AIBU - DNR

[Upsideclown]

I am so incredibly torn about this and I could really use some advice from people who have been in this boat.

My mum has untreatable stage 4 cancer. Has Been stable for a few months but is very unwell at the moment. Her palliative team have stepped down support as she has been doing really well. There's a chance that her current illness is related to medication side effects rather than her actual cancer, which has responded well to palliative treatment and should give her some more time. This is being investigated.
When she was admitted to hospital, a lovely A&E doctor asked if she had any long term health plans, and if so did she want to discuss them. She said she didn't, but she would like the doctor to discuss this with me as she finds this overwhelming (she did not realise he was asking about DNR but i think she did realise he was referring to end of life care).

I spoke with the doctor who explained that my mums health will continue to deteriorate and that it is seriously affecting her heart. As a result, it may be that her heart fails before the cancer actually runs its course - but he did not expect this to be imminent, it's just something we need to be cognisant of moving forwards as she gets weaker.

I am somewhat aware of how traumatic resus can be, especially for someone with a serious heart condition brought on by T4 cancer who is already incredibly frail. I'm currently pregnant with my first child, one week away from giving birth. My dad is disabled and we have a tiny family, so all of the heavy lifting for mums care has fallen to me (I've been more than happy to do this but I'm aware j will need to take a step back very soon).

I agreed with the doctor that I don't think CPR would be in mums best interests but I said I don't know how she would feel. I asked if I should discuss this eith her, and he said no, don't distress her.

The next evening, another doctor outright asked her if she wanted to be resuscitated should she need to, and she was quite alarmed and said of course she does.

She has full capacity and I would of course, always honour her wishes, however I'm.aware that a doctor can put a DNR in place without consent if they feel it is in the best interests of the patient.

Has anyone been through this before and could you give me any idea of how to broach this with mum (and dad, as I've still not told him as he's a mess at the moment), or whether I should just keep quiet entirely? I feel really lost and so worried about my poor mum. When I'm having the baby she won't have anyone to advocate for her at all and I'm so frightened about what will happen.

She has stated her preference, so you go with that.

That isn’t the question and you don’t just resuscitate someone because it’s their preference. It’s already been said in the OP that it’s a medical decision.

She has stated her preference, the doctor can over-ride her if he thinks it's in her best interests - I'd leave it at that.

I think this is about someone - not necessarily you - discussing with your mum exactly what CPR means in her situation. Far too many people have an image of it based on TV shows etc where resus can give semi-miraculous results whereas it sounds like for your mum, sadly, they’re saying it would very likely be futile. If it wouldn’t be offered for medical reasons then that’s for her medical team to discuss and explain I think - not fair to pass it on to you. But it’s likely that if she understands the futility of the process for her she won’t want it, it’s just making sure she understands what it means. For example I’ve looked after people who want to be resuscitated but don’t want to ever go into hospital again without realising the incompatibility of those two wishes.

also sending love to you - this is such a hard time especially when heavily pregnant, be sure to look after yourself as well.

Yes she’s said her preference so I would think it’s most fair to go with that, over all else

My thoughts are with you and sending you a great big virtual hug x

I honestly don't think most people realise just what catastrophic injuries can result from CPR especially in the elderly. Broken ribs, damaged organs, skin trauma etc.
We have discussed this at length with my elderly (87) parents and they have DNR's in place and trying to get living will's registered with GP but they are pushing back.
Despite this Dad said the other day what is he supposed to do if he comes in and Mum has collapsed. Does he just do nothing? He's first aid trained so knows what to do and obviously prepared to completely override Mum's wishes. I told him he would need to prioritise calling an ambulance but he then started getting cross about how long it would take to come.
DNR's and No Treatment plans are all very well in practice but in reality it's really hard to let go.
I think you might need to have another conversation with your Mum about the consequences of invasive resuscitation in view of her somewhat limited life expectancy. If you can't do this then you will just have to leave all the decisions to the Medics.

