idea to throw out. Friends who are lawyers suggested a consultation with an attorney who specializes in elderly care situations. They can give an objective opinion on what's involved in long term care if he persists in pursuing sustaining his fathers life. We may use that advice if it comes to that as they know all the ins and outs of how the healthcare systems works. The problem for you may be getting him to see one. Hope things work out the best for you!

[vqdriver]

yeah, this is a tough spot.
i think the only possibility to come out 'ahead' on both fronts is if the BIL comes to the realization himself that compassionate care is sometimes the absence of care.
the head on approach here will probably backfire. perhaps ask him what 'saving' his father means. alive but back to a deteriorating state of dementia? because from what i read, that's the best case scenario.

[johnmdesigner]

Every state is different and I am not a doctor/lawyer. Pardon my bluntness but I have seen off many a relative.
Pneumonia and 92 is considered a hospice situation. I'm sure the care your father in law is receiving is easing any pain he might have.
Your BIL is holding all the legal cards. Unless your FIL actually signed the Health Care POA there really isn't much you can do. The hospital is legally obligated to act in the best interest of the patient and when such conflicts come up will try to keep the patient alive by any means.
You can seek legal council but if you don't have copies of the legal documents it will be a tough road.
It sounds like you are past the point of negotiation with your BIL. Some people cannot be convinced that it is in the best interest to let someone pass with some decency. Unfortunately if this is what your FIL really wanted he chose a poor representative.
Again without knowing the laws of Wash. state and what your FIL wishes are it's a tough call.

[Bruce K]

My father had a stroke a while back and there was family discussion about whether dad would have wanted a feeding tube. Since the MDs seemed to think he had a shot at recovery, we went with the tube. In the end I sometimes regret not withholding it at the time and saving him the year of living virtually bedridden and virtually unable to communicate. In the end, he never recovered and passed away from "failure to thrive".

You just can't ever be sure in these situation. You can only go with your gut.

It might be worth an hour of legal advice to find out just what the options truly are.

If you have none other than trying to gently or patiently let the BIL come around to a different decision, then at least you will know it and it might take some stress away.

If he is truly acting contrary to the legal documents and the family has some legal recourse, then you will have to decide if it is worth the cost, stress, and family turmoil.

Other than that, I've got nothing.

BK

[johnmdesigner]

Most importantly, you cannot feel guilty for this situation. Remember your FIL put his trust in your BIL for a reason.
Write him a letter/email of persuasion. Sometimes direct confrontation produces a negative result. Be clear about your desire for compassion. If he refuses then you must accept the outcome. But you tried to rectify the situation. That is all you can do. He too will have to live with his decisions.

[TBLS]

Worked thru a similar, difficult situation with my mother making end of life decisions for my father. What helped us is a social worker/nurse in the hospital presenting the 'facts' to all involved, which helped my mom make a very difficult but needed decision. Asking ourselves if Dad wanted to continue this way helped us along the path.

Communicating under severe stress is difficult but think about the person's wishes.

[herb5998]

Greg, you're certainly in a situation where it is extremely tough.

my .02 cents, You and your wife need to explain your thoughts and how you feel the father law is truly suffering, and that at this point, extending the life is mostly equal to extending the suffering. If she/you does not explain this now, it will always be there when you interact with the brother in the back of your head. Both of you may even suffer some guilt from not being more confronting about the situation.

During my wife's fight with cancer, which went on for nearly 5 years, we had plenty of time to sort out what "quality of life" was for her, and what that meant for end of life decisions. Unfortunately her mother did not agree with some of the decisions I made on the estate, and two of her sisters had issues with how her mother dealt with the situation. The sisters who have voiced that and gotten it off their chest, are thriving now. My mother in law, and another sister, are having a much harder time, and I truly believe it's a result of not saying how they felt to my wife, as well as myself when things took a turn.

Every situation is certainly unique and different, but just some ideas to ponder.

[josephr]

....like everyone else, you're in a rock and hard place....I've been involved with hospice/palliative care over the past 10 years including my dad going through the whole leukemia thing. I can tell you its hard for any family member to make the decision when its actually there. 1000 different reasons to back out and he's not the first to struggle with this uncomfortable responsibility. Its not a fight that he needs, its some good old-fashioned support. Remember your BIL is having a hard time with it too and maybe he just wishes his dad will tell him 'its ok'...

Peace to you...

[daker13]

Sorry to hear of your trouble; I've dealt with some similar things myself, and likely have many more in my future.

I'd be in favor of trying to talk to one of the doctors, since you say they're in agreement with you and your wife. If they can't help you, they might be able to put you and your brother in law in touch with a social worker or someone else who has experience in these types of situations--perhaps someone at the hospital?

Good luck.

[shovelhd]

When my maternal grandfather was in a similar situation, I visited him in the hospital. He looked me in the eyes, angry. I took his hand and he squeezed it while staring at me. He was telling me to end it. My grandmother wanted to hang on. So my mother and I had a talk with her afterwards. We let her know that he was telling us something and we should do what he wishes. We let him pass the next day.

You may not be in this situation, but if you are, consider it. God Bless you and your family.

[FlashUNC]

This sucks.

Huge difference between being alive and living though.

I'd bring it up if the BIL is pushing hard about it in family meetings. The Physician's Directive was put in place for a reason.

[Climb01742]

Can you find a third-party to mediate and/or give an impartial POV on 'what's best' for your FIL? Is your family religious? Is there a trusted lawyer? A doctor or social worker everyone might listen to? Even a friend of your FIL?

Family dynamics can help...and at times, hinder. Could an 'outsider' help everyone find common ground by moving outside the family dynamic?

A few years ago, my mother had a very bad car crash. While in the hospital, she 'died' twice and was brought back. Fortunately, we had discussed everything and agreed on a third-time do-not-resuscitate. It was a very difficult moment with the doctor while we discussed whether to follow through on our agreement, but I knew it was my mother's deeply held wish to not be on life-support or undergo extreme measures or a degraded QOL.

You have my sincerest sympathies. Without a doubt, it's agonizing finding the right path.

[AngryScientist]

If the hospital is sizable they will almost certainly have a social worker who can assist.

You can avoid the direct confrontation, and even act somewhat anonymously. talk to the social worker and possibly a hospice representative. they do this type of thing every day and know how to make people better understand the reality of the situation.

[572cv]

My father in law died on Monday night. Also a victim of a long running battle with dementia. It turns out there are at least a few kinds of dementia, Alzheimers and vascular. He had what appears to have been vascular.

All I can offer is this: The hospital, and books we have read, told us that when the patient stops eating, it is the body saying that it can't process food properly any more. Force feeding the patient at that point is cruel. It leads to bloating, to intestinal tract problems and discomfort. At least this is what I understand. One should offer food, drink, but not force it. It is a talking point with your family at least. Do those who want to prolong life understand the risks and possible painful conditions in the aftermath?

