What’s the deal with Resuscitation?

It’s hard to miss this topic which has exploded in the media again this week. The lady in front of me on the bus home on Wednesday was reading the Daily Mail. The headline “Do you want us to let you die?” was brandished across it above a large photo of Cliff Richard. Luckily I’d learned about the story the previous evening from Twitter. It pertains to the experience of Mrs Lilley, Roy Lilley, the health policy analyst’s mother, who had had a recent negative experience when a district nurse visited to discuss Advance Care Planning, including the ever emotive topic of resuscitation.

I made my own decision not to be for cardiopulmonary resuscitation the day after I discovered my cancer had spread to my liver and bones. I wanted it to be clearly documented at a time when I had full mental capacity that I did not want to go through a futile, brutal treatment that was never going to somehow magically take my cancer away. I have a pelvic malignancy so the chances of me dropping dead from a pulmonary embolism are fairly high. I have also in my time been very ill following chemotherapy with serious infections, again another risky time.

There is no way I would like to have my chest exposed while somebody attaches large electrodes and does chest compressions. Another member of the team would most likely put a tube down my throat or use a tight fitting face mask to ventilate my lungs. Somebody else would no doubt be digging around in my arms with needles looking for a vein to insert a cannula, which because of the situation and my past history would be very difficult. I would also probably suffer the indignity of someone exposing my groins while they tried to take blood from the large artery there to assess my oxygen levels. There would be lots bleeping and raised voices. Depending on my heart rhythm I may need electric shocks in an attempt to restart a normal rhythm. The voltage used is so high that patients physically jerk as the shock is delivered. Drugs such as adrenaline may be administered. There would be empty packets from the equipment discarded on the floor around my bed. The picture I am painting is, even in the most well run cardiac arrest call, of a chaotic scenario and cannot be aligned in any way to my vision of a peaceful death. Because when resuscitation is used the patient has died. Their heart and lungs have stopped working. In the majority of cases we are not successful. If we do manage to re-establish a heart rhythm then the risks of the patient having suffered a hypoxic brain injury are high.

I talk to patients and their families about resuscitation every day I work. I look after frail, older adults and it is a question we need to consider very frequently. Some people would argue a question we should consider for everybody. In our population success rates are even lower with chances of surviving to discharge from hospital in the pre-morbid state even lower again. The risks are higher too. Anyone who has done chest compressions on a frail patient has probably felt that terrible crunch as you break ribs. Cerebral hypoxia is more common too as the blood supply to the brain is less good. This may manifest as agitation or coma.

Of course how these conversations are handled takes time and requires sensitivity. It should be a conversation, not just a tick box. Previous knowledge and opinions should be sought, information should be given, thoughts and ideas elicited and ideally both parties will agree. It is important to emphasise that a DNACPR decision does not mean we are going to stop actively treating the presenting health problems. It is also important to agree when a decision should be reviewed as with most things in Medicine it does not have to be set in stone forever more.

But we do as a society have to accept that some health conditions are incurable. That as we age our bodies do eventually wear out. We are all going to die, nothing in life in more certain. Whether the media want to make us all more frightened of this fact is their business, what I want to focus on as a clinician is achieving comfortable, dignified deaths for my patients when that time has come and hope that somebody will do the same for me when it’s time for me to meet my maker too.

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45 thoughts on “What’s the deal with Resuscitation?

  1. I am deeply involved, as a NHS volunteer, in the rights for people at the end of there life weather it be hours or a year. It surprise me how unprepared people are for their own death,which is inevitable. They do not understand that significant others need to know their final wishes. As volunteers we spend hours trawling through legalities and documents relevent to this issue. Hopefully we help people understand all the issues involved, a very difficult topic to comprehend when one knows they are not going to get better,age is irrelevant it can and does happen to anyone. I personally wish never to be resuscitated unless someone guarantees me that my life will be the same, and unless one has special powers this can never be a guarantee.

  2. Thank you for the clear and concise way you have dealt with this. My father had a major cardiac arrest and they spent 2.5 hours resuscitating and stabilising him. He survived a further 5 weeks during which he was terrified to go to sleep! I wonder if society belives that because we can do certain things that we must at all costs keep someone alive instead of allowing them to go when the body says so. Once again, many thanks for your thoughts.

