I suspect you will run smack into the privacy wall that is now erected around patients. When my husband had heart surgery and was in the CICU I wanted to take his picture so he would know what had happened, but because I did not obtain his notarized written permission I was not allowed to. As sad as it is, I think you are out of luck.
He set up permission for me to speak to his MD Anderson Business Consultant. Wonder if I could route the questions through her. Might be work a try.
Something else I wanted to include (but was to late to edit) in my original post. . . .
We've not even received formal TNM info. The head surgeon did inform us he was stage IV but I was only able to pick up informal TN info as radiologists talked amonst themselves during consult (informal in that they bantered around like shop talk the patient & family would not be expected to understand, therefore pick up on). M value was never discussed in any of the consults.
Thanks,
R-
Well someone needs to start asking a lot of questions. Keep us posted and as always GOOD LUCK.
He (and everybody) needs an Advance Healthcare Directive, part of which names an Agent for Healthcare who is empowered to receive all medical information.
Riley, you are absolutely correct and we have had those for years, and I never even thought of it. That is what happens when you think you are operating on all cylinders, but worry is actually making you (me) stupid. Thanks for the reminder.
Hi R,
I think you will still run into the HIPPA privacy regulations. The only way around that is to have him sign an advance directive as suggested that names you as his medical representative OR have him write a note that gives you permission to discuss his medical condition with the health professionals.
Pretty much you have to ask for information on staging and prognosis but they sould be discussing test results on the next visit. It's possible that the doctors are picking up on your finance's reluctance to bring these subjects up. Everyone watches the patient to try to get a "feel" for what they want to know. If he's waiting for them to bring it up, and they're waiting for him it's a situation ripe for miscommunication.
Perhaps you could talk to him and agree on who who will be the person asking questions during or after appointments. I used to write the questions out in advance and go over them with Jack. Both of us had copies of the questions so that if one of us forgot it or just got overwhelmed that appointment, the other could stil get the information we wanted to know.
We found we needed to work as a team but in the beginning I wanted a lot more information than Jack did. He was in such shock that he didn't want to hear any more than the immediate next step. He didn't want to discuss radiation until he was through the surgeries etc. That phase passed but it was pretty tense until we started being honest with each other on what we both needed to get through this.
I guess my best advice is that you need to talk to each other so that you're in agreement before you talk to the doctors. He is being treated in an excellent facility for what's it worth. They are leaders in treating head and neck cancers.
Good luck, JoAnne
R, read JoAnne's post to your fiance-she is absolutely right on! Dealing with the HIPPA laws can be nightmare when you are married and the caregiver-so your situation will be even more stressful. Last week after chemo, we stopped by the hospital to pick up a copy of John's last PET scan and I had to take a permission slip out to the car for him to sign, produce my driver's liscense for them to copy[even tho I had picked one up 45 days ago and gone through the same routine AND I am listed on everything as his medical representative.] Explain to him that once the treatment gets going, neither of you needs the hassle of plowing through the regulations. Also, talk about who can deal with the Insurance Co. in his behalf if he is too sick to handle "issues". He needs to understand that he may not want these pressures over the next few months, and now is the time to address them. Amy
Also, go to all the consults and examinations -- this gets you into the loop -- I never had any probems with HIPPA at any of the places we went (including local hospital) but my husband did have an advanced directive /durable power of attorney document. The State of Maryland has one on their web page which is accepted at all medical institutions in the state. The laws in other states probably differ.
You may well have to take the lead on asking questions and helping your fiance make decisions on treatment -- he is going to have enough on his hands dealing with the treatment and its side effects. MDAnderson has social support people to help you deal with hospital bureaucracy as well...
The more you know the better you will be able to help and support your fiance through treatment.
Gail
I would, as Joanne did, write any/all questions I could think of even while riding in the car to the appt. My wife also attended every appt I had with all docs. As each question was covered I would check it off. Having written down in advance is the only way to go. My wife was the one that usually talked on the phone to the nurses or docs and we never ran into a problem. I was treated at Moffitt Cancer Inst.
His mom says I'm already on the HIPPA list he signed during his first set of consults. Sounds like that that will give me what I need. I need to call the business office & check. I know he's given them authorization to talk to me.
BTW. . . we went to the plastics consult yesterday. I've been surfing constantly since he was first diagnosed but he hasn't done any research. Plastics consult was the first time he's been given an idea of the actual proceedure/ inscisions/ etc. . . Also, because he's lost so much weight, they told told him they want to insert the PEG THIS WEEK, rather than waiting till the surgery. The proceedure is scheduled. Man. . .what a surprise.
Will be posting more (questions basically) about PEG on "Medications, Treatment, Procedures" board.
Thanks all,
Rebecca
I'm sorry you're experiencing a communicatin problem. We had that at the first hospital my brother went to, but once we got to MD Anderson, it was much better. Have you learned to use their message board where you can see his list of appointments and everything? That helps alot. As for what is going on, call, call, call. If you have to, go to the offices, let the receptionist know what you need and sit there until they send someone out to talk to you. They are SO busy there. I've never seen SO many patients before, but they will get to you. Unfortanetly is usually means a long wait. I didn't mind waiting, but I hated it when my brother was there with me and he had to wait, feeling a bad as he did. As David's sister I had no trouble getting his info. Maybe he had me on his list, but everyone was very helpful. As for the peg. It is important he get it now, then he will be ready when time comes. He doesn't have to use it now, I'm sure, but as his tougue and mouth become sorer, he may choose to take liquid supplements through the peg or even just as additional calories. He needs to stock pile the calories now, as he will have to rely on the peg, at least initially, and perhaps for quite a while, after the surgery.
BEST OF LUCK!!!
Tonya