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My husband has stage 4 cancer everywhere. Recently diagnosed, I am not getting any picture of what to expect. My husband doesn’t want to know. I know his spinal tumors can cause paralysis and his brain tumors can affect everything. He’s got liver tumors, bone tumors, and esophageal tumors. The doctors evade my questions and I don’t want to hurt my husband’s feelings. They keep talking to him as if there’s a cure, even though he’s on palliative care. I don’t think he knows what that means! One NP told me I have to give him hope. Then a week later looked at me incredulously when I said he was driving and almost got us killed. No one told him he shouldn’t drive. Radiation and chemo has made talking to him even more difficult. Not to mention the drugs he his taking.


How can I get someone to give me honest answers when he isn’t right there listening?

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Another update:
I sent a message directly to his doctor about where this journey will take us. Their reply was they couldn’t give me a prognosis. Every patient is different and they couldn’t see how long he will last. But I learned last week that they intend to keep doing the chemo cycles until he can’t take it anymore. He didn’t argue with them. He’s got to follow doctors orders. He has started seeing a therapist during treatment (per my request). She is trying to get him to understand how ill he is, but he doesn’t want to hear it. We had a meeting with his doctor also, she actually told him he was a very sick man. So he says he wants physical therapy! When we got home he was angry that she told him that. How does he not know? He is in complete denial.
His treatment is palliative, but he doesn’t want to accept that. When he was diagnosed in October, the doctor said hospice was an option. But he has a definite opinion of hospice and thinks it means an early death. That hospice means giving up. Here we are nearly three months later and he wants physical therapy. His denial is heartbreaking.
I still don’t know how long he will last. I’m hoping the physical therapy people will help him understand. He’s very weak and shaky. Has fallen a couple times, which I believe is some type of brain seizure. They are doing another brain mri in a couple weeks. The stress is unbelievable. I’m going to stay in the background and follow his lead. I’m not going to be the one to take away his hope! It’s the least I can do for him.
I find it interesting in other countries they wouldn’t give him anything but hospice. Cancer is big business in the USA.
I pray that he comes to some sort of peace with this.
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Isthisrealyreal Jan 2023
tmb, I am so sorry for your situation.

It is good you are going to follow his lead. Miracles do happen and there are people that beat cancer.

If you have a faith community, start a prayer chain, get the elders to lay hands on your husband and pray.

Get them to hold you up in prayer, it truly helps.

May The Lord God Almighty grant your husband healing and give you both strength, peace and wisdom for this journey, whatever it holds.
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Ask your Dr to request a hospice evaluation – or apply direct for one. If DH is accepted for hospice, he doesn’t have to accept hospice treatment. But it gives a separate view on what is going on (and will go on in the future) that you will have access to. You should be able to talk to the assessors separately. Make sure that DH knows it isn’t compulsory to go through with hospice, but tell him that you need to go through the motions of an assessment for the medical system’s rules. It could be a big help.
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Tryingmybest, I am so sorry that your husband isn't doing well. It's a rollercoaster ride with or without treatment.

At least the portal is helping you to understand what is really going on.

One thing we did with my sister was to contact and plan surprise visits from long lost friends. It was truly a spirit lifter and blessing for her. Maybe you can plan some visits with people your husband laughed with, it would be good for you too.

I know this is not easy, be sure and find ways to care for you. Your life is and will be hugely impacted, it is important to kinda plan how you are going to move forward. I know that's hard to contemplate but, having a plan in place for support for yourself will help you get through this.

Great big warm hug!
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Before an appointment with my parents I would post on their patient portal any updates the doctor needed to be aware of. This was a good place for questions also.
You need to be prepared for care your husband may need.
Ask if you can make a private appointment just for yourself to review the present condition. Sounds like he should not be driving at all.
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Use the online portal, where you're viewing the chart, to find the email link to explain the situation and ask your questions.

