I don’t think it was fair for your father to put the decision on you like that. You were just a kid, and of course the idea of not having your father with you, no matter his condition, would have been very frightening.
But in general, I do not think people should feel obligated to live just because of someone’s desire to have them around, at whatever cost. If they decide to “fight”, they should do so because they want to live. Not out of guilt.
Living wills and advance directives for medical decisions (information from Mayo Clinic)
download advance directives forms Free printable forms for your state courtesy of AARP
US Living Will Registry If you don’t keep a copy of your Advance Directive with you, I won’t know whether to stick a breathing tube down your throat or not. Register here and carry a wallet card with you, and I can check before I do anything rash.
And please, for the love of your ER nurse, let your family know you have wishes, and what they are. Don’t let her get caught mediating a screaming battle two hours after her shift is officially over.
Me? Whew. I dunno. It’s all about quality of life, but I’m not sure how to define that until I’m in it, other than the things I’ve already enumerated in my AD and talked over with my loved ones (No long term vents or feeding tubes). When I was 17, I’d have thought that simply being obese was a poor enough quality of life that I’d rather kill myself. Honest to Og, not exaggerating; I’d see some poor fat woman and think, “If I ever gain that much weight, I’ll just kill myself. Literally.”. Obviously as I’ve aged and I *have *gained that much weight, I’ve decided that my quality of life isn’t so bad after all. So I don’t know…maybe having a trach really isn’t that bad…
I would, however, keep a personal stash of narcotics hidden so I can end it when I want to. If I get that kind of warning, of course.
I wasn’t in his head, but the ultimate choice was his and he didn’t go back on his word, so I have to believe that watching his children graduate high school/begin college/grow into adults added something to his life. Our relationship was definitely closest in those last few years, as I grew old enough to really communicate with him on an adult level.
Something worth pointing out, and one of the reasons I mention my personal history, is that I didn’t choose for him to be in pain. His disease caused him pain, and I considered my personal well-being and told him that I wouldn’t be okay with my father dying just then. I hardly knew him as an individual, wasn’t financially or emotionally secure, didn’t have a support base, etc. When my siblings and I decided to remove the respirator three years later (arguably a similar situation), there was no such hesitation. Those intervening years made all the difference.
Every situation is different, of course, but for me that conversation was about my father treating me as an adult, and asking my opinion on an important decision that would have changed things dramatically for me. Yes, that’s an awful spot to put any kid in, but disease doesn’t get almost unbearable when your kids are safely off at college, when you’ve gotten your opportunity to pass on family stories and advice and tell them how proud you are of what they’ve achieved.
As for the idea that I was frightened by his death - perhaps. But that’s also one of the lovely parts of childhood - until he died, even years after he died, I had no idea what not having my father in my life would be like. So no, there really was no way for me to make a decision like that based on fear, because no sense of dread can accurately mimic real grief. This may be the rosy glasses of hindsight, but I like to think that I (and other people who have been forced to make these sorts of decisions, because I can’t possibly be alone) asked him to stay around out of love, and hope. He agreed to carry a heavier load in our relationship, and I opened my eyes to his pain and tried as best I could to match the effort he was putting in just by staying alive. In our particular circumstance I think it paid off.
I’m gonna grab GuanoLad’s word, and a word that’s been dropped a lot in this thread - selfish. Of course it’s not selfish to want to die if you’re in pain. That’s completely understandable. But when you bring children into this world, or marry a woman or a man, you make an agreement. That agreement’s not just that they’ll pour you juice in the morning or cook you a nice meal and not complain that you only pick at it, or pick you up off the bathroom floor and tuck you into bed and call the ambulance if they can’t feel a pulse or no matter what never ever blame your irascible mood on you even when it’s hell to be screamed at day in and day out, because that’s the disease and the pain meds and the constipation that they cause, and that they’ll love you even when you’ve lost thirty pounds and live in your oversized bathrobe. No, the agreement is that they’ll do all that and that you’d do the same and more if the roles were reversed.
So if your “loved ones” don’t hold up their end of the deal, forget it. Off yourself, and don’t waste a thought. But if they’re willing to be there for the bad parts, if they’re willing to stick it out and endure the emotional pain of watching their father/brother/husband/wife/mother/sister/whatever die – not quite the physical pain the terminally ill person has to suffer through, but it’s definitely something – than the least you can do, the LEAST you can do is have an honest conversation about that pain, and weigh your physical symptoms at their guess of a future without you, and come to some agreement that you can both live with. Because that’s love, at least in my book.
