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.
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.
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.
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)))))).
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
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.
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.
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?
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.
@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.
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.
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.
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.
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
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
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.
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.
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.