You are not violating HIPAA if you are participating in his healthcare--the guidelines are here:

https://www.hhs.gov/sites/default/files/ocr/privacy/hipaa/understanding/consumers/consumer_ffg.pdf

Good luck.
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Update: husband is currently on round three of chemo. I believe they have lowered the dose because he acquired pneumonia after the first round and ended up in the hospital. I’ve learned to sit quietly next to him and try to read between the lines. I also go on his online record to read the after visit summaries and test results. They are definitely downplaying much to keep his spirits up. Yet they are suggesting several things to try to get him to think about where this is going. The latest challenge is climbing stairs. They’ve suggested “some people” put a bedroom downstairs. He wants no part of that. But eventually it might have to happen. They’ve also convinced him to take a new medication. They’ve told him it’s to help him sleep and for pain, but slyly threw in the conversation that it helped control brain seizures. Wow, that was enlightening! The chemo is debilitating. He sleeps all the time. But I believe they’re giving him a low dose because he has no terrible side effects, just exhaustion. Plus the chemo hasn’t stopped anything and he has new tumors. He does seem more depressed and maybe is starting to realize this isn’t going away. I’ve read just about everything I can about end of life. But I guess it’s different for everyone. My Mom is 99.5 and seems like she’s doing well. It’s hard to believe she will outlive my husband. She is now in memory care and I joke that I’ll move my husband in next to her and he can keep her company.
Anyway, I think maybe the doctors and staff expect me to look at the online records to see the big picture. When we have an in person visit, they paint a rosy picture to lift his spirits. I can’t think of any other reason but if it were me, I’d want the cold hard truth.
Thanks for listening ❤️
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MeDolly Dec 2022
I have been following your posts and am sorry that you are having to go through this.

To me it appears that you follow whatever he says, do this, don't do that, do you ever do what you think is best for you? To make your life better, less stressful?

He not mentally or physically stable, might be time for you stand up and be counted, you have rights too.

Just my 2 cents, my husband had cancer as well, we worked together as a team, there was no dictator.
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Trying, it sounds to me as though the cancer "tratment" is palliative, to keep him out of pain, rather than curative.

Does he understand that?

I believe that chemo to keep a patient comfortable IS allowed on Hospice. However, you won't know unless you call a couple of hospice companies and ask.
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tryingmybest8: Perhaps you can schedule an appointment with your DH's physician for YOURSELF wherein you can ask questions.
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tryingmybest8 Dec 2022
Unfortunately he goes wherever I go or asks me a ton of questions. I can’t even have a private phone call. Plus he doesn’t want me talking to the doctors or staff as he thinks I’m meddling. Sheesh!
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My husband had inoperable throat cancer, stage 4. He went through chemo and radiation. He was told he was in remission, which he thought meant he was cured. How cruel. I explained that just meant that the tumor had stopped growing for now.

Anyway, he got worse and was admitted while I was out of town. He was transferred to an outstanding Oncology Hospital. His scans showed it had spread everywhere. They gave him 6 months, he lived 6 weeks.

You just don’t know. Even the doctor’s opinion is a best guess and they are optimistic. You should plan on this progressing rapidly. Down the road, you will be happy if it does.

Stay strong, take care of yourself, not just him. I wish I could give a huge hug.
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If you are your husband 's PCG, and it sounds like you are, schedule a
" family meeting" with the doctors and, address your concerns; if your husband is cognitively capable or not to ask and address questions, he of course should be included; if not you certainly have the right to request a meeting with his care team regardless. You say that he is on" palliative care", ; this is different from " hospice" although some hospice care is palliative. You may want to speak with a " hospice" of your choice and explain your husband's situation and yours . Hospice will be glad to give you information and if you want him admitted to " hospice", you have the right to ask his Physician for an order for this. If your husband is in " hospice care", they will be able to answer a lot of your questions and be supportive for your husband and you. Hospice is about living in the midst of a life limiting illness, not about dying. Yes hope is always important and hospice team can help you , your husband and family with appropriate hope.
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tryingmybest8 Dec 2022
I believe if he is referred to hospice, all treatments will cease. He desperately doesn’t want to stop treatments. So, we are on round three out of six chemotherapy treatments. Which do not seem to be working.
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The answers already given are excellent. I just want to say how sorry I am that you have to go through this. You said the diagnosis was recent- who gave it to him? Doesn’t he already know what stage 4 means? This is like getting hit by a truck and I hope you have some people to support you. Does he have any other relatives to help? When my father really couldn’t drive, it was a neighbor rather than a family member who had to tell him. Also, there are places where he can have his driving skill evaluated and they would tell him he can’t drive. Prayers and good wishes as you go through this terrible journey.
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tryingmybest8 Dec 2022
Thank you for your reply. I believe my husband knows where his cancer is going as his brother passed away several years ago of the same. He has volunteered giving up driving, so we are beyond that. I think he has been blindsided by the diagnosis because he has been going to different doctors for undiagnosed pain for months and no one found it until October. Just two weeks before he was going to retire. Lately I’ve seen a change in him and depression is setting in. I’m not sure what’s next.
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trying,

If you have the written authority, call the Dr's office and speak to his nurse, ask for a private call so you are informed.

