What does DNR really mean

[readsalotgirl63]

Hi - I used this board a lot when dealing with my own elderly DM and received great advice and support. DM sadly passed away 4 years ago but DH and I are now dealing with his elderly parents so I'm back for more advice.

PILs are in England and we are in Scotland so I'm a little unsure of the legal situation.
DFIL (80)is terminally ill but still at home with MIL ( 74) and they have support from district nurses and nurses from the local hospice. Have also had a lot of support from MacMillan. Also SIL lives close by and has been a huge support and help to them ( not always appreciated) !
FIL is now very frail and is being pressed by nurses to consider DNR but he is very reluctant to express his wishes. Does DNR refer only to resusitation if his heart fails or does it have a wider application ? For example if his kidneys were to fail and he'd completed a DNR does this mean he wouldn't be offered dialysis ?
If he doesn't sign a DNR who would make decisions regarding his care and treatment ? I think MIL assumes it would be her but I not sure this is correct and I think it might come as a huge shock when/if the situation arises. MIL by the way is caring for FIL and has coped very well but is now struggling and is very inclined to snap heads off so these discussions are challenging.
Despite our encouragement over the past few years FIL has not arranged POA and now seems even more reluctant to do so - he feels "everyone is ganging up on him". DH is very concerned but we are now unsure how to advise FIL.
If he is reluctant to sign a DNR or express his wishes clearly in writing should we just leave it and deal with the situation as it develops ?
Thanks

It just means do not resuscitate if his heart stops beating and he stops breathing. It does not mean do not treat which includes dialysis.

It means they will take no extraordinary measures. So they will provide pain relief, but not life extending treatment.

Fenella is wrong. DNR/DNAR is do not attempt resuscitation. It means no attempt is to be made to try and bring the person back to life after they have died - no CPR in the event his/her heart stops beating or they stop breathing.

It means no CPR if the patient collapses or arrests. Basic medical care, including IV care, remains unaffected.

As long as he has capacity, he will be deciding treatment going forward for himself.

Hi - thanks for that. DH and I were trying to encourage him to complete the DNR as we thought it related to treatment in general but I have read a few things today on NHS and Age UK which made me think we had got it wrong and that it was very specifically about his heart stopping - thanks for confirming that.

Still leaves the questions about what other intervention he might or might not want.

All measures to try to prevent death can still be taken unless specified otherwise. So antibiotics might be given for infection, they might receive dialysis etc. It's not the same as just pain relief and 'making someone comfortable'

A DNR means that if he collapsed and was in cardiac arrest, resuscitation would not be carried out. It does not mean he would not receive treatment for other issues that did not cause a cardiac arrest.
As a HCP, it was such a relief to go out to families who have thought ahead and provided their terminally ill family members with a DNR. If they are resuscitated by a paramedic/technician and get a heartbeat back, it would be highly unlikely they would actually wake up and the receiving hospital would give them care but would be unlikely to continue with the resuscitation.
Resuscitation is brutal and it has a low rate of success and this drops even lower in people with terminal illnesses.

And you can talk about advanced directives, which give specific instructions for specific conditions too. For example, provide antibiotics for an infection.

In my trust we actually call this 'DNAR CPR', so it's literally do not attempt cardiovascular pulmonary resuscitation. So even if someone on a DNR choked on their dinner we would try to save them, you're effectively agreeing to no intervention for a cardiac event, but anything else we'd still do our best

Thanks all of you so much as DH and I are now quite clear about what this means.
Unfortunately PILs are very "head in sand" about the whole situation and FIL is very reluctant to discuss what he wants (or not) in terms of treatment. DH and I are concerned that he will get to a point where he lacks capacity to make decisions and that none of us will have any real idea of what FIL would have wanted.
MIL also is very reluctant to discuss the situation and I am concerned that she will not be in a state to make decisions either. It is a bit of a mess and it really has made me think very seriously about making sure my wishes regarding what I'd like done or not are well and truly recorded.
Thanks especially to those of you with a medical background - it is really useful to have this information .

Just another query - if FIL does not sign a DNR and then had a cardiac arrest would paramedics attempt resusitation ?

Also in the absence of a DNR and a POA if he lacks capacity to make decisions would it be MIL who would make decisions about treatment ?

These are all questions that can be answered by your McMillan nurse.In terminal care nurses and doctors are trained to have those difficult and heart breaking conversations.They will have all the knowledge about your father in laws conditions and the implications of each choice that is made.Usually dnr are made alongside specialist consultants and the decision not to resuscitate does not fall too one individual and is always made in the patients best interests.So yes your mother in law could refuse resus on her husbands behalf but,that would be not her choice alone.I hope this helps.

Lacking capacity has to be determined by a medical professional. In hospital it is usually done by a psych.

