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The value in knowing..

Why does it matter for patients to know when DNACPR decisions are made?

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Five years ago I’d never heard of the terms DNR, DNAR, DNACPR...In my early 40’s, I guess I was quite lucky to have all my close relatives still alive, and had never had to deal with the death of a loved one.  Today, I sometimes think I know a little too much for a non medic if that’s possible, both through my own experience and through experiences other people have shared with me.

I have had two experiences of DNACPR in the last five years.  The first was when my mum, Janet Tracey, died in 2011. 

Mum was in hospital due to a car accident; For some of the time mum spent in hospital she needed a breathing tube, and when she didn’t her throat was sore so her voice was a whisper.   Throughout mum’s time in hospital, even when she couldn’t talk, she had no problem communicating!  We bought pens and pads so that she could ‘talk’ to us and the medics. She did a pretty good job of ‘chatting’ to us through her notes. When the pens didn’t work upside down we got her some that did;  when she said she didn’t want her pens to mark the hospital’s bed sheets, we got her some that didn’t. 

Mum would ask ‘what have you been up to?’  ‘How are the children?’    ‘What’s the weather doing?’ She’d ask the nurses what medication she was having and remind them if they were late!   She asked one of my sisters to get cards for two of her grandchildren whose birthdays were coming up.  Mum celebrated her 63rd birthday in hospital.  The children drew pictures for her and we all got cards and balloons. Mum drew us all a picture on her note pad; it was of a house, and next to  it she wrote ‘ to all my lovely children and grandchildren’     

More than anything else though mum asked when she was going to be able to have her Chemo

Mum was looking forward to having Chemo.  She had found out a couple of weeks earlier that she had terminal cancer, that she could not be cured but that they she could have Chemo.  She had also been accepted onto a clinical trial.  She knew it would be physically gruelling - that it would not cure her cancer - that she may lose her hair, but it was her chance of more time with her family.  So it was devastating for her when the Oncologist at the hospital she was in following the car accident said to her that she was probably never going to be fit enough for chemo.  Mum took this terrible news with her usual dignity and wrote on her notepad ‘do not exclude me’ and ‘I will do my damdest’

Very shortly after this conversation with the Oncologist another doctor made a further important decision about mum’s treatment.  He decided mum would not survive resuscitation.  However he approached discussing this decision in a very different way from the oncologist.  He spoke to my sister, and in nuanced terms and with ambiguous language, told her that they were going to remove the tube that was helping mum breathe and that if she struggled she would slip away.  He did not mention that it was a decision that was so important that he would fill out a red edged form and note this conversation on it.  He did not mention DNR or DNACPR or DNAR.  He did not mention a form at all.   In fact, it was not really a discussion but a download.   He also did not talk to my mum about it. I’d been out for more pen supplies and when I got back one of the nurses stopped me and took me to the room my sister was in.  She offered to make me a cup of tea.  

I was told the same as my sister in pretty much exactly the same way. Later that day the term DNACPR was mentioned to my sister in passing and she was told not to worry about it.    

So she didn’t.  Our focus was on mum.  We had expected mum to die that day, and she hadn’t.   She was now sitting up, eating, chatting, and back to being more like the mum we knew. 

That conversation, about slipping away, just didn’t seem relevant any more. 

One of the doctors sat on the end of mum’s bed that evening and said she was ‘remarkable’.  But we already knew that!

Mum was moved to a ward.  I could not put my finger on it but something had changed.  There was less intensity, different medics coming to see her and some of the conversations were frightening her.  They asked her how long she thought she had.  Did she want to know? The conversations were upsetting mum and were always when none of the family members were around.  She thought they had given up on her that they were writing her off.

That term DNACPR stuck in my sister’s head. My sister lives abroad, and when she went home a couple of days later she Googled it, as you do when you hear something medical that you don’t understand.    She immediately knew it would be something mum did not want on her record.  She had it removed and we thought that was that.

But it wasn’t. 

