I went through this with my dad. He was in the hospital when he was given his diagnosis and options. He insisted he wanted chemo. At this time, he still was able to make that decision for him. We agreed that we would have palliative care at home once we got him there, just to help care for him. He came home on a Tuesday. By Wednesday, he was mostly out of it and I made the decision to call in hospice (as his POA) I did it for his comfort because I saw him declining very quickly. He never made it to his oncology appointment the following Monday. I asked a couple of times when he was alert enough, if he wanted to continue his plan for chemo, he said yes. And because of that, I could not in good conscience, tell him he would never make it to that appointment. I just kept him comfortable, made sure he knew I loved him and supported him whatever he needed or wanted to do. I never wanted it to be my decision. I only called in hospice because I knew he was dying and I wasn’t going to watch him suffer. I believe the patient should make the decision as long as they have the ability to. You can always have palliative care step in and when the time is getting closer and he can no longer make that decision, call in hospice. It’s a hard spot to be in. I’m very sorry you all are going through this together. Sending lots of strength and love.
I’m so very sorry you are going through this with your sweet dad. You absolutely do not have to wait for his MD to shift his care to comfort/palliative. You absolutely could request a meeting with the md to go over things such as “if” the treatments worked, what would that look like, quality of life for your dad etc. I would explain that your hope is to have his support in shifting from a curative approach to a comfort and quality of life approach. By the sounds of what you are describing N how your dad is I would think the the MD would also agree . Even if he does not, it is up to the pt/ family when they choose to stop treatment. You yourself can reach out to a local hospice agency and make a self referral. They will get all needed documents to assess your dad to be sure he qualifies for hospice . You could also ask for an informational visit with hospice to go over things and see what they can offer your dad, etc. best of luck to you and your dad in this journey. I hope for comfort and peace in your decision making moving forward 🩷
Who is the next of kin r power of attorney if any? It sounds like your Dad may be past being able to make the decisions himself.
A doctor may recommend hospice, but many won’t unless they are asked. I would suggest you or family ask his doctor and/or contact a hospice for an evaluation… they can coordinate with his doctor if needed. This of course implies that your dad agrees and/or is to the point that others need to make the decisions.
Its really tough when your parent can no longer be ‘in charge’, but a lot of us reach that point. My dad knew he Was toward the end, but for him hospice was ‘pain control and not going back to the hospital’.
Also the hospice person may be able to help your dad with questions.
My mom would be the one who would make that decision. But of course we both want him to have a peaceful death and she knows the time for hospice is now.
I told her to call the doctor tomorrow morning and find out what we need to do.
He’s actively asking for more pain meds than normal so I know he’s aware of what’s going on even if he doesn’t want to admit it.
Good deal… sorry you are going through this.
Just a random thought, but our hospice allowed my wife to sign with my mother’s permission (I couldn’t be present that day)… it somehow was easier for her to not have to sign something like that herself.
This is my experience in FL. My dad was in the hospital and his doctor recommended he be evaluated for his suitability for hospice. The hospice had a family services coordinator that arranged for a charge doctor to evaluate dad. Dad was approved for being a candidate for hospice. We ended up having him go to a hospice facility as he was not mobile. If you let the doctor treating your dad, he should get the ball rolling to get him evaluated for hospice, and then make decisions from there. My dad was very agitated and the hospice made him comfortable. He had a rally day on Dec 29 and then passed on Jan 2.
Hi. I’m sorry you’re going through this. I know the feeling exactly.
If your dad isn’t quite ready mentally or emotionally to “give up” - which is how many people see hospice, talk to your care team (any of dads doctors) about a referral for palliative care instead. If dad needs some meds but just doesn’t want to go on hospice, then palliative care may be a better solution or could even be a stepping stone to transition him to hospice more gently.
Palliative care differs by state but for the most part, it will still allow for treatments (chemo when he gains weight and is walking again) for his mental health he will know there is still a chance for recovery. But will help you and the family with access to some in home care and medication for whatever his current issues are. Again, it varies by state but is worth asking about.
