Pain killers appear to have put my wife into a catatonic state. Am I wrong to refuse them on her behalf?
Please pray for us as we are held captive by the medical system and it's pharmakeia (sorceries). Here is our abbreviated story:
My wife, Sharon, has been bravely fighting cancer for a few years now. She miraculously reversed breast cancer with a combination of natural remedies, faith, and allopathic medicine (necessary but contrary to our beliefs). However, it was discovered a year ago that the cancer metastasized to the brain where a tumor causes stroke-like symptoms. The symptoms are controlled with a corticol-steriod (Dexamethasone).
This has been an extremely difficult condition to deal with and has confined my wife to bed and wheelchairs for long periods of time (where she listens to Bill and Clifton's teachings by the way). I was able to put nursing and homecare services in place but the homecare provider and their staff have proved to be beyond incompetent. They repeatedly dropped her and she started suffering severe back pain which made it difficult for her to lie flat in bed. This led to leg swelling and pressure sores on her rear from sitting too much. My wife complained of abuse from one of the PSW's last week and I filed a complaint. A VON nurse stated that Sharon's pressure sores were not going to heal unless she was admitted to hospital, placed in a special hospital air-bed and turned frequently. Together, we decided to take the hospital option to heal the pressure sores. Sharon was relatively fine otherwise.
At the hospital, the nurses and I noticed that her back pain was quite severe every time they turned her. Belately, I started to suspect a spine fracture. After a few days, the doctor advised us to put Sharon on a pain killer (Hydromorphone) three times a day. She took this drug before when she had the breast tumor without any serious problems. However, this time around the hydromorphone has quickly put her in a catatonic state and she is declining rapidly. Yesterday, I wanted the doctor and nurses to at least reduce the dosage. Sharon did not want to take the pain pill and refused to take it orally today. Now they want to proceed with giving her a subcutaneous injection of morphine. This seems like a death sentence to me and they seem determined to proceed with this despite our objections. The doctor says that her catatonic state is from disease progression and the nurses want the convenience of turning her without having to listen to her scream or groan. Short of kidnapping my wife, what should I do? Am I wrong to say no to morphine? By the way, I have power of attorney for personal care.
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.
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.
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.
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.
"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.
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.
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.
Do NOT discourage your wife from medicating away that pain -- whether it makes her catatonic or not. That's not your place.
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.
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.
I agree that hospice care here is very frustrating and hit and miss, I envy the coordinated approach available south of the border.
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.