The medics started talking to mum about the form.  They told her we had agreed to it.  Mum thought we wanted her to die.  I told her we never agreed to any form, that they had pulled the wool over our eyes.  Mum sobbed.  I had not seen my mum cry in years. I asked her if I could have a word with the staff, to stop them talking to her about it without our support, and she said yes.   So I did.   I was appalled that my mum, at her most vulnerable, in a hospital gown, in a hospital bed, had been reduced to tears by people she trusted implicitly, and some form.  To be honest at that time I thought I knew what CPR was but even at that point I didn’t understand what the form was or what DNACPR was -  it was just a form, mum didn’t want it, and if she didn’t want it she shouldn’t have it.   And anyway although she was poorly in some ways, her heart was strong, and she wasn’t going to have a heart attack...

Again I thought that was that. 

But it wasn’t

The hospital did keep their word not to talk to mum without support.  Instead they turned to us.

It started when I went up to the nurses’ station to ask for something.  A doctor stepped up and asked me what I knew about mum’s condition. I replied with what I knew.   They would say that if her heart stopped they would use chest compressions that would break her ribs that weren’t already broken, put electrodes on her that would burn her skin and that mum would be awake through all this;   That mum probably would not survive this but if she did she would more than likely be in a vegetative state, spend a short time in ICU,  and die anyway, and did I want to put her through that?  The first time I heard this I felt sick but what could I do? Of course I didn’t want to do that to mum, but mum didn’t want that form. She had made her decision.  She did not need any more upset. Her heart was strong, what was all this about heart attacks?   She just wanted to go home.

This conversation was repeated with alarming similarity

The weekend before mum died a young doctor we all trusted made more decisions about mum’s care.  On Saturday 5th March 2011 she asked mum ‘if there’s one thing I could do for you today what would it be?’ Mum replied that she wanted to go home.  The doctor filled out three sets of forms.  We saw them in mum’s notes after she died.  One was a Continuing Care form which was part completed.  One was the Liverpool Care Pathway, fully completed;   The third was a DNACPR on which she wrote that she had the agreement of myself and other members of my family. 

Mum never got her wish to go home.  She died two days later, in a side ward, at the hospital.


Last year another member of my family was taken into another hospital. 

The call that dad had had a cardiac arrest came in the early hours of the morning.  The nurse said they had reversed the situation, that dad was stable, and there was no need to come to the hospital straight away, but could I come in to see the consultant in the morning?  That morning I dropped the children at school and went straight to the hospital. When I got to dad’s bed there were signs all around of the arrest – a mask, sticky pads, respirator. He was sedated and looked awful. 

A young doctor was standing at the foot of the bed looking at dad’s notes.

I asked him if they had broken dad’s ribs

He said they hadn’t but that if they had it would be the least of his worries

I asked if the electrodes had burnt dad’s skin

He said no, they had used pads

I tentatively asked if dad would be in a vegetative state, worried we would have to turn off the machines. 

The doctor was looking at me a bit strangely by now, but very gently said it was unlikely, dad  was only ‘down’ for 5 minutes, but that they really would not know until he woke up.  He said the consultant would be around to see me soon.

I knew what that meant; is it ever good news when the consultant wants to talk to you about a relative in hospital?  

The walk from dad’s bed to the relatives’ room on that ICU ward was the longest walk of my life; I knew what was coming and I felt awful.  This time there was no tea. 

The consultant, the junior doctor, and I sat down. The consultant asked what I knew about dad’s condition.  I told him what I knew.  He said that dad just would not survive another cardiac arrest, and that he was going to put a DNACPR in his notes.  He started explaining medical terms and percentages and mentioned giving the heart time to recover.   The doctor apologised for having to have the conversation and I told him that, seriously, it was not a problem. I asked if dad was going to die and he said he did not know.  He said they would continue to treat dad, and this time I understood the language and knew what that meant.  I asked question after question, trying to understand medical things that it had probably taken this doctor years to understand. I asked if all his colleagues would see the DNACPR in the same way, that I was worried about them seeing the DNACPR as ‘do not treat’  He told me that his team worked very closely and that, yes, they would all see it the same way.  For my part all I could tell him was that dad was planning ahead, that he was normally active and fairly healthy, that he enjoyed his hobby and lived independently and that the most important thing was that as soon as he was able to they must speak to dad about it.  Suddenly the consultant paused and what he said I don’t remember exactly but it was something like ‘please don’t be swayed by one bad case that’s been reported in the news...’ I asked him which one he meant and he said ‘The Cambridge case’

I told him that was my mum. 

