End Stage Heart Failure-Hospice?

[Anonymous]

My mother (86) is currently hospitalized (day 4) for treatment of end stage heart failure; is on oxygen 24/7, can’t eat well due to extreme bloating/internal abdominal swelling, fatigue and nausea. Diagnosed last year with cognitive impairment. She opted about a decade ago NOT to have a life-prolonging TAVR surgery.

When she was most recently admitted a physician told her that she really should have hospice plans in place because her current condition is a direct result of not having this surgery, to be expected.

Hearing those words deeply upset her: now my mom is insisting that she will have TAVR surgery ASAP to prolong her life.

Can anyone advise me on next steps? I was thinking palliative care and/or hospice care would be wise, and her recent statement to pursue surgery worries me. Would a doctor perform surgery on her at this point? Who in the hospital should I get involved to discuss pros and cons directly with her? My mom has always been in denial about aging/death/her limitations.

[Anonymous]

The cardiac surgeon who would do the surgery would be the one to discuss things with regarding the pros and cons of surgery. A palliative consult in the hospital would help discuss the next steps with how to manage this.

Is she able to make her own decisions? While I doubt she's a surgical candidate at this point, if a surgeon will do it and she's in denial and she's able to make her own decisions, there isn't much you can do about it.

[Anonymous]

My dad just had TAVR. The surgeon said he preforms it on 90 year olds, but sounds like it's too late for her. I'm sorry. I'd recommend hospice.

[Anonymous]

Cognitive impairment. Those with cognitive impairment will say all kinds of things. Op, move forward with hospice. It is the reasonable next step.

[Anonymous]

OP, do you have POA? If she is (appears to be) of sound mind you can't sign her up for anything. And hospice won't force itself on her no matter what you say.

If she is going to die and has a terrible quality of life, and if a surgeon will do the surgery, why not let that happen? if she dies due to the procedure she is just dying more quickly, and without all the heinousness of end of life palliative care.

[Anonymous]

Anonymous wrote:Cognitive impairment. Those with cognitive impairment will say all kinds of things. Op, move forward with hospice. It is the reasonable next step.

I agree and this terrifies me about the mind-change and the panic she must be feeling. I'm so sorry, OP. Respect her wishes from when she was of sound mind.

[Anonymous]

OP back. Thanks for the wise words.

I don’t have POA but my older sibling does. This sibling has always been very deferential towards our mother and tends to be in general highly agreeable.

Trying to coordinate an initial meeting with hospice (I have questions) then hope to loop
in sibling then parent.

[Anonymous]

Anonymous wrote:OP, do you have POA? If she is (appears to be) of sound mind you can't sign her up for anything. And hospice won't force itself on her no matter what you say.

If she is going to die and has a terrible quality of life, and if a surgeon will do the surgery, why not let that happen? if she dies due to the procedure she is just dying more quickly, and without all the heinousness of end of life palliative care.

I'm sorry to ask as I'm not familiar with this. I thought hospice was to be comforting and certainly less stressful than (unnecessary and expensive) surgery for little to no quality of life, and possible contraction of Covid, MRSA, etc.

Are you basically saying that it's more humane for her to die now (let's say not from the surgery but through euthanasia if that were possible). You are saying that in not so many words. That she should die in the surgery so why not euthanisia. ASking the hard questions because we are approaching this too.

[Anonymous]

OP, be on the lookout of those of like mind in the hospital. Doctors and their approach can vary. Sometimes talking with nurses helps. Talk with those who will listen who can guide your family on the path that feels right to you.

[Anonymous]

Anonymous wrote:

Anonymous wrote:OP, do you have POA? If she is (appears to be) of sound mind you can't sign her up for anything. And hospice won't force itself on her no matter what you say.

If she is going to die and has a terrible quality of life, and if a surgeon will do the surgery, why not let that happen? if she dies due to the procedure she is just dying more quickly, and without all the heinousness of end of life palliative care.

I'm sorry to ask as I'm not familiar with this. I thought hospice was to be comforting and certainly less stressful than (unnecessary and expensive) surgery for little to no quality of life, and possible contraction of Covid, MRSA, etc.