We also had a directive from my wife's father. No heroic measures. I am grateful that the family respected this. I think that this is a key measure of respect, to respect the directive. If that is what was wanted, honor it. I know it is difficult, but in the presence of a directive executed with sound mind and body, it is not yours to change. For my wife's father, the hospital was all about it. It was posted all around. Make him comfortable but no heroic intervention. He died peacefully with family around him. He had a tough last few years. It was a gentle exit, all anyone could hope for.

My best wishes to you in this difficult and emotionally fraught time.

[OtayBW]

Following are the salient points as I interpret them:

On the one hand we believe her father to be suffering and her brother's conduct, while in some ways understandable nevertheless is inhumanely selfish and contrary to his duties as Guardian to do what is in the best interests of his father.

His conduct is deepening the gulf that already exists between him and his sister, and me and other family members.

i) If we say nothing, father-in-laws suffering may continue through the "miracles" of modern medicine.

ii) If we confront, even gently and with kindness, brother-in-law, the likelihood of him hearing and reconsidering his path is remote. Far greater is the likelihood that he lashes out even more at the family and the family relations deteriorate even further.

And my conclusion, if I was placed in your shoes: Your responsibility and obligation is to help your father-in-law and limit his suffering. That is first and foremost, IMO.
Salvaging or maintaining any relationship with your brother-in-law doesn't even run a close second.

Easy for me to say....
Hope this helps, and
Good luck.

[Ralph]

In addition to what others have said....the hospital probably has some people on staff who can consel with family. Involve Dr, etc. They deal with this difficult issue all the time.

I went thu this a few years ago. Mom finally died of a UTI. After breaking a hip a couple years earlier. Difficult times.

[Ray]

I've been through it with two parents and a FIL. I would say that the angels are on your side even if the law is with your brother in law. And the bottom line is that NOT saying anything to him will damage the relationship between the BIL and his siblings and siblings in law every bit as much as trying to talk to him. It everyone approaches him kindly, clearly explains that you know his heart is in the right place, but that you think he's only prolonging his father's suffering, it might make a difference, or it might not. But withholding that advice isn't gonna do anything to improve relations over anything but the shortest of terms, and probably not even then. If he get's his way and the FIL lingers and/or suffers longer, everyone will feel incredible guilt for not pushing the point. He needs to be reminded this is about his father's wishes, which it sounds like he was clear about when he was of sound mind, not the son's sadness at facing the inevitable.

As others have said, when the person stops eating, it's the body shutting down - your BIL needs to understand this, whether you tell him or enlist the help of a doctor or hospice worker who's seen it a million times. It's usually not a willful choice - it's a lack of appetite and difficulty processing food. I think each of his siblings needs to talk to him about this, individually or collectively. Ultimately it may be his call legally, but each sibling has an equal moral and ethical stake here and no good will come from withholding strongly held advice.

-Ray

[Hilltopperny]

Very tricky situation. I would personally ask for a mediator and or grief counselor. They have people that specialize in these matters in every hospital. Everybody should take turns in expressing their feelings about the situation uninterrupted and then they can get there point across.

When I was 15 years old my father was misdiagnosed and ended up dying after a couple of weeks in the icu at Vassar and then Albany med. It was the worst thing in the world to see him suffer the way he did and I was honestly relieved when he did pass. Nobody should have to suffer unnecessarily.

Everybody copes with these situation differently and it sounds like he is having a difficult time understanding what his father is going through. It also brings up the fact that we are all human beings with a finite amount of time on this plane of existence. We start to question our own mortality which can be very unsettling and we may act out as it sounds like your brother in law is doing.

Hopefully you can all resolve your issues and when your father in law does pass it doesn't end up in a broken relationship between your wife and her brother. Good luck and hope this situation works itself out.

[Ken Robb]

This might be a good time for a clergyman or woman to offer counseling tlifeoo.

Has BIL spent any time with Dad over the past couple of years? Can he believe that any extension of life now would be enjoyable now?

I decided that for all practical purposes my dad was so far gone with dementia that he was "dead" a few months before he succumbed to pneumonia. On a visit on Easter Sunday I dropped by his care facility. Dad was having food spooned into his mouth by a nice nurse but clearly not enjoying it. I sat next to him and spoke, touched his arm and he didn't even know I was there. He hadn't recognized me in over a year.

If this is similar to your FIL's condition you might ask BIL to explain how more of this life can be fun for his dad.

Maybe he doesn't want to feel like he "killed" his dad. If all interested parties wrote a nice letter to BIL stating that they love FIL really felt like following the directive was best for FIL maybe he would feel relieved of the awful responsibility?

Medical folks can chime in but between FIL's dementia and drugs I doubt that FIL will know/feel anything anyway.

[gasman]

Lot of good advice here for a terrible situation. Getting a neutral third party involved is key. Whoever you can find that communicates well with you guys and your BIL. A doctor, nurse or social worker may be able to help open communication. I've seen some very good social workers that seem to be able to handle this role. It won't be easy. I think your BIL has so much heat because he's losing his Dad and he doesn't have the emotional maturity to see beyond that fact. He is showing that he is desperate to hang on to his Dad no matter what and can't see what's best for his Dad. A third party may help him understand how wrong it is to keep pushing. Nobody lives forever.

You and your family need to be able to communicate with your BIL how you feel, that's why a third party may be the best way.

Your FIL is suffering but, if his dementia is that bad he may not have the awareness, except vaguely, that he is uncomfortable. So that's a small positive in a hugely lousy situation .

Best of luck.

[wc1934]

Man, I feel sorry for you and your family. As some have stated, there is no correct answer. Just try to support your wife/family as best you can.
I wish you well.

[Aaron O]

This obviously won't help the OP, but I am not my wife's POA for this issue, her best friend is. I thought it best to have this decision, made in accordance with her wishes, in the hands of someone a little more removed.

She is mine...she's told me multiple times she'd have no problem pulling the plug on me.

[54ny77]

Horrible situation. Been in similar.

I'm assuming there aren't any estate planning shenanigans going on that are prompting this life extension. While I hate to even suggest it, having seen that ugliness happen before, you or a relative that's authorized might look into it if there's a designated estate attorney in the mix of it all.

You & your wife do what you think is right in your heart, for you & your father in law.

Karma will work its miracle on that other family member.

[Tony T]

Sometimes its hard to let a loved one go.
This is especially hard if you are the one designated to make the decision.

[Pastashop]

Lots of good advice and positive vibes, to which I add my sympathies. (Bought a bike from 007 and had a great interaction.)

Having a chat with a person specializing in matters of religion / psychology / social work is probably the way to go here, because pure reason is clearly out of consideration for the BIL.

Also, for what is worth, I read this quote recently and found it somewhat uplifting actually:

RIP utilitarian philosopher Derek Parfit: “When I believed the non-reductionist view [of personal identity], I also cared more about my inevitable death. After my death, there will [be] no one living who will be me. I can now redescribe this fact. Though there will later be many experiences, none of these experiences will be connected to my present experiences by chains of such direct connections as those involved in experience-memory, or in the carrying out of an earlier intention. Some of these future experiences may be related to my present experiences in less direct ways. There will later be some memories about my life. And there may later be thoughts that are influenced by mine, or things done as the result of my advice. My death will break the more direct relations between my present experiences and future experiences, but it will not break various other relations. This is all there is to the fact that there will be no one living who will be me. Now that I have seen this, my death seems to me less bad.”