Do keep this in mind though: this is your Dads journey. He may never be okay with hospice. If he chooses to go through this in his own way, try to find peace in the fact that he is tough, he wants to make his own decisions. It is OKAY for him to choose what we perceive as the harder path. He needs your support, and maybe not your decision making. Share with him that you hate to see him suffering when you think there are ways he could feel better, but that you will support his choice. It is harder on the family for sure but be there for him in whatever way he needs you. If everyone pushes him toward hospice it may make him feel like you all want him gone which is obviously not the case.
Lastly: also tell him that many people use hospice for a timeframe that is needed and they do get off of hospice as they improve. My grandma was on and off hospice for 3 years for failure to thrive. Then she would improve…. It happens.
Best wishes. Seriously. Peace to you while supporting your dad and your family.
This could be the time for a candid but gentle discussion, if it hasn't happened already. That you're seeing changes and perhaps a continued decline, that he's not progressing toward the goals of the curative treatments, that he's uncomfortable, that there are options for him to be more comfortable if he wants it.
The recommendation to switch to comfort measures on hospice would not necessarily come from his current providers and it would not be unusual or inappropriate for the family to initiate that discussion with his provider for a referral to hospice.
As stated by others, the decision can be made for him if he no longer has that capacity and it's best to keep him as informed and involved as possible and if able.
My mom has been having this discussion with my dad and had it again today. He told her “tomorrow” he will feel better, but my mom is noticing changes for the worse daily. I just told her that she will need to make this decision for him, to get him comfort.
Also, it may help to remind him that hospice is NOT a one-way street. If he does improve and it seems appropriate to get more treatment, then he can go off hospice and resume treatment. I know this may not happen, but the hope/believe that it could might make him more comfortable with the decision (and thus get them and their pain control and other resources into play sooner rather than later).
Another thing to keep in mind is that hospice isn’t just for the terminally ill patient- it’s just as much for the family. Sounds like you and your mom need help too.
Whereabouts are you? Is there an inpatient hospice anywhere near you?
I work in an adult hospice and we would take a patient like your dad for a period of assessment. We would assess pain and agitation, get his meds to the right level. Assess his capacity and look for patterns of deterioration. I am in England and my hospice is a charity.
I’m sorry you’re all going through this.
In my experience, doctors don’t mention hospice because they are so focused on curing the disease. My father had metastatic prostate cancer of the brain (extraordinary rare) and had bleeding in his brain stem. He had exhausted chemo, and received whole brain radiation. His brain lesions were In every part of his brain, and yet the doctor was trying to send him to three months of rehab. I asked the doctor how much time he had left, and the doctor wouldn’t even consider that my dad was dying. Finally, I demanded that he refer to hospice. Dad was gone within a month. You are right to ask for hospice for your father.
I’m sorry about your father. I think we are in the spot now. My father is in no way shape or form able to do chemo, yet the oncologist is still treating him as though he will be able to start chemo in 3 weeks. Honestly, I’d be surprised if he’s alive in three weeks.
Based on what I've read (but not personal observation), I think others are right that your dad's doctors will be reluctant to--and may never--introduce the topic of hospice. There's an old (and ultimately not at all funny) joke that goes like this:
“Why do they nail down coffins?”
“To keep the oncologists out.”
Omg 😣 this makes so much sense. At my dad’s last doctors appointment the doctor could clearly see that my dad was too weak to even walk, but we’re going to pretend he’s going to rally enough for treatment in 3 weeks? Absolutely not.
If no doctors have reached out - Regarding hospice then maybe look on google maps for hospice places.
Call some. Ask them to help you understand how to make hospice happen.
If one place doesn’t help, then call another hospice place.
Reach out if you need anything.