  3. Kate

    Your words as ever are so honest, heartfelt and passionate about a subject you see so well as both a clinician and a patient. A comfortable, dignified death is the one thing that we should all be able to be certain of. It is the one thing that scares me the most about when my leiomyosarcoma ultimately takes control…….I know it’s going to kill me and when the time comes I don’t want to suffer any longer than is absolutely necessary……as you so rightly say, it’s not exactly like prolonging my life will enable the cancer to be cured, so why bother. Peaceful and dignified is all I wish for.

    If people will take notice of anybody on such an emotive subject it will be of you Kate as you are without doubt a very special lady. Take good care and keep looking forward to next years goals xx

  4. Thank you for writing this. It was hard to encourage my elderly mother, with osteoporosis, to sign a DNR . I can’t imagine the nightmare a resuscitation would have been.

  5. Kate this piece is so thought provoking, I just had to reply. I teach nursing and would like to use your thoughts on resuscitation when teaching student nurses. I also have another little idea that I would like to discuss with you privately via email if you would be so kind as to get in touch. Kind regards Gary.

  6. Thank you Kate for bringing so much clarity to the issue. I think it is important that people understand that it is traumatic and often futile, and that there are times that it is better to let someone die in peace. You describe this beautifully. As you point out, opting to not be resuscitated does not mean opting for no treatment. Empowering people to understand their options and express their wishes is essential. Thanks for sharing your perspectives on this.
    Best wishes, Jacquie

  7. Well said. It is sometimes hard to convince patients and their family to see it the way we do. Equally hard also for doctors to do nothing. As you said, it is all about the dignity of dying and once it is accepted, it is amazing how much we CAN do to help with this process.

  8. I hope your description of a typical CPR scene is widely read because I’m sure there is a general ignorance as to what actually happens. I had a conversation about this recently with my mother because she has COPD and is on oxygen 24/7. She has definitely reached the stage where quality of life rather than quantity is her preferred option and has had her doctor sign a DNR form. One can feel helpless in the face of a loved one’s terminal illness but if you can help them to have a good death by having that conversation then you will be doing them a service and ease your own grief at their eventual passing.

  9. Thank you for this Kate. As a retired nursing sister often in charge of a resuscitation attempt I often thought our humanity was misplaced and instead of the undignified chaos of the scene how much more understanding, dignity and loving care could be expressed by a recognition of the end of that persons journey to God, a recognition of their need.

  10. Having made the decision on behalf of elderly parents to advise no resuscitation or extraordinary measures due to their inability to give consent or not; this is a big topic. My mother has recently died after multiple illnesses but we also withdrew consent after a battle with doctors to in humane cancer treatment. Sad as it is the memory of a dignified death as my mother and father in law experienced with only little medication makes it a little more bearable. I have made my own wishes known to many people as this gives others the confidence to act accordingly at a difficult time.

  11. Thank you for this, Kate.
    We had a friend living with us who decided to sign a DNR in January. He had bowel cancer which spread to lungs and brain. Also he had AF. When he died a few weeks ago we understood what a peaceful death was. The thought of him going through the process you have described just doesn’t bear thinking about. He had no doubt he had made the correct decision, he was right.

  12. Thank you again Kate. The Daily Mail
    Headline is wrong on so many levels. But mostly because it is meant to be negative and discussing death and how you want to die is surely only a positive thing. As a fellow geriatrician, I am constantly amazed by just how many people have reached the stage where it is recognisably necessary to ask the question and yet neither they nor their loved ones have considered the possibility that they might be ‘at risk’ of dying. It’s a bigger topic for societal discussion I think, just how good we are generally at avoiding it.

  13. Dr Kate, as a retired health professional who worked in emergency medicine I recognise and concur with your description of the reality of CPR and its brutality. It certainly has a place in emergency care but that place is not where life is only sustainable at the cost of intractable, pain, anguish and indignity with no prospect recovery or of escape from them except by being allowed to die.
    In the interests of balance and factual accuracy the Daily Mail should offer you a column. The fact is though, that the DM is not interested in either. Shameful sensationalism and mudslinging at any not for profit social provision is its raison d’etre.
    You have shown courage, good sense and, a quality of the utmost importance in a medical professional, compassion throughout your illness.
    I wish that your final days are as peaceful, comfortable and dignified as your terrible illness will allow.

  14. Thank you Kate, we have the facts of life on a daily basis but shun the facts of death. Perhaps a tattoo DNR on ones chest would be a good idea.

