I was on a political forum and we got onto the subject of DNR's. A few months ago a new doctor at our GP requested I attend an appointment to review my medication. He wasn't really interested in my medication, told me to take whatever I needed, but then asked me to sign a DNR. When I questioned why this was being raised he told me I could have a heart attack at any time and a resuscitation would probably kill me anyway, listed all the pain I would suffer, and he really stressed me out and frightened me. I felt I was being pressured so I said I wanted to think about it, upon which he said he could sign it without my permission, and he would! This stressed me even more. Why bother asking me to sign if he is able to make the decision on my behalf?
The forum response was an eye opener. GP's are phoning elderly people, out of the blue, and asking them to sign DNR's, even when they are fit and healthy.
Is this government policy, or NHS policy? I have had direct experience of consultants 'encouraging' me to refuse life saving or life extending treatment. Are we elderly no longer wanted, and are being given a message? Is this just my NHS area, or in all areas?
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ginkgo
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Ginkgo I was extremely concerned by your post. To me this sounds unacceptable practice for a doctor - that he can overrule your wishes. I'm not sure how this stands legally and hope someone on this site can clarify the position. If older people are being called by GPs to be pressurised to accept DNR status that all sounds so spooky. This needs further investigation. Your life is precious and it belongs to you .
I agree urbangirl. I could understand doctors being allowed to make the decision if the patient was mentally or physically incapable and had no relatives with authority, but it appears the doctor was correct. I have done some internet research and some medical sites say it should be discussed with the patient but it appears to be standard practice to insist upon a DNR where the patient has been diagnosed as having terminal cancer. My 'discussion' was more along the lines of being bullied. Doctors can sign DNR's without your permission, and if you disagree you have to appeal or get a second medical opinion. I hope most doctors handle it more compassionately and are not as aggressive and intimidating as mine was. Also, if the replies I received on the political forum were correct then not all DNR requests were cancer sufferers. Some were just old, but fit and active. I am also fit and active at the moment and I am hoping to be around for a few more years, if at all possible.
That's extraordinary Ginko especially as there is a move to recognise lung cancer as a long- term illness. I'm going to do some investigation. I have stage 4 adenocarcinoma but my patient notes say I am for resuscitation so I will ask my oncologist.
Hi medical staff in hospitals routinely seek DNRs from patients of advanced years who have various medical issues . Your GP unfortunately lacked a good bedside manner , the public have a very unrealistic expectation of CPR which is brutal and has little success as we age and have health challenges, if its successful most patient s end up worse off with loss of function being left quite disabled snd with possible brain damage...
Sharkey, the comments are on John Redwoods Diary. You will have to wade through hundreds of political comments to get to the few off topic comments about DNR's. I am 72 and was given 12 months to live ... over 12 months ago. I feel very well, better than when first diagnosed as my tumour has shrunk considerably, and am undergoing chemo which I hope will extend my life even more. I have been very lucky health wise until cancer got me. I have never, ever, been hospitalised and would like to avoid it altogether, if possible. I have lost a lot of trust with certain aspects of the NHS.
hi ginkgo , both my ageing parents were asked to sign DNR , my dad after his heart attack and subsequent surgery and my mum who had lung cancer and heart failure …. It was explained to them that the outcome of CPR procedures were often extremely poor as we age and could leave them more incapacitated… my mum signed hers , my dad didn’t and nobody told us his decision could be irrelevant…. X
I was diagnosed with stage 3 SCLC nearly six years ago, and was then aged 65. I was pretty fit overall.I was immediately pressured by a young GP who was on placement at my surgery to sign a DNR. This was before the chemo and radiotherapy I was scheduled to have, which subsequently shrank the tumour by half. I was feeling pretty depressed and hopeless at the time, but after a couple of days I became quite angry about this- and his bullying attitude. I penned a letter of complaint to the head GP at the surgery, who I had always found sympathetic, but who I had not seen for some years. I was invited into the surgery to discuss this and he apologised to to me.
I’m still here after 6 years, and am even more disgusted now than I was then. And yes, apparently this is common practice and GPs are following guidelines. If my medical notes are marked DNR , I was not bludgeoned into agreement ! If anything , the anger I felt put some “fight “ in me - though I hate that term when it comes to cancer.