As mentioned, the doctor will make the ultimate decision.
But I know lots of people who are medics and nurses, and not one of them would challenge a DNR status for a relative. I am told that resuscitation pretty much always fails, and is absolutely brutal. The kindest thing you can do for your mother is to insist on a DNR note on her records.

I'm sorry this is all happening at a stressful time for you, OP.

But your mum has now clearly stated a wish and i think it is in all of your interests, as well as other people facing the same issue, to first of all make sure that there is no DNR in her notes. If necessary write in felt tip on her chest "i wish for CPR" (maybe not really but make sure all the medical staff know.

But i think you need to talk to both parents about DNR, what CPR can mean, and how a peaceful dignified end may be better for everyone. And then proceed with caution but according to their wishes.

I've had to try to resuscitate terminally ill people and it's absolutely horrendous for all involved. I would totally urge you to try to talk with your mum or support the doctor if they decide to put a DNAR in place regardless.

Does she realise what resus can entail?
An elderly neighbour of ours was resuscitated after his 2nd heart attack, but he told me that the after-effects were so painful (presumably cracked ribs) that he wished they’d just let him die.
He did in fact die a very few months later anyway.

I think this too, be her champion for her preference but if you're overruled by a doctor there's not much you can do and in your heart you will know you tried.

Sending you hugs..
This is a tough q. My parent with early stage dementia was asked the same going into a nursing home and in a fluster said the same as your mum. Yet I know their actual intentions are not to be resuscitated. They’ve always said as much and they’re too frail to survive it. Now the dementia has progressed we can’t have that conversation again.

Do you have health POA? I think your mum gave you permission to answer this for her when she asked them to talk to you but got flustered when they brought it up with her.m instead.

Either way you’re going to need to talk to her again about this before her health deteriorates to the point she can’t answer.

What a difficult situation.

I think the responsibility for discussing this with your mum lies with the doctors. I wonder if your mum understands that if she has a cardiac arrest it will likely be caused by heart failure which reduces the chance of successful resuscitation.

She has stated a preference but for meaningful consent to treatment she needs to be informed about what that treatment entails and the likelihood of a successful outcome.

If the doctors feel that such a conversation would be distressing and overwhelming for your mum then they need their decisions to be guided by evidence and best practice.

We had this discussion with the doctors and I was asked if my person would want to be resuscitated. I said yes. (They would have).

A week or two later they told me they wouldn’t resuscitate if the heart stopped as would no longer be considered worthwhile. (Worthwhile wasn’t the word used but can’t think of a suitable one)

so basically there will become a point when the decision is in the doctors hands and they will most likely tell you that they won’t be resuscitating.

please don’t stress about it too much as it will likely soon be out of your hands as it was for me. It’s a bloody awful time and I can’t imagine having to go through all of that when heavily pregnant too. Xx

did she have hospice involved before or was it a hospital based palliative care team?if she has never had support from the hospice then I would strongly advise a referral as this is exactly the scenario that they can support a person with, our hospice had a document that patients could go through with their relatives or with staff which would allow them to express their wishes about what would happen in the future . At the moment ,as you say, she has been stable and her symptoms may be reversible if it’s down to meds rather than cancer progression, so she has every right to state she wants resus as long as she understands this can’t be a given. I think you just have to be honest and say to her you are worried that you aren’t going to be able to advocate for her and just gently explore what she would want to happen if she became very unwell….some palliative care people will always choose every life extending option but others come to a realisation that they may choose to be cared for in a different way,it’s by having those gentle conversations now ,whilst she is able to,that you are going to best support her in the future.

First of all I am sorry to hear about your mum and can empathise how difficult and stressful it must be. I think I would start by acknowledging what the second doctor had said and asking if she wanted to talk about what he had asked and how it made her feel. It may well have been a complete shock and not something she had really thought about. You may both need sometime to process.
In a similar situation with my mum I would have been comfortable agreeing to a DNR until she clearly said she would want to be resuscitated. I supported her with the decision and did not have the discussion about how brutal CPR could be, it just didn't feel appropriate. In the event she did change her mind as her illness progressed - she felt it was time and a DNR was put in place with her consent. She passed a lay in her sleep a few weeks later so the issue didn't arise.

