Discussion – To Resuscitate or Not?

Prof Joe wants your help. He’s sitting having a tea when the ward bell sounds – a patient has collapsed in the hallway… his patient! Prof rushes to the scene to find that the person who has collapsed is Mr Rupert Jones, a man with dementia. The ICU doctor wants to know how bad his dementia is and whether or not they should stand down the code blue.

Should they resuscitate Mr Jones?

 

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  1. Grahame 24 Nov 2015 | reply

    My father suffered Hodgkin’s lymphoma for over 24 years. His weight went from 100Kg at the beginning of his sickness to 33Kg at his death (48 years old) at home (my mother actually wrapped him in his bed sheet and put him outside the front door for the funereal director to collect & for the local GP to issue a death certificate) when he finally died.

    Both Mum & Dad agreed that once they died there body was simply a sack of fluid, bones and bacteria. Mum had looked after my Dad for the complete time he was sick (24 years), including back and forth to/from RNSH, running the family business, looking after 4 preadolescence children, and partly supporting several employees that had suffered unfortunate accidents outside of work.

    Several years later, Mum sustained a very bad head injury after being giving incorrect medication by the hospital nurse. She falling over near her bed. At least Mum had gone to her solicitor and had a “do not resuscitate” legal document drawn up, duly signed & witnessed.

    The only problem the family found was when we decided to stay with mum until she pasted away. We found that in-house accommodation was very limited, so we slept on the floor or in chairs around her bed. The health care manager withheld all food and fluids — which was a shock to us all. Additionally, we had to request pain relief injections when my mother required them (whenever she would shake & moan in pain). Mum took 10 days to pass away.

    We had a meeting with hospital management, Dept. of Health, and NSW Legal about mums death primarily being caused by the administration of incorrect medication . We decided that with the nurses working 18++ hours what do they expect. We concluded by not taking up any legal offer of settlement rather asking the hospital and the Dept. of Health to reduce the working hours of nurses so that they where more aware of their duties. We specifically demanded that no action be taken against the nurse in particular.

    My partner & I agree to having a “do not resuscitate” legal doc completed & duly sign & witnessed. It’s just finding the time to do so in out busy lives. But that is the point; if we don’t do it now it maybe to late.

    Thanks Prof. Joseph this subject needs more discussion in families and the general community. I have found that 50% of my family will not go it – Why they don’t know. I think they are just scared of addressing “dying”.

    • Prof Joe 27 Nov 2015 | reply

      Hi Graeme,
      The experiences you described are extremely distressing. We are fortunate in Australia to have a range of government, regulatory, accreditation and professional groups that oversee health and aged care. Pretty much everyone, want to improve services and the care each person receives, sadly the best intentions do not always translate to optimal care. The experiences you described are becoming very uncommon these days.
      You demonstrate forgiveness and understanding in you writing, especially insightful is considering the different perspectives/factors that impact on care delivery.
      I am not surprised that family do not want to discuss the issues as these are topics we all prefer to avoid. I think it is human nature to look for things that we enjoy rather than try to address sad thoughts or ideas.
      We should follow your example of openly discussing our preferences. Sometimes we have to wait for the right time to get people engaged.
      My condolences on the death of your parents, especially at such a young age.
      Joe

  2. Christine Connors 22 Nov 2015 | reply

    It’s not a difficult question. His quality of life prior to the arrest was very good. He has a strong chance of regaining that same quality. You shouldn’t hesitate to provide that opportunity. If his dementia had been well advanced, and his quality of life was poor, that’s a completely different situation.

    • Prof Joe 23 Nov 2015 | reply

      Hi Christine,

      It is a tricky situation and depends on whether or not his heart has stopped beating. If so, the chances of a recovery are low and, a good recovery even lower.
      The challenge is to understand what each person values in their life and what is considered a good quality? This tends to be different for each person. The key point you make is that it is about what he would want.

  3. Bron 21 Nov 2015 | reply

    I haven’t read any of the comments above. As a Carer, I have been faced with this dilemma twice in a year past. My husband does not have dementia although, every time he is resuscitated, it appears he may. Sounds silly but that’s what we think. It’s probably more about vulnerability though. Anyways, I know what my husband wants now. My husband knows what he wants. Last time, I was told by ICU to formalise our respective, individual wishes re: do not resuscitate. Yeah, I’d leave it in the hands of doctors and my husband but I have a document now. I wouldn’t like my son for example to have me resuscitated to live a less than vibrant life.

