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My 89 yr old father has refused to allow his doctors to provide me with any information about his medical problems. I do not have POA or healthcare proxy and am the only child. He also refused permission for the doctors to inform his wife (my mother) of his healthcare issues.
This started last year when he was hospitalized with pneumonia in Jan 2016 and was instructed to have a chest CT scan every 6 months, which he has refused to do since then. He stopped taking all of his medications a year ago. He has lost 50 lbs in 9 months and now looks emaciated even though he eats regularly. He also smells rotten for some reason (he showers and keeps clean but smells like rotting). A month ago, his entire body swelled up and he was in pain and given colcichine and some aspirin. He has a history of gout so I thought this was a full body attack of gout. He used to smoke for 35 years and has a smoker's cough ever since I can remember. He's never been a nice man, always irritable with a violent temper. It's gotten progressively worse and he's become increasingly bitter. I can't help but wonder if the doctor told him he had some terminal disease that he's hiding from us?


I've called the doctor and also tried to speak with him while at the hospital but have been told numerous times that my father has specifically refused permission to allow him to give me healthcare details, due to HIPAA.


I'm at a loss here, any ideas please? Thanks much.

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Your 89 year old father has the right to privacy about his health.

(I wouldn't be private at all. I'd be posting about my health journey on FaceBook! But I am not your father. We are each entitled to our own decisions about such matters.)

What would you do if you knew about his diagnosis? Would you try to influence his actions? ("You have to take these pills, Dad") Would you research it and share all kinds of information downloaded from the Web with him? Perhaps that is exactly what he is trying to prevent. He wants to do things his way. Unless he has been declared incompetent by a court, he has that right. Americans (and I'm sure many other cultures) take individual freedom very, very seriously, and it is accordingly very hard to deprive someone of that. Dad gets to decide who he tells what.

I suggest you treat him as an 89 yo man with very serious health problems. Be extra patient with him (short of accepting abuse), and do with him things on your do-with-Dad bucket list. Ask him about his youth. Go over old photo albums with him. Take him out for ice cream at a fancy place. At 89 with health problems you can be pretty sure he is not going to be around much longer, whether you know his specific diagnosis or not. Take advantage of the time you have left.

You don't need to talk to his doctors to behave as a loving daughter.
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I really do sympathise. My aunt, a doctor herself, intentionally concealed her leukaemia until just over a week before her death - when she didn't really have any option because she started bleeding out from her lungs and alarmed her daughter in law who was in her apartment at the time, making Christmas lunch. You can respect a person's right to privacy and autonomy and still be bloody angry with their attitude, and I was and am. It was a rejection of her family's legitimate concern, it was incredibly hard on my mother, and I also found it insulting that my aunt seemed to think I'd be foisting intrusive support on her if she didn't want it. So yes, her right; also a total F-off to the rest of us.

Having said that, if your mother's dementia makes her unable to comprehend the situation then there is some humanity in your father's wishing not to involve her; and his refusal to engage in treatment options also makes more sense, though in a fairly chilling way.

What you are free to do at any time is report *to* his doctors even if you are barred from getting information *from* them. For example - he's been your mother's primary caregiver for some time, then, has he? Is it possible that this is an "easy" way out for him?
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My mother has dementia so she's not really aware of what's going on.

I do my due diligence to my parent and wanted to try to get him the best treatment available especially since we live in San Francisco and have UCSF and Stanford close by to offer the latest treatments, both approved and in clinical trial.

I will respect the HIPAA laws and just let him continue his way then
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Marileeg I can sympathise with the frustration but no there is no way round this. Your father has made his wishes very clear, he is entitled to confidentiality, if any one of his health care team were to breach that trust he could sue the ass off them, to put it at its bluntest.

How is your mother coping?
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I "got around HIPAA" in the most unwanted way this weekend. My mother had a heart attack on Thursday. While my father was in the ER with her, he also had a cardiac event. Both parents are ok and hospitalized but this was not the way I imagined finding out about their health problems. I am in the process of making the appropriate care arrangements. Thanks for everyone's answers.
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Oh MArileeg,, good luck and my prayers are with you all.
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Oh how awful, I hope they will be OK.
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