DB refusing palliative care. What happens now (heart failure)

[helpmehelpmybrother]

DB 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 He recommended that the blood pressure meds be withdrawn and my brother put on palliative care.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.

I’m sorry OP that sounds terribly difficult. I’m afraid I don’t know the answers but do any of the cardiac charities run a specialist helpline? I know some charities run specialist nurse led helplines for example - they may be worth contacting.

So sorry to hear about your brother. Possibly the British heart foundation or Marie Curie may be good places to look for information. Your local hospice may also be able to offer some support as hospice care includes support for carers and families.

Sending you a hug 💐

Oh am so sorry you are going through this OP. How old is your DB? Surely if he doesn't consent they can't forcibly refuse medication? Informed consent and all that? How horrific for your brother, and of course you.
Sending strength and prayers both your ways

Bluntly he can continue his meds of course but he will still die - and probably feel worse whilst dying 😢
The really sad thing and I don’t know if you can do anything - is he’s in denial and not ready to go - so can’t say what he needs to etc.

That’s awful, I actually didn’t even realise a gp could make that decision I would have thought it would be the heart failure team. What a horrible situation. I think it’s your brothers choice though!

So sorry OP.

I didn't know that GPS were in the position to suggest those sorts of things either. How long is it until he sees the heart team? Could this be sped up given the circumstances, or a phone call be arranged?

That's what I thought too @Yummymummy2020
Just called his home and apparently the doctor is coming out today. He is also apparently furious at the DNR in place in his file.
As his next of kin I was asked about this while he was in hospital recently and I agreed to it after a conversation with the doctor in the hospital, thinking that's what he would have wanted, but it looks like I was wrong. So, now I'm scared he's going to spend what time he has left hating me. God I actually feel sick.

What a difficult situation. Remember the DNR is a medical team decision - they discuss with the family but it’s the medical team’s decision that resuscitation is not in someone’s best interest. It’s not on you.

I'm so sorry to read this, @helpmehelpmybrother. Does your brother need to know about your input to the DNR decision (which you made with his best interests at heart)? Could you not now quickly contact his GP to say you clearly made a mistake about this, given your brother's reaction in his current situation, and ask if it is possible to have the DNR removed from his file?

I think that the GP actually can withdraw medication, and can’t be forced to continue to prescribe inappropriate medication. A second opinion is a possibility, or to contact the cardiac team for advice.

I hope that the GP will be compassionate with your DB and will be able to agree a way forward, rather than being authoritarian about it. But it really is a medical decision and I have seen treatment withdrawn against patients’ wishes.

Please don’t worry about your input into the DNR. It would be there anyway. It’s again a medical decision. It’s good practice to discuss it with patient and family but this doesn’t always happen. They won’t resuscitate in cases where it’s unlikely to work and will cause further suffering.

I'm so sorry to hear this OP
Don't worry about your input in the DNR. The basis for the DNR is because the medical staff will have assessed that your DB is unlikely to survive a resuscitation attempt and have advised you of this.

Hopefully the GP can have a good conversation with your DB today and they can agree the best way to go from here. Your DB has the right to be consulted and involved in decisions.
It would seem sensible to involve the heart failure team asap

If he has a referral to the heart failure team and hasn't seen them yet then push hard for that. GPs can't be experts in everything and the heart failure team will naturally n in ow a lot more about the management of heart failure.

its obviously a complicated case with other things going on but I agree that you could usefully phone the BHF who have a helpline who can help you understand the sorts of questions to ask and the situation. Can your brother also be assisted to speak to them himself? He is clearly an active player in his own life and why should he not be?

People can live with heart failure for a long while, depending on their individual situation. This may or may not be realistic for your brother but letting him go before all options have been explored seems a shame.

Poor frightened man.
You don’t ‘go into’ palliation. It is about managing his symptoms to increase the quantity and quality of his remaining life. You can consent to not having treatment but you can’t insist treatment is provided, if it’s not appropriate in a particular situation.
DNACPR is a clinical decision and you don’t consent - best practice is a discussion and consensus but it remains a clinical decision and it does sound like it would be futile and undignified to attempt to resuscitate in the event of his heart stopping. That doesn’t mean there is no treatment. He should have a ReSPECT form completed, with a discussion about his wishes if he becomes more unwell - what treatments he would want to be considered and whether he’d want to go to hospital.
Sounds like there wasn’t enough time given for a proper conversation. Hopefully today will reassure him.