    • Prof Joe 23 Nov 2015 | reply

      Hi Bron,

      The past year sounds exhausting. Hopefully, you have been able to enjoy some good times as well. It is always a bonus if you are able to talk things through with your family and gives guidance about what to do in difficult times. The other important point to remember is many people who recover after resuscitation do live a vibrant life. The risks and benefits of resuscitation need to be considered on an individual basis and so as well as talking to your family it is worth while discussing this with your own local doctor.

  4. Margaret Brabrook 21 Nov 2015 | reply

    Whew! just watched the video. Hmmmm – he lives alone which says he is fairly competent; says he wants to enjoy his g’chn but sometimes gives the answer that he’d rather just go; what a dilemma for the doc.

    Recently watched Jenny Brokie on Insight with the same question, very interesting. was horrified to hear of broken ribs and other serious complications. Also read the book Being Mortal (daughter has borrowed it for her book club with members all about her age of 45, great!). Daughter knows — ‘do not resuscitate’ for both of us!

    I’m 79, husband Rob 85, both very healthy, I take no medication, Rob had a stroke 2 yrs ago – excellent recovery with only one problem that his peripheral vision is impaired so no driving, not sure about his medication but know he takes aspirin. Last month has changed docs and when he told his new doc that he was reducing his statins the response was ‘good’ — would have been quite different from his previous doc.

    i am unsure but I think in Qld legally you must resuscitate unless there are explicit instructions not to – heard of one person who carries those instructions with her, perhaps I should too; also heard of someone with the tattoo on their chest – DO NOT RESUSITATE! maybe I should think about that one!

    so please to have found this website.

    • Prof Joe 22 Nov 2015 | reply

      Dear Margaret,

      Not sure tattoos are the way to have your wishes known. I also imagine it would be quite painful. Cardiopulmonary resuscitation is a quite specific form of treatment and applies when your heart has stopped. There are other forms of resuscitation you may want depending on the underlying cause that made you very unwell. For example, would you want resuscitation in the form of receiving blood and fluids if had an accident that caused major bleeding? Encouraging to hear the discussion is ongoing in your circle of friends and family.
      An interesting thing to remember is that any debate can be influenced by how a situation is described—there have been many psychology research studies demonstrating that point. So focusing only on “getting broken ribs in resuscitation” starts us off on the bad news first, what would happen if you started with the good news?

  5. Sally Dunbar 21 Nov 2015 | reply

    I agree wholeheartedly with the pervious comments regarding the need for advanced care planning etc.
    Just one point: dementia is a terminal condition. However so is life. And when anyone is very elderly, say in the 80’s, perhaps it could be said that they are in the terminal phase of life even if they are currently fit and well?

    • Prof Joe 22 Nov 2015 | reply

      Hi Sally,

      Nice point. There are references in popular music to the fact that very day we live is a day closer to our death, a quite goggle search finds references to Bob Dylan and Pink Floyd on the topic. This is an interesting philosophical discussion topic. A more practical approach is to make the most of life and enjoy the now. We would encourage everyone to discuss their wishes in the event of a major illness or life threatening event. We also encourage people to remain flexible in their thinking and review the situation regularly. Decisions we make now may not be ones we want in five or even two years time.
      The problem with saying someone is in the terminal phase of life is that everyone seems to have a different view about how long that is, also it makes some people stop living life and simply wait to die.

  6. Eleanor 21 Nov 2015 | reply

    Maybe everyone should be asked at various times during their lives whether they want to be resuscitated? I can quite imagine a time when I will not want to be brought back from what nature and my body have deemed to be “my time”. I hop it happens well into the future as I have just turned 60, but I think at some point – I am hoping I will know when this will be – that I will have to “Do Not Resuscitate” tattoo on my chest. Whether that has any effect I don’t know – legally? Could you tell me Prof Joe….does such a tattoo carry any weight and would it remove an ambulance officers duty of care if I collapsed in the street and they did not resuscitate me, or would they have to do it anyway?

    • Prof Joe 22 Nov 2015 | reply

      Dear Eleanor,

      Tough question about whether a tattoo on your body is legally binding—my guess is no. Also, you here lots of stories where what you want tattooed doesn’t get done quite the way you want. There are more conventional documents that you can complete with your local doctor to indicate your preferences for treatment. Have a look at the Office of the Public Advocate and Respecting Choices program at the Department of Health and Human Services (Victoria).
      The other reason not to get tattooed with “do not resuscitate” is you may change your mind. Remember in the past people would always say, “I rather be dead than 30 years old” so who knows when you get to 80 that might be the “new fifty”. Research studies have also found that people usually adapt to their new circumstances, which should not be a surprise as life never quite works out the way we imagine, and yet we still find a way to enjoy what we have.