Well, of course, you’ll try to fight any illness with the best possible medical care, but I do believe that there is a point when palliative care has to be the best option. There is a point when you’re trading quality days for extra days of life. I’d rather have a month of relatively painless, lucid clarity than undergoing more months of useless miserable treatments. But that’s just me. This is a very personal decision and I hope I won’t have to make it!
First off, thanks for sharing your story.
I don’t 100% disagree with you. Of course, one needs to consider how their death will impact other people and not make the decision lightly. I’m not even saying that a person should not ask for “permission”, as your father did (though I still don’t think it’s fair to ask this from a child, even a 16-year-old child).
What I don’t particularly care for is this idea that my unhappiness should given equal weight to the unhappiness of the person who has to endure all the hell and suffering. Unhappiness sucks, for sure, but how does it stack up to horrible physical pain AND unhappiness? I can be there for a person as much as possible, but I won’t be able to share their suffering. And if I’m not going to be with that person through their suffering, only checking in on them at my convenience while I otherwise enjoy the goodness of life, then my unhappiness matters even less.
I think the decision to fight-not fight should be left to the individual, and people who love this person should give this individual the freedom to choose as they want, supporting them either way. No one wants to see their loved one go–that’s a given. Why add to the suffering of the loved one by taking them on an emotional guilt trip? Marriage vows are not supposed to be used as a cudgel.
I voted with the “depends” option since several factors come into play. Both me and the missus have seen family and friends wage protracted, and ultimately losing, battles with some illness. and want no part of it. Our money is better spent on who remains rather than thrown away on the various segments of the health system.
But it is selfish. And it’s the only time in my life that I should be allowed to be selfish. I cannot share my pain with anyone, it’s going to entirely be my own, and I should have the freedom to deal with it my way, without interference from other people who think their rights equal or supersede mine.
We are all going to die, it is 100% inescapable, and no matter how or when it happens it will inconvenience those I leave behind. Unnecessarily prolonging life for their own reasons is not fair on me, the one who is dying, the one who is truly suffering. Let us die with dignity. Please.
*I am not actually dying yet
Works the other way as well. I’m in the middle of this with my brother in law, who is choosing to have everything done…which is his choice and his right. But we can’t start healing until this is over, and his everything means more days the family spends at the hospital, means that someone needs to clean his house and fix his meals for months, means someone needs to stay with him when he is home. He is choosing to live, even if live means he doesn’t recognize those around him, that he is hooked up to a respirator. And, of course, I support him, even if his death is not the death I’d choose in the same circumstances. But part of the reason I wouldn’t choose that death is that it creates a large burden on the people around you.
Choosing to die may be selfless.
Absent any other variables, if fighting decreased the pain or discomfort involved, then I’d do that. Otherwise, no.
However, I have 2 wonderful kids, and every day I am alive I may remember to tell them something useful they need to know, like I love them and always wear sunscreen and never buy the extended warranty, I’d endure chemo for that.
Right. Wanting to die rather than to continue enduring agony is selfish, sure. So is wanting someone to remain alive in that situation because you don’t want to lose them. This is one of those situations where selfishness is not a bad thing, it’s just an accurate description of everybody’s interests and motivations. There are situations where I’d agree a person has an ethical obligation to try to keep living at least to a reasonable extent - parents with young children being the most obvious example - but there do have to be limits to that obligation someplace.
You stole my ideas! Get outta my mind!
Yes, if we are going to be labeling stuff, all of it is selfish. The truth is that whatever decision a person chooses, it’s going to result in pain and hardship for others. If they decide to “fight”, they may be signing up their wife/husband as overwhelmed caretaker, as well as siphoning attention away from any dependents. If they decide to “let be”, their loves ones will have to deal with death and loss. If it’s incumbent on the sick person to weigh these things when deciding on what to do, then they are just going to be banging their head.
What if you decide to live for the sake of a significant other, and the stress of it all ruins the marriage AND none of the interventions worked? I think that would be my nightmare. Suffering for someone else, and then seeing that it was all for naught.