I'm so sorry you're having to go through this. My dad was furious about the DNR and terrified at the involvement of the palliative team. Nothing we said made a difference, it just made him angry and convinced we wanted to be rid of him as a "burden". That couldn't be further from the truth, but I suppose he saw the reality of what his care involved and put two and two together...reaching 5!

Thankfully one of the nursing team took the time to sit with dad and explain that palliative care wasn't about giving up, it was about making sure he had the best available options to be comfortable and to allow him to outline what he was happy with in terms of intervention. She also confirmed gently with him that the DNR was only a piece of paper and neither paramedics nor doctors would attempt to resuscitate someone who was so incredibly ill and likely to be substantially worse if they made it through resuscitation.

I really hope your brother has someone compassionate on his medical team that will sit and talk through things properly to outline the same. There aren't many choices left, but engaging with the palliative team is one thing he can still control. They really do listen and do what's best for the patient in our experience.

Sending you extra strength to get you through what's next 💐

He sounds angry and scared and you are probably an easy target to take it out on. Try to let it roll off you. Regarding the DNR you did what you thought best on the advice of the doctors. Just explain that to him.

Palliative is a scary word. Many people can live years along with Palliative care. It's just that they have the most knowledge and experience. The Palliative nurses know everything about pain relief. I've listened to the GP questioning the nurse for advice and saying afterwards what great advice that was and she would not have thought of that drug combination.

It's just about making is life at this moment as pain free as possible and that "moment" could last days, months or years.

Just be patient and I'm sure he will calm down. But at the end of the day, he's an adult and if he wants no intervention then he had that right as painful as it may be for you to watch, that is his right. Tell him you will support him whatever he decides.

I hope he has an easy passage and isn't suffering too much. Take things easy and ask for help/counselling if you need it.

Can I share this TED talk with you? Although a lot of it is about end of life care, this man does say that palliative care isn't restricted to end of life care. Also he views end of life in an interesting way.

Your brother sounds scared and in denial. I think he needs time to process and lots of love at the moment. It must be such a difficult time for you too, take care.

Oh darn, I think it's the wrong link, hold on.

This one

So, after further discussion with the nursing staff at his home, it appears that they contacted the GP to review DB due to his heart rate.
They asked questions about a reduced fluid intake and various other treatments. The GP basically just said that as there's a DNA CPR in place then he should have the blood pressure medication removed and go onto palliative care.
The GP hasn't seen him, examined him or even spoken to him.
The home have been trying to get the GP to come see him and all they have been told is "we'll try and call you back to arrange an appointment". DB is stressed out, which is not what he needs with severe heart failure.
I actually feel livid that this decision has been made without even speaking to him.

@helpmehelpmybrother if you are your DBS next of kin then sounds like you need to advocate for him.

Can you speak to your DB directly? If so, get his permission for you to phone the GP. Let the Practice know you and DB are unhappy with his current lack of treatment and you want GP to ring you back and explain exactly what the plan is and the clinical decision making behind that plan.

Good luck

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 looks as though the hospital fucked 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.......

Its just been a complete clusterfuck, causing a man with a weak heart a lot of unnecessary stress.

Oh jeez @helpmehelpmybrother that sounds a total clusterfuck!
Just as well your DB has you there for him, and the nursing home sound fairly on the ball too.

I I hope the heart failure team are able to help further. Hope your DB is feeling bit better about the situation than he was this morning

I’m glad you are in a slightly better situation having read your last message. I read your first post and told you when my Mum was diagnosed with heart failure it was at 18% capacity, now it’s about 46%.

Having a DNR usually mean no extraordinary measures not withdrawal of meds and food/water. His DNA would have been put in place even if you didn’t consent because CPR rarely works in most cases and even when it does the patient is often physically a lot worse afterwards.

Pumping Marvellous is a brilliant source of information for heart failure - I highly recommend starting there for information.