As a retired RN having worked in Hospice, I know that statistically, MDs over-prognosticate by a factor of 10. Meaning that a person may have 2 months but the MD sees 20 months and has an overt faith in their ability to 'heal' their patients. I worked with one MD who abhorred his patients once in Hospice, as if they had failed him in his care of them, he was awful for us RNs to work with.

His Dr should be willingly open about speaking with you about your DH's condition and prognosis and hopefully, she/he's one of the realistic ones...

Wishing you strength in what is ahead, it's very hard, everything you're experiencing with your beloved.
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See below. Contact them. [Gena / Touch Matters]

https://www.cancer.org/about-us/online-help/contact-us.html

Call: 1-800-227-2345 - - - Please call us or use our Live Chat feature for assistance with the following or any other inquiries you may have:

Cancer-related information: At our National Cancer Information Center trained Cancer Information Specialists can answer questions 24 hours a day, every day of the year to empower you with accurate, up to date information to help you make educated health decisions. We connect patients, caregivers, and family members with valuable services and resources. Or ask us how you can get involved and support the fight against cancer.

In addition to the support we are providing to cancer patients who contact us via phone and chat, we’ll be helping offset feelings of isolation for families facing cancer and seeking information by offering video chat. Schedule a video chat today.

And: document all that this MD is doing / not doing. Perhaps it is time to report him to the authorities. Get everything in writing.
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Sounds like you need to have a very honest discussion with your husband. He's leaving you in financial jeopardy since you are the one who will be covering his bills. He is also placing a tremendous burden on you with his care. You have the right to know what to expect. You don't need to bring any idea of death into the discussion. Just tell him you love him, have hope (because that is what he needs to hear), are trying to financially plan and need to have resources available for his care. He needs to know how you honestly feel. Sticking his head in the sand is not going to help him or you, and he needs to understand that. It is time you had a very honest discussion with your husband.
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Your husband doesn’t want to talk about what’s happening to him - but it’s not fair for him to deny you information about that you will need to know to care for him. If he wants to go out in the hallway during conversations with doctors; let him - but it’s selfish to deny you answers or information that will make caring for him less anxiety producing for you. Can you put it to him that way? That it’s what YOU need … and you will be the one dealing with the messy stuff.
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I have a dumb question...
Now please forgive me I am a PROPONANT of Hospice. My Husband received excellent care and I would not have been able to do what I did if it were not for Hospice.
Given your husbands diagnosis is there a reason the doctors have not referred him to Hospice?
I know he is on Palliative Care but I think Hospice would give you far more support and the staff would talk to you.
I am also a believer that the Quality of the life you have is more important than the Quantity. If the radiation and chemo are doing him more harm than good in relation to the quality of his life is it worth it?
I realize that many people, maybe even doctors, think Hospice is "only" for the last 6 months or fewer. But many have been on Hospice much longer. Hospice is not just for the patient but the family.
((hugs)) for both of you....
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jonessu Dec 2022
Yes, get a hospice referral. Palliative care is designed to control the symptoms related to curative treatment for which your husband probably has many. In hospice, he would need to stop all curative treatment and would be transferred to a hospice physician and care team to support him and you. He would also be eligible for home visits. So sorry you are going through this.
I believe in hope.
There is hope for a peaceful passing.
There is hope for a death that won’t haunt or bankrupt those left behind.
In this for-profit environment of health care, it can be very challenging to say no to futile testing and treatments when the end is so obviously near. Hospice will have your back.
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If there is a non threatening way to have him give permission to the doctor to discuss things with you, that would be easiest. Perhaps, expressing confusion about his medications in case you have to pick them up or get them? Something like that. Otherwise, I would make an appointment with my doctor. Take the diagnosis along and explain you know he can't discuss a case that isn't his, but you would just like to understand the terms and what they mean. Organizations like the American Cancer Society have lots of info online. I called the Pancratic Cancer about a relative and they were very helpful. Your hospital may even have a support group. You better talk a little turkey to the staff if they haven't told you things like if he should drive,e tc. Is he trying to keep the information from you to make it less "real". Bless him, you can love him and still want to know what is happening with him and the best way to handle it. It is a very wifely thing to ask.You will need to take care of him, and hope he would want to do the same for you and need the kind of information you need. You might explain that to him. Good luck.
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In addition to the HIPPA form, you should have Advanced Directives in place; a Living Will that specifies what his end of life desires are including whether or not he desires to be on a respirator and/or receive artifical hydration and feeding. You should also have an appointed Health Care Agent. This will allow for the designated individual to make healthcare decisions for your husband if he becomes incapacitated and is unable to make decisions on his own behalf.
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I requested an appt for me to talk to the MD alone. I requested he could bill me or moms insurance. Perfect!
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When my Dad was going through treatment and on hospice for stage IV lung cancer he gave all his doctors permission to discuss everything with my Mom and me through the HIPPA form. I was able to call or email without my Dad with any questions I had. Hope this helps. Thinking of you and your family.
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That your husband's illness is terminal. The best thing to offer is comfort at this time.