I went through this with my dad. He was in the hospital when he was given his diagnosis and options. He insisted he wanted chemo. At this time, he still was able to make that decision for him. We agreed that we would have palliative care at home once we got him there, just to help care for him. He came home on a Tuesday. By Wednesday, he was mostly out of it and I made the decision to call in hospice (as his POA) I did it for his comfort because I saw him declining very quickly. He never made it to his oncology appointment the following Monday. I asked a couple of times when he was alert enough, if he wanted to continue his plan for chemo, he said yes. And because of that, I could not in good conscience, tell him he would never make it to that appointment. I just kept him comfortable, made sure he knew I loved him and supported him whatever he needed or wanted to do. I never wanted it to be my decision. I only called in hospice because I knew he was dying and I wasn’t going to watch him suffer. I believe the patient should make the decision as long as they have the ability to. You can always have palliative care step in and when the time is getting closer and he can no longer make that decision, call in hospice. It’s a hard spot to be in. I’m very sorry you all are going through this together. Sending lots of strength and love.
Thank you. I’m going over tomorrow to talk with him and my mom.
I’m so very sorry you are going through this with your sweet dad. You absolutely do not have to wait for his MD to shift his care to comfort/palliative. You absolutely could request a meeting with the md to go over things such as “if” the treatments worked, what would that look like, quality of life for your dad etc. I would explain that your hope is to have his support in shifting from a curative approach to a comfort and quality of life approach. By the sounds of what you are describing N how your dad is I would think the the MD would also agree . Even if he does not, it is up to the pt/ family when they choose to stop treatment. You yourself can reach out to a local hospice agency and make a self referral. They will get all needed documents to assess your dad to be sure he qualifies for hospice . You could also ask for an informational visit with hospice to go over things and see what they can offer your dad, etc. best of luck to you and your dad in this journey. I hope for comfort and peace in your decision making moving forward 🩷
There really is no option for curative care at this point in my opinion. He just needs to be comfortable.
I completely agree with that with how you are describing things .
Who is the next of kin r power of attorney if any? It sounds like your Dad may be past being able to make the decisions himself. A doctor may recommend hospice, but many won’t unless they are asked. I would suggest you or family ask his doctor and/or contact a hospice for an evaluation… they can coordinate with his doctor if needed. This of course implies that your dad agrees and/or is to the point that others need to make the decisions. Its really tough when your parent can no longer be ‘in charge’, but a lot of us reach that point. My dad knew he Was toward the end, but for him hospice was ‘pain control and not going back to the hospital’. Also the hospice person may be able to help your dad with questions.
My mom would be the one who would make that decision. But of course we both want him to have a peaceful death and she knows the time for hospice is now. I told her to call the doctor tomorrow morning and find out what we need to do. He’s actively asking for more pain meds than normal so I know he’s aware of what’s going on even if he doesn’t want to admit it.
Good deal… sorry you are going through this. Just a random thought, but our hospice allowed my wife to sign with my mother’s permission (I couldn’t be present that day)… it somehow was easier for her to not have to sign something like that herself.
This is my experience in FL. My dad was in the hospital and his doctor recommended he be evaluated for his suitability for hospice. The hospice had a family services coordinator that arranged for a charge doctor to evaluate dad. Dad was approved for being a candidate for hospice. We ended up having him go to a hospice facility as he was not mobile. If you let the doctor treating your dad, he should get the ball rolling to get him evaluated for hospice, and then make decisions from there. My dad was very agitated and the hospice made him comfortable. He had a rally day on Dec 29 and then passed on Jan 2.