[bicycletricycle]

I think that it is important to speak the truth (as you see it) in important matters like this. It may have a cost that is tough to accept but I also believe that it is a moral obligation to do so. If thoughtful considerate people stay quiet we all loose in the end. To the extent that it is possible it is also important to keep an open mind towards your brother in law, he is obviously in pain and afraid, he also needs care and attention.

Obviously these things are extremely tough to negotiate and compromises will have to be made, do what you think is right so that you can be proud of your actions.

My mother was in a coma for a few weeks a while ago, she was almost dead, it was very hard, I did what I could for myself and for others in the family ( I was not always pleasant, I have had a very hard relationship with my mother). I know that I made mistakes but I know that at the time I did the best that I could and that is comforting now.

Good Luck

[Aaron O]

The more I've thought about this...the more I think your best path, and your responsibility, is to say/do nothing other than to support your wife. This is her fight. It's her father...regardless of how close you are. It's her call...and I think I'd do nothing other than support your spouse...counsel as asked...help as needed.

My sister is tough...we barely speak now and go through periods of not speaking at all. Until very recently (illness related), she was essentially estranged from our parents. She's a pain, but I also love my niece, and my crap with her hurts me and it makes a relationship with my niece difficult. It would be easy for me to say she's a schmuck (and she is), and I don't care if she's angry...etc...but it's also not true. I'm going to have to deal with her...and I still hold hope that someday things might change.

I would be very careful with the relationship with your brother in law...no matter how strained...and I'd be mindful that choices I made might effect your wife's relationship with her brother, regardless of how tenuous it is. I don't think I agree with the "screw him, do what's right for the dad" sentiment as expressed...I think my dad would prefer suffering if it meant less of a rift.

This is personal, but a while ago my father asked me to be executor of his estate, including over a trust for my niece. We're not talking huge dollars...but it's a year or two of tuition. He didn't trust my brother in law, or sister, with the money. I don't like saying no to my dad...but I said no...because had I said yes, it would kill any chance at a relationship down the road. So we'll pay the estate fees.

[Climb01742]

Another possible way to look at the situation:

If you believe in karma, situations are never random and never products of luck, not good or bad luck. We are where our actions have led us. We are presented with situations as opportunities to learn and grow.

Could you step back from the situation, step back from what you see as your role and your wishes, and see the entirety of each person's role and place in the situation. Is there an opportunity to learn something here, maybe something uncomfortable or challenging? Is there a person in the situation who needs your compassion and understanding?

I know it's hard (I'm crappy at it) to put our own sense of right and wrong aside, to set our desires aside, and see something painful as a chance to change and grow. To see a moment radically differently. Is there something like that chance somewhere in this difficult moment?

Simply put, life might not be doing something_to_ your family right now, but doing something_for_your family. I don't think the universe is cruel. It's a stern but loving teacher. Can you see a lesson here somewhere?

I hope all your family find a door to peace.

[93legendti]

I am sorry for your situation. Terribly sad and awfully stressful.

You're right, it is a lose-lose situation.

The brother in law is in a different place.

I've been thru a version of this scenario and tried talking to the wife of the son who is not being "realistic". Didn't help.

If a person isn't acting rationally, you can't reason with them.


If you go over his head, he will respond in kind.


I don't see a "winning" path, I am sorry to say.

[beeatnik]

*

[bluesea]

The more I've thought about this...the more I think your best path, and your responsibility, is to say/do nothing other than to support your wife. This is her fight. It's her father...regardless of how close you are. It's her call...and I think I'd do nothing other than support your spouse...counsel as asked...help as needed.

My sister is tough...we barely speak now and go through periods of not speaking at all. Until very recently (illness related), she was essentially estranged from our parents. She's a pain, but I also love my niece, and my crap with her hurts me and it makes a relationship with my niece difficult. It would be easy for me to say she's a schmuck (and she is), and I don't care if she's angry...etc...but it's also not true. I'm going to have to deal with her...and I still hold hope that someday things might change.

I would be very careful with the relationship with your brother in law...no matter how strained...and I'd be mindful that choices I made might effect your wife's relationship with her brother, regardless of how tenuous it is. I don't think I agree with the "screw him, do what's right for the dad" sentiment as expressed...I think my dad would prefer suffering if it meant less of a rift.

This is personal, but a while ago my father asked me to be executor of his estate, including over a trust for my niece. We're not talking huge dollars...but it's a year or two of tuition. He didn't trust my brother in law, or sister, with the money. I don't like saying no to my dad...but I said no...because had I said yes, it would kill any chance at a relationship down the road. So we'll pay the estate fees.


Thanks for sharing.

Kirk007,
Keep your immediate family close, take care, and good luck in your choice.

[weisan]

The harder you push, the bigger the fight he's going to put up...to save face. He IS the Guardian...after all.

My sense is the situation will resolve itself fairly quickly - beyond you or your brother-in-law's direct control.

So, first, recognize you are not in the position to dictate terms, soften your stance, back away, give him some space.

Secondly, know that your father-in-law will be the one deciding ultimately, and he will.

[ultraman6970]

Sorry this is happening to you, but happens and more often that we could think... I agree with many but is hard to be in the same spot and advice because everybody is different.... what I would do because I been doing stuff like this for a very long time with my family and my wife family members... get out of the way, support your wife and if you can set her aside aswell because she is suffering aswell and let the inlaw to cut the cake. Even if it sounds cold, get her out of the circle and maybe easier than you think because she assumed the ending already.

Honestly when you have an old person that dies or is knocking the door's death I take it really calmly because we are talking about the cycle of life but with young people man... it hurts me so much that you can't imagine.

There's no worse def than the one refusing to listen and those ones you have to leave them alone, at some point they realize what is going on and be there for those def ears you know.

Hope everything work out for the best of everybody later on... and sorry if I sounded tad cold but that have worked for me well in situations like that.

[Jad]

This must be so hard and I'm sorry you need to navigate the situation. I hear a lot of experience and care from the rest of the board; I'd just add that all you can do is what you think is right for the most vulnerable person.

I also think that holding back in the interest of preserving a relationship could, as some have suggested, ultimately become toxic to that relationship. Of course, communicating about this with her brother is easier said than done. Take care and act with compassion. Good luck.

[Tickdoc]

Man, sorry to see you have to deal with this. My wife dealt with a similar situation with her mom.

It's tough to support your wife through this and not step in. Everyone is drained, sad and emotionally charged at the same time.

After her moms passing things got worse. She (my wife) was executor but her brother stepped in and mismanaged all of their mother's monies since he was listed on her accounts. Much arguing and taking of sides took place, money was squandered, and my wife eventually stepped aside.