Thank you all so much.

Funnily enough, only a few weeks ago mum.and I were talking about how horrific resus is (think there was something on telly about it) and when I explained how invasive and painful it is and how few people survive, she was really shocked. I can only imagine that, as PP said, she was flustered and wasn't thinking of this. She very much wants to be here and to survive as long as she can.

I didn't mention but she does now have heart failure, which would make CPR attempts (if she received them) even less likely to be successful.

I'm stuck in a hard place - on one hand, I want my mum to consent with full understanding of what CPR is, and on the other I am terrified of her understanding, still consenting to it l, being resuscitated and then living in even greater pain than she already is, following a massively traumatic medical intervention. My mum is my heart, and I would honestly rather she have as peaceful a death as possible as she is in so.much pain and is fighting so hard, I don't want her death to be the same.

It's hard as well re: me/doctors explaining. Really often, she just can't follow what doctors are saying to her and i kind of have to put it into terms she will understand. Even lovely ones use terminology she isn't familiar with, or will speak too quickly for her to take things in. I do not want to be the one to discuss this with her, but I don't know whether a doctor would be able to explain it effectively/sensitively enough not to scare her.

I'm just so torn and feel so alone.

This is long, and I'm sorry if I crossposted. I'm so sorry that you're in this situation OP. It is a really hard one. I say that as someone whose parents are now both dead and also as an HCP.

When my parents were at hospital (on their last admissions), I knew that both were v poorly, and I knew (from experience of working with patients who had similar issues), that resuscitation would be futile. In both their cases, their underlying/presenting problems were not fixable and those problems could/would potentially affect or stop their hearts from beating.

Before their admissions, they were fit, healthy people (one was in their 70's, the other in their 80's): unfortunately they each became hospitalised because of an acute incident (cancer in one case, that was diagnosed just hours before death, and a brain haemorrhage in the other case secondary to an unwitnessed fall). If resuscitation could have fixed their problems and bought them back to their baseline, prior to admission, I would have been all for it. Because I knew that it wouldn't, that it would be futile (and at best maybe give them a few more days, if successful), I spoke to their doctors about a DNAR. I think the doctors were a little surprised that I broached it, but as their named NOK, and having known their wishes (we'd often speak about things like this as a family), and also having the experience through work of knowing what resuscitation can/can't do (and the chances of success etc), I spoke up. I didn't feel great doing it, and I know it is a consultant/registrar decision, but I also wanted to ensure that my parents had a comfortable and dignified passing. Which is what they wanted and what they did have.

Having the DNAR in place did not mean that my parents didn't get full treatment - the doctors did all they could to help treat them. But it did mean that when their bodies gave up and there were no further options available, they were made comfortable, given appropriate medications for symptom control and died peacefully.

Should you broach it with your parents? Maybe not. The doctors will be doing all they can currently for your mum at this time (whether she has a DNAR in place or not). If they feel that palliation is appropriate, they will speak to you about this. If you want to PM me, feel free. Wishing you all the best and lots of strength xxx

As a nurse who cares for pallative patients and someone who's dad died from cancer. I believe some people need hope and cannot accept how ill they are. They need the hope.

For now I would support your mum's wishes and make the best of time you have. There will be a time to discuss DNACPR in future with her pallative care team and they will be able to provide you and her with support.

She can also contract her GP or pallative care team to complete a RESPECT form, which is document outlining her wishes. When her wishes change so can the respect form.

Hope this helps

Lots of things could happen and change in this situation OP, I feel like you may have fixated all of your very understandable anxiety on this one point, but it's just one fairly unlikely scenario out of all the possible ways your mum's cancer could progress. I wonder if it took your mum by surprise when the doctor mentioned it and she may have a rethink when she has a chance to reflect.

