Rotten doctor or needy dad?
This has been a long, frustrating saga—here goes...my dad has seen a urologist for years, mainly for overactive bladder. Without fail, each time the urologist has done any type of invasive test dad was ended up with either a UTI or a few days of catheter or both. He’s on 2 Rx from this doc, both with negligible benefits. I’ve taken dad to his PCP, who he adores and highly respects, and heard him say dad has no good options left for his bladder issues. PCP says there are no meds or surgeries to help, especially given his age, and he nicely suggested adult diapers as best option. Dad has these, wears them if he’s going somewhere for a few hours where he might not be able to get to a bathroom, but is resisting wearing them all the time. Accidents are very frequent. He has a bedside urinal for overnight, which can be literally hit or miss when he’s sleepy. So back in the fall urologist says he sees a red spot on dad’s bladder and wants a biopsy. He says he in no way thinks it’s cancer , there are no symptoms of that at all, but wants to rule it out. Dad was recovering from a skin cancer surgery so this was put off, me hoping it’d be forgotten. Instead dad became obsessed with it. He just had to do it, though I and all other family begged him not to. Everyone knows too well the consequences of him having any procedure, the crappy recoveries, the real possibility of not regaining the ability to pee, the infections he invariably gets. This seemed crazy for something no one thought was cancer. Add to that dad’s often stated wishes that he’s “ready to go” why would he go through cancer treatment he says he wouldn’t want? But he was adamant to do the biopsy. Afterwards, he couldn’t pee, catheter put in, pee has both blood and blood clots, completely freaking out dad. Catheter removed next day, waited 12 hours drinking lots as told to do, no ability to pee, swollen belly, back to ER, catheter put in. Next day at urologists office catheter removed, another day of not being able to pee, swelling and hurting, catheter put back in for 4 days. Removed again, another round of antibiotics, 2 weeks of bloody pee, unhinged dad at seeing blood (thank God he wasn’t born a female who’d have periods!) Another procedure scheduled to go back in and find source of bleeding, me again begging him not to do it fearing he’d be needing to be catherized the rest of his life if the ability to pee didn’t come back. Finally, yesterday the blood stops and he agrees to cancel the procedure. I need to add that since becoming elderly my dad is very addicted to attention, especially medical attention. He loves getting on the phone and regaling everyone he can find with all medical woes. He gets very “into it” I fully know some of this is loneliness. I know most people use most medical care in the last years of their lives, but aren’t there times that doctors cross a line of doing things that aren’t necessary though they can make a case for it? I think this whole fiasco has been a combination of a doctor overstepping, not really looking at or knowing the patient, and an elderly man feeling scared and needing attention. I guess it could be added some idea on dad’s part that what a doctor says, goes. I’m now trying to get dad to agree to not see any urologist anymore, if he wants the meds to get them from PCP. So far he says he’s not sure he can do that. There’s a long list of gists docs and I’d love to have one fewer, especially one who seems to have nothing to offer. I feel like urologist was almost cruel to my dad in this. And no, there is no cancer...
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As for seniors being cash cows, Medicare reimbursement rates are so low, many doctors are dropping Medicare/Medicaid patients or not accepting them in the first place.
That’s a huge issue right now.
To the OP, you did the best that you could but your father insisted on that biopsy & it’s hard to overrule his decision, although that episode turned into a nightmare that went on for weeks. Maybe find another urologist or speak realistically to his current urologist as to what minimally invasive treatments would benefit dad if any, as this recent episode was by no means beneficial for dad. If this urologist & your father have a long history, the doctor may feel that the patient & his family stand by your father’s decision for invasive procedures as he had pursued these urological treatments in the past. On his next follow up with urology, speak to the doctor regarding prognosis if dad has bladder cancer & discuss treatment of this cancer going forward.
I wish you and your father good luck!
If you could get your Father interested in something other than his body and getting the attention this way all this might stop.
Having said that, I think some Doctors can be blamed too. I remember going for a routine eye exam once. My eye pressures were a bit high and the Ophthalmologist asked me if there was a history of Glaucoma in my family background. I became obsessed with this for about six months. I left messages for this Doctor which were never returned. So I went to another Ophthalmologist who did the same tests, explained everything clearly to me and everything turned out fine. Turns out I have thick corneas and sometimes pressures will read higher than they really are.
Doctors are sometimes in such a hurry to get patients out the door that they don't explain things properly. Where I live you are only allowed to bring up one issue per visit so I end up deciding which is important and which can wait. Something I shouldn't have to decide in my opinion.
Just heard that a friend, who had breast cancer and was just pronounced cancer free, has been advised to, and is going to have a double mastectomy, radiation, and some other treatment I don't remember.... she's only about 43; is this crazy or what?
My Mom had bladder cancer much to my surprised, learned that when I took her to urgent care for whatever reason and the doctor had that information. Say what? Every 6 months Mom saw her urologist, and he told me in private that the bladder cancer was slow moving and chances were high that it wouldn't be the cause of her death. Same with Mom's oncologist, in fact at 97 he told her she didn't need to see him again. Mom passed from complications from a fall.
And I was also going to suggest changing urologists, although if you are satisfied with the PCP perhaps just dropping the current urologist is enough.
I think if it were my father, I would try to find another urologist, as I would be getting tired of seeing my father in the discomfort and sometimes complications that attend all the catheterizations. If something were to develop later, you might chastise yourself for not going forward with further testing.
This is a real tough one. Just out of curiosity, is the urologist a young one or a more experienced, mellowed one?
97yr, have been wanting to read Being Mortal, and will add it to my list, thanks for the reminder
Sunny and Midkid, yes, he’s definitely a medical junkie, that’s a good way to put it, loves doctors and checkups, and telling all about them to his old people network. It is likely due to little else going on with him. He’s not able to go out much and spends a lot of time on the phone.
I just wish docs would make more effort to learn their patients and listen to family. This has been so stressful to him, he will be 88 soon and doesn’t recover well from anything, sigh...
Her surgeon kindly and firmly said he had already done both knees, her foot, her back---and he was firing her a patient. At 88, he said, she was bad candidate for a "pre-emptive" and not necessary procedure. She was plenty mad, but in the end, she had no choice. None of us would take her to another dr and so she is done. (She still, somehow has her gallbladder and we do NOT speak of it, b/c if she realized she still had it, she'd want it out.)
Elderly people often have so little going on in their lives, they love the whole drama about going to the dr over everything. COuld your dad be doing that? In spite of the dreadful outcomes??
At 81, even IF he had bladder cancer, it would take a long time to take his life. In the meantime, QOL must prevail.
Drs. simply tell their patients about all the options. Medical junkies love this. There's always a new plan or trial or surgery.
If you like and trust his pcp--stick with him/her!
I have noticed that many seniors discuss health issues a lot. My dad doesn't, but, mom does. Her friends do too. I wonder if it's cultural. And, there's less to talk about if you are at home all day, not working, not getting out much, etc.
Pick up a copy of the book “Being Mortal: Medicine and What Matters In The End” by Atul Gawande. It might give you a different way to approach dad when he wants to pursue other medical procedures with questionable outcomes. It also helps you understand how ill equipped some doctors are in dealing with elders who are out of options.
I also suggest you consider finding dad one more specialist. A geriatric primary to manage his health care and help him live healthy as long as possible.
As for your dad saying he is "ready to go", I get a sense that he is just whistling in the dark and that statement is far from true, kind of a frustrated rant against the indignities of aging and declining health - an "if I can't get what I want I'd rather have nothing" kind of declaration.