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Palliative care questions
Kessy
5 Posts
#palliativecare #palliative
Hello everyone,
I need some help.
my 72 year old father has been diagnosed with metastatic colacteral cancer about 2 years ago. He did all that he could with chemotherapy and everything but now he is on palliative care because the desease is too agressive. Doctors say we have days, maybe weeks in the best case scenario. On palliative care he is on: 30ml of morphine and haloperidol (with a slow realease pump) in 24 hours. Odnasetron when he feels like vomiting and iv fluids with omeprazole and prednisolone. He also has a gastro nasal tube to remove his stomach fluids. Till a few days ago we were also giving him something called cabiven, which is basically parenteral nutrition, and here is where the problem starts. The palliative care doctor says we should stop with it, because it does him no good it will only make his suffering longer, and just give him iv fluids with the medicine mentioned above. And maybe some liquid food once in a while from his mouth ( because he is hungry and he asks for food). While other doctors ( his surgeon, his oncologist and some others that have been taking care of him through the years) say nothing from the mouth and yes to parenteral food. He is aware, although he sleeps a lot by the way. But he understands perfectly whats going on around him. We are taking care of him at home, so this is a very important decision and we really dont know what to do. Can someone please share their experience? How did you manage the last weeks? Did you give the person parenteral nutrition till the last days? Thank you so much in advance.
11 Replies
ACH2015
2007 Posts
Kessy

My 84 year old father was diagnosed with incurable brain cancer. He became unable to properly swallow food, and then became unable to digest or keep down food introduced through the feeding tube. My father was not able to communicate or understand what was going on. His condition deteriorated rapidly, and we made the decision to stop feeding him any nutrients.He lingered for another ten days before he died.

Your father is able to communicate and understand his circumstances. Does he know he is now in the final stages of life? Has he mentioned or has anyone asked what his wishes are? Has there been any discussions around MAiD? I was not only a caregiver to my father during his cancer, I am also a two time survivor myself. Each of us will endure what we will, until it becomes too much for us. Some will make decisions on their own, others will need decisions made for them. I will not die like my father did, for many reasons. I will make that choice for myself in the end - and my wife is well aware of my wishes. It is very difficult to have your father at home, as the stress must be very heavy.

The palliative care doctor seems to be suggesting to deny nutrients to hasten the end of your father's life, and this is why I ask if assisted death was discussed with your father. As I suggested earlier, if your father is able to understand and communicate his wishes to you, present him with this information. At least then you know you are following his wishes until you have to make the final decisions.

I hope this helps, noting easy here - and its personal choices for all concerned.

ACH2015
Kessy
5 Posts
ACH2015

Hello and thank you for your answer. It helps a lot. I am sorry you had to go through this with your father and now with yourself, i really wish you all the best. As for my father He is aware of the fact that he is dying, and the thing is he has given us some signs of wanting to give up like saying: why are we doing all this? One night he even said; i hope it ends tonight. But we never really talked about it, we come from a culture where you dont really talk openly about death. It does seem like the palliative care doctor wants to do excactly what you said, and at this point i think its probably more our choice than a medical decission. I am just worried that if we continue with the parenteral nutrition we’ll do more damage than good. But at the same time its feels horrible to deprive him of food. We didn’t want to take him anywhere or have someone else take care of him, like waking up and seeing someone he does not know, and he has said that he is happy that we kept him home and we are there 24 hours taking care of him. We do have a nurse though that comes twice a day to take care of stuff that we can’t. But you are right, we should probably find a moment and a way to ask him, it is his life after all. And as long as he is conscious it does not feel right for us to make this decission for him.
thank you so much again
ACH2015
2007 Posts
Kessy

Thank you for your thoughts, and I too am sorry you and your family are going through this with your father.

There is no wrong or right here, and I agree 100% when you said "it is his life after all". Your father seems to be honest in his sharing with you with what he says about his and your situation. Doctor's can only give guidelines as to how long a person will go on, and both you and your father will make the decisions necessary here.You are supporting your father, and reinforce to him that you support and respect his decisions moving forward.

We as family naturally want to protect and keep our loved ones with us as long as we can, and the honesty you share as a family now will serve you all well. Our family did not talk about death either - prior to my fathers diagnosis and quick decline. It is something we all need to address, to understand and be honest with amongst the family. This way there are no regrets, no misunderstandings and some peace can come from knowing and understanding a persons final wishes.

Keep well and thank you for sharing.

ACH2015
Kuching
245 Posts
Hi Kessy‍ . My husband died of pancreatic cancer a year ago, and I have advanced lung cancer, so I am seeing this from both sides. And we are/were both the same age as your father.