In the worst case scenario resuscitation is attempted, the most likely outcome - by a huge margin - is that the resuscitation will fail. Sadly I have experienced this with a relative of mine who had a failed resuscitation in hospital (no DNR in place as they were not expected to die). When it happens to someone you love it is not nice to hear about it, but your mum will not suffer for a long period of time if they do this. My relative was unconscious within seconds when their heart stopped and almost certainly knew nothing about the attempted resuscitation. I struggled with how brutal my relative's death felt to me and it's not what I'd have chosen, but they would have died anyway, and in a sense they got the death they wanted, in that everything was tried to save them and it didn't work.

Agree. My Mum had a DNR for more than 2 years before she actually died (she was 93 when she passed). It was explained to her exactly what it meant - that the DNR only applied to say, her heart stopping, and wouldn't mean that she wouldn't get other forms of care - like antibiotics for a chest infection. She had heart failure anyway and had for several years before this. It was also explained to her that the damage if Resuscitation was required could be high - broken ribs possibly etc and was a) unlikely to be successful and b) might leave her with more disability than she currently had

In the end, she died of pneumonia after a stroke.

^ this is my mum. She needs the hope. Thank you for saying this as a daughter and as a HCP.

She is under community palliative care and hospice, hence why I think the doctor asked about long term plans. I think they've not discussed it yet as this bout of illness has been sudden and though linked to meds side effects, has considerably weakened her already-weak heart.

"Having the DNAR in place did not mean that my parents didn't get full treatment - the doctors did all they could to help treat them. But it did mean that when their bodies gave up and there were no further options available, they were made comfortable, given appropriate medications for symptom control and died peacefully"

This is also really helpful and gives me.some reassurance that she wouldn't be left gasping in pain and fear should she have a heart attack or incident which endangered her life - it just means she wouldn't be subject to invasive CPR should the instance arise.

Will they record her preference over anything I've said? I feel I gave an impression which directly contradicts her wishes and if they decided not to attempt resuscitation, I want it to be because of their medical decision rather than mine

This is a difficult situation, I have been there with my father and uncle. In both cases, they were clear about what resuscitation entailed and put DNR in place.
Does your mother fully understand the reality of having CPR? Most people don't realise it is nothing like you see on TV?

Perhaps you could have a chat with the palliative care team and ask them to discuss it with you and your mother. The important thing is that she understands DNR doesn't mean do not treat and that she will continue to be cared for.

My mother-in-law recently had a cardiac arrest in hospital while being monitored for heart issues, they got her back but broke her ribs in the process, it is brutal. Thankfully she has been fitted with a pacemaker and is recovering well. She was otherwise in good health. I wouldn't put someone with a terminal prognosis through that, better to die with dignity.

The RESPECT form is better than the older DNAR
It should be filled out through a respectful conversation thinking about priorities, what is important, fears and looking at options.
There are lots of nuances around ceiling of care - eg no ICU only ward based care, allowing for antibiotics and non invasive respiratory support like CPAP.
So someone can have most of the elements of high level care but accept that cardiac compressions is unlikely to achieve recovery and could be traumatic, especially in cancer where often there are bone metastases.

It is also something that is open to review should a patient's condition improve.

The key is a respectful, unhurried conversation.

I hope the hospital can facilitate that for you and your Mum OP.

My own mother simply refused to contemplate her mortality, she suffered a lot with osteoporosis, several falls, fractures and operations. It meant that following her last fall when she had a really nasty fracture at the base of metalwork already in the leg from previous surgery, and she was not expected to survive the operation. The surgeon rang my sister who had POA, in a panic, in the evening needing to have the DNR on record before she went into theatre. My sister had the conversation over speakerphone as she was driving the grandchildren home leading them to ask if Granny was going to be put down. It's really better to think about these things calmly, in advance.

Rather than distressing your parents by discussing the details further (given you've already had that conversation) I would just tell your mum you understand she wishes to be resuscitated and will tell the medics of her wish when the time comes. The probability is when the time comes there will be no question of an attempt to resuscitate because given her ill health there will have been a severe deterioration in her condition so its really unlikely you'll ever have to make any kind of decision on this at all.