DNR

[Springsnake]

A relative has early onset dementia,is in a rest home ,when she first went in the gp tried very hard to get me to agree to a DNR ...relative is in fine health,just a bit forgetful.
This week I’ve had a phone call from rest home ,trying to get me to have DNR put on her notes ,explaining that co morbid conditions mean resuscitation may not be successful and relative left in a worse state than before ..relative is only 75 ..with no co morbid conditions
This can’t be right can it ,I’m the only next of kin ,why should I get to decide on a DNR ...surely the doctors do their best for everyone.
They also asked did I want her going to hospital to be treated ,or treated in the rest home ..I said well obviously whatever she needs to give her a successful outcome if Ill.
I felt pressured both times ...
I really hope I’m the exception and this isn’t standard practice in our country now

doctors do their best for everyone

They do, and that doesn’t necessarily mean resuscitating them. Resus is traumatic and often results in broken ribs, amongst other things. It sounds like you’d benefit from a proper conversation with your relative’s doctor about the risks, benefits and realities of resus.

When older people suffer a serious illness they generally increase a dependency level if they survive the illness.

So if they live independently they will generally only be able to return home with carers.
If they live at home with carers they will generally need residential care post illness.
If they are in residential care... then they will likely become much more dependent in the home. The survival rate from serious illness in residential home residents is very low.

Having a cardiac arrest and requiring resuscitation is the marker of a very serious illness. In the vast majority of times resuscitation is unsuccessful (especially if the cardiac arrest happens out of hospital).

Resuscitation itself is brutal.

Unfortunately dementia is an illness that generally starts with memory problems but as it progresses it affects physical health too - difficulties with swallowing causes increased incidence of chest infections etc. The home are being proactive and planning for the future.

Doctors do want to do the best for everyone but sometimes resuscitation isn't the right thing to do.

I fought my aunt very hard to get my grandparents made DNR - i genuinely believe that it was not in their interests to be exposed to the brutality of a resuscitation attempt when they died.

My Grandfather's residential home provided very tender care to him in his final illness (a chest infection). He didn't go to hospital. I am very very pleased we achieved this death for him.

Did you ask what co-morbidities they were alluding to?
I agree with the pp. I also think this is not really a conversation to be had over the phone.

They have dementia and already have to live in a care home. Their quality of life is already severely compromised. Is prolonging their life should they get to the point of needing to be resuscitated really in their best interests?

Ultimately whether or not to attempt a resuscitation is a medical decision, based on weighing up the likely outcomes. Having a dnar in place doesn't mean other medical care won't be given.

I'd be asking both the GP and rest home to write/email you with their reasons for recommending DNR. Don't rely on the spoken word.

Yes I agree with Chelsea. Do Not Attempt Resus is not the same as Do Not Treat. So having a DNAR doesn’t mean she/he won’t be treated for infections or other problems that could shorten her life.

It just means she will be allowed to die naturally and with dignity. The heart is the last organ to stop when normal dying occurs. Without a DNAR in place the staff would be obliged to perform CPR which will not work in someone whose organs have failed.

This is such a hard conversation to have. I agree.

My mum is 74 and went into nursing home at the start of lockdown last year with Parkinsons and dementia.

While she was in the community hospital i got a call from a doctor to have this discussion. The decision was that, if my mum were to get covid she would not be eligible for a ventilator or resuscitation. It was really horrible. I got asked all the questions about whether i would like her to get cpr or fed through a tube or other resuscitation techniques. I was so upset as she was quite ill with a cough at the time. I wanted her to have it all. I wasn't ready for this conversation. But in truth, everytime i answered yes i would like her to get this treatment or that, i would gently be guided to answering no. The thought process being that she was very frail, tiny, with osteoporosis and all of these procedures would be potentially damaging, they could break ribs or more and that in truth they would be far to invasive for her. I was heartbroken. The decision would be that she would not be transferred to the main hospital as she would only get the same ward care she would get at the community hospital. I was in bits to be honest. And the whole thing nearly broke my step dad at a very difficult time for us.

But, I do understand a bit more now, she was in no fit state to be able to withstand such hard treatment. My mum is now in a home and Parkinsons and Dementia and lockdown notwithstanding, she is in fairly good health.

I do feel for you. I'm sorry that you are being asked this. It isn't easy.

I think you need to be physically fit enough to survive the demands of CPR. I feel awful for saying this but I wish my beloved Dad, who is 79 and very ill with COPD, Acute Kidney Disease and heart failure, had a DNAR. He has actively said he doesn't want it served and obviously it's his choice. But he's in and out of hospital a lot (he's there now) and the doctors always look surprised when I say he doesn't have one. I just hope that when it comes to it he's not prevented from having a peaceful release. I wish there was more education about it because when my mum was critically ill and needed an urgent operation they asked me that question in a big hurry, no time to think about it.

Having lost one parent a couple of years ago and have the other parent in mid 80s, I think DNR is very sensible unless the individual involved is totally against it. My parent I lost went quickly and my surviving parent worries so much about becoming a burden, being ill for years, having no quality of life etc.

Sadly a person who is 75 with dementia and living in a care home is very unlikely to survive CPR.

They aren't asking you to decide on the DNR but telling you kindly that it is the best decision.

Doctors do their best for everyone but for many people at the end of their lives, doing their best means not doing CPR but letting them have a peaceful death without the brutality of a futile CPR attempt.

Without wanting to upset you, someone with dementia and already in a care home really should have a DNR. There is no reason, others than your own personal feelings to attempt to resuscitate. You say the dementia is mild, but it's also progressive, the DNR really is the kindest thing.

I think it's worth weighing up whether the distress of leaving the home to go to hospital is worth the benefit of treatment.