My husband stopped eating completely 2 or 3 weeks before he died, and had no appetite for months before that, so the fact that your father is still hungry tells me he’s not ready to go yet. Is he in pain? By the fairly low dosage of morphine, I’m assuming not, or at least not so much as to make life unbearable. And he is still conscious and lucid, another sign that he has a ways to go yet. But I’m not a doctor, just going by personal experience, and everyone is different.

i think you need to break with your cultural traditions and talk to your father. He needs to decide whether he wants to keep living at this stage. He should be the one to decide, not the doctors. Good luck!
Kessy
5 Posts
Kuching‍ Hello, thank you so much for sharing. I also think he is not ready to go. He just asked us if we could give him his kindle so he can try to read a bit, he always loved it. And also if we can try to get him up on the wheelchair for a few minutes a day. So i think he still wants to live, even in this condition. We decided to keep giving him nutriotion as a family, at least for as long as he is conscious, we’ll take it day by day. Thank you so much again, i wish you well. 🙏🏻
Kuching
245 Posts
Kessy‍ Good for you, and good for him! You can treasure this extra time with him.
Many hugs.
Faye
217 Posts
Kessy‍ ...I’m so sorry for your dad’s diagnosis and prognosis but I want you to know that you and your family will never regret keeping your dad at home and providing the care he requires. There is no way to know the right or wrong way to do this just know you are doing the best you can. I am speaking as a daughter whose family chose to keep our dad at home until his death. That was definitely the hardest and the best thing I have ever done , absolutely no regrets.
My advice just do what makes him comfortable and at peace. Enjoy your days with him
Cynthia Mac
3080 Posts
Kessy‍ , my heart goes out to you. I’m strong, but I’m not sure I could be “you strong.”

I didn’t have the choice of keeping my father home (and again, I’m not sure I’d have had that strength.) Dad was admitted to hospital a month before he passed. Thanks to my mom, who had predeceased him, he had everything in place: directions for care, a will, and even documents advising which funeral home he wished us to use.

Having Directions for Care prepared in advance saves the family some of the decision making that you are currently wrestling with. Numerous times here on the site I’ve encouraged people to seek proper advice and get these documents prepared for themselves and others in the family. (I write this here more for people who are reading the forums, than for you, directly.)

Also for the benefit of others: although I’ve had no personal experience with it, I’ve heard exceptionally good things about hospice care, so for people who are struggling, this is another option.

Dad had a morphine pump near the end, too, but like ACH2015‍ ‘S dad, he wasn’t conscious at the end, so your situation is quite different, other than that. Watching Dad “waste away” in the 8 days after his directions for care were implemented was so very hard, and I think I have that in common with you at this point. It must be so much harder for you, though, because your dad is aware, where mine was not.

You are doing incredible work - this is caregiving at its highest good. I suppose my best suggestion to you is to try to find ways of having that “hard conversation,” really listen to the answer, and watch for signs/ signals from him.
Kessy
5 Posts
Cynthia Mac
thank you for your kind words, they give me and my family strength. We were “lucky” that we had the possibility to keep him home, suddenly we got surrounded by so many good people helping and supporting us. Reading all the personal stories here makes me think of how many people have to go through this in much more difficult conditions, so for that I am grateful.
unfortunately today has been a bad day, i would say the worse since this all started, but reading all your comments and advice makes me feel a little better. So thank you all
D1955
43 Posts
Kessy‍ ,
I am so glad you have found this site and it's supportive group of caring people. I had not found it back in 2008 when my father passed of Cancer of Unknown Origin.
His cancer was extremely painful but he had a fantastic Pain Management Doctor. She even made house calls.
He was on Dilaudid by injections but when she moved him to ‍ Ketamine he had to be admitted to hospital because that drug will slow your breathing down severely.
We talked to him a lot even if he seemed to be sleeping. When he could no longer drink we were given mouth sponges to moisten his lips.
Listen to your dad while he can talk, read or sing to him. Let him know you will be ok. I remember telling my dad it was ok to leave us, we would take care of each other. And we loved him so much.
It is hard to watch the one you love fade away, but the love they have for us gets to be held in our hearts forever.
Cynthia Mac
3080 Posts
Excellent point, D1955‍ . The nurses told us that hearing is about the last of the senses to leave, and that's an important thing to remember.

Two of my siblings started inappropriate (to me) conversations while we were with Dad near the end, and I shut them both down quickly, because of that!

When I ran out of words one day, I started singing to Dad, and I swear his mouth formed a partial smile...that's my story and I'm sticking to it!
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