Read advice from our forum team to get ideas.
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Doctors vary. When it comes to difficult conversations I'd say they vary too. Some will use a blunt matter of fact speech, full of medical terms, or statistics. Some may be more vague or even evade.

Maybe this Doctor is 'reading the room' & the 'vibe' from your Husband is that he is not ready to hear any dire news? I can understand this, but it leaves a gaping hole for you. I would imagine at the very least a brochure for more information could be slid over to you. I send my sincere kind thoughts to you & hope you can get the knowledge you need from other sources.

I've met people who quite openly discuss their prognosis. Wish to discuss the practical details or wish to talk about spiritual issues - they wish to talk. This can be a blessing for some family members but a burden others cannot bear.

Other folk just don't want to think or discuss anything at all.

There are certainly no rules. No right way or wrong way.

I read a beautiful story by a woman who's husband had terminal cancer. She wrote their goal was to live 'as normal as possible, for as long as possible'. Then, to adjust, in steps, to each 'new normal'. I liked this. Not big false hopes, but hope was imbeded in small ways in the little details of daily life. I hope it will be a nice sunny day to get out out to the garden.. I hope the coffee shop has our favorite treat today.. I hope we can get to the beach next week. Small things.

I think if hope & some ignorance is helping your husband, let him have it. He will let you know if or when he changes his mind.

For you Trying, of you are connected with a palliation or hospice team, have a quiet word to one of the senior nurses. Hopefully they can arrange time to call you. Take that call & walk outside or go sit in the car for privacy.

If this is not available, look for a cancer helpline (although this will be more general information, not specific to your husband). Another option would be to chat to your own doctor privately & ask about a counselling service.

Support for you is so important as you support your husband.

Take care.
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Tryingmybest, I am so sorry for your situation.

May The Lord give you strength, courage, wisdom and comfort during this difficult time.

I would set up his portal, if it's not already done, and ask the doctor to help you understand the prognosis.

My sister had stage 4 cancer throughout her body, opted for no treatment and passed away in 10 weeks. The oncologist had given her 7-8 weeks with treatment.

She didn't want to hear anything about her situation, period, end of discussion, if you brought up her dying. My heart goes out to you, it's hard when you want to say goodbye and share things and it is met with a full STOP!

Great big warm hug! Your little dog is precious.
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tryingmybest8 Dec 2022
I’m so sorry you lost your sister to such a vicious disease. My heart goes out to you.
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IF you are listed on your husbands forms for HIPAA release of information can you set up a Portal with the doctors office so you can ask questions and they can reply? This way the questions and answers do not go through your husband and he does not have to know what you are asking.
It is a shame that he does not want to be as informed as possible but there are "Ostridge" people that prefer to keep their heads down and there are "prairie dogs" that keep looking up and are curious as to what is going on.
Doctors in school are taught to "cure" they do not know how to accept that for some things Palliative or Hospice is a better more humane option.
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tryingmybest8 Dec 2022
Thank you. I will need my husband to sign the HIPPA forms or a healthcare DPA. My husband is on palliative care but I don’t think he understands what it is. They started out with brain and spine radiation. Now he’s going for round three of chemotherapy. All this is extremely debilitating. He has gone from working 50 hours a week to barely able to walk around the house. All in the last six weeks. I’m not sure what this palliative care is supposed to be doing, but he’s absolutely drained of all energy. Maybe it’s the cancer, maybe it’s the treatment. I may never know.
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What a shame these people -- and especially your husband! -- are willing to put you in a financial hole because they won't tell him the truth.

Granted, I'm no doctor, but it seems to me that chemo and radiation is a futile exercise at this point, and he should be getting his head in a place where he isn't in denial. If ever there was a case for hospice, he's it.

I was with my dad when he received his terminal cancer diagnosis, and his doctor sent him off for an (unnecessary) x-ray so he could talk to me. He'd told my dad he could have as much as a year, but when Dad was gone, he told me he had maybe a month.

