Pain killers appear to have put my wife into a catatonic state. Am I wrong to refuse them on her behalf?

Richard, prayers for you and your wife.
You appear to be working through each issue, and that is what you can do.
You are right to advocate for your wife since you know what she would want, and in addition, you know what she might need when she cannot decide.
You are right to ask questions, to also ask caregivers on here, and you are right to have considered the answers carefully according to your wife's needs.
Seems that you are not wrong, but doing everything right. Imop.

Good news!

I agree that hospice care here is very frustrating and hit and miss, I envy the coordinated approach available south of the border.

Sharon is out of her "coma" now and is starting to watch people and is trying to talk. What a relief, that was scary! She ate a good breakfast. We continually have to tell the nurses not to give her morphine unless needed for rotation or transfer. She doesn't like the current nurse today and has been giving her the evil eye - it's comical. Her doctor was just here and was impressed with her improvement. Her x-ray revealed no back fracture or cancer present so that is good news. However, she is showing signs of osteoporosis so we'll have to give her calcium and vitamin D and she probably needs physiotherapy. My next challenge is to convince her to take her antibiotic pill.

Here in Canada the hospice care is more for companionship and emotional support which is an area not being addressed at present. We contacted the local hospice palliative care assn and apparently the group is falling apart since the leader developed cancer herself.

Thanks for the comments everyone.

Rich, we may not have American style hospice, but you had PSW's and visiting nurses through VON which really amounts to the same thing. You say she has fought for a long time now, it seems the docs feel the end is near. Her body has become too frail to fight and is breaking down little by little. Hold her hand and keep her pain free. Call friends/family to hold your other hand if you can.

Richard7, my heart goes out to you. My daughter had brain cancer and was on Hospice. The painkillers are not making her catatonic, the brain tumor is. You know you are close to the end now, please prepare for that. You have been a good and loyal husband.

Sunnygirl, was asking myself how the treatment would differ if there was a fracture.
I don't know, but if there is a fracture, would they be turning her causing pain?
If then, how would the pressure sores be healed?

So sorry, Richard, that you and your wife are suffering so.

We live near a small town in Northern Ontario, Canada.

RIchard, where are you that there is no hospice care available? That is very sad.

There are prescription strength ( very strong) varieties that are sometimes used, even with localized cancer pain. Hope this works!

Babalou, Thank you for the pain patch suggestion - great idea. I wasn't aware that there was such a thing. Richard

Havevthey tried pain patches for the area in question? Those have helped my mom who has compression fractures in her spine.

Do you need proof of a possible spine injury for evidentiary reasons? Even if that is what it is, how would the treatment be any different from what they are prescribing now? It just seems to me that they would recommend the medication for pain, regardless of what is causing it.

Your wife is not going to get better from breast cancer that has metasticized to her brain. It's horrible and awful, but it's true. No matter WHAT the cause of the pain, whether natural disease progression, her caretakers' mistakes, or a combination of both, the pain is real.

Do NOT discourage your wife from medicating away that pain -- whether it makes her catatonic or not. That's not your place.

I think we need to determine if the pain that my wife is experiencing is caused by the brain tumor or damage to her back from the fall(s). So x-rays and scans are essential to CORRECTLY diagnose her source of pain. The pain is occasional and locallized to her lower back and ONLY occurs when she is placed at an angle of 10 degrees or more from a lying flat position or when rolled when lying flat. This pain commenced immediately after one of her falls.

Her catatonic state happened immediately after the doctor prescribed hydromorphine was administered. I suspect that the dosage is much higher than she used previously. Having brain cancer is not pleasant but being coherent and functional with occasional pain is certainly better than being doped into a deep catatonic near-death state on the SUSPICION that the brain tumor is causing the pain.

Unfortunately, hospice pallative care is non-existent in the area in which we live. It would take the pressure off us if it were.

Sorry for the sorcery comment. The Greek word "pharmakeia" which means "drugs, poison" in Greek appears in the New Testament translated as the English word "sorcery".

Since my wife went through enough pain and agony with radiation and chemo for her breast cancer she has had her fill has refused surgery and radiation for her brain tumor.

I understand the need for pain control especially in the later stages of cancer but to blindly throw high dose morphine at a patient without proper testing and diagnosis is potentially a very dangerous misdiagnosis.

Just another thought - you apparently are proxy under her Living Will or Advanced Directive....if you refuse medical treatment that the doctors consider necessary, it's possible they could take legal steps to override your authority and administer the treatment they feel will help, including pain mitigation.

So it might help to learn more about the morphine, the dosage, how it affects her, and specifically whether it's the morphine or the metastasis that's causing the conditions you seek to alleviate.

I'm going out on a limb here but I think this needs to be said. Your first statement was:

"Please pray for us as we are held captive by the medical system and it's pharmakeia (sorceries). Here is our abbreviated story:"

Sorcery? Are you saying the medical professionals are sorcerers?

