My husband has advanced dementia and also has damage to the bladder caused by radiation done in an attempt to control bladder cancer which he has dealt with for 30 years. The cancer had become aggressive and his urologist had ruled out further surgery. The scar tissue caused by the radiation has caused heavy bleeding. Husband is currently hospitalized because he needed a blood transfusion and had some urinary blockage. One doctor suggested hospice; however, as I understand hospice, no treatment is allowed for the condition being addresses. I assume this means no further transfusions when blood count is dangerously low and no relief of blockage should one occur. I don't believe he would survive long under these circumstances. He also has kidney issues and the hospital is calling in a kidney specialist. I don't know if I should involve hospice.
"I assume this means no further transfusions when blood count is dangerously low and no relief of blockage should one occur." I would ask for clarification on this point. It's likely that when the kidney specialist has seen your husband, the doctors will confer and decide the probable prognosis and make their decision based on the whole picture. If their answer is hospice, I think I would trust their experience and their wish for the best care for their patient. If it is just one doctor who suggests hospice, wait for the other doctors' opinions.
Also, since he is terminal, why continue treatments? Was this his wish before dementia days? Did he want to continue treatments no matter what? Otherwise what was his cutoff point? Will kind of play devils advocate here: if you did not have a chance to discuss it or if you did, are you doing all to prolong his life for you or him? It is a hard decision whether to let go and let his final days being centered on keeping him comfortable vs treatment just to prolong it. My heart goes out to you and I hope you have some support there as you make them.
My husband and I discussed these type of issues and he, nor I, want treatments to prolong a life with no quality left.
Yes, I agree with Mary that you need some clarification, and to talk this over with the doctors and the team. And you need to be ready to let the doctors know what your husband's wishes would have been, if he had been able to express them. When my dad was dying of the brain tumor in 1996, they offered blood transfusions as a palliative measure, but as it just would have prolonged the inevitable, he refused. (He was still able to make that call, but my mom knew his wishes and would have said the same thing, had he not been able.)
I'm just wondering if relief of the urinary blockage from the scar tissue would be done as a palliative measure. I would think a urinary blockage would be uncomfortable...and that it wouldn't be prolonging anything to put in a suprapubic catheter or something to relieve the pressure. Keep us updated--this must be a nightmare for you. Arms around.
Dear katlady, I am so sorry that your husband is at this point and that you are forced to make these decisions. I agree with those who suggest that you ask hospice what exactly their rules would be in this situation. (My brother-in-law was receiving artificial nutrition when he was admitted to hospice and they required that it be stopped.)
I also agree with those who say that his comfort must be paramount in considering any treatment, but I have no knowledge of how that might be achieved. I know from my friends' experience with their parents that you cannot just rely on any old doctor to guide you in making the overall plan for your husband's care at this stage. Some doctors, especially specialists, are just technicians who focus on correcting specific problems. You need to rely on someone who is willing to look at the big picture with you and focus on how to keep your husband pain-free and comfortable.
Please let us know how he is doing. I will be thinking of you.
I thank all of you for your support. There are still some tests to be run to see just what is going on. Joe has a high white blood cell count and kidney issues. The bleeding from the bladder radiation is also a big concern. If he is indeed terminal, my concern is keeping him comfortable. My three sons are very supportive as is my dear neighbor who is a retired physician. I will let you know as things progress.
I know this is hard. My DH was also having problems towards the end, other than AZ. And AZ is terminal. We suspected prostate cancer. But the testing would have been to much for him and the treatment would have help to just prolonged his suffering with the AZ. So his doctors and I decided to go to hospice. It was DH wishes in the past when we had talked of this type of thing. Quality of life.
Our Hospice was great at helping me to keep the pain under control at the end. I felt that I was able to give him the comfort and care that he needed till he passed.
I am exhausted this morning but have made my decision. My DH will be moved to an in residence hospice facility today. After watching the nurses care for him, I realized there was no way I could care for him at home even with hospice help. He has multiple issues besides the dementia not the least of which is that his kidneys are shutting down. The ultra sound also shows two new masses in the bladder. You get very little information from the doctors unless you happen to be at the hospital when they make rounds and the nurses are limited in what they are able to share with you. Add to that the nurses are pulled in multiple directions and it's difficult to have a meaningful discussion.
Even though I knew it was the right decision, I felt like I was abandoning him. I was able to sit down with the wonderful Palliative Nurse who said simply I was giving him the gift of the best care possible. I spent the evening on the phone with my three boys and his brothers all of whom were very supportive. The coming months (or however much time he has) will be difficult but I knew he will be as comfortable and pain free as possible.
Thanks to all of you for your kind support. This is a wonderful group who take time in spite of their own difficulties to care about others.
Oh katlady, I am thinking about you and him and sending support and hugs through ESP. (((((()))))). Let us know how it is going. This does sound like a good decision for you both.
The hospice facility is amazing. I could never provide the care they are giving my husband. As difficult as the decision was, I know it was the right one.
I am so very glad for you that you are at peace with your decision. I dread having to face the prospect of having to make a similar decision for my DH. I hope I am as brave as you are. Sending prayer and good thoughts your way.