Are you basically saying that it's more humane for her to die now (let's say not from the surgery but through euthanasia if that were possible). You are saying that in not so many words. That she should die in the surgery so why not euthanisia. ASking the hard questions because we are approaching this too.

This is a hard topic to really discuss as most every case is different. But Hospice won't take a patient on unless there is good reason to believe the patient only has 6 or less months to live. That means giving them drugs. Which means they become bed ridden. Which means you have to have more and more care. This is just my assessment from having watched and lived this with a parent, but I believe many elderly end up dying of an untreated UTI.

What I don't understand from yours (or OP, if this isn't OP) is how with it the mom is, how much pain. When my parent was interviewed for hospice care, he nearly didn't qualify because he wasn't in horrible pain and wasn't obviously at the end of his life.

OP, is your mom bedridden? I suggested the surgery if someone would do it, because yes, if it extends her life AND quality of life, great. I also am assuming insurance will pay for this. If not, then no, I wouldn't spend money on this until your mom has plenty.

But if money is not the issue, and she gets the surgery and then dies due to the procedure, you gave her hope going into the surgery, and then a faster death. My parent lingered. And it was a horrible way to go.

You might have to get generic info from Hospice since you don't have the medical POA or any POA. And also talk to the doctor if you can. But most won't talk to you about your mother's case if you don't have medical POA.

Sorry you're going through this. I know it is hard.

[Anonymous]

Also, I said this before, but it will be hard to force her into Hospice if she doesn't want it.

[Anonymous]

Your mom is in the hospital, ask them to have a surgical consult for a TAVR. The surgeon who evaluates your parent is able to take all those issues into account. He or she should be able to say whether or not she remains a candidate for surgery or not. Your mom’s symptoms are very consistent with poorly controlled heart failure and obviously exacerbated by her valve problem. I am suggesting you get more information while she is in the hospital to help make a decision with her on the best next steps. And give her and the rest of the family some time to process where she is regarding remaining time.

[Anonymous]

I agree with the poster who suggested talking to the surgeon and seeing whether or not she’s a candidate. She may not be - but my parent had heart surgery at 91 and it’s now 2.5 years later and she’s fine. At the time, the doctor told us she had a 15-20% chance of dying from the surgery. Ask what the odds are, what can go wrong, what are the best possible outcomes (it may no longer be possible to get her to a level that makes any sense).

[Anonymous]

Anonymous wrote:I agree with the poster who suggested talking to the surgeon and seeing whether or not she’s a candidate. She may not be - but my parent had heart surgery at 91 and it’s now 2.5 years later and she’s fine. At the time, the doctor told us she had a 15-20% chance of dying from the surgery. Ask what the odds are, what can go wrong, what are the best possible outcomes (it may no longer be possible to get her to a level that makes any sense).

Just to clarify, my parent has TAVR surgery. I didn’t realize that’s what it was called until I looked it up but it was heart valve surgery on two valves through a catheter. She was in a really good hospital and she was there several weeks but she’s fine now.

[Anonymous]

Went through this with my dad. He had valve replacement surgery (open heart, not TAVR) at 87 and lived until a week after his 90th birthday. His CHF was not as advanced as your mother's appears to be.

Even if your mother were approved for surgery, it is not an easy recovery. My dad was in the hospital for 2 weeks after the surgery due to a complication, got hospital psychosis for several weeks, needed rehab in a hospital setting after the surgery, and then had to go to outpatient cardiac rehab for 6 months after coming home. At their age, all the time spent in hospitals just makes them weaker and it can take a while to regain whatever strength they had before surgery. And it's not like he was magically better after the surgery. It may have extended his life for a year or two, but it didn't improve the quality of his life.

Regarding hospice, my dad received hospice services the last two months of his life in his assisted living facility. It was great, actually. When he needed oxygen or other support, it was delivered within several hours. A hospice nurse came to visit twice a week and he enjoyed the visits because she was young, pretty, and very attentive. A doctor checked in regularly. It was free to us because he was on Medicare. I had the ability to call or text his nurse to get any of my questions answered, which was a great comfort to me. When done right, hospice is a good thing.