They didn't speak for three years.

Hang in there prayers to your family.

[2LeftCleats]

Is there a hospital ethics committee?

[Kirk007]

Thank you all for sharing your thoughts and experiences. This is a special place indeed.

Much wisdom here, and it helps to examine things from all of the different perspectives offered here.

So many issues tangled up in a ball, personal, familial and societal. My father in law had, at least until the past few years a remarkable courageous life, from surviving the Battle of the Bulge to meeting his wife, who was a war refugee, having been kicked out of her home country of Guatemala due to her uncle being a German National accused of spying, and found volunteering at a Red Cross station in Germany; after the war pursuing her hand long distance when he was back home in North Carolina and she was back in Antigua. The stories go on and then the tale's final chapter - 8 years in a memory facility, eroding away, reduced to a shell unable to perform the most basic of bodily functions independently, waiting for the chapter to close. There must be a better way for these end of life scenarios than what we subject our elderly to.

As I've thought about it, I have thought about karma and purpose and what could be the final purpose of this brave man's last days. For his son, I do believe it offers an opportunity to perform a selfless act, to put, for once, someone else"s needs before his own. For me and my wife, I am not sure; but I'm working on it. Perhaps for me its being willing to reach out to a virtual community of bicyclists; to put aside a stubborn self reliant streak, to willingly accept the grace of others and to become comfortable admitting to that. After all, I'm a guy and we all know how much we hate to admit that we are lost and ask for directions ; )

[54ny77]

Beautiful words.

The Greatest Generation indeed.

:beer:

Thank you all for sharing your thoughts and experiences. This is a special place indeed.

Much wisdom here, and it helps to examine things from all of the different perspectives offered here.

So many issues tangled up in a ball, personal, familial and societal. My father in law had, at least until the past few years a remarkable courageous life, from surviving the Battle of the Bulge to meeting his wife, who was a war refugee, having been kicked out of her home country of Guatemala due to her uncle being a German National accused of spying, and found volunteering at a Red Cross station in Germany; after the war pursuing her hand long distance when he was back home in North Carolina and she was back in Antigua. The stories go on and then the tale's final chapter - 8 years in a memory facility, eroding away, reduced to a shell unable to perform the most basic of bodily functions independently, waiting for the chapter to close. There must be a better way for these end of life scenarios than what we subject our elderly to.

As I've thought about it, I have thought about karma and purpose and what could be the final purpose of this brave man's last days. For his son, I do believe it offers an opportunity to perform a selfless act, to put, for once, someone else"s needs before his own. For me and my wife, I am not sure; but I'm working on it. Perhaps for me its being willing to reach out to a virtual community of bicyclists; to put aside a stubborn self reliant streak, to willingly accept the grace of others and to become comfortable admitting to that. After all, I'm a guy and we all know how much we hate to admit that we are lost and ask for directions ; )

[Ray]

After reading through a number of responses since my own, I'd just add a reiteration of what some others have emphasized - your primary role here is to support your wife however SHE wants you. Regardless of your own feelings. If she wants / needs you to help her advocate her position with her brother and other siblings, do that. If she just needs you to help her through her own feelings and she can be her own advocate, just do that. While you no doubt have your own feelings and your own relationship with her father and her brother, she's primarily the one who has to balance her Dad's needs against her brother's current desires and the longer term relationship with him.

I fully believe what I said earlier - putting your BIL's feelings over concern for what their father is going through will not help the overall relationship in the long term. I also believe that's HER call. And if she chooses a different approach than you would (despite you providing HER with your input), you should just help her with that and only play an advocacy role for her position if she clearly wants you to.

My wife gave me plenty of support and help when I went through it with each of my parents and my very different siblings and I did the same for her with her Dad and her own sibling dramas (and will do the same when her Mom's time comes). So my earlier advice stands, but only to the extent it's in the service of supporting your wife in her dealings with her family. If you and she aren't on the same page, let her know how you feel, but don't be a free agent with her siblings - she has to play that role and you primarily just need to be there for her...

-Ray

[mnoble485]

This obviously won't help the OP, but I am not my wife's POA for this issue, her best friend is. I thought it best to have this decision, made in accordance with her wishes, in the hands of someone a little more removed.

She is mine...she's told me multiple times she'd have no problem pulling the plug on me.

This. I didn't want to put this decision on my wife. My best friend has POA a for me and we have discussed this many times.

Mike

[etu]

I sympathize with your situation and respect your concern for your father in law. However don't forget the living. The dying process is more often about the family than the person, especially when their mental faculties are compromised either from chronic deterioration or their acute condition. I think it's important to remember what your father in law would have wanted not for himself but for his children. Last thing would be for their to be conflict and a rift over this death. I would support your wife, but also avoid encouraging any resentment. Most of us idealize a death surrounded by family and friends who celebrate our life and serve to affirm that we left a positive legacy.
I recently had the privilege of caring for a Battle of Bulge veteran who passed. When the eventual outcome was clear, our focus was on the family and making sure the process of closure was as least as painful as possible and without distractions. IMO a great deal of the responsibility for these case rests with the physician who has to develop trust with the family and then be unequivocal about the prognosis. The latter can be uncomfortable to do, but part of our job is to unburden the family of any guilt or responsibility over the dying process. Family member should not feel like they are the ones withdrawing support or "letting" their loved ones die. Unfortunately sometimes the underlying family dysfunction is impossible to manage smoothly. In these cases, mercifully modern medicine can't hold off death forever.
I have found that the key to the process is the trust that we build at the initial encounter. Since there is already friction between your brother and the current inpatient team, I wonder if there is a primary care provider or someone else who has cared for your father in law longitudinally as an outpatient that your brother knows and trusts. That person could be help your him allow this process come to a close.

[Rusty Luggs]

..... Yet, continuing to say nothing results in a continuous loop in my mind of the saying that all it takes for evil to succeed is for good men to do nothing.....

This one thing strikes me from the original post.... Is everyone who disagrees with my strongly held beliefs "evil"? Is the only "right" decision the one I would make? Or the one the majority of people would make?

Might be ill informed, emotionally driven, immature, insensitive to other peoples views, maybe even stupid, but evil? I think if I would work on getting that idea out of my head before I did anything.

[Aaron O]

This one thing strikes me from the original post.... Is everyone who disagrees with my strongly held beliefs "evil"? Is the only "right" decision the one I would make? Or the one the majority of people would make?

Might be ill informed, emotionally driven, immature, insensitive to other peoples views, maybe even stupid, but evil? I think if I would work on getting that idea out of my head before I did anything.

Kind of agree here...your brother in law is losing a father. It's not the choice I hope I'd make, but he's probably trying to do what he considers the right thing. He might be rationalizing his own feelings into what he thinks is right, but it's a tough choice I never want to be in. It's not the choice I hope I'd make, but it's a tough situation, and I'd be loathe to use absolute terms.

I'm extremely close with my dad...I love the heck out of him...and it's easy for me to judge on the internet without emotion. I don't know what I'll be thinking if it's ever my turn...and I know darn well what my dad's choices would be.