  15. I am a medical SHO, so I have been involved in more cardiac arrest situations than I could count, and I’ve had the resuscitaction discussion many times too.
    My grandad died this week. He had heart disease, COPD and chronic kidney disease, and knew that his days were numbered. Fortunately he’d also thought about resuscitation and decided long ago that he didn’t want to put himself or us, his family, through it. His death was comfortable and dignified, and he went the way he wanted to go, surrounded by the people who loved him instead of a medical team trying in vain to restart his tired and failing heart.
    It makes me so sad that the media are demonising end of life care yet again. We only get one chance to get it right, and cardiopulmonary resuscitation is not always the answer.

  16. Hi Kate, I had the pleasure of listening to your talk at CRH a few months ago and you are truly inspirational. The one thing I think the medical/ nursing profession has got wrong is the naming of DNACPR forms. It sounds such a negative…..as though some ‘treatment’ is being withheld, perhaps if it was approached from a different angle such as ‘allow a natural death’ people would be more amenable. As a nurse I know the brutality/ reality of resuscitation attempts and as a daughter when being told that my parents had a terminal illness (years apart) was surprised that none of the medical staff had initiated the conversation with either of them. Both of them were ‘allowed to die naturally’ because I spoke to their doctors and asked that they consider a ‘DNACPR’ as sad as it is I knew it was the right decision. I knew that had either had a cardiac arrest and been resuscitated that there was a very high chance that they wouldn’t have been the same person afterwards and prolonged the pain and suffering.

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  18. Kate I am in awe of your bravery, selflessness and wisdom. This blog should be shared widely. As most things medical, processes such as DNR are kept a mystery to the general public and what is understood about it is likely based on less than representative presentations of doctors and nurses saving lives in sanitised, fictional ER television soaps. Public expectations of what resusitation both entails and can achieve are therefore way off the mark and feed into the perception and mistrust that Wilma refers to about ‘withholding treatment’. Until we start sharing some difficult truths with the public – including the mad statistics that show it doesnt restore life for a large proportion subjected to it, and the less than brilliant outcomes for those who are ‘brought back’ – gutter publications like the DM will always win the day as the patient’s ally. I think it is telling that a recent survey of American doctors revealed that almost 90% would opt for DNR in the light of themselves being diagnosed with terminal illness. That is because they know the reality of it. No-one likes to talk about death, not least their own, but many other difficult and deeply entrenched taboos have been broken and conquered so it can be done. Kate your amazing efforts can only inspire that momentous debate.

  19. Kate you are amazing, I have similar thoughts but also have an added problem, I am the owner of a Nice little CRTD device with a built in defib, When do they deactivate it, I was a patient on a very busy cardiac ward and watched as a very frail elderly gentleman was DE fibbed 17 times before somebody thought to deactivate the ICD, it was awful for the relatives, I am hoping with awareness to get changes,

  20. Reblogged this on dawntweets and commented:
    As a woman of Stirling inspiration I dedicate this to one of the bravest women on twitter. Her blogs are posted as she herself struggles with terminal cancer. A Doctor in the know! Many thanks for the great insight you show us Kate.

  21. As a doctor too, I feel the same as you do Kate and I would definitely make that DNACPR if I am ever in that position where that conversation comes up. CPR is brutal and definitely not for everyone.

  22. As someone who has been first on scene to several patients as a volunteer Community First Responder, DNAR is at the top of my list of thoughts.
    In the South-East, the DNACPR form is printed on lilac paper, and known as the “lilac form”. I remember one day when I had 2 patients, both elderly ladies, one after the other. The first was in a Care Home. The resident was in bed, she had been feeling ill and was having trouble breathing.
    One of the first things I got shown by the carer who was with her was her “lilac form” at the front of her notes. It’s one of the first things that this Care Home discusses with new residents.
    I introduced myself to the lady, got her as comfy as I could, gave her some oxygen (which helped a bit) and handed over to the ambulance crew when they arrived, but stayed to help. The home had phoned her daughter, who was on her way.
    Her condition was deteriorating when I got a call from Ambulance Control – could I go to help another crew at a cardiac arrest.
    I arrived at the house to find another lady, probably a similar age and similar frail build. She was on the floor in the lounge, stripped to the waist, with defibrillator pads stuck on her chest, and one of the crew doing chest compressions whilst the other breathed for her with a bag-and-mask resuscitator. I took over on chest compressions so the paramedic could try giving her drugs and fluids. Eventually we got a pulse, a second ambulance crew arrived, and she was taken off to hospital with three people still working on her in the back of the ambulance.
    Her family were told “it’s not looking good, but we’ve done what we can”.
    I don’t know the outcome of either case, but I suspect the first lady was allowed to die in peace in her bed in the care home, and the second probably got declared dead shortly after arriving at hospital, having had her chest squashed repeatedly, a tube in her mouth, an IV line in her arm, and quite a lot of distress for the family members who had watched the whole process.
    All for the want of a bit of paper that any GP can provide.