I do understand that you have strong religious beliefs, but your wife has serious medical issues, and you've sought treatment from the conventional medical professionals for treatment. If you feel you're held captive by these "sorcerers", I'm not sure you really want their treatment or understand what they're trying to do.

First, recognize that morphine is powerful. I had it once and that was the last time I will ever have unless I develop a terminal disease. It knocked me out and had side effects for a week afterward. And that was only for surgery.

Second, your wife is probably in excruciating pain. Isn't it compassionate for the medical professionals to address that and try to alleviate her pain? Would you rather she suffer?

Third, you wrote that a tumor caused stroke-like symptoms. Have you discussed with the doctors whether this tumor can be removed, or would it be best treated with the med as you described? In addition, what parts of her body are being affected by the location of this tumor?

Fourth, you wrote that your wife was "relatively fine otherwise" when she was admitted to a hospital for pressure sore treatment. I don't wish to belabor a point or inflict emotional suffering, but with metastatic cancer and a brain tumor, I think it's not realistic to believe that she was fine.

Fifth, and I caution that I'm speaking only from experience, but when my sister's cancer metastasized to her brain, she also developed spinal as well as mobility problems. She could walk only with difficulty; the brain tumors (13 of them) were affecting her spine.

Depending on the location of your wife's brain tumor, I'm wondering if you discussed with the doctors whether the tumor itself was causing or contributing to the spinal pain?

Sixth, I would suggest you ask yourself that if you kidnapped your wife, how would you care for her during the advanced cancer state? How will you know how to handle any changes or further metastasis?

Seventh, I'm sure that anyone as devout as the two of you are is reluctant to address that cancer can be terminal, and your wife may be reaching that state. Hard as it is to accept, try to do so; get counseling from whoever is head of your particular religion, try to connect with others who are battling metastatic cancer via a support group or through Gilda's Club, and educate yourself as much as you can to the actual physical conditions. This knowledge will help you understand what the situation is and hopefully guide you through the next phases.

As others, I am sorry that this cancer hasn't been contained but hope that you can find some comfort in knowing that your wife is getting better care at a hospital with people who are skilled in treating it than she would be at home in the absence of advanced diagnoses and treatment availabilities.

Repeatedly dropped her, led to leg swelling, bed sores. Did a diagnosis confirm a fracture? Even with 'progression of the disease process', can we have a definitive diagnosis regarding this pain? Why would anyone be turning her with a fracture?
Being dropped is not a progression of the cancer disease process.

So very sorry, and no need to explain to me. Please get a second opinion.

As a healthcare provider, if my patient is screaming and groaning in pain you can bet I am going to offer that patient pain medicine and not just offer it but encourage it. The screaming and groaning doesn't inconvenience me, it makes me hurt for the patient. It makes me want to do everything in my power to take away their pain. It makes me want to stroke their brow with my hand and whisper to them that it's all going to be ok, that they're ok, and that they will have relief from the pain in just a few minutes, just as soon as I can draw up their medication. A patient's screaming and groaning from pain isn't an inconvenience, it's a sign that their pain isn't being controlled, and that is unacceptable.

If your wife is in agony every time she's turned she should have pain medication prior to each repositioning. I would also agree with Babalou in suggesting hospice for your wife. Hospice providers are experts in pain control and will listen to your concerns and work with you in providing your wife what she needs going forward.

Your final question to us was are you wrong to say no to morphine. My answer would be yes.

Richard, I'm so sorry that your wife's cancer has metastasized and is causing her such pain. Pain from end stage cancer can be excruciating. I'm sure you don't want your wife to be in pain when being cared for.

When one has a life-limiting illness and there are only opportunities for palliation, not cure of a condition, it may be time to consider calling upon hospice services.

Know that you've done everything you can for your wife. Continue to help her complete this journey in peace.

She took this drug without adverse effects in the past. Why are you concluding that it is this drug that has her in a catatonic state and not the disease process itself?

It is true that Hydromorphone can cause a very long list of side effects. It is also the case that the brain cancer, depending on where the cancer is, can have a huge range of symptoms.

Whatever the cause of your wife's state, drug or disease, she is still in pain, right? I don't suppose you like the idea of your wife screaming and groaning in pain any more than the nurses do, right? It is not a matter of "convenience" -- it is a matter of concern for the patient. Medical professionals typically don't like to inflict pain. So if she is not going to take Hydromorphone, what is your wife going to take to control the pain? The doctor is suggesting morphine. It think that is a very common suggestion for treating pain in cancer patients. (oncolink/experts/article.cfm?id=2347) The cancer itself may be a death sentence, but the morphine wouldn't be. The intention is to keep her comfortable.

I had morphine after surgery many years ago. It certainly was not a death sentence. The surgery was fairly routine and I wasn't in mortal danger. I was just in pain.

I don't know exactly what your beliefs are, and I support you in respecting them for yourself and for you wife (if she shares your beliefs.) But if your beliefs allow you to accept pain management in the form of one drug, I don't understand why you would reject another drug that may do a better job in this situation.

I certainly hope the pressure sores can be healed and that your wife can be reasonably comfortable while that is occurring.