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Hi all, have a question about why the palliative care team at the hospital my FIL is at, would want to meet with his kids. Why would they want a meeting and what should we expect at it? I’m trying to stop putting the cart before the horse but it’s so hard being in the middle of my husband’s health crisis! What I know about my FILs health status is, he has stage 0 multiple myloma that has triggered a very rare condition that has made it very difficult for him to speak and swallow. He has a feeding tube now. He’s been hospitalized since early December with fluid in his lungs and low blood pressure. He has started chemo to treat the rare condition. He’s supposed to go to rehab but apparently they haven’t been able to find him a bed. He’s refusing PT in the hospital too so I don’t know if they’ve nixed rehab. I don’t know if it’s because he’s on medi-cal and there are no medi-cal beds available OR if they are trying to keep him close to the hospital because of the chemo, but he’s transfer to rehab keeps getting delayed. They already had a meeting to discuss POA (and maybe other things, I don’t know because my husband didn’t go). From what I’ve gathered, palliative care teams meet with the patient to set up a treatment plan and it’s based on what the patient wants and that family who will be taking care of the patient should be attend. So that last part has me freaking out! Here’s where i put the cart before the horse. Surely my husband’s brother isn’t expecting the 3 of them to become their dads caregiver? Is palliative care assuming we will all be involved? It’s my BIL that is telling my husband that the team wants to meet with them all by the way. My husband’s MRI is this afternoon and then much to our surprise, he has an appointment with the surgeon on Monday!!! We just got that phone call this morning. We expected a much slower road to surgery so this is good news on that end. Anyway there is no way we can be of assistance when it comes by FIL. My husband’s career is on the line and he is facing a long recovery after surgery. He will have to rest, go through physical therapy and focus on that. We won’t be available to take my FIL to his appointments, or go over there to care for him. To put it in perspective, he lives with my BIL in another county about 35 minutes east of us. The hospital he is at and where he will get chemo at is 30 minutes west of us. Not counting traffic. My SIL is also wanting him to go to Palo Alto VA for care and that is a good 90 minutes north of us not counting traffic. We cannot drive him all over Northern California to all his appointments. My SIL, BIL and their spouses work also. So I know they will think it would easiest for us to be his chauffeur. I am starting worry about the purpose of this appointment and what the palliative care is going to expect from the family? I hope my husband doesn’t feel pressured or obligated to do anything.

I'm unsure why the hospital staff wants to put your FIL on palliative care when his cancer is stage 0. Usually, the hospital staff will ask about putting a patient on palliative care when they think the patient has less than six months to live.

I'm also on Medi-Cal. I was hospitalized a few times at the Santa Clara Valley Medical Hospital down in San Jose in 2015 and 2016. As soon as the staff gets my vitals under control, they want me out of there as soon as possible. It doesn't matter that I'm always in a lot of pain. They want me to go home because I'm on immune suppressants, which suppress the immune system, making it easier for me to get an infection that can become life-threatening.

People with multiple myloma get infections easily. They are five times more likely to get an infection, and they have a harder time fighting the infection. That might be why the hospital staff wants him to go home even though he still needs a feeding tube.

A nursing home is also not a good idea for a patient who is at risk for getting infections either.

It's unfortunate that your husband is having back issues right now.
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worriedinCali Jan 27, 2019
i think you are talking about hospice? Hospice is not palliative care, and is called in when the patient has 6 months to live. Palliative care is a bit different, it’s not end of life care, it’s care to relief the symptoms. He’s been in pain for a few years and no one can tell him why. The doctors in Texas said the pain is not being caused by the doctors. So he needs pain management in addition to treatment for the cancer.

A nursing home may not be ideal for someone prone to infections but it is where he needs to be. He wouldn’t take care of himself before he got the feeding tube and now he can’t take care of himself after getting it. He’s in worse condition now after being in the hospital almost 2 months. I can see why they want him out, it’s been nearly 2 months and they aren’t exactly a long term care facility. He’s also not doing what he needs to do to get out of there and I understand that. I think he is depressed and I don’t know if that has been addressed.
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Glad to hear your husband spoke up and said NH.

What is wrong with this picture?
Chest tube that a qualified facility doesn't want the responsibility of, so let's send him to his unqualified kids! Yea, that sounds like a brilliant idea, let's have a family meeting and pressure those poor unsuspecting kids! sheesh!

