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Now I Have to Play God? So Daddy and I visited a lung specialist today who confirmed that there is a mass in his chest. With daddy's advanced age and other conditions, he feels it may be best to just let nature take its course.


The thing is...Daddy didn't make any advanced directives when he was of sound mind, and I'm left with the burden of deciding whether we should keep him alive when this mass rears its ugly head.


I have no support system as many of you know so I feel very alone right now. In a normal world I would discuss with the family but I can't take being railroaded by them right now or being called selfish for a DNR decision.


I'm angry. Why does this fall on me? Why should I suffer because he chose to smoke?


I'm afraid. I don't want this responsibility. I'm sad. I'm essentially left to decide his ultimate fate. I feel like a murderer.


This isn't fair. I don't know what to do.

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I've had to face just this situation with my mom a few weeks ago. She had a heart attack on top of an already weak heart. Long story short after two ER and hospital stays and rehab in between the docs couldn't find the right combo of meds that would strengthen her heart without compromising her blood pressure and kidneys. Though I had to push them to try in the first place and I believe they did, her body has too much damage. In the midst of all of that I had to deal with the DNR, AD stuff. She never dealt with it, neither has dad. So seeing her struggle I made the call to do the DNR.

It was very hard and not it's fair. Like you my brother is MIA and my dad has his own issues so it's on me like it or not. But I love her enough not to put her through any more turmoil than what she has already withstood. She started hospice yesterday and it's gut wrenching to go through this when she was walking the treadmill like a sport just three weeks ago.

You have to search your heart and you know your dad best. I struggled with all the same things too or many of them I'm sure. But after all I've seen with her, I prayed and said Lord I'm doing what I think is best. After all she's your child and now this is between you two. I am still there supporting her though and making sure to the best of my ability she has the best care possible.

You are no murderer. If you were you wouldn't be here in the first place telling us your struggle. Sounds like you are a loving, responsible daughter having to do some really hard grown up stuff and become the parent right now. You will make the right decision. Just know I'm right there with you facing it now, just like you.
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I had to make this decision for my father during his final week. It was not difficult for me, because I knew his body was too sick to go on and that he was ready to cross over. The nurse explained to me what could happen if CPR was done on an older frail body. I knew my father would not have wanted that. Fortunately, he had signed a DNR and I just had to affirm that it is what was wanted. If he had been brought back, it wouldn't have been for long. He was too sick. There would just be more suffering.
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A large percentage of people choose to be a DNR. They make that choice when they're of sound mind. An elderly person being resuscitated is not a pretty picture and can be quite violent. Often ribs are broken, the chest is injured. The person can come back only to be put on a ventilator and the family has to decide at some point to turn off the vent.

In letting the disease process take over there are medications available to make the person more comfortable. The person may or may not be conscious. Hospice can be called in to make things easier on the family.

You are not a murderer. You are not killing your father. You have a choice to make. And once you make that choice there will come a time when you second guess your choice but stick to what you decide. Make a thoughtful, well-informed decision when you're not emotional and go with that decision. Your dad is going to pass away at some point whichever way you choose so you can't choose wrong.
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Hi Tiny - ((((((hugs))))) such a difficult position to be put in. I understand about not being able to discuss things with family and about how it feels - and is - such a huge responsibility.

While your dad was of sound mind earlier in his life did he ever give any sense of how he viewed these matters - for himself or for others?

I have just agreed to comfort care for my mother -which means no antibiotics if she gets an infection, reducing her meds to the basics and no interventions except that which would keep her comfortable. So I am in a similar situation though she has always indicated that she did not want extraordinary measures at the end of her life and she did sign a DNR.

It does seem like too big a decision to shoulder, yet the doctor who I discussed this with yesterday made the recommendation and I agreed to it. I rest in that the doctor is a specialist in this area and has much experience. As we approach the end of life there can come a time when there are no good answers in terms of quality of life - just better or worse ones. I don't want to see my mother linger as she is and I don't think she would want that either. To me it sounds like your dad does not have many options as treatment for cancer - if that is what the mass - is very hard in a person and the success rate is not high for lung cancer.