Just being intermittently confused does not mean there's no capacity. You have to be careful not to take his autonomy away without an official ruling.

Ultimately the medics will make a medical decision whether or not cpr is likely to result in a positive outcome. For a frail elderly person the chances of cpr having a positive outcome are very low, versus the trauma involved. Cpr isn't like on casualty, it's a pretty violent intervention.

Thanks again - DH and I are finding it difficult as we are several hundred miles away from PILS who have been reluctant to have anyone else "interfering". They are not happy for either DH or SIL to attend appointments with them or give permission for DH or SIL to speak to Macmillan nurses or consultant.
Getting information from PILs has so far been challenging as they do not wish to discuss any of this. DH has tried to explain to FIL that such decisions are for FIL to make but he seems very unwilling to make them.

I think we are concerned that he will be in a coma and no-one will know what what FIL wanted to happen. I think also that MIL does not realise that the decisions may well be made by medical personnel and that in the absence of POA she may not be in a position to challenge any decisions regarding treatment. I do think the medical profession will make decisions in the best interest of FIL - just MIL may not agree with them and I think she will be very distressed by her ultimate lack of power.

Have to say we are enormously frustrated by ther complete unwillingness to engage in the discussions and to include DH and SIL in those discussions.

From my recent experience with my dad DNR means do not resuscitate and that's it.

Getting to the point of him not having capacity to make decisions ime tends to be a long drawn out process. My dad was absolutely incapable of making decisions but it was difficult to get this verified quickly.

Again, afaik if your FiL had a cardiac arrest before signing the DNR then they would try and resuscitate but they would make the final call if they thought it was not working.

this might help.

IME, capacity is judged by the medical team looking after the patient, psych is not involved at all as we don't have any.

Even if your DFIL loses capacity without POA for health and well being all your MIL can do is advise the docs what his wishes would have been, they will make the ultimate decision based on his best interest. Without DNAR in place paramedics would attempt resus if called to a collapse. Doctors may decide to invoke DNAR without DFILs agreement, though the try to come to an agreement with the family / patient wherever possible.

Tbh if a palliative patient deteriorates so much that they are in a coma then death is not far behind. It is unlikely anyone will be in a hurry to perform CPR on a patient whose organs have shut down. As next of kin, your MIL will be fully included but it's unlikely the discussions would be very lengthy as death would sadly be very much expected given his condition.

Just another query - if FIL does not sign a DNR and then had a cardiac arrest would paramedics attempt resusitation?

Paramedics have to resuscitate unless there is a DNR, the head is separated from the body or rigor mortis has set in. They can get in huge, possibly career ending trouble if they don't. They would probably do it half-heartedly and it would be stopped the minute he got to hospital. If the arrest occurred in hospital then likely the medics would take a view and not start. Well under 1% of people who have in-hospital CPR survive to discharge and most of those who do are on the CCU, otherwise healthy people with a primary heart condition.

As I understand it, the decision to put a DNACPR in place is made by the dr, with patient and family input, but the ultimate decision lies with the patient's dr. That's how it is in hospital, I'm not sure if it's the same in community though.

Mskite yes, you're right. It's not the family's decision to make and when I do DNACPR forms in the community I make that very clear. Takes away the guilt.

Paramedics generally do CPR if there is no DNR in place but we can make the decision not to start if there has been no effective CPR happening for 15 minutes prior to our arrival, rigor or hypostasis is present or there is a condition incompatible with life such as decapitation.
We do have some wiggle room if there is a written diagnosis of a terminal condition and death is expected imminently eg there are rescue meds in place.
If we do start then we can pronounce life extinct after 20 minutes of advanced life support if the patient remains in an asystole rhythm and do not need to transport to hospital if this is the case.

Again many thanks to all - we are now very clear about what DNR is. I suspect that FIL will not sign a DNR which may create a difficulty should he have a cardiac arrest at home. However if he is taken into hospital I strongly suspect that no resus would be attempted - I have no idea how MIL will feel about this . It is impossible to determine what her views are as she simply refuses to discuss it at all. FIL becomes distressed so SIL ( who is close by) now doesn't want to raise the subject. which I can sympathise with.

I find it frustrating as while I can appreciate their need to feel in control I find the dismissal of DH and SIL 's genuine concern as "interfering" quite hurtful. Also because my DF was more than happy to discuss his illnesses with me and my DM was latterly very happy to relinquish control and let someone else make decisions I am used to having quite frank discussions - DF had quite a dark sense of humour ! DH was around my parents quite a bit in their later years and we both find PILs head in the sand attitude very difficult.

Once again thanks all as the info on the success rate ( or not) of CPR and the thought process behind medical decision making I think will be useful in the weeks to come. I do hope the professionals have more sucess in raising the issues with PILs than we have had .