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.

I was recently in hospital and heard many conversations about dnr (thin curtains are not the most private). They ask everyone over a certain age I believe.

The best reply I heard was a lady who had discussed it with her husband and then decided with the doctor to have a chemical resuscitation but not the physical one so they will try.

I would bring the palliative care team in to support this discussion. They have the experience and skills to do this advanced care planning well. Does your mum still have an open referral for you to to call them directly?

I’m sorry you’re going through this and hope you are doing ok.

I think I would let it go - I doubt that staff will rush her to resus if she has stage 4 cancer. My DM had to be bullied (a bit) to sign it as care home wanted it. And then they sent her to hosp when she was poorly and hospital staff were not pleased. When she should have been left in the care home. Why sign it if CH pack you off for treatment.

I agree with this.

I completely understand why you said DNR as I think that would probably be best but she’s made her wishes clear.

I’m so sorry you’re going through all of this, especially when you’re about to give birth.

I would 100% respect her wishes but make it clear to the doctor that they should do what they think is best at that time.

I couldn’t override my parent’s wish on this. I think you have to go with her wish & then leave it to the Dr to decide. I’d also be annoyed if my child overruled me on something so personal.

Don’t take this on for yourself. Whatever decision is made you’ll break your heart thinking you either supported something traumatic or went against your mother’s wishes.
In the case of a natural death where the heart gives up because the body is dying cpr is futile.
I’d ask her doctors to broach the subject with her again. In a more detailed and sensitive manner.
The best outcome here is dnar with your mum’s agreement. Alternatively just as you have done, it’s deferring to medics at the time.
Beware however than unless the legislation is different where you are compared to here, if deterioration was faster than expected and paramedics were called they would have to start cpr unless there is a community dnar in place.
I’m sorry you’re going through this.

I'm sorry about your mum.

But, even as hard is to accept that, you have to understand her decision. I have seen people suffering for months or years, because they didn't get to sign their dnr. Try to step in her shoes, how would you feel if your quality of life would be a most non existent, you would not wish that to anyone, and hope she can have a lovely time while she is around x Hugs

Here is a RESPECT form for you to see OP.
And a link to Resuscitation Council UK

I hope this may help you to understand and support your Mum whilst making the best decision for her.

Good luck with the birth and enjoy your new baby, I'm sure the arrival of a Grandchild will give your Mother enormous joy.

https://www.resus.org.uk/respect

What is ReSPECT?
ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment.
ReSPECT Form
The ReSPECT Form records a patient's personalised recommendations for their clinical care and treatment in a future emergency in which they are unable to make or express choices. It replaces and builds on information held in a Treatment Escalation Plan (TEP).

ReSPECT provides a patient-centred approach to decision-making about deteriorating health and end of life. It focuses on a joint discussion between the patient and healthcare professional about what matters to the patient and their family, linking both their personal preferences and clinical judgement. The patient and clinician can then agree on realistic clinical recommendations that support the patient’s ongoing care.
What is included on a ReSPECT form?
It records the patient’s relevant diagnoses, their personal preferences (life sustaining treatment versus comfort) and it records treatments that should be considered, as well as those that are not wanted or would not work. The clinical recommendations are used to guide decision-making in the event of an emergency or deterioration in the patient’s condition.
Who is the ReSPECT form for?
A ReSPECT form can be completed for any individual, but will have increasing relevance for those with multiple or particular healthcare needs, nearing the end of life or at risk of cardiac arrest or rapid deterioration who want to record their preferences for any reason.

If you are in the UK, then neither doctor handled the issue well.

Ultimately, DNACPR is a medical decision and in your mum's case, sadly CPR has next to no chances of success.

The first doctor was wrong to discuss it with you first rather than your mum, given she has full mental capacity. They were also wrong to decide with you not to discuss it with her - this is only acceptable if you have very strong reasons not to do so.

The second doctor was also wrong as they presented it as a simple question of 'would you like CPR or not'. The doctor should have been clear about what is involved, that your mum would almost certainly not survive, and if she did survive would likely be very injured and brain damaged.

I would take your mum back to that conversation she had with you about resus, go over it, help her think about how she would like her last days, hours and minutes to be, where she wants to spend them and see if CPR really forms any part of it.

I cant imagine how you're feeling,
No words can make it any better and im so sorry youre having to deal with all of this as well as being pregnant.
The thing is, your mum has FULL capacity. You need to respect her decision at present. If the consultant decides to override this then thats their decision and itll be a decision that's made with your mums best interest at the forefront.
You are ALSO extremely important at this moment in time. Don't put any added pressure or stress on an already horrendous situation. You have your mum to think about but also you have yourself and your baby,
Let the professionals deal with this, there will be a multidisciplinary meeting with many professionals to discuss the best outcome.
You focus on quality time with your mum making memories. You are showing you're an amazing daughter having your mums best interests at heart - please dont forget your own too x

Not when she doesn't want one, it isn't. Not just because it's overriding her wishes outside the medical decision process at the time, but because the OP would always know that she'd caused fear/lied or simply 'might' have got it wrong and her mother could have lived afterwards for a significant period as she said she wanted to have the opportunity.

There's not much control over things for the woman. At least don't take a feeling of control away from her, even if the reality is likely to be that the doctors decided not to treat her.

