MIL has S4 lymphoma. In the past 15 months, she has failed two lines of chemotherapy and failed radiation. It's in her head now (the lymphoma) and they were going to do a stem-cell (!) treatment on her, meaning a month in the hospital plus loss of all her immunity. Instead, they decided she might qualify for a brand new 2021 drug requiring only one-week of hospital stay. Then two ping pong ball sized tumors were found in her lungs, so now she's waiting for a biopsy on that. She's been in ER twice in the past 10 days. UTI, and now a reported seizure.
Dad meanwhile is in the hospital having had two thirds of his small intestine removed. About 14 feet. He is fed by IV currently. Should he recover, there are more heart operations and then a secondary knee replacement on deck.
I'm mad because I think the doctors are offering false hope at this point but we're all primed to "keep positive."
No, I'm not saying give up. But to me this looks like futile health care.
We have a good friend who's in his early 50's with lymphoma from Round-Up. This poor man was on his death-bed 4x, and told by his doctors to take all the opioids he wanted b/c there was 'no hope' to save his life. Yet they pulled some rabbit out of their hats each time and they DID save his life. Now he's okay, believe it or not, but........and here's the big but: all of his teeth are rotted out of his mouth to the point where you can't get near him for the stench of his breath. And, he has lymphedema in his leg to the point where he can't stand up for more than 20 minutes at a pop. And he's 55 years old. Yes, his life was saved by modern medicine and a bone marrow transplant (which was what ultimately worked with getting the lymphoma into remission), but it took a big toll on him and on the quality of his life at a YOUNG age. What will all these treatments do to your MIL who's 20+ years older than our friend?
At some point, I think elders have to say ENOUGH to all the treatments, especially when heart surgeries, knee replacements and IV feedings are involved down the road and long term. And, when drastic cancer treatments are going to wind up buying them a few more months of misery, that factor has to be weighed into the picture and a decision has to be made. Because the doctors will keep trying and trying and TRYING, especially when insurance is paying the bills.
One thing I'm eternally grateful for is that my father died very quickly; he had a brain tumor we were unaware of until he took a fall and broke his hip. He also got a skin tear on his eyebrow that required an MRI which revealed the tumor. He only lived for 10 months afterward; the tumor grew and it ultimately killed him quickly without him having to withstand ugly treatments or brain surgeries, etc. He was 90 at the time and too old to undergo brain surgery, so there were NO choices for him, thank God. My mother, on the other hand, will be 95 in Jan and is dying a slow and horrible death from advanced dementia & is now refusing to take her pills so her mood is horrendous, on top of horribly confused. She's wheelchair bound and petrified to die, to make matters worse. My father wasn't afraid to die and didn't fight it at all. My mother will go down kicking and screaming every step of the way, making things difficult for me (the only child) and everyone trying to make life better for her. That's the way it goes sometimes, isn't it? To say I'm frustrated is putting it mildly. :(
I'm sorry you're all going through such a difficult time and I pray you can all reach a conclusion that you can live with. Sending you a hug and a prayer for peace.
No, you most assuredly do NOT.
2 of my kids are Drs and I know they have given patients treatment options with the caveat that they may not work, they may make you sicker, they're hella expensive and have poor outcomes, etc., but the patients usually look up with adoring eyes (well, I'm not sure about that) and say "whatever you say, Dr. R". And Dr R comes home and is unhappy b/c he's just doing his JOB. His OPINION may differ completely, but he is required to give options for care and let the patient decide.
Everyone's death is personal to them. Hard to handle, very often, for family. Sad when someone can't die in peace, but it happens.
My FIL fought death with everything he had. He was actively treating skin cancers right up to the day he died of leukemia. My dad gave in to Hospice and the peace it provided about 2 months before passing from Parkinson's. Each made their own choice.
Being frustrated at the futility of a person's choice on how to die is kind of pointless--but I do 'get it'. We actually have so little control of what our lives are, how they end. Just try to be patient with your LO's. (easy to say, hard to do).
I’ve found (at work, in very different situations) that sometimes it helps to invent a similar situation, say what the (imaginary) people are doing and what criticisms they are getting. If I want to suggest something they could do themselves, I then ask my own clients why that (imaginery) approach wouldn’t work for them. When I’ve done it, often the client pulls the ideas to bits to ‘prove’ that they are different, but then finds something that they can relate to anyway. I find it easier and more productive to make the conversation about someone else. You might find this a useful way to get them talking about the options, and the pros and cons of different ways to approach things.
Regarding the doctors, remember that you can talk to them, even if they can’t breach confidentiality by talking to you. Say that you suspect they are over-servicing and ask how to get a second opinion. They won’t be happy, but it may make them a bit less gung-ho. And if they bring in a second opinion, so much the better! My mother’s oncologist was doing just this when more treatment would just postpone the inevitable at a high price in fees, discomfort and pain, so I know full well that you may be right.
Sending you mental strength vibes and hugs to deal with your LOs.
Have you tried just talking to them about what kind of quality of life they want? Never an easy conversation, especially with both parents.
I’m sorry that you’re in this position. My friend’s dad recently passed away after they found a brain tumor. He did the chemo and all of that, but it didn’t really do anything but make him sick as a dog, and the end was terrible.
Hugs, my friend.
They have NOT given POA to anyone. They do not have dementia, so they don't feel they need it.
However, what they don't have is an articulated plan, such as when we reach X point then we want to go into AL, or at that point we hire someone with actual nursing credentials.
I agree that, at least for your MIL, this is futile health care. If it were me, I would NOT go though all this. I would get her evaluated for hospice care. I would want to just live what is left of my life and be kept pain free as long as possible.
The Dad, well how old is he? I would ask more questions. Pros and cons. % of how well the outcomes might be.
Same with Dad. One think at a time.
She more than goes along with these plans. It's more like selective hearing where she just hears "well this may have a chance" as "this could cure my cancer."
It's understandable in a way, the illusion that things will just continue at home with the spouse if you can just both stay alive.
But it's just not that straightforward.
Not with this level of decline.
In 2020, she was jetting off with her friend to spend some time out of state independently, and he was driving himself to go volunteer. Now both need a chair to go see the other one in the hospital, y'know? Operations or some exotic new therapy proposed on a weekly basis?