I hope you get good news Monday.
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worriedinCali Jan 27, 2019
Thank you! And right? How crazy is it that they want to send him HOME where no one is available during the day, when a nursing home won’t even take him? Maybe they mistakenly think one of his kids is a doctor LOL! A feeding tube is bad enough, someone has to be trained for that. But a chest tube? What are they thinking?
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So the meeting was today and I am starting to feel like I have a 6th sense. My gut feelings were entirely correct but the purpose of the meeting was to get my husband and his siblings to agree to bring their dad home! It is the hospital wanting his kids to take him home and be his caregivers. I also had a strong feeling that my husband didn’t really need to be there and I was right. It’s not that I didn’t want him there, I am just concerned with HIS well-being. The 30 minute drive to the hospital is very hard on his back and then he has to walk quite a ways from the parking lot to his dads room. And then drive back. I offered to drive him and hang out in the parking lot with the kids since the hospital forbids kids under 14 but he said he was ok to drive.

Anyway I found out that my FIL has a tube in his chest to help with the fluid build up. And the hospital wants to send him home with it! No nursing home will take him because of it either. I don’t know what my husband’s siblings wanted or were agreeable to but my husband was clear that FIL needs to go to a nursing home. Whether it’s short term or long term is up in the air. My husband says if he gets healthy enough maybe he could come home. He said the meeting was a total waste of time. BUT that his dad wanted them all there, so I am glad he went. He’s also been on chemo for 3 weeks.

i just hope hubby communicated with his dad and siblings about his health issues and let them know that he’ll probably be having surgery very soon and not to rely on him to be available for anything. I already have a hunch that after he has surgery, things will come up and they try to guilt trip him or make it sound like he needs to be present or that he dad wants him there. And that’s when I put my foot down. The doctor told us 3 years ago when he was told to have surgery that recovery this time will be much harder this time around. And since his back has gotten worse since then, I expect the surgery to be more than what they told us 3 years ago.

Anyway thank you all for your input and your support.
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I would have a heart to heart with my hubby and make sure we were on the same page.

It sounds like FIL has made some decisions and would like to have the palliative care representative help him explain what is going to happen based on his wishes.

A low prognosis for recovery to a reasonably decent life is a hard pill to swallow and he probably wants them to answer any hard questions about his health and wishes.

Good news about your husband, truly unfortunate that all of this is happening at once. Encourage him and remind him no guilt.

Here's to a good outcome for all of these trials. 🙏
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worriedinCali Jan 26, 2019
Thank you so much! We are definitely on the same page. I questioned whether it was even necessary for him to be there but I kept that to myself, I didn’t want to upset him because I know this is difficult.
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When I went to the pallitive care meeting, it was informational and a Q&A. They made sure the patients advanced directive wishes were known and DNR was signed. They were able to pick up costs of breathing treatment medications and the machine. They could get a nurse in weekly to check the patient and set up meds. A nurse practioner was on call for pain management and doctor visits outside the home were optional. The family didn't go for it and the patient didn't get the care deserved.
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I don't think the people running this meeting will be expecting any specific level of assistant from every family member.

I think it's more about talking about the health issue, what the patient wants as far as "do everything" vs "keep me comfortable" and everything in between. I think the focus of palliative care is more on comfort than on trying to cure or treat a life-threatening/shortening illness. I think it is similar to hospice. I also think there are many options and choices to make, depending on what your FILs wishes are.

You and your husband need to focus foremost on his own health crisis and once that's addressed, see if you have anything left over for FIL. Hubby has to come first.
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worriedinCali Jan 25, 2019
Thank you, that’s what I figured. I also wondered if it was to update us all on his situation. My BIL was put in charge but basically waits around for the hospital to come to him, he doesn’t ask any any questions which is kind of frustrating. I don’t know why would agree to and pull his singalongs together for a meeting and not ask for details. Palliative care has already been involved and met with FIL so it sounds like this going to be regarding the care plan, talking about what he wants and what they can do for him. Thank you again.
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Just decide beforehand that nothing needs to be set in stone during the meeting, no harm will be done by allowing everyone 24 hours to think about what needs to be done.
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worriedinCali Jan 25, 2019
That’s exactly what I was thinking. As well as gently reminding hubby that he will be unavailable to help until further notice and needs to communicate that with his siblings.
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