[fuzzalow]

“The only thing necessary for the triumph of evil is for good men to do nothing.” is a favored Edmund Burke quote of mine and one that IMO, is useful to instill activism and responsibility in civic society.

This one thing strikes me from the original post.... Is everyone who disagrees with my strongly held beliefs "evil"? Is the only "right" decision the one I would make? Or the one the majority of people would make?

Might be ill informed, emotionally driven, immature, insensitive to other peoples views, maybe even stupid, but evil? I think if I would work on getting that idea out of my head before I did anything.

No, you are using the quote far too literally, oversimplifying it's sentiment and furthering its misuse into a comfortable, if misguided, polarization between your views and of other views. There's no such thing as black and white along the gradient of modern society, it's all a continuum of grey.

Although evil may still apply as an appropriate term to the most egregious assaults against fundamental tenets of society: for example such as the elevation and propagation of mistruths and/or the delegitimization of 1st Amendment free press and/or delegitimization of the co-equal branch of the judiciary.

No drift intended but nonetheless related to writing from the OP.

FWIW, if this is somehow a term applied to the BIL, I'd say it was also misapplied. Evil must also confer intent and I do not view this as driving the BIL motives. I rather see it as confusion, conflicted emotions and the bewilderments of human frailty. I would try to be more forgiving as we cannot really know that in the same conundrum any of us could do any different or better.

[54ny77]

such a good thread. excellent comments by all.

end of life discussions taking place more & more each day, it seems.

so many loved ones depart unexpectedly or eventually (via prolonged illness).

[carpediemracing]

My dad died Oct 2016. He was admitted into program the prior Saturday (home hospice so basically a nurse came to verify that he seemed appropriate for hospice care). First actual hospice visit was Tuesday morning. My dad died that Tuesday afternoon.

So my experience with hospice was brief.

However, the one thing that I took away from hospice vs hospital care is that hospice is an acknowledged end of life kind of care. The emphasis is on comfort and dealing with the surviving family. Hospital care emphasizes prolonging life at any virtually any cost.

[Kirk007]

This one thing strikes me from the original post.... Is everyone who disagrees with my strongly held beliefs "evil"? Is the only "right" decision the one I would make? Or the one the majority of people would make?

Might be ill informed, emotionally driven, immature, insensitive to other peoples views, maybe even stupid, but evil? I think if I would work on getting that idea out of my head before I did anything.

Yeah no worries Rusty evil is certainly not the right adjective it was just a handy phrase that I wanted to more or less accurately quote to describe the discomfort I feel with the idea of staying silent in the face of a situation that you have a stake in and that poses an ethical/moral dilemma.

And as others like Aaron have suggested I recognize my primary role of support for my wife rather than a direct participant, at least in the absence of an extended family discussion.

We recognize the emotional struggle for BIL and feelings of understanding compassion and kindness for him are certainly there, but frankly he's been a self centered jerk towards his siblings and nephews for a long time, so there's already pre-existing emotions that are exacerbated by the feeling that father in law should be allowed to pass without extraordinary measures, as was agreed to by the siblings when the Physician's Directive was executed under less stressful, emotional times. It is the backsliding from that directive that is causing further friction. BIL knows how we and other family members feel on this and was reminded directly by his sister (my wife) yesterday, and he has been counseled by at least 3 doctors, and the head of skilled nursing at the memory care facility. But he has been in denial of this day for years. He holds the cards and the responsibility, he has isolated himself and is dismissive of the counsel of all others. As I believe Angry Scientist pointed out, he will have to live with his decisions.

We have made our peace with FIL's passing; we have said our goodbyes. All that is left is how much further suffering and sadness we all endure, particularly if against all odds FIL survives this challenge and we go through one or more repetitive cycles of this crap.

[Climb01742]

It is the backsliding from that directive that is causing further friction. BIL knows how we and other family members feel on this and was reminded directly by his sister (my wife) yesterday, and he has been counseled by at least 3 doctors, and the head of skilled nursing at the memory care facility. But he has been in denial of this day for years. He holds the cards and the responsibility, he has isolated himself and is dismissive of the counsel of all others. As I believe Angry Scientist pointed out, he will have to live with his decisions.

This may be the crux of the situation. Your role may be as a witness. Be there for your wife but otherwise you may only be able to watch. It's the BIL's drama and his karma and his issues to work through. Watching someone you love in pain is damned hard. Sorry you're going through it.

[Pastashop]

007, I looked through the thread once more and didn't see it brought up, so... I mentioned this thread to a doctor friend and was told that every (big) hospital has an ethics review board, which you can engage in this type of situation. Is this an option?..

[OtayBW]

BIL knows how we and other family members feel on this and was reminded directly by his sister (my wife) yesterday, and he has been counseled by at least 3 doctors, and the head of skilled nursing at the memory care facility. But he has been in denial of this day for years. He holds the cards and the responsibility, he has isolated himself and is dismissive of the counsel of all others.
This is as much of a shame as dealing with your FIL's condition. IMO, your BIL is creating a toxic situation that will likely linger to his own detriment and that of your family long after your FIL is gone.
Hope you and your wife can get some detachment (not quite the right word...), and have a clear mind about all this moving forward.

[jumphigher]

Sorry to hear about your situation, OP. I feel the same way, extending the life of someone in that state is not helping them in any way imo, and probably prolongs a lot of suffering. Sucks. I wish you the best.

[gordosburritos]

Really tough situation. I deal with critical care/death as part of my job as a heart doctor and my wife is a palliative care physician. A couple of ideas:
1. I would request a palliative care consult if available. This is separate from hospice referral. One of the jobs of palliative care teams is to work with families to help bring them together and get on the same page. They have the time and more importantly the expertise that most physicians/nurses don't have. It is a major part of their job and they're usually pretty good at it.
2. Ethics review if there is a true concern for medical futility. I am not sure if the situation is truly futile from reading this thread but could be looked into. Realize of course this will drive a wedge into the family rather than trying to pull folks together.
3. Find out ways to support brother in law. This is likely the most challenging but may help build a connection to better understand his viewpoint and possible keep future events like this from happening. If he can move past the him vs. everyone mentality he may be more open to shared decision making.

not easy. best of luck to you and your family.

[Chris]

007, I looked through the thread once more and didn't see it brought up, so... I mentioned this thread to a doctor friend and was told that every (big) hospital has an ethics review board, which you can engage in this type of situation. Is this an option?..

I am the Chair of the ethics board at our hospital. This situation is not unusual and we often sit with all of the family members and physicians involved to discuss the current status of the patient and realistic expectations. It often helps the person who has unrealistic expectations to come to terms with the reality of the situation in a fairly supportive environment. Good suggestion.

[gngroup]

My only comment (and I didn't read through all of the posts yet), would be that you and your wife should at the very least communicate your feelings to him (perhaps very delicately). Beyond that, it's hard to know the outcome with certainty but at least you will have spoken up and that alone may lend itself toward keeping the familial relationship amicable going forward. Tough situation. Sorry to hear about it but best of luck.

edit - Just read that you have done this already. Hopefully BIL comes to the conclusion everyone is pointing him toward very soon.