You are a very concerned and responsible daughter, going through some of the toughest stuff life hands us. As others have said - you know your dad best. Is there some one related to his care you can talk this over with? Keep coming back here with your feelings and any questions. Even though I know I made the right decision for mother, it still does not feel comfortable. We made the decision to take our youngest son off ventilation. That was the hardest decision I have ever made. We put him in God's hands and that was the only way we could have any peace about it and accept the outcome. More ((((((hugs)))))).
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Even though I had to face something similar when my mom passed last month, my mom did have an advanced directive, living will, DPOA, health care proxy etc. set out. Still, even know that she had already made the decision myself...the act of carrying out this directive and signing on the line to remove the breathing tube was literally the most difficult thing I ever did. Even though I know, logically, that it's what she wanted, and even though I have the legal paperwork, it did not make the decision any easier, and I still feel horrible guilt every single day. I question the decision, wondering if she could have recovered (even though I know she never would have) etc. etc. What you are facing would not be any easier even if you had all the paperwork. And I can tell you (since I'm not you) to have peace with whatever decision you make...I still don't have it myself and the paperwork didn't make it easier. I have had to put down my beloved pets, and obviously they had no directives, but I was able to know in my heart that I was ending their suffering and helping them make a peaceful transition...but with my mom I can't feel the same. I know i SHOULD, but I can't.

My best advice is to talk to his doctors, and when the decision comes, ask them their opinion, to solidify your choice. This will help some, and this did help me some in the moment of the decision.

Angel
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Good discussion. A couple of points:

When we are looking at this decision for an elder ask what you would want done if our situations were reversed. No one wants to play god but we drag life out far, far too long in most cases.

Nothing has had the impact on extending life like modern medicene. It's just nuts. Nursing homes are full of miserable old people who should have passed on long ago. Why do we do this. You can find 25 kids in any neighborhood with no insurance or medical care but we're keeping granny alive for another 6 months via heroic measures and at great expense. Oh yea, I know, death panels........Sign me up.
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Perhaps forcing treatment on him is playing God. Maybe this is Gods way of allowing his life to come to an end. Letting nature take its course is much more compassionate in my book.
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Tacy and Sorry, very well said.........
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Tacy022 is right. You are not playing god or murdering your father if you choose DNR. I faced this when my father died. I looked at the face of the man who raised me and with deep grief said no more suffering. At some point, medical intervention is just that... prolonging the agony with inflicted agony. Let nature take its course. You might second guess yourself. I did. But over the years as i have seen more, i know i did the right thing and what i would wish for myself.
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You would be making a decision for your father's welfare, what he would want, and just as importantly, what's the best decision for him under the circumstances. It may be the most important decision you'll make for him.

The next time you and he see the treating physician, ask what the anticipated progression is, what are the circumstances and symptoms that indicate death is close, or what are the same elements that indicate death is not that close but that the quality of life will not be tolerable.

Discuss these situations with your father and agree on some definable measures at which he would not want his life prolonged.

If you really don't want this responsibility, as you state, then ask your father who else could handle it for him. Given the family situation your mention, perhaps it would be better to ask one of your father's close friends, or even a minister.

But don't resent the responsibility and don't take it if you don't want it. Ask his pulmonary or other doctor if there are medical professionals who can make these decisions for you when the time comes. There could be a conflict of interest from a treating physician, so this could be an iffy proposition.

The alternate way is to recognize that you do resent your father's having smoked during his life, that it wasn't a wise decision, but that you have limited time with him now so focus on those aspects of your father's personality that you do still love.

Let go of the anger and feel sadness that he made poor decisions in his life, and focus on the fact that the difficult decision you make could relieve him of further suffering. That's the really important factor in this issue.
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Yes, good discussion. As I've stated in the past my mother has a very long, very detailed, very strict Advanced Directive - it barely allows for her to be picked up off the floor and made more comfortable in a bed. It's so strict that several months ago her doctors approached me for authorization to give her an antibiotic for a UTI - the hospital has her AD on file. I did say yes to the antibiotic as when it comes to a UTI I do view it as a comfort measure. I disagree with one part of moms AD - a feeding tube. I don't see a feeding tube as an extream measure if that is the primary issue as I don't think anyone should be starved to death. However, my mom feels differently and when I signed off on her AD I knew I was signing off to follow her wishes and beliefs, not my own. Just recently it became time to get hospice involved in my mothers care. The hospice doc and I went over every rx my mom was taking one by one and we agreed to stop everything but what I call "mood enhancers" - Ativan and antidepressants and also pain meds. While I did this with a heavy heart I did this without guilt or doubt. These are my mothers wishes and letting her life end naturally but without pain and anxiety is the most compassionate thing I will ever do for her.
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Thanks so much everyone. I have often cursed modern medicine for the prolonging quantity of life over quality. I know I don't have to decide today, and I did speak with the owner of his adult day care center who gave me sound advice.

The family is going to judge my decisions no matter what, and considering that I've been with him throughout this ordeal and I have full POA, I will make the right decision.