  7. Ron Stephens 21 Nov 2015 | reply

    I am 83 and I think that I am in the early stages of dementia, I have worried about this for some time.
    My greatest concern is not to upset my family [wife daughter son] by saying that if something happens that could end my life or leave me in a position that I need constant care or for example, haven*t a clue as to who is with me or what is going on around me then that would not be what I would want now while I am able to make mt own decisions.

    I can not think of a worse outcome for my friends and family, to know every day the type of life [if you could call it that] that I would have ‘
    Now as I have decided that I will not put these people through this [ it would be the first thing that would come to their mind when thinking of me not the many good times [ I worry that due to the current stigma ] I worry that what effect my decision to end my life would have on them. They may think that they could have done more to help me when I at my present state of mind know that they could not.
    As you can see, which ever way you go ,it is a big problem.

    • Prof Joe 22 Nov 2015 | reply

      Hi Ron,

      Please go and see your local doctor. There are many conditions that mimic dementia and can be treated. If you do have early dementia there is treatment available to slow the progression and community support to help you, and to help you continue enjoying your life.

      There are many myths and half-truths floating around about what it is like to have dementia—do not pay attention to these. Each person is different and the effect of the disease varies.

      At 83 years you must have seen and lived through some terrible things. And each time you got through it. You know life is always different to what you expect. Life with dementia can still be pretty good—the key is to know what is going on and work to a way of life that makes you happy.

  8. George 21 Nov 2015 | reply

    Hi Prof Joe,
    Thank you for taking the time and effort to air an important subject which many just don’t want to discuss. In March I was told I had 2 months to live and while you may believe you know how you would react, reality is rather different. A month later I am told they misdiagnosed me and I may live longer, but in the meantime my wife was told she had cancer and had between 6 weeks and 18 months with treatment. It forced us to have a more serious discussion regarding resus. We have made it quite clear to our doctors and to our family there is to be no resus, particularly since it could involve the brain. We have seen first hand what people and their families have to deal with when a family member has dementia (caused for various reasons). It is important that the doctors, nurses etc follow the wishes of the patient (where possible) not the family as it can be an extremely emotional moment and family may be unknowingly thinking of themselves rather than the person they love. Nice work Prof Joe.

    • Prof Joe 22 Nov 2015 | reply

      Hi George,

      Sounds like a very torrid time you and your family. It is incredibly kind and thoughtful of you to share your experience to help others. The point about listening and respecting a patient’s choice is critical. Every family wants the best for their loved one and are at times be blinded by their emotions in these difficult times.
      Having a discussion about dying and death is worthwhile though something many of us understandably want to avoid. Hopefully your experience will motivate others to be more willing to talk about the topic.
      I wish you all the best for the future.

  9. David 20 Jul 2015 | reply

    You bring up a great topic. I am really detsrissed about our nationwide denial of death. If we just get our faces lifted, get our tummies tucked and smile a lot, even when we are in pain, we will live forever. Why bother? The extreme measures taken at the end of life can be degrading and extend years of misery. The journey of the older years is toward death. At age 75, my Dad had a heart attack and collapsed in his rose garden. Would they leaveft him there to die? No, he was resucitated, and went through all sorts of procedures to keep him alive for three more years. His quality of life was shot to Hades. After several of abuse’ at the hands of the medical people and his wife including several bypasses, treatment for diabestes related problems, chemo, etc. he died from cancer of the bone (very painful and slow process). My stepmother kept on trying to keep him alive (while blocking his children from visiting him). Finally, he told her, you can’t handle this, and checked himself into a hospice and were he was alone when he died.More than once, I have told my husband, if you find me in the garden, just leave me there for recycling. I would rather die with my nose full of the scent of roses and violets than oxygen burning my nostrils and and several tubes protruding from my body.

    • Prof Joe 13 Nov 2015 | reply

      Dear David,

      The experiences you described sound traumatic and exhausting. You highlight the differences of opinion we have about the life, getting older and what makes us happy.
      I like to think that our journey of the older years is not so much toward death but to living a life of our choosing, drawing on our knowledge and experiences of our earlier years. There are many positive stories of ageing well and most older people, over the age of 85 years, still live happily at home.

  10. Joy Culver 5 Feb 2015 | reply

    Have had this conversation with my family. No resus………My husband had a beautiful death in 2013 from heart failure, no interference, he died