Yes, I had a similar reaction to the doctors aggressive bullying. He talked as if I was already a dead woman walking and should just give up and definitely not waste a hospital bed under any circumstances! I was quite ill at the time but have since improved dramatically. I did 'give in' for a couple of days, and was so depressed I was considering all sorts. Then my usual stubborn streak kicked in and I realised I didn't want 'to go' just yet. I want to live while ever I can care for myself and my husband. He may have to do a little for me later on. I can do everything that is important to me, even if I do it a little slower but I have quite often feel pressured to refuse ALL treatment.
I have received horrific advice about how invasive and unreliable some potential treatment is, but when I research it, it is often described as a very safe and very effective treatment, ie. a stent in the lungs to improve my breathing. I refused it because of the advice. When my tumour shrank from 10cm to 2cm and my lung re-inflated itself (visible on xray), I was even refused a CT scan and monitoring and the respiratory consultant report to my GP said 'no further action recommended'. I then asked to see my oncologist. I have had to push for treatment all the way through.
I am afraid to get a second opinion from the NHS. I did look at getting a second opinion via a private consultation but the only private facility within a reasonable distance has my oncologist as a consultant, so it would probably be a waste of time and money, and they ignored my enquiry anyway!
I am receiving spiritual healing. I don't know whether it will help the cancer, but it certainly cannot harm providing I am also receiving traditional treatment. It has helped my shoulder, which was very painful during previous scans and at night in bed. It is pain free now and I no longer dread the scans where you have to keep your arms over your head. Some things just cannot be explained.
It's good you are getting some relief Ginko. If you want an NHS second opinion perhaps you could ask a helpline for advice. I don't know where you live but I know others with stage 4 who have been unhappy with their treatment, have managed to get a second opinion.
I'm not unhappy now. I am getting chemo although it has been delayed for some reason after the first session, and I can't find out when the next session is as none of the phones are being answered. Not even the chemo emergency number! Maybe they are on strike already.
Hi All as a nurse I am rather concerned about this post. DNAR and advance treatment plan decisions are included in the link above which should be is applied by the NHS, As a stage 4 NSCLC patient I have thought about my options but I would not be agreeing any decisions with my GP! alone! There is also a report on the CQC website relating to DNAR and support required GP myths etc.
72 does not mean one is Old, plenty of life left in us yet.
Thanks for the link, Hope. Yes it agrees with what I have learned for myself. I don't actually object to having a DNR. It was the manner of the doctor that appalled me, and the depression I suffered as a result. I didn't eat for two days, and barely drank anything and became even more ill as a result. I gave myself a kick up the backside and started to improve. A positive attitude can work miracles, but preaching imminent demise can be a killer too if the patient gives up as a result!
I was asked to sign one during covid I was 64 yrs old and have had lung cancer but recovered I was told I would not get a ventilator because of my condition and could stay at home instead of going to hospital if I caught covid and die with my family around me of course I refused to sign
I received a letter from the NHS saying if I caught covid I 'might' (the word 'might' being typed in bold) be suitable for treatment. The 'treatment' was unspecified.
I have been in hospital on a couple of occasions and heard consultants talk to patients in often distressing circumstances with family present with awful communication skills and know this can be undertaken with less than ideal interpersonal skills. The CQC was so disturbed at what happened during the pandemic with inappropriate use of DNR requests that it ordered a full enquiry and report.... the DNR doesn't actually kick in until somebody has actually died and is a decision whether or not to attempt resuscitation whereas many think it means that treatment will be denied which is not the case at all. hope this link provides more information for you and suggest you complain about the manner your GP has approached it either to the practice, PALS or the Integrated care system in your area who commission primary care. cqc.org.uk/publications/the...
