Brother is paralysed and also has underlying conditions.He was recently diagnosed with severe heart failure. His left ventricle is damaged and he has an EFR of between 20 and 25 percent, though likely at the lower end of that.
He has been discharged into his nursing home with a Referral to the heart failure team.
Yesterday his nursing home called and said that his blood pressure/heart rate is still very unstable so they contacted his GP. He recommended that the blood pressure meds be withdrawn and my brother put on palliative care.
Brother is refusing. He is determined to continue the medicine and not go onto palliative care. So the home were contacting the GP to speak to him.
He hasn't yet.
Can he refuse palliative care? What happens now? I spoke to a cardiac nurse yesterday who advised that once he stops treatment and palliative care begins, in her experience things move very quickly.
I know its likely the best thing for him, but I'm just not ready to lose my brother.
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FrazzleRock
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What an awful situation, I'm so sorry.I'm surprised your brother's wishes aren't being taken into account. Can you call the Cardiologist's secretary and speak to them, or the GP on your brother's behalf? You will likely need permission.
I'm assuming there's more going on than what you're able to place here - but a doctor should be able to explain their decision for moving to palliative care.
What a horrendous time for you and brother so sorry to hear you are both in such a difficult and sad position. The NHS has a good leaflet covering Palliative care you can find it by googling it. It tells you who should be involved in decision making and what you can expect decision making wise.
Also British heart foundation nurses may be able to give you some information, give them a call. I have found them to be supportive, its worth a try. Its a lonely and frightening time for you and your brother, you need all the assistance you can get. Best wishes.
Dear FrazzleRock
Why a sad situation that you and your loved ones are in, you are not alone and this story is repeated time and time again.
It has to be all about your brother and his wishes, as long as he is able to fully understand what is happening and can express that, then you must follow his wishes as hard as that can be.
If his Dr has recommended palliative care is started then its a conversation that he must have had with your brother, maybe he didn't explain why he feels its the best for him, your brother has the rights to ask for a second opinion .
Your brother also maybe in shock from the news as a lot of us are when we receive devastating news about our health.
As his sister you must stand by his wishes and hopefully make him understand which direction is the best for the time he has left.
It is such a hard position to be in but also its a privileged one, your love shines through your post and that love will help you guide him, you and the rest of your loved ones.
Take care
Hello
I am so very sad to read this update and was hoping if you posted again it would read different
This must be so hard for you to deal with and I cannot even imagine what you are going through
I cannot add more than the replies you have had but I am sending all the positive vibes I can to give you and your brother the strength you need to get through such a difficult time
I hope you will keep us updated how you and your Brother are doing x
This seems to be one of those situations where there is no good answer. All I can offer is love and best wishes to all involved. You have not said how old your brother is. 90+ is different to say 40 ish.
I'm very sorry to hear about your brother, such a difficult situation. My husband has heart failure, he had to have hospice support earlier this year as he was quite poorly, thankfully he has improved. He has an ICD fitted & we have always known that at some point this will be turned off, but both his nurse & the hospice told to discuss between us at what point his medication is to be withdrawn. If your brothers medication is no longer able to keep his symptoms under control effectively, then to keep taking the meds could actually make things more difficult for him, but he should have had a discussion with his medical team as to why they want to stop his meds. Would you mind if I asked what EFR is? I know the term EF which is ejection fraction and is the measurement of how much blood is being pumped from the heart with each contraction. And I've heard of eGFR which is a measurement of your kidney function but EFR is new to me.
Turns out the GP recommended palliative care without even seeing him or assessing him. He just saw a vulnerable patient with DNACPR on his notes.
After a long afternoon of fighting/ discussion and to-ing and fro-ing the doctor came out to see DB and has no longer recommended that he be put on palliative care and the heart failure team are now coming to assess him on Sunday. It could well be that we get the same outcome tomorrow, but at least it will be based on clinical reasons rather than a DNR (which someone needs to remind his GP that it doesn't mean 'do not treat'.
It looks as though the hospital messed his discharge up as there was a lot of information missing from there such as him having MRSA while there (for which he still should have been being treated) to not continuing restricted fluid (as he was on restricted fluid in hospital but that wasn't in his handover or discharge notes). So, call me cynical, but given his discharge was done the day after they finally stabilised him, and they messed it up so badly its almost like they were in a rush to get the bed emptied.......
And one of the worst things is knowing that at some point he will have to have that discussion about palliative care, but because they've messed this up he won't ever trust it.
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Heart Failure Referral