And... the doctors aren't sure if the mass is cancerous, but the biopsy process alone on such diseased lungs would be very invasive for Daddy. The doctor basically suggested giving Daddy an oxygen tank to help him breathe (yet another gut wrenching matter) and simply CT scan him every three months until the end.

I think the doctor was asking for the directive because he anticipates it getting pretty ugly from here.

There's a part of me that the Daddy could just peacefully sleep away vs. being attached to oxygen tanks and coughing and wheezing.

Next question: Do I even tell the judgemental A-holes in my family what's going on?
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Tinyblu's father is not able to do his advance directives now, judging from what was written. Tinyblu, did he set up a healthcare POA (medical proxy?).

I have a feeling that when it comes time, then you will know what to do. It will be difficult, but you will know. I hope that your father does not suffer greatly with the cancer. Don't blame him. Many people got hooked at a time smoking was considered cool and weren't able to get unhooked fast enough to prevent illness. I wish we could go back and talk to Native Americans and Sir Walter Raleigh about the harm they were doing. I hope one day there will be no tobacco.
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Tinyblu, regarding telling family - I can only say what I would do, and yes - my family has its fair share of a-holes. I would probably only tell them if I thought some good would come of it. It's a safe bet if you tell one soon everyone will know so when accessing any good outcomes you'll have to weigh it with the possibility of a bad outcome as well. Are there fences that could be mended before your father passes, positive things that may need to be said? Would your father welcome additional involvement and attention from the family? When I had my mother placed on hospice I told one brother but not the other. I figured the one I didn't tell really wouldn't care - he basically has no relationship with my mom and isn't looking to fix that. Plus I figure he will find out sooner or later and won't care that I didn't involve him. The brother I told would have had kittens if I made this move without talking to him so I told him to save myself some drama in the end. If your dads able, let him make the decision as to who he wants to know what. If dads not and its up to you - take some time to think it through, weighing the pros and cons. Tough spot your in - maybe find someone who knows you, knows your family and bounce some thoughts off them for an outside opinion.
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((((((tiny))))) judgement from family rings true in my ears. My experience is that I am d*mned if I do and d*mned of I don't, so I make the best decision I can and stay away from them. My sis is my biggest critic, despite doing nothing to help mother. I have decided not to tell her and her family the details of what continuing care means i.e. not to tell her that means no antibiotics if mother gets an infection. When asked I gave a very general description of comfort care and suggested they look it up on the internet. I am sure on principle sis would, from afar, and not having seen mother for over a year, disagree with my decision whatever it was and try to make life unpleasant and difficult for me, so I am sharing little and in as general terms as possible. I have stated that it is the doctor's recommendation - which is true - but did not state that they asked me and I agreed with the recommendation. I left out details other than those which seemed harmless - like them stopping mother's herbal supplements as they are not doing her any good any more. Less is better when it comes to sharing with those who are judgemental. Look after yourself. I know it is a shock to get to the point where there is nothing that can be done to improve the situation, just try to ease the person's daily life and eventual passing.

@rainmom -re feeding tubes - the evidence is that feeding tubes at end of life bring more problems than they solve unless it is for a specific issue for a short period of time. As the body shuts down the individual cannot process food - it really is not starvation, but part of the process of dying.
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Life was simpler before all this legal paperwork became mandatory, the doctors came to the closest family with a treatment plan or a recommendation to stop treatment and we either gave or withheld consent, no need to worry about every possible scenario in advance. We trusted the doc's to do what was right and relied on their knowledge to guide us in our choices. When they wanted to take my father off life support it never occurred to us to question whether more could be done, they wouldn't have asked if there were other options.
From everything I've read modern medicine almost always errs on the side of more intervention and prolonging life, even overriding advance directives if there is any doubt at all. A DNR is not a death sentence, it merely give docs the chance to stop trying beyond what is reasonable.
As for whether or not to talk it over with the family, why do it if you know it will cause debate or discord? You only have to tell them that his disease is incurable and they will try to keep him comfortable, you don't have to outline every decision and treatment plan. Sometimes ignorance is bliss.
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Although I can't claim any specific knowledge or research on this issue, I'm guessing that the proliferation of medical malpractice lawsuits, including those alleging wrongful death, had something to do with medical people covering and protecting themselves.

And let's be honest - look at some of the posts here inquiring whether a medmal claim exists because of events that might have been a normal part of dying but the family just wasn't ready or expected more from the medical community that was reasonable.

And now we have prolonged life, often well past the point of tolerance.
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Can I just chime in with my two penn'orth please? I had to make this decision in a slightly different context for my father 18 years ago. Things are different now but I was asked to sign consent to the use of a morphine pump after it was explained to me that the morphine would kill him once he was taking enough of it.