I think my dad knew that he didn't have anywhere near a year, and after a week or so of feeling low, he got on the phone and started calling his friends to tell them how much he valued their friendship. He also turned over all decisionmaking and caregiving related to my mother to me, which took a huge load off his shoulders.

We signed him up for hospice after about three weeks, because he was having no treatment except for draining the fluid out of his abdomen. He and I had many heavy talks about life and death, and he planned his own funeral. He made the most of every minute left to him and died with full and complete peace.

I wish the same peace to you and your husband eventually, and remember, he has the right to say no to further treatment. I know he wants the treatment now, but eventually he may not and you'll need to be his advocate.
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tryingmybest8 Dec 2022
Thank you for sharing your story. I do wish I could talk openly with my husband and share what little time we have left together. I hope my husband finds peace.
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I would look at the doctors right in front of your husband at the next visit and say you both need an honest idea of what to expect and what your husband should and should not be doing going forward. This isn’t the time for anything other than honesty. It’s not taking away hope, it’s learning to deal with what’s coming. Your husband may not be able to process the information and that’s okay, but you will, and it’s you that needs it the most. I’m sorry you’re both dealing with this. Please be sure all needed documents are in place. I wish you both peace
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My sister passed away in 1996 from an aggressive form of breast cancer. Her doctors did not sugar coat her diagnosis. She was put on an experimental drug that the other woman had made 3 yrs. I was told by one of my Doctors, at the time, that Doctors have to give you the worse case scenario because of malpractice.

Yes, if your willing the doctors will keep pushing that chemo. Its a money maker. Sorry, I see no miracle here. The cancer is all through ur husbands body especially the brain.

I would wonder if him talking to a therapist would help him understand that he has to get his life in order. There should be some kind of support for you too.

If you can get that Medical POA, I would. Your husband is going to become incompetent. He will not be able to make informed decisions. You will need to make them for him. Also, make sure its Immediate this way you don't need a doctor signing off concerning competency.

If you can make an appointment with his doctor, be aware that Medicare will not pay for it. Your husband must be with u for that. I would say to the Doctor to stop giving your husband false hope. He needs to know that no amount of chemo is going to cure him. Give him more time, maybe but only to be made sick from the chemo. He needs to face his immortality. He needs to realize that this chemo is just not going to work at this point. I really think the Doctor is being cruel giving him false hope. He should be spending his final days with you in your home being cared for by Hospice.

I am so sorry you are going thru this and no one is considering your feelings in all this. IMO, as the wife your questions should be answered. Doesn't matter about HIPPA or Medical POA. Your his wife and what happens to him effects your future.
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TMB8, I hope you won't be blocked from accessing this site -

https://www.macmillan.org.uk/cancer-information-and-support

- Macmillan are our go-to people for practical advice. I expect there is a direct US equivalent, it's just I don't know what it's called. If you look up the cancer type and add "living with" you might find caregivers' information.
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tryingmybest8 Dec 2022
Thank you! I am able to access the sight. There are real people and their experiences on there. I don’t know how we got to this point without any knowledge of it. It’s shocking.
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People respond to these things differently. Your husband doesn't want to know what lies ahead, and who can blame him?

Doctors are notoriously evasive about giving a time frame, because you really can't predict these things. (I have a lady on hospice who was "actively dying" a month ago. Yesterday, she talked to her son on the phone and chatted with me. She's doing fine. She's just old.)

Get a hospice consultation. You can get one without your husband's permission. THAT doctor will be more honest about his prognosis and quality of life. You don't have choose hospice in the end, but at least you'll have more facts.
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JoAnn29 Dec 2022
I don't think you can be on Hospice just because your old. The woman has some kind of illness she will probably die from. COPD, a cancer, kidney failure, etc.
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Thank you for your replies. I will try to discuss a durable poa with my husband. We’ve been married 44 years and he feels like I’m controlling. It is his life, but he refused to learn anything about his cancer or treatments. He is following the doctors orders without questioning anything. They gave him a document to fill out for end of life care, which he refused. The hospital had to get two doctors together to get him to sign a DNR form. He just refuses to acknowledge anything. I wish the doctor would have a really serious talk with him about his future, but it probably won’t happen. They just think they’re doing good by giving him hope. Am I wrong? Should I also pretend that everything is going to be fine? Some days I can pretend, until something happens and I have regrets.
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babsjvd Dec 2022
Call the dr s nurse , see what she can answer. Are you on the HIPPA form at Dr s office? If not next visit get that done. Very routine form…

next visit , call the nurse and let her know what you would like discussed at the visit.
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