[Jeff N.]

Out of respect for the collective wisdom, life experience and kindness of so many on this forum whom I've come to know electronically over the years, I seek any counsel that you may offer; perhaps some of you have been through this and made it through to the other side relatively intact.

Situation: 92 year old father in law, in year 10 of dementia, hospitalized 11 days ago with pneumonia, UTI and septicemia. Hanging on by a thread with multiple antibiotics and IVs. Barely eating.

Brother in law is Guardian and has Power of Attorney for medical decisions. Living will in place. Physician's Directive in place directing antibiotics for comfort only, no tube feeding. Brother in law thinks he can be saved, and now trying to go back on the Directive, which he executed a few years ago as guardian.

Wife (and me and the rest of the family). Adamantly against extraordinary life extending measures, believe this man has suffered enough and current efforts by brother in law are extending suffering and are being made for his own interest/inability to accept death. Brother-in-law is very angry, nasty lashing out at everyone and anyone, including health care providers as not doing enough to save his father (long pattern of narcissistic behaivour here). Acting independently, not seeking input from other family members and ignoring counseling of at least 3 doctors.

I am torn as to what to do, if anything, as is my wife. On the one hand we believe her father to be suffering and her brother's conduct, while in some ways understandable nevertheless is inhumanely selfish and contrary to his duties as Guardian to do what is in the best interests of his father. His conduct is deepening the gulf that already exists between him and his sister, and me and other family members.

If we say nothing, father-in-laws suffering may continue through the "miracles" of modern medicine.

If we confront, even gently and with kindness, brother-in-law, the likelihood of him hearing and reconsidering his path is remote. Far greater is the likelihood that he lashes out even more at the family and the family relations deteriorate even further. Yet, continuing to say nothing results in a continuous loop in my mind of the saying that all it takes for evil to succeed is for good men to do nothing.

This is sadly a lose, lose situation I think. The biggest loser short-term at least in my view is my father in law whose suffering is needlessly prolonged. For my wife, this is her only living brother and as the conflict continues she loses him as well, but the relationship is not, as of yet irreparable (but it could become that). Ultimately her brother stands to be the biggest long term loser as he drives the rest of the family away from him. Never married, too self centered for the give and take of any relationship, he is on the path to a lonely future.

All of these outcomes suck, for everyone. And so my (our) dilemma - keep quiet unless asked or speak up (wife very conflict avoidant as her brother gets verbally nasty)? Third party intervention? How far do you go (trying to hold my litigator training at bay)?

Again if anyone has gone through a situ like this and had a good outcome, I'd love to hear how you did it.

Grazie mille,

Greg
As an R.N. for 36 years, 10 years spent as an ICU R.N., I've seen this kind of situation far too many times: a do-gooder family member who insists on everything being done to keep their "loved one" alive and suffering when the prognosis is extremely poor at best. We used to call it, "whipping a dead horse" behind closed doors. Unfortunately, if you aren't the responsible party there's really not much you can do except having one or more of the docs try to talk some sense to your Bro-In-Law or some kind of ethics committee intervention. If he continues to be unbending...well...:crap:

[54ny77]

If anything, this thread is a wake-up call to get one's affairs in order so stuff like this never happens when the golden years come to a close.

[Jeff N.]

If anything, this thread is a wake-up call to get one's affairs in order so stuff like this never happens when the golden years come to a close.Abso-freakin'-lootly. NO CODE!!!

[unterhausen]

it's really tough when these things actually happen. My dad suffered from Parkinson's with dementia for the last 5 years of his life, and he was barely ever awake towards the end. He would have lasted quite some time with only a slightly elevated standard of care. But none of us were really prepared to just let him die, which was no doubt the best thing for him. He got pneumonia and died from that. My sister was pretty upset that it wasn't treated. Trying to convince my wife and kids to kill me when I get to that point is tricky.

[Tony T]

As an R.N. for 36 years, 10 years spent as an ICU R.N., I've seen this kind of situation far too many times: a do-gooder family member who insists on everything being done to keep their "loved one" alive and suffering when the prognosis is extremely poor at best.
We used to call it, "whipping a dead horse" behind closed doors.

Seems a bit insensitive to me.
Also not sure why you have "loved one" in quotes.

[Tony T]

If anything, this thread is a wake-up call to get one's affairs in order so stuff like this never happens when the golden years come to a close.

The patient did have his affairs in order. He had a living will and a doctors directive and a health care proxy.
In this case (if I understand correctly), the proxy is overriding what was indicated in the doctors directive.

So, even if one does have their affairs in order, things may not go as expected.

[Chris]

Seems a bit insensitive to me.
Also not sure why you have "loved one" in quotes.

I don't think it's insensitive at all. You see the worst sides of people in these situations. People committed to essentially torturing a person so that they don't have to deal with the death of their family member. Once you've been subjected to that kind of abject selfishness over and over it gets to be a pretty discouraging perspective of mankind. I feel for the original poster.

[Tony T]

In this case, the patient has a directive in writing that he does not want a feeding tube, so I see the proxy not acting responsibly.
If a patient does not have that directive and is uncommunicative, it's tough for the proxy to make the decision to withhold feeding (I would not characterize this as selfishness). Is starving to death less torturous? I don't know the answer to that. AFAIK, the only way to lessen the pain and hasten the inevitable is with morphine. It would be better if this country did not have laws that made end of life decisions difficult.

A timely OpEd in the NYT today: First, Sex Ed. Then Death Ed (https://www.nytimes.com/2017/02/18/opinion/sunday/first-sex-ed-then-death-ed.html?action=click&pgtype=Homepage&clickSource=story-heading&module=opinion-c-col-left-region&region=opinion-c-col-left-region&WT.nav=opinion-c-col-left-region&_r=0).
I am a doctor who practices both critical and palliative care medicine at a hospital in Oakland, Calif. I love to use my high-tech tools to save lives in the intensive-care unit. But I am also witness to the profound suffering those very same tools can inflict on patients who are approaching the end of life. Too many of our patients die in overmedicalized conditions, where treatments and technologies are used by default, even when they are unlikely to help. Many patients have I.C.U. stays in the days before death that often involve breathing machines, feeding tubes and liquid calories running through those tubes into the stomach. The use of arm restraints to prevent accidental dislodgment of the various tubes and catheters is common.

Many of the patients I have cared for at the end of their lives had no idea they were dying, despite raging illness and repeated hospital admissions. The reasons for this are complex and varied — among them poor physician training in breaking bad news and a collective hope that our technologies will somehow ultimately triumph against death. By the time patients are approaching the end, they are often too weak or disabled to express their preferences, if those preferences were ever considered at all. Patients aren’t getting what they say they want. For example, 80 percent of Americans would prefer to die at home, but only 20 percent achieve that wish.

