My sister and I had to make the very difficult decision to transfer our father to hospice tomorrow.
Dad is bedridden and in so much pain all over his body constantly that he cries when the nurses change him. He is unconscious most of the time due to all of the pain medication and has difficulty eating, but drinks water sometimes with assistance.
He has both a suprapubic tube and nephrostomy tubes.
Our father did Provenge in Fall 2013, Zytiga from March 2014 to October 2014, TrueBeam radiation on his bladder in October 2014, 1 round of chemo in November 2014. He was too weak to continue the IV chemo, so 12/31/2014, he took his first dose of Xtandi (oral medication).
On 12/31, we also started trying a natural remedy called Sun's Soup, which is reported to have some cancer fighting properties. The 2 most important ingredients are Shiitake mushrooms and Mung beans.
Unfortunately, on 1/1, our father had to be taken to the ER because he wasn't eating nor drinking. It was discovered that he had pneumonia, UTI and was dehydrated.
Today (1/5), the doctor told us that the pneumonia and UTI cleared 2 days ago, although the nurse was still giving him antibiotics and said that his urine was cloudy (indication of UTI). We were receiving slightly conflicting stories. And no one told us 2 days ago that the pneumonia and UTI had cleared.
The hospital had received a call from the insurance company today, and almost immediately started recommending hospice.
Dad has been in and out of hospitals since mid-July 2014, and just wondering if we've done everything we possibly can to save him?
Dad said in a weak voice to me today, "I don't want to die. Help me."
I love my dad and it breaks my heart to have this helpless feeling of giving up.
Thank you.
Reply # - January 6, 2015, 07:56 AM
Hello son4dad,
Hello son4dad,
Welcome to GRACE. I am sorry to hear of how difficult it has been for your Dad (and you) recently. I understand all too well your feeling of helplessness.
With metastatic cancer, the goal of treatment is to increase both length and quality of life. At the outset, that treatment is focused on killing cancer cells while minimizing the side effects of therapy. As my wife's oncologist explained it to us, at some point the focus shifts from treating the cancer cells to providing as much comfort as possible, because anti-cancer treatments have begun to cause more harm than good. Recognizing that is not a matter of giving up, though it can feel like that.
It is always difficult to acknowledge when that point has been reached, and I can't tell you for certain that is where you are now, but from your narrative it appears that he may be too weak to tolerate more treatment, and that is why hospice was recommended. A frank discussion with his doctors may help you get a clearer picture of what is going on.
My thoughts are with you and your family at this very difficult time. I wish you peace and comfort.
JimC
Forum moderator
Reply # - January 6, 2015, 08:39 PM
I'm sorry you're in this
I'm sorry you're in this unfortunate situation. I think there are a few things making your job harder. First, it is very tempting for people to say something positive even if it doesn't change the big picture. We see this all the time -- a doctor or nurse or family member mentions that a kidney test looks better, but the patient himself is declining fast. It's a cop-out that is easier than acknowledging how poorly things are going overall, but it ends up giving people mixed messages that is some wisp of hope based on nothing meaningful. I don't know if that's the case here, but it does sound as if he's well beyond the point at which there is any further therapy that can help. It is far more likely that further treatments will harm someone too frail to tolerate additional interventions.
Second, I can't pretend that I know how I would feel when close to dying, but it's very sad when people who are extremely ill to make desperate pleas for more treatment just for the sake of more treatment. Most of my patients who are too ill for more therapy accept my recommendations against it, but some will still plead "I don't want to die -- I want more treatment". However, that doesn't mean it's feasible or appropriate. Inability to accept reality doesn't keep reality from existing.
Finally, there are an endless supply of treatments like Sun Soup that make grand promises but have no actual evidence beyond a few enthusiastic case reports and zealots. I appreciate the value of hope, but I think that too many of these medicines sell false hope. Any treatment that hasn't been shown to be helpful in actual controlled studies after being promoted for many years should be viewed with great skepticism, in my opinion. If it were really half as helpful as it is promoted as being, there would be no way to debate its wonders. Yet the absence of actual evidence to support these treatments speaks volumes.
I hope you and your father can achieve some peace, despite not saving your dad.