How can I get answers from doctors to my questions when my husband is always with me?

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How can I get answers from doctors to my questions when my husband is always with me?

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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?

Cancer Communication & Language Medical Care Spouse

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Ask for an appointment for yourself and leave hubbie at home, with a sitter if necessary. Tell him you have a doctor's appointment for yourself if you must (not really a lie). And do a little bit of online research before you go so you can ask direct questions instead of the vague "what's his prognosis" so they are less able to evade. So, "if X is true, then what does that mean today, what happens next" kind of thing.
My SIL used to be a cancer clinic social worker and often had to sit with people to explain what the doctors had told them, so that's another possibility.
And do you have hospice on board? The nurses there should be able to interpret his chart and are more apt to have the kind of answers you need.

Have you ever heard of the book Being Mortal by Atul Gawande? It's a very good read that discusses the conflict between end of life care and modern medicine.
https://www.agingcare.com/products/being-mortal-medicine-and-what-matters-in-the-end-433866.htm

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Thank you for your reply. When he was first diagnosed with this, the doctor offered palliative care. I mentioned hospice, the doctor said yes, and my husband immediately said no. I’m not ready for that. That was six weeks ago. I do have access to a social worker who told me I’m dealing with anticipatory grief. Offered to teach me deep breathing exercises, and thought control. Nowhere on the internet is the cold, hard truth about dying of cancer that is everywhere. And I can’t believe the bills are up to $245,000 already, in six weeks! Cancer is a big money business. I hope my insurance holds up.

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Make an appointment to talk to the doctor alone, I had the Durable Power of Attorney for my cousin so I did that on a regular basis.

As for the driving, get a letter from the doctor as well, stating that he should not be driving. Then report it to the DMV.

You need to start thinking out of the box for him and your own safety.

Health Care professionals always want to play make believe when it comes to the final solution, death.

My father had small cell carcinoma of the lungs, he had over 100 tumors in his lungs, so I tell the doctor point blank I want the truth no "let's pretend" so he says "Well, with chemo he could live 6 months or longer, after all there are miracles". Me: "Oh please from the looks of the xrays he won't be here in a week, stop all treatments". He died 2 days later.

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I’m sorry you had to fight to get answers. I feel this way also. He says he has no choice but to try to fight the cancer, but so far the treatment hasn’t worked and he’s continuing on. I don’t have a durable poa, so I’m going to have to get that asap. I hope he agrees.

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Get the HIPAA form for Medical Representative from his oncologist's office and have your husband write in your name as his MR then return the form to the clinic so they have it on file.

This will allow you to discuss his medical information with his doctor without your husband having to be present. You will also be able to give info to his doctor that the team will be able to act upon.

You do not need to wait for anyone to tell your husband not to drive. My uncle killed his own wife in an accident because his children didn't have the courage to just end it. She was a 2-time cancer survivor. It also injured people in the other car. Do whatever it takes to prevent him from driving. I don't know how a doctor can write a note when the doctor never sees him driving. This is why you may need to anonymously report him online to the DMV and they can act to end his privilege. Or, you disable or remove the car. You keep all sets of keys, etc.

I'm so sorry for your husband's diagnosis and the stress and chaos it has thrown you into. Be sure to speak to his doctor about depression, as they may be able to do something about this as well.

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Thank you for your reply. After I spoke to the NP, they convinced him he shouldn’t drive. I will have him sign the paperwork so I can communicate more effectively. We’ve both talked to the doctor about inability to sleep and depression. They keep telling us to think about other things. To put it out of our minds!? Seems cruel.

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If you are on his HIPPA form or are his medical POA, you can send questions through your husbands patient portal, and they are "supposed" to respond within 48 hours.
I am all for having hope, but there are just times when we all have to face reality.
I'm sorry this is yours. God bless you both.

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Thank you for reminding me. I need him to sign the paperwork.

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What are the questions to which you want these honest answers?

Do you think your husband's wish "not to know" is an active choice, or just his line of least resistance?

You've put me in mind of a time when a friend told me his workplace had asked him to sign a "get well soon" card for a colleague, who was going on leave for cancer treatment. "Not a chance!" he said, and he mimed writing across a corner of the page. I hope that isn't really what he'd written in it (though I wouldn't quite put it past him, alas).

There is positive mental attitude, and then there is false hope, or even nonsensical pretence of hope that leads to exploitation and insults to the intelligence.

On the other hand, there is truthfulness and then there is calling a spade a damn shovel.

There is considerate reticence, and then there is withholding essential information that a person needs. E.g. these medications may severely affect your ability to operate machinery. Including cars.

You know your husband best, you know where the right point of balance is for him so that he is told what he needs to know, without being forced to hear what he genuinely (at the moment anyway) does not want to know. Isn't there anyone on his healthcare team you can trust to state the facts without crushing all hope?

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This exactly! There is a line which he cannot cross, but because the healthcare team won’t discuss without him, I don’t get the answers I need for the future. Radiation and chemo has affected his brain, not to mention the tumors growing. The only side effects they mentioned were nausea and vomiting. He had none of those. But ended up in the hospital with pneumonia and sepsis. Luckily I got him there in time but it was pure luck! NowI know what I’m looking for in infections. But what about his spinal tumors? Is he just going to become paralyzed? Or his brain tumors? Will he start having seizures? I know he needs hope, but I am in this alone every day and if they gave hime less than a tear to live, they must know where this is going.

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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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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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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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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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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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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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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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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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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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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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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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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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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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I’m so sorry you lost your sister to such a vicious disease. My heart goes out to you.

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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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tryingmybest8: Perhaps you can schedule an appointment with your DH's physician for YOURSELF wherein you can ask questions.

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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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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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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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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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How can I get answers from doctors to my questions when my husband is always with me?

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