I’m new here and need help trying to figure myself out. My dad was recently diagnosed with stage 4 renal cancer that has spread to the brain. His cognitive function is practically nonexistent but he does try to communicate and responds (sometimes) when spoken to but I don’t know if he fully understands. Dr. said he had about 3-6 mos. left to live and they can’t really do much for him because he has heart problems and bleeding in the brain. My question is this. I recently decided to take him home from nursing home with home hospice but thinking that it could possibly be a mistake because 1. I want to continue his treatment (diabetes, seizure, blood pressure medication etc.) and 2. What IF the prognosis is incorrect? Can someone please help me put things in perspective?
Hospice is not irreversible either. You can change your mind and go back to aggressive treatment if the dr is also willing. But I would say if he has stage 4 renal cancer that has spread to his brain and his cognitive function is poor, it sounds like he is not going to recover and aggressive treatment, in my opinion (I’m not a medical professional) would likely contribute to his suffering without extending his life or improving life quality.
And please know that it will be hard to take care of him at home. Hospice does not provide round the clock aides. You have to pay for that. Talk to them. They will explain all this.
As to the prognosis, no one can know for sure how slow or fast your dad’s decline will be. Hospice is generally granted if the dr thinks he has on average less than six months to live. I have heard of cases where people stay on hospice for three years or more. But if your dad can’t improve much, would you want him to continue as he currently is for years? Would he want to? Would you if it were you?
Home hospice was a blessing for my dad and my family. But it was still VERY challenging and in the end it became impossible to safely care for my dad at home and his final 3 days were in a hospice facility where he had access to round the clock multiple aides and nurses plus oxygen, morphine, and equipment that we just couldn’t have at home.
I wish you peace.
I’m sorry your dad is entering his death phase.
In a nursing home he would have 24/7 care . They can do palliative ( comfort care ) in the nursing home .
Has his current oncologist reviewed his images with you so you can see with your own eyes? Has he received any treatments for his cancer yet?
Please take to heart the advice from those who responded about taking him home at this point.
I'm so sorry for this distressing situation. May you receive clarity, wisdom and peace in your heart as you help him.
As for the meds, at this point all his other medical problems really make no difference.
My step-father died of renal failure, he also had cancer of the bladder, we removed him from dialysis, and he died 24 hours later, actually he did not suffer much after the decision was made.
I am very sorry that you are facing this, however, please try and think with your brain, not your heart, the heart is not designed to do the thinking. it is totally emotionally driven.
My goal would be to keep him comfortable, medicated for pain and allow him to die in peace.
I wish you the very best.
Blood Pressure can continue to be treated.
Not sure about the seizure medications though. I did a quick search and medications for seizures can be continued on Hospice.
I think you are doing the right thing bringing Hospice in.
I do hope that you can care for him at home. By that I hope you have help. Caring for someone 24/7 is not easy.
As for the prognosis.
With all your dad has going on, heart problems, Renal cancer (s-4) that has metastasized to the brain and brain bleed. I am sorry that the doctors are probably correct. Now the 3 to 6 months..well that is not written in stone. It could be less, it could be longer. it could be less.
What I can tell you is that Hospice will help you through all this.
Use them for support, education, the will answer all your questions and make sure that your dad is comfortable. Their goal is to keep a patient as comfortable as possible.
((hugs))
If the diagnosis WERE TO BE WRONG your father would live, so even the conjecture is quite the waste of time that needs now to be directed toward making your father's last days as quality as you can.
Hospice will not withdraw any meds that are helping your father with comfort in his last days. That will include, almost certainly, anti-seizure meds, diabetic meds, and medications to control out of control blood pressure. You will speak honestly and openly with hospice about this when you interview them. Your questions are better directed at them than a Forum of strangers from around the world.
This is a lot to take in. This is about absolute shock, pain, helplessness. Try to take it a day at a time. If you have questions about diagnosis and prognosis they are for the care team. If you have questions about hospice and medications it is for the hospice team, and you should be honest and upfront with them all.
I am dreadfully sorry for this diagnosis and this prognosis. I suspect with stage four that has moved to the brain you would not have as much time as projected, but only time can tell. Allow him to eat when he wishes and do as he wishes. Ask hospice about in facility care should this become too much to handle at home; when the brain is affected it is often more than one person can manage.
I am again, so very sorry. I hope you will update us. I hope you will see to it your father is well medicated and kept as comfortable as he can be in these last days. I wish him peace and wish you strength, acceptance and peace.
Speak with your hospice RN in detail about the meds you'd like dad to stay on, and their reevaluation process in 6 months. Please know that with brain bleeds from cancer Mets, dad's days are very numbered now, unfortunately.
Good luck and God bless you and your dear dad.
That worked well for us, and I have no regrets. However I think that Suzy23’s answer is spot on, and I suggest that you base your decision on that. ‘Comfort’ drugs won’t be interfered with, that’s not something to worry about.
Best wishes for a difficult time ahead, Margaret
However please know that the hospice nurse will only come once a week to start(more if needed)and aides will come about twice a week to bathe your dad.
Of course they will supply any and all needed equipment, supplies and medications all covered 100% under your dads Medicare, but 99% of your dads care will fall on you or other family members or paid help.
It will be hard no doubt about it, but hopefully your dad will be able to die in peace surrounded by his family, and you will have peace with the decisions you made.
God bless you.
I am very sorry for his diagnosis and wish you peace.