I signed it and for 18 long long years there is not a day goes by when I don't berate myself for killing him. I know the alternative was worse..... watching him die in agony as his lungs filled up and were drained with a drip in which rehydrated him enough for the lungs to fill and be drained - you get the picture I am sure. It hasn't altered the utter self disgust I feel for signing a piece of paper that was effectively his death warrant.

Today this choice is removed and you don't have to have a next of kin sign this but in its place has emerged the DNR and who is going to take responsibility for this decision one wonders. If you don't feel comfortable about taking on this decision then don't would be my advice. Some people can handle it some can't and if you're one of the can't s then living with the decision you make could be heart wrenching.

What I will say is that if someone is old and frail and they do conduct CPR then death is a still a possible result...broken ribs, punctured lung, all possible once bones become brittle. I will never make that decision for another person NEVER. I have however an advanced directive for me and have overridden my children's ability to contest it. I don't want to live now, let alone when I am older and frailer for heavens sake.
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First of all a DNR can be revoked, I have POA and advance directives in place. My husband makes first decision and if unavailable elder daughter.

I was about to undergo surgery for a burst appendix and the anesthesiologist invited me to sign a DNR immediately prior to putting me out. Knowing my survival rate was 20% I declined. he then asked how much I wanted him to do. I told him he could shock me a couple of times and if that failed my husband would make the final decision but I did not want to be revived to a vegetive state.

Having a DNR is not murdering someone or signing a death warrant it is just giving others permission to treat or not treat under certain circumstances.
Please everyone educate yourselves about end of life decisions and find out what your loved one would want.

Jude the use of a morphine pump or any other route of administration does not ensure that death will ensue. of course death may follow as the loved one is probably actively dying. It does relieve the pain and being pain free frequently allows the person to slip away at peace rather than staying alive to fight the pain.

I personally would have no problem administering a prescribed dose of a narcotic even though I knew it could accelerate the dying process. Do you want to watch your loved one screaming in agony, writhing round the bed and yelling for help, often pleading to be given more. I think not.

So put away the guilt all of you who made these decisions, loose the "what ifs" and grieve your loss. You owe it to your loved one to grieve completely so you can go forward with your life
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Veronica you make really good points and I am sorry if I misled people I know I didn't sign his death warrant but I can't stop what it feels like. In my father's case he was in the downward spiral of terminal cancer and would have died with or without the morphine eventually. I hastened his death by signing the ok for the morphine pump and that is my guilt to deal with, even though I know the alternatives would have meant a prolonged and painful death it doesn't alter the way I feel

Nowadays doctors make this decision (and IMHO always should have because they UNDERSTAND and are without the same emotional ties that familial members have, but litigation being what it is made that difficult back in the day)

A DNR is exactly what it says on the tin. It is used when resuscitation is required i.e. you have stopped breathing and it usually covers all events of stopped breathing unlike an advanced directive where you can be selective.

I would love to put away the guilt but after 18 years I suspect it isn't gonna go any time soon
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By the way Tiny you do NOT have to make this decision. You have the right to say I revoke my father POA for health (if you are one) and if not just say I am not making this decision. No-one can force this decision on you and you clearly don't want to make it so my advice is follow your heart and don't be pushed. Call the family, tell them that you will not make this decision....you don't have to have a reason. That you do not want to is enough.
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My Father was in hospital, for aspiration pneumonia, for the third time, and near the end stage of a very debilitating disease, and the decision to start and continue with treatment was presented to the family, my Mom, and my 5 siblings. Everyone agreed to comfort measures only, which he was already on, but me. I simply was not ready to let go him go, without trying antibiotics one more time, despite his body already shutting down, and him having no bowel tone, no BM's for nearly 2 weeks. But because of me, antibiotics were started, and it was the Dr's though that it wouldn't hurt him or prolong his life, if indeed his body had shut down beyond return. Even though he did die a few days later, its still (12 years) running through my head if I caused him more harm than good, even though in my heart I know that it didn't. But mainly what I want to say, is that it is So important to have these forms and decisions decided I Advance whenever possible. That wasn't the case in our situation, as our Mom refused to sign them, she was unable to make those decisions either, based on her religious convictions, and her Love for him. Later, in the decisions for her own DNR, and advanced directive forms, well we had those conversations and the forms were completed. It's all such a personal and difficult decision, but the more knowledge you have, and decisions made, the better you will feel.
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These are always hard decisions to make and even when you make what you think is the right decision at the time its only natural to second guess yourself and wonder if it was.