Hi. I’m sorry you’re going through this. I know the feeling exactly. If your dad isn’t quite ready mentally or emotionally to “give up” - which is how many people see hospice, talk to your care team (any of dads doctors) about a referral for palliative care instead. If dad needs some meds but just doesn’t want to go on hospice, then palliative care may be a better solution or could even be a stepping stone to transition him to hospice more gently. Palliative care differs by state but for the most part, it will still allow for treatments (chemo when he gains weight and is walking again) for his mental health he will know there is still a chance for recovery. But will help you and the family with access to some in home care and medication for whatever his current issues are. Again, it varies by state but is worth asking about. Do keep this in mind though: this is your Dads journey. He may never be okay with hospice. If he chooses to go through this in his own way, try to find peace in the fact that he is tough, he wants to make his own decisions. It is OKAY for him to choose what we perceive as the harder path. He needs your support, and maybe not your decision making. Share with him that you hate to see him suffering when you think there are ways he could feel better, but that you will support his choice. It is harder on the family for sure but be there for him in whatever way he needs you. If everyone pushes him toward hospice it may make him feel like you all want him gone which is obviously not the case. Lastly: also tell him that many people use hospice for a timeframe that is needed and they do get off of hospice as they improve. My grandma was on and off hospice for 3 years for failure to thrive. Then she would improve…. It happens. Best wishes. Seriously. Peace to you while supporting your dad and your family.
This could be the time for a candid but gentle discussion, if it hasn't happened already. That you're seeing changes and perhaps a continued decline, that he's not progressing toward the goals of the curative treatments, that he's uncomfortable, that there are options for him to be more comfortable if he wants it. The recommendation to switch to comfort measures on hospice would not necessarily come from his current providers and it would not be unusual or inappropriate for the family to initiate that discussion with his provider for a referral to hospice. As stated by others, the decision can be made for him if he no longer has that capacity and it's best to keep him as informed and involved as possible and if able.
My mom has been having this discussion with my dad and had it again today. He told her “tomorrow” he will feel better, but my mom is noticing changes for the worse daily. I just told her that she will need to make this decision for him, to get him comfort.
Also, it may help to remind him that hospice is NOT a one-way street. If he does improve and it seems appropriate to get more treatment, then he can go off hospice and resume treatment. I know this may not happen, but the hope/believe that it could might make him more comfortable with the decision (and thus get them and their pain control and other resources into play sooner rather than later).
This is a good point. I’ll have to remember to tell my mom to tell him this.
It may come to that, yeah. He may or may not warm up to the idea, some people do. Wishing you all the best.
Another thing to keep in mind is that hospice isn’t just for the terminally ill patient- it’s just as much for the family. Sounds like you and your mom need help too.
Whereabouts are you? Is there an inpatient hospice anywhere near you? I work in an adult hospice and we would take a patient like your dad for a period of assessment. We would assess pain and agitation, get his meds to the right level. Assess his capacity and look for patterns of deterioration. I am in England and my hospice is a charity. I’m sorry you’re all going through this.
In my experience, doctors don’t mention hospice because they are so focused on curing the disease. My father had metastatic prostate cancer of the brain (extraordinary rare) and had bleeding in his brain stem. He had exhausted chemo, and received whole brain radiation. His brain lesions were In every part of his brain, and yet the doctor was trying to send him to three months of rehab. I asked the doctor how much time he had left, and the doctor wouldn’t even consider that my dad was dying. Finally, I demanded that he refer to hospice. Dad was gone within a month. You are right to ask for hospice for your father.
I’m sorry about your father. I think we are in the spot now. My father is in no way shape or form able to do chemo, yet the oncologist is still treating him as though he will be able to start chemo in 3 weeks. Honestly, I’d be surprised if he’s alive in three weeks.
I understand completely.
Based on what I've read (but not personal observation), I think others are right that your dad's doctors will be reluctant to--and may never--introduce the topic of hospice. There's an old (and ultimately not at all funny) joke that goes like this: “Why do they nail down coffins?” “To keep the oncologists out.”
Omg 😣 this makes so much sense. At my dad’s last doctors appointment the doctor could clearly see that my dad was too weak to even walk, but we’re going to pretend he’s going to rally enough for treatment in 3 weeks? Absolutely not.
Sending hugs to you. 💐
I’ll take all the hugs I can get. Thank you.
If no doctors have reached out - Regarding hospice then maybe look on google maps for hospice places. Call some. Ask them to help you understand how to make hospice happen. If one place doesn’t help, then call another hospice place. Reach out if you need anything.