On sorry you’re going through this

I'm so sorry it's such a sad situation. My dad died of cancer in 2020, he seemed pretty ok until 2 weeks before and then it all happened fast in the end, not always a bad thing. When it came down to it, the doctors were so kind and it felt like there was time for this type of discussion. By then my dad wasn't very responsive and I could see how much the cancer had affected every cell of his body, the doctors explained their DNR decision but took time to talk and listen, in the end it wasn't necessary to worry, it was his time to go. You can never tell but it's quite likely that your mum will get to the stage where it's the right thing, one on day a decision is different from the next. Just look after yourself, don't feel guilt everything you think is so normal as a lovely caring daughter, one day at a time and hope you can have more time together x

I don’t really have much advice to offer as Mum decided for the DNR herself but she was diagnosed when I was 35weeks pregnant and passed away 2 weeks ago so I just wanted to send you a massive hug and tell you that you are stronger than you know!!

I am really appreciating everyone's perspectives on this so much.

I had a discussion with my dad today and we decided that it isn't our place to pursue discussions regarding the DNACPR, and that I would hope the respect form would be broached by the hospice team when things decline. I really hope my poor mum regains some stability, it's so hard seeing her so poorly.

Thank you all for your well wishes. This has truly been the hardest thing I've ever been through and it's so tough knowing others have been through it too. It's not fair x

"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."

This is very poor advice. Neither the OP nor her mum have the right to insist that there is no DNACPR form in her notes. It's a medical decision (and the law in a well known medical court case has upheld that - no doctor can be obliged to provide a treatment that they consider futile). It's not just about DNACPR -you can't insist on getting a heart transplant for example.

As someone who has done a lot of CPR over the years, the successful outcomes are very small numbers - and those are people who have had a sudden event such as an abnormal heart rhythm cause by a heart attack, not people who have an incurable progressive disease.

DNACPR is not the same as "do not admit to hospital/do not treat". It's something that I am at pains to explain to people when discussing DNACPR. In some cases where end of life is very close, then discussions are had around not returning to hospital unless in certain circumstances (for example if a patient fell and broke a bone, they might need to come to hospital for pain relief/ a plaster cast to help reduce pain), such as the RESPECT form or similar.

Oh love, what a position you find yourself in.

CPR can be utterly brutal. Not like you see in TV shows, and even with the most expert medical team, frustratingly unsuccessful and terrifying for the patient to endure. We found ourselves in a similar position not too long ago, and I asked the doctor to have that informed conversation with my mum as I felt very cornered - in her state (failing organs, deteriorating health due to inoperable cancer) I felt a DNR was reasonable as if she got to the point of needing to be resuscitated then the situation was very grave indeed, with little chance of meaningful recovery or quality of life afterwards. Mum stated to me very bluntly that she didn't want to die and wanted no DNR.

The doctor spoke with my mum and opened her mind to the possibility of poor outcomes that I couldn't ring myself to discuss with her.

In the end events rather overtook everyone and she declined rapidly, the DNR wasn't even a consideration in the end.

What I'm trying, clumsily, to say, is that a DNR really is the last, brutal resort. For a stage 4 patient with little chance of recovery, would a DNR prolong her life in a positive way or in a way that meant more serious suffering?

Good luck op, I'm sorry you are all going through this.

This. Your heart stopping as you approach the end of life is blessing, not something to be fought. Because, bluntly put, they revive her and then what? She gets to spend a few more hours unconscious with a shattered rib cage?

My dad died earlier this year (old age and dementia) after rapid decline. The last few weeks he was skin and bone, couldn't eat, couldn't speak, incontinent. I was so glad we had signed the dnr because otherwise the ambulance man would have tried resuscitation and his peaceful death would have become distressing and obscene.

And yes, I am so sorry you and your mum find yourself in this position. It is very hard.

I have been through this decision with both my parents. CPR is brutal and in the best of circumstances only works about 20% of the time. 30% or more of patients end up with broken ribs or sternum fractures. It is unlikely your mother would survive it in her weakened condition.

If your mum is not ready to face her mortality, I would not discuss it with her further. The doctors will decide when the time comes.

I have done CPR on a very frail 90 year old lady who arrested unexpectedly having been admitted overnight. This was early on the day shift, before the ward round when the DNAR conversation would likely have been initiated. As it was, the order was made by the doctor on duty to attempt resuscitation in the absence of a DNAR (even though the decision not to attempt can be made there and then) and it felt so cruel to pump away at that poor woman’s chest for 30 minutes, knowing all the while that we had no hope of getting her back. When her family came in to say goodbye to her, I felt enormous guilt for giving them back their beloved mum with broken ribs and a crushed sternum (that I had felt break under my hands) instead of allowing her the dignified death she deserved. They said when they arrived that she wouldn’t have wanted any of it.

Your DM possibly needs someone she trusts from the medical or hospice team to carefully go through exactly what a DNAR is (and stress that it means only that they will not try to restart her heart if it stops, not that they are going to withdraw active treatment) and that resuscitation efforts are brutal, traumatic and rarely successful.

I’m so sorry you’re going through this

I think part of what's worrying you is that you feel like you are signing her life away in contradiction to her decision.

You need to say to the doctor what you've said here: whilst you may agree a DNR is in her best interests, she has capacity and has expressed that that is not her preference therefore they, they medical team, need to have a direct conversation with her.

I know its tempting to put this off but you need to put your mind at rest so that you can focus on your baby and know that whatever happens your conscious is clean and you've done your best by your mum. If you dint find a way to make peace with what you see as your part now, you may be opening yourself up for years of trauma.please take care of yourself and your family x