My Mom did have advance directives but when she suddenly became gravely ill and was in the hospital it still turned into a chaotic mess where I was pretty much on my own without my siblings and had to make that final decision. I always wonder about the what ifs but I know my Mom was unhappy and ready to be with her other loved ones in heaven and thats what I have to think about during those sad moments when I am missing her.
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Golden - I realize a feeding tube can complicate the process of passing. I went through the full hospice process with my dad three years ago. I am referring to in terms of an AD - something serious has happen, what can be done when the outcome isn't identified. - mom is found unconscious and isn't coming around - possible diabetic coma - no feeding while you're waiting it out?
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I'm so sorry you've been doing all this alone for so long; I know exactly how much of an emotional and physical burden that is as I did it for over 10 years. This is the only question you need to ask yourself. What is his quality of life? Can he function, does he communicate, does he enjoy life or have his physical and mental problems made him, more or less, simply a deteriorating body lying in a bed, unaware with nothing to give him pleasure. If any quality of life is gone, you have your answer. You can also ask yourself, if you were in his shoes, what would you want done. Would you want to linger or would you want to pass on? Hope this helps!
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Tinyblu your concerns are valid and the struggle with this decision is important for you. I have been where you are in this decision making process. I am an only child and had a father with much the same situation.

The first answer I found was in a review of our life as I knew it. There are other beliefs or conversations that will give you a clue to what your father would want. This most important decision needs to be one which you are comfortable he would make. An example would be the conversations you were allowed to hear when a grandparent was in a final illness. Since you might not have been available for those conversations, allow yourself to look back over your life and objectively realize information from other conversations. While you were living at home or upon a visit were there conversations surrounding medical care and how he would approach them at that time.

This decision is not one which can be made in a couple of hours rather it will take some time to find an answer you are comfortable with. You mentioned in your inquire a small piece about 'when this mass rears it's ugly head'. This gives way to is there time for you to have a conversation with him? If so this would be an excellent time for that conversation. This may not be conversation you are comfortable with. A person who can guide you through a conversation and help with the other feelings you are having right now is a Hospice Counselor.

The Hospice Counselor is specially trained for this kind of decision making. You will have some insight when the conversation is over that will help with this journey. All of your feeling are valid and require you to work through each one.

This difficult answer possibly the most important for decision you will make is one you will question up to the end. Allow yourself to be human and work through all of the answers you have. It is OK to be angry, hurt, sad and fearful at the same time. Please know that many people are your friends and co-decision makers. All have found a way to understand and more on passed this decision.
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There, with out exception comes a time in a persons/ or animals life that sense of mental reason and a desire to continue physical agony, mental helplines becomes a blessing. Often they arrive at this point with Alzheimer's before they convey their ability to reason/convey their wishes to their love one care giver. When God calls them to His eternal home let them go to rest . Don't let them continue suffering and humiliation
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I can only say, I haven't actually done this yet, but I will make my wishes about end of life known to my daughter. There is me, my husband, and our daughter. All relatives and friends have moved 'down south', retired, don't keep in contact, have their OWN burdens to bear. There isn't going to be a big weeping Waltons-size family holding a riotous wake. I don't want anyone in the position of fretting over ME, one foot in the grave, the other on a banana peel, 'should we keep her alive?' - what FOR? Let me go when my time comes, let nature take its course, I'm ready. I want only to go out pain-free, or as close as it comes (god forbid doctors won't be allowed to hand out painkillers to the dying, since so many drooling junkies are abusing them to get sheet-faced - the CDC recommends a big ibuprofen and positive thinkin', now, no kidding!).
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Based on what you know of your father, choose the DNR option which you think he would have chosen. Then tell yourself that you did right by your father, picking the option he would have picked, and LET IT GO. If anyone challenges you later, inform them that you picked the option he would have picked. If they persist, ask why they weren't there by your side when you and your father needed them. Peace and blessings to you.
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This thread reminded me of my MIL in her last month--couldn't sleep, all the meds in the world didn't work and all night "Lord, have mercy, I want to die." She asked to be moved from our house to her son's in a metro area with high smog because she felt it would help her go. Three weeks on hospice, and she went peacefully early one morning. Ironically, I was the one with her at the time.
My husband pulled out a feeding tube a week before he passed; he had watched his brother go in spite of a breathing tube and he told me no way for that. About six months earlier, when it was becoming obvious that his lymphoma was no longer responding to treatment, "God gives a lot of choices, but this is not one of them." My pastor tells of one of our people who was begging to go; he told he it was OK, and she slipped away. Her daughter has never forgiven him. I often think at funerals that this is true reality; the question is not if, but when and how.
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