  23. Pingback: What's the deal with Resuscitation? | Health Bl...

  24. I am in awe of you Doctor Kate. You have encouraged me to have this discussion with my husband tonight. I have a ‘few’ ailments still but I survived cancer and thank my God every day for that. I will not be battered and bashed for a few more hours/days here on earth; when I need to go I will move on happy and loved. I know I will have been cared for and allowed to pass to the next stage of wherever!!!! I will be calm and peaceful. That conversation has been had tonight amid tears and laughter . . more of the latter. Thank you Kate. What a star you are!!!

  25. Your writing will help greatly with understanding what actually is the deal with resuscitation. Having been involved in local policy and procedures around resuscitation decisions, I am acutely aware of the implications of getting it right. This will include for us some kind of public education and I hope our local press take a mature approach.

  26. I am just in the process of completing a write-up of a ‘survey’ I sent to England’s Clinical Commissioning Groups a few weeks ago, with the intention of ‘lighting a few fires’ and prodding someone into actually sorting out the total mess ‘around dying’.

    It isn’t so much what clinical treatments are and are not available, and assessments of their effectiveness: it is more that almost nobody seems to ever talk about ‘the dying bit’

    http://www.bmj.com/content/347/bmj.f4085/rr/652862

    and that most professionals seem to misunderstand the law (the Mental Capacity Act being the main piece of law), plus [for end-of-life at home] very few people these days have had the experience of caring for a loved-one at home through the entire process all the way to the death.

    The whole situation can be a nightmare, for patients and especially for live-with relatives: many clinicians seem to think that Advance Decisions are ‘a statement of wishes’ when in fact they are an instruction, they seem to think that a DNACPR Form signed only by a doctor is ‘an order’ when it clearly isn’t legally an order, they think that a Welfare Attorney is there to be consulted about ‘best interests’ when in fact a suitably-empowered welfare attorney is there to ‘make’ the best interests decision, etc.

    Throw in the post-mortem concepts of ‘expected’ and ‘unexpected’ death, which are unsuitable for known end-of-life (defined as ‘final year’) home deaths {it is trivially easy to prove, that the distinction between an ‘expected’ and an ‘earlier’ death must be ‘very blurry}, and the current situation is a muddled mess in simple legal/logical terms.

    When you add in the emotional aspects of someone you love dying, and the fact that usually everyone closely involved with the patient (the family, the GP, the regularly-attending district nurses) is usually trying to do their best to help the patient, then the current guidance is totally inappropriate, and needs urgent revision/improvement.

    I’ll stop here – I could go on for pages and pages, about this topic !

    Mike Stone

  27. Hi Kate,
    I was so fortunate to have just stumbled upon your blog. Your ability to connect through words is amazing and an inspiration to us all. As a physician myself, I couldn’t agree more with your approach to dealing with the healthcare system as a patient and facing death that is inevitable to us all. You may have seen this recent article in Time by another physician, but just in case you didn’t I will send it along (http://time.com/3194806/why-dying-is-easier-for-doctors/).

    I am anxious to start reading your books on Kindle and look forward to following your blogging journey. Thank you for positively impacting the world on a global scale.

  28. HI Kate,PLEASE PLEASE PLEASE watch “I BEAT CANCER WITH VITAMIN B17 on YOUTUBE,A Lady called SANDY with Four Chrildren and Five Tumours is now CANCER FREE,PLEASE Watch it KATE,much love Lee and Margaret,GOD BLESS.

  29. Thank you so much for this, Kate. I’m a third year nursing student, and remember reading some of these headlines before I started my course. “How could someone not want CPR?” I thought. “Don’t people want every chance to live?” Watching the chaos and heartbreak as the crash team worked on a vibrant, wonderful man in his late thirties with pulmonary fibrosis soon taught me that there IS such a thing as a good death, and has healthcare professionals, it is the penultimate act of compassion we can do. (The final act of compassion is what happens after death, which I feel is the greatest privilege we are privy to.)