He did not say much more, but what he did that day and for many days after restored my faith.  The consultant and his team showed me that DNACPR does not have to mean ‘do not treat’ and that it can apply only to CPR.  One of the team checked in with me almost every day to show they had reviewed the fact that dad still couldn’t really talk about it ... yet...but that they had not forgotten.  That was really important. 

Dad was moved to a ward, and I was worried about the change mum had had when she was moved to a ward.  I was becoming concerned that nobody had spoken to him about the DNACPR.  I felt uncomfortable that I knew but there was no way I would be able to explain the medical jargon to him... I asked a few times for them to help me tell him on the ward but it did not happen.  Eventually on a Friday evening I spoke to the ward sister who told me the consultant was not in at the weekend...I said it was really important that they speak to dad after the weekend and that I would be around all day.   On the Monday I bumped into a doctor writing up some notes and asked him if he had told dad about the DNACPR.    ‘Oh no’ he said, ‘we have no reason to believe that your dad would not survive CPR so we have removed it.’  I was pleased but a little uneasy.  The decision to tell dad was now on my shoulders.

The day dad was discharged from hospital I told him in the car on the way home..he said ‘why didn’t they just tell me?’

I’ve thought a lot about the things that made the first and second experience different.  I think the only thing that I can honestly pinpoint for making the second conversation easier is clarity and knowledge.  It was a dialogue, not a download, there was no ambiguous language on the part of the consultant and for my part I had much more knowledge of DNACPR.    Knowledge is power probably isn’t the right phrase, but in this case it is certainly helpful.  

But where can we as patients find out more about DNACPR to increase our knowledge and make this conversation easier?  The answer is that we are still very reliant on clinicians for this, and in spite of the legal right to know when a DNACPR decision has been made, the existence and quality of DNACPR discussions is still hit and miss.  However by sharing mine and my family’s experiences I hope that it will help doctors to understand the importance of getting it right.  The legacy of an avoided or poor conversation lingers, sometimes forever, and sows seeds of mistrust that can be hard to repair. 

There are lots more stories to read on the internet about DNACPR than there were in 2011, none of them detailing great experiences.  I’d love to see some ‘good’ experiences shared.  Apart from this there’s very little information out there for patients; unless they want to wade through pages of guidance from the GMC or Resuscitation council that is really aimed at clinicians and then apply it to their own situation.  

I have wondered if the difference in my feelings about the two DNACPR discussion experiences I have had was the outcome; mum died, dad lived.  But I don’t think so. 

If dad had died, my knowledge of the issue and the clear information given by the consultant would have enabled us to work together to fulfil dad’s wish that he would not want to die alone.   Mum never got her stated wish, which was to go home.   

That’s the value in knowing.  


“How people die remains in the memories of those who live on”

This is a quote from Dame Cicely Saunders, founder of the modern hospice movement.

For me, what remains in my memory of mum’s death is a legacy I would not want anyone else to have.  The fight mum had that made her ‘remarkable’ is the same as the one I now have to make things better for those faced with similar situations.    I think things are moving forward, slowly, and hope one day we will get to a point where talking about death isn’t scary, where ambiguity gives way to clarity, and where the wishes of patients regarding the end of their lives are always respected.   


the legal right to know when a DNACPR decision has been made - judgment  of the High Court 

Legal duty over resuscitation orders - BBC story following my dad's legal case


Tell us about your work experience:

Wife, mum-of-two, part-time job and spare-time campaigner for better end of life discussions.

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Photo of Becky

Amazing description of two very different DNACPR decision making processes. Kate's mum's story has already changed practice in the UK. Lots of work to be done still.