Many of us would choose to die in a planned, comfortable way, surrounded by those we love. But you can’t plan for a good death if you don’t know you’re dying. We need to learn how to make a place for death in our lives and we also need to learn how to plan for it. In most cases, the suffering could have been avoided, or at least mitigated, by some education on death and our medical system. The fact is that when patients are prepared, they die better. When they have done the work of considering their own goals and values, and have documented those preferences, they make different choices. What people want when it comes to end-of-life care is almost never as much as what we give them.

[93legendti]

^

The issue is one of medical ethics, of which I am somewhat familiar as my Uncle has lectured on medical ethics and the Nazis all over the world.

He was also a class mate of the notorious Dr. Kevorkian, with whom he vehemently disagreed.

It is not as simple (or cut and dry) as it has been portrayed in this thread.

https://reachmd.com/programs/clinicians-roundtable/how-medical-ethics-were-compromised-during-the-nazi-regime/2720/

[Jeff N.]

I don't think it's insensitive at all. You see the worst sides of people in these situations. People committed to essentially torturing a person so that they don't have to deal with the death of their family member. Once you've been subjected to that kind of abject selfishness over and over it gets to be a pretty discouraging perspective of mankind. I feel for the original poster.Agreed. Thanks. Death, in the cases we're talking about, is a reward and relief...the end of unbelievable suffering. I, too, feel for the original poster.

[Tony T]

You realize you just agreed with a post that agreed with your post.
I realize that doctors and nurses deal with sickness and death on a daily basis, so I understand how it may be easy to see every family member that is going though a difficult time as "selfish" and also making the doctors and nurse jobs more difficult (yes, if would be easier if they just did what the professionals suggest), but to lump them all together as do-gooder family members and saying behind closed doors that they are "whipping a dead horse" is at a minimum insensitive to what the family of your patients are going through.

[Aaron O]

^

The issue is one of medical ethics, of which I am somewhat familiar as my Uncle has lectured on medical ethics and the Nazis all over the world.

He was also a class mate of the notorious Dr. Kevorkian, with whom he vehemently disagreed.

It is not as simple (or cut and dry) as it has been portrayed in this thread.

https://reachmd.com/programs/clinicians-roundtable/how-medical-ethics-were-compromised-during-the-nazi-regime/2720/

I think it's pretty simple to categorically reject your attempted comparison of a eugenics based death tribunal with hospital staff and family members attempting to ease pain and follow the dictates of living wills.

[Jeff N.]

You realize you just agreed with a post that agreed with your post.
I realize that doctors and nurses deal with sickness and death on a daily basis, so I understand how it may be easy to see every family member that is going though a difficult time as "selfish" and also making the doctors and nurse jobs more difficult (yes, if would be easier if they just did what the professionals suggest), but to lump them all together as do-gooder family members and saying behind closed doors that they are "whipping a dead horse" is at a minimum insensitive to what the family of your patients are going through."Do gooder family member"=the legally responsible family member thinking they're doing the right thing by insisting everything be done to keep the dying patient alive when the prognosis is extremely poor, making the other family members feel guilty for seeing things otherwise. "Beating a dead horse"=insisting, again, that everything be done in spite of the OBVIOUS SUFFERING that the dying patient is going through and there is ZERO possibility of survival. The terms may seem insensitive, and maybe they even are...but the terms are EXACTLY what it is. Palliative care should come into play. And if you're implying that suggesting palliative care is a way of making the job of MD's/RN's easier in these cases...well...I must STRONGLY disagree, Sir.

[54ny77]

I worked alot with a palliative care nurse in connection with a dying family member.

She was an angel.

The best, most gracious person and perfect for the situation.

She used to be an ER nurse for many years in a high pressure location and decided to make a career/practice switch.

I am thankful for the skilled person we dealt with in that profession, as was my family.

"Do gooder family member"=the legally responsible family member thinking they're doing the right thing by insisting everything be done to keep the dying patient alive when the prognosis is extremely poor, making the other family members feel guilty for seeing things otherwise. "Beating a dead horse"=insisting, again, that everything be done in spite of the OBVIOUS SUFFERING that the dying patient is going through and there is ZERO possibility of survival. The terms may seem insensitive, and maybe they even are...but that's EXACTLY what it is. Palliative care should come into play. And if you're implying that suggesting palliative care is a way of making the job of MD's/RN's easier in these cases...well...I must STRONGLY disagree, Sir.

[Chris]

You realize you just agreed with a post that agreed with your post.
I realize that doctors and nurses deal with sickness and death on a daily basis, so I understand how it may be easy to see every family member that is going though a difficult time as "selfish" and also making the doctors and nurse jobs more difficult (yes, if would be easier if they just did what the professionals suggest), but to lump them all together as do-gooder family members and saying behind closed doors that they are "whipping a dead horse" is at a minimum insensitive to what the family of your patients are going through.

That's not what was meant and anyone reading this thread with the intent of give and take knows that. The simple point is that, at times like this, there are plenty of options to care for the patient other than the "do everything" approach that is often so tied to the West's fear of death. Comfort measures only (palliative care) and Hospice are excellent and very caring approaches for both the patient and their family.

[BuddyB]

This is a difficult situation and I hope you and your family knows that there is no correct answer.

I have treated many patients in similar situations as your Father-in -Law and based upon what your are describing he seems to be receiving palliative care. The IV fluids and antibiotics will help keep your FIL comfortable, but will not stop or slow the disease process which resulted in his DNI/DNR orders.

I would strongly suggest that your family request a consult with the hospital's Palliative Care Team and listen very carefully to information that is being provided and work with them to develop plan of care for your father in law. If the hospital doesn't have a Palliative Team then ask to for the Nurse Navigator and ask the nurse for help.

The problem with DNR for patient's that are terminally ill is that loved ones expect the sick family member to die from the disease directly, such as cancer, AIDS, etc. not from an indirect cause like an infection. Often families have a hard time connecting the dots and feel as though the current problem cannot be related to the terminal illness, so they feel empowered to ignore the DNR orders. I would suggest doing some research and reading on how patients with dementia leave this life.

I would encourage you to talk to your wife and brother and law and ask them how they envision their dad passing - this insight may help you understand the current conflict.

Best of Luck

Buddy B

[unterhausen]

that sounds like good advice. My dad was in a nursing home, you would think they would have this nailed. But they would ask us if they should do something just about any time they did anything more than changing his bedpan. It was constant torture for us. What made it worse was that there was a time when he was in the hospital for a month and I had the occasion to wonder if that was a good expenditure of medicare $ to prop him up like that. Then he had a couple of good years after that. So when someone is in a gradual decline, it's really tough to just give up.

[Kirk007]

Thanks all for your advice, it is really very helpful to hear others experiences and the advice of the professionals who deal with this. We have a really amazing depth and breadth of knowledge here. BuddyB - thanks for the info on the antibiotic use - I've not thought of antibiotics as a palliative tool as opposed to live saving.