    Thank you for inspiring me to be a better nurse; to recognise that when we cannot promote life and living, we should hold our heads high and do our best to advocate for our patients and ensure that their last days in this world are as peaceful as they can be. I’m starting a placement on an oncology ward soon, and I truly hope I can care for people as individuals and support them back to health, or support them as their health declines. Through you, my intent to work with older adults has been consolidated, and I know I’m not the only one who has been inspired by your honest, sensible, and eloquent words. Know that however many more things you manage to tick off your bucket list, your wonderful words and actions are much more than a drop in the ocean. Thank you, from the bottom of my heart.

  30. Hi. I really enjoy your blog. I am impressed by your writing style, your courage and humanity. I am battling a rare form of cancer called chordoma. Can I place a link to your blog on my blogroll?

    Thank you.

  31. I too have had experience of the end of life as both carer/relative and as a nurse. Death is a process and not just one single dramatic event, something these hysterical newspaper reports fail to consider and as part of the process, difficult conversations have to be had. Speaking both personally and professionally, some of my most moving moments have come from these conversations when the patient is able to talk about their deepest fears and concerns. The sense of relief achieved and felt by them, their families and staff was tangible. I have been with two of my close relatives at the time of their deaths, both peaceful, all pain and symptoms well controlled and there was a sense of pride in our all working together to achieve this- not just ours but the dying person too.

    I have written about my experiences if you are interested in reading them Kate. Here’s a link – http://goo.gl/LNSGkz

    I wish you well Kate. There are no more words really .

  32. I had a cardiac arrest on 8th July this year when I gave birth to my son. It took them 12 minutes to get my heart working again, whilst resuscitating my newborn son at the same time. I woke up 5 days later with no idea I had ever been pregnant. I spent 10 days in the ICU and was discharged after 2 weeks. It would have been sooner but I had to wait for my son to finish his treatment. He was 6 months old yesterday and I am here to see him and his brothers grow up. I will be ever grateful to the team of people who refused to let me stay dead.

  33. Beautifully written. As a relative of one of your elderly patients, I have to say your care and compassion in the last few days of my Aunties life made such a difference .DNR is not a subject anyone wants to hear, but to be explained to and your loved one to be treated with such dignity,helped eased that awful overwhelming sadness. Amazing inspirational lady and truly an asset to the care of elderly patients. You certainly made a difference ,Thank you

  34. Wise words Dr Kate.
    When my 81 year old mum died quickly and peacefully following a short illness, I stopped the ‘crash team’- awful phrase- from resuscitating her, and kept my promise.
    I have never regretted this,it was what she wanted and, having worked in the NHS myself, I knew that dying and death are not given the respect and space which they deserve.
    Too many people are routinely resuscitated, however inappropriate the circumstances.
    After a resus training session, I asked for the right to refuse to participate in. Certain circumstances : this went down like a lead balloon!
    I have a Living Will and fully intend to ensure that I shall not be kept alive against my will.
    My best wishes to you.
    Wendy

    • It is very difficult to stop 999 Paramedics from attempting CPR, even if you have got a valid written Advance Decision, unless you are obviously towards the end of life. In fact, it seems [in practice almost] impossible to forbid CPR for an arrest when a GP would be unable to certify the death (in other words, for a ‘sudden’ CPA) and to also allow people living with you to call 999, to check that you have arrested and not, for example, collapsed but not arrested. If you have decided that the uncertainties associated with a CPA and then ‘successful’ CPR are so great that you would prefer to be left to die if you arrest for any reason at all, despite your situation being ‘reasonably healthy but quite old’, but you would want active treatment for something which probably would not kill you but might leave you damaged (for example, if you collapsed because of a stroke), you simply cannot achieve this, despite the law around Advance Decisions seeming to be designed to allow you to achieve it.

      In fact, the recent revision of the BMA/RCN/RC(UK) Joint CPR Guidance, even seeks to prevent Welfare Attorneys from making the best interests decisions which they were specifically empowered by the patient to make (see my third post at 01/12/14 – 14:16):

      http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=748&forumID=45

      It is very difficult indeed, to exercise your legal right to refuse potentially life-saving treatments, if you are unconscious: clinicians are very strongly motivated by a desire to ‘help/save people’, and then when clinicians become ‘legally nervous’ they almost invariably default to ‘safeguarding the patient’s life’ as opposed to safeguarding the patient’s right to self-determination.

      So Wendy’s ‘I have a Living Will and fully intend to ensure that I shall not be kept alive against my will.’ is in practice very challenging, especially if you are in your own home.

      I keep ‘moaning to ‘the NHS” about this !

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