Thank you very much for this Janette - very helpful. However, this discussion seems to be quite a complicated one as other ethical factors are involved. Soon after diagnosis of Stage 4 adenocarcinoma in June I logged on to my patient access and to my horror discovered that when my hospital had been accessing my notes included in this request was enquiry into end of life care. I raised this with my GP and he advised no discussion had been carried out on my end of life care, that was not the process in the practice and he was unaware of exactly what was requested. I further discovered quite a lot about the process for hospital access to patient notes as I have friends and relatives in the NHS working in this area. I am now in discussion with the Trust about how distressing this was, explanations and how to improve this. BTW very good piece you wrote in Oncology!
Thanks - sounds quite a lot for your GP practice to investigate and with the Trust - some Trusts allow a patient story to be told at their public board meetings so may be worth asking if this could be considered as communication between patients and clinicians is such a vital element of people's care.
That's interesting that patient's can tell their story to a Trust Board. Do you know how many people have done this? My practice aren't involved directly in my discussion about the hospital access to my patient notes. It is within the digital domain at the Trust.
I've looked at a couple of articles related to this during pandemic and I suspect this will be raised in the Covid Inquiry. I think there might be a DNR conflict with the medics when there is a Power of Attorney and looking into this. When my friend's mother was in her mid 70s she had a cardiac arrest in the waiting room whilst waiting for her cardiology appointment. She survived but what a good place she was in!
I was a non executive director in our PCT then CCG and our local hospital trust introduced this a few years before the pandemic as a learning opportunity for their board members to understand the very different aspects of care/communications/experience that impacted not only patients but their families too. I understood it happened in several Trusts across the UK - worth contacting their board/governing body secretariat to learn more. All Trusts and CCGs (now ICS) conduct their meetings in public and should offer the opportunity for attendees to put questions (even if as in our situation that had to be done in advance of the meeting so that somebody could be allocated to respond fully to the questioner) and if necessary more information followed up on later. The Trust should have information on its website on when the meetings are and how to submit items - if not, contact their communications team or complaints team and ask how you can have your concerns raised and dealt with. The GP practices answer to a primary care network and are commissioned by integrated care systems via an integrated care board in England (Scotland has a different system) so individual practices are actually small businesses with a contract to provide services to the NHS rather than being integrated with the many other organisations. Trusts themselves also often operate like individual businesses or groups of businesses but the idea behind the changes to an integrated care system is that there should much more collaboration. The lack of shared data across NHS organisations is a longstanding one and as you say, usually 'managed' by the Trust themselves. good luck.
Thanks Janette. It's not something I would do personally as I tend to use other routes. But as you rightly suggest communication between patient and doctor is sometimes very difficult. We have an active Healthwatch in our area who represent patients interests; and of course there were CCG patient groups in the GP practices; but people were very cynical about the CCG taking notice of the patient group. I'm involved in something else right now which is very time consuming, but it's good to know that these pathways exist.
Agree with your comments about patient involvement - some areas use 'the same faces' which aren't always representative of the wider population. I was a non executive director which is a lay person qualified in the skills/competences needed to be on the board but not from the health sector to raise questions, challenge the organisation, act as 'critical friend', and hold it to account for its action as well as being legally responsible as part of its governing body. We all had direct lived patient experience of different situations/conditions too and all lived in different parts of the area that the CCG represented but the latest reorganisation has done away with all that. When I was first appointed in 2006, it was open competitive advert with the Appointments commission and I was appointed by the Secretary of State, Patricia Hewitt to serve on the PCT at the time. It's very important that any patient public involvement is supported and developed by whatever organisation they're working with or trying to make a difference within. Healthwatch also vary considerably in their activities, representation and reputation. I think the best approach is to have a healthy mix of those involved and interested in health and social care to contribute to those making and delivering services and policy.
Sorry to hear how you were approached by the GP, and on such an ethical matter; it would be hoped that the communication would be clear, considerate, compassionate, listening to the patient and act in a non-judgmental, non-threatening manner. There have been excellent and comprehensive replies to your post and AGE UK have highlighted how this has been dealt with many people, you may wish to contact them: ageuk.org.uk/
Age should not be a deciding factor, it is a personal decision, however a doctor does the right to not perform life saving measures: nhs.uk/conditions/do-not-at...
If you wanted to discuss the GP's approach, you could ask for a meeting with the GP Practice Manager.
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