Update: FIL has survived this round of infections, all four of them, at least to date, and is now in a skilled nursing facility, where he truly, sadly looks like that beaten horse. The Head Doctor there seems to be making some progress on helping BIL see the reality (he walked into the meeting saying that "our" goal was to get FIL back to eating well and exercising!) - and, at least for now, has talked him down from use of a feeding tube, has gotten him to agree that he will be cared for there and not returned to hospital for more intensive, life extending care. He has told him, whether he's accepted it or not, that FIL will likely not be able to leave skilled nursing and returned to the memory care unit, and to begin to make arrangements for funeral services.

We are taking it day to day, BIL still really struggling and adamantly refuses to get any other consult to help him deal with end of life issues, insisting that he doesn't have a problem and that his dad is a tough nut (he is) who still wants to live. As a result, family relations are still strained and that will take time to repair if indeed it can be repaired. We'll see what happens with the next downturn....

[bob heinatz]

There is never a easy answer in this situation. I went thru the same thing with my mom. It was very tough to let go and I felt guilty but this is all part of life.

[Bentley]

I have been following this tread and I feel like I too can get something positive by sharing my own experience. Apologies for hijacking this thread.

In July of 2010 my mother had a stroke. Unbeknownst to me or my family, this is actually a common occurrence in Alzheimer's patients. I was out of town when I got the message, promptly I returned home. Let's just say that is where the story starts.

My Mom had a stroke in her temporal lobe, massive by the Doctor's description. At the time it did not "sink in". Over the next few days my family and I waited patiently for my Mom to get better, obviously that did not happen.

One morning the Doctor approached me and asked "what are you going to do?". Odd question, so I asked more, finally I grew to start to understand that the situation had become an end of life decision.

Following a tearful "family" meeting we asked for another CAT scan. The scan confirmed the situation and led to hard decisions. First, where would my mother spend her last days, more importantly would we withhold food and allow her to pass. That last part was impossibly difficult.

My Dad was in denial, I knew in my heart what my Mom would want, but it felt like a betrayal. In the end we made the hard decision which is often the right decision. We don't talk about it, maybe we should. An end of life discussion is one all families should have.

Good luck and God Bless

Ray

[Ray]

My Dad was in denial, I knew in my heart what my Mom would want, but it felt like a betrayal. In the end we made the hard decision which is often the right decision. We don't talk about it, maybe we should. An end of life discussion is one all families should have.


Whether or not you talk about how you handled your Mom's situation in retrospect, you should damn sure be talking to your Dad about how he'd want a similar situation to be handled when his time comes. I'm not sure why, but we'd had those discussions with both of my parents, at a few different points as they approached the end, but were still fully sentient and lucid. And it made the final steps much much easier to deal with, given that the event itself is never easy and always traumatic, no matter how much you know it's coming. My wife's family, for whatever reasons, hadn't really had those talks and her father's death was much more difficult and occasionally contentious as a result.

You're never going to be sure what the right steps to take are, but the more you've communicated with your folks before the moment comes, the more you can make decisions based on THEIR preferences rather than your own...

-Ray

[Bentley]

Whether or not you talk about how you handled your Mom's situation in retrospect, you should damn sure be talking to your Dad about how he'd want a similar situation to be handled when his time comes. I'm not sure why, but we'd had those discussions with both of my parents, at a few different points as they approached the end, but were still fully sentient and lucid. And it made the final steps much much easier to deal with, given that the event itself is never easy and always traumatic, no matter how much you know it's coming. My wife's family, for whatever reasons, hadn't really had those talks and her father's death was much more difficult and occasionally contentious as a result.

You're never going to be sure what the right steps to take are, but the more you've communicated with your folks before the moment comes, the more you can make decisions based on THEIR preferences rather than your own...

-Ray

Totally agree, talk with Dad is in the bag. We don't talk about what happened with Mom.

I was on a hospital board for 3 years, the "talk" and how Doctors need to facilitate was our CEO's "crusade"

Best

Ray

[bikingshearer]

Seems a bit insensitive to me.

I've known a few doctors and nurses who dealt regularly with pretty horrific stuff. All of them cared deeply about what they did and the patients they served.

And all had that gallows sense of humor. It's a coping mechanism, a necessary guard against personalizing the pain they witness so much they become unable to do their jobs.

[josephr]

Hey Kirk007 --- Was out getting a ride today...in the usual mind drift, for some reason started thinking about you and this thread. Just checking in, hoping your family was able to find resolution...

[Jeff N.]

I've known a few doctors and nurses who dealt regularly with pretty horrific stuff. All of them cared deeply about what they did and the patients they served.

And all had that gallows sense of humor. It's a coping mechanism, a necessary guard against personalizing the pain they witness so much they become unable to do their jobs.Exactly.

[gasman]

Kirk- what's the latest on your FIL. How's he doing ? More importantly how is rest of the family doing ?

[Kirk007]

Hey Dave,

He passed on Saturday. With the help of modern medicine he survived 4 different infections including sepsis and was released from the hospital into skilled nursing, where he hung on for about 4 weeks.

It was very, very sad to witness and there were some indications that the brother in law was finally getting that perhaps letting go a month ago would have been better, yet he kept up every effort to do everything he could to keep his dad alive, convinced that it was a good thing.

During the drama things were said and done that have significantly deteriorated the relationship between Cindy and her brother (at least from her perspective) and whether that can be repaired remains to be seen as the whole situation seemed to really shine a light on some underlying and long-standing issues.

Now we are going through the details of services and then probate etc., and hoping that everyone will find, in their own way and time, peace. For our household it is a mixed feeling of sadness with the loss of a parent and gratitude that Cindy's dad has now been released from what, by all appearances, seemed to be a very tortuous existence.

Thanks for asking,

Greg

[shovelhd]

So sorry to hear of all of this.

[54ny77]

Sincere condolences.

May your family find peace and solace in remembering all the positives during a life well lived.

[OtayBW]

It was very, very sad to witness and there were some indications that the brother in law was finally getting that perhaps letting go a month ago would have been better, yet he kept up every effort to do everything he could to keep his dad alive, convinced that it was a good thing.I don't want to second guess this, especially from a distance, but this sounds like just selfish behavior under the guise of altruism. Whatever, I hope your family finds their way now that things have to come to some kind of conclusion.

[jghall]

So sorry to hear Greg. Hopefully the family dynamics will fix itself with some time, patience, understanding, and love.

[bking]

While loosing family is hard, there are some circumstances where once it's over, there is relief. This seems like one of those. .
And regarding the family relation; if ever there were an adage that bore repeating, it is that time heals all wounds.

I have learned that some problems or challenges are best left alone for a while. Time often has a way of going a long way towards solving a problem on it's own. I think this especially true in family affairs.

very sorry for your loss.

[Kirk007]

thanks everyone. Great community here.

[gasman]

Greg- I'm glad that your FIL is no longer suffering , it seems he must have been very tough to live as long as he did.
Give Cindy my best and I hope that time and communication will improve relations with her brother.
Life can sure be complicated sometimes. Sheesh.