For my very elderly relative, once she was past the point of being able to make informed decisions for herself, her daughter decided that she should not have any treatment that would cause her distress (e.g taking pills, being moved from a familiar place) without significant immediate benefit (alleviation of pain). This meant that she had comfort care only, in the care home, during her final illness - she may have lived longer if she'd been taken to hospital but some of that extra time would certainly have been spent in a highly distressed, confused and agitated state. Instead she died peacefully, albeit in a more drawn out way than anyone would have wished for her.

Cardiopulmonary resuscitation would have been absolutely barbaric and I doubt you would have found a medical professional who would have performed it, but it made things clear for everyone once the DNR was signed.

I was horrified when my Dad’s doctor spoke to me about this. He was very young and fit, dementia aside.
After she explained what resuscitation would involve, I understood. It is brutal and not very successful outside of a central hospital setting. She also explained that I wouldn’t have to make any decisions; the doctor would have the final say.

Do add in an uncomfortable and sometimes long ambulance ride to hospital, time in A and E - busy, noisy, etc - then into a ward, without a companion or carer on hand all the time, unfamiliar faces despite the kindliness of staff. Really hard for a dementia patient to go through. So weighing up what is best for that person is done with great care.

Very few people who have dementia severe enough to warrant being in residential care are “fine in health, just a bit forgetful”. If you had a terminal illness would you insist on being kept alive indefinitely no matter what your quality of life actually is?

It is clear that lots of us have had similar experiences.

It IS shocking to have that conversation, and upsetting too. But once you get chance to reflect you see the kindness in the decision making.

Big hugs, people.

@SinisterBumFacedCat

Very few people who have dementia severe enough to warrant being in residential care are “fine in health, just a bit forgetful”. If you had a terminal illness would you insist on being kept alive indefinitely no matter what your quality of life actually is?

Gosh yes yes yes. Dementia IS a terminal illness, that fact is sometimes glossed over in favour of the trope of delightfully dotty old lady or roguishly-behaved old chap, bless him, etc.

Very sensible advice above.

At 75 with dementia the extremely small number of people that survive are not the same person afterward.

75 and cycling, swimming every day is a different matter and warrants more consideration.

The doctors shouldn't really be asking for your permission unless you have a lasting power of attorney for medical decisions. They should be informing you about a properly considered best interests decision that has been reached ideally through discussion with yourself, other famiky members, carers and possibly their GP.

@ChelseaCat

doctors do their best for everyone

They do, and that doesn’t necessarily mean resuscitating them. Resus is traumatic and often results in broken ribs, amongst other things. It sounds like you’d benefit from a proper conversation with your relative’s doctor about the risks, benefits and realities of resus.

This x 💯. I have a health directive that states no treatment for any condition following a diagnosis of dementia. Quality of life over quantity always.

A DNR doesn’t mean don’t treat. She will be cared for like any other person and given treatment if needed. It simply prevents the brutal and usually unsuccessful process in a patient who is unlikely to survive/have quality of life if their heart stops. Dementia does usually have co-morbidities, particularly heart/vascular issues, even if just early stages.

My Dad had a DNR but he had a cardiac arrest out with my Mum who froze and couldn’t bring herself to tell the paramedics. When I got there he had been resuscitated but was brain dead and died a week later in hospital.

I’m sorry but I agree with the PP’s. Dementia itself is a progressive disease and her quality of life will lessen as time passes. Healthy people rarely suffer cardiac arrests, someone is usually very unwell to reach that point, the process itself is brutal and undignified and the outcome is rarely good news.
That’s not to say that all treatment is inappropriate, and that is perhaps the discussion you should be having. For example, would you like her to have all the treatment possible to try to avoid her becoming this unwell, tube feeding, IV fluids etc, most of which would have to be done in an acute hospital setting, or would you like her to remain in familiar surroundings and be given oral medications (antibiotics if needed) to treat symptoms, and transferred only in the case of medical necessity such as pain relief or surgery for a fracture.
These are ultimately medical decisions unless you have POA for health and welfare but the wishes of family are taken on board.

@sleepyhead - my relative didn't want to go to hospital; she made that clear. In her late 80s, every time she was taken to hospital (not by me) she declined; cognitively, physically, within her autonomy, her mental well-being and ability to do anything. Her spoken wish was to die peacefully at home, in her chair or in bed. However, my other relative insisted on hospital every time, so she spent most of her last year in and out of hospital, getting more ill, more disabled, more confused, and more distressed. It was a horrible end for her, even though the medics were all caring.

It is such a gift to be kept out of hospital when extremely elderly and soon to die. DNR is eminently more caring and sensible than treatment at any cost. Tube/ peg feeding is cruel, even medication at a certain stage just becomes prolonging what is supposed to be a life coming to its natural end.

There is a difference between Advanced Care Planning and a Do Not Attempt Resus order. A DNAR specifically relates to CPR - ie whether to attempt to resuscitate in the event of a cardiac arrest. ACP is making decisions about whether to have supportive/palliative care at home, or more invasive treatment such as tube feeding or IV antibiotics. Either way, these decisions aren’t usually made by the relative (although their opinion is sought) for a patient who can’t make their own decision, the care team make a “best interests” decision. It just makes it clearer to have decisions in advance rather than be asked in a stressful situation.

I have a health directive that states no treatment for any condition following a diagnosis of dementia. Quality of life over quantity always.

Alsohuman, I hope that you had advice on this. My DM had advanced dementia and a broken hip, in a hospital which was reluctant to treat her. I had to fight for pain killers for her - and lost the fight. Please do not allow yourself to be left in pain with no treatment. It was hideous. No treatment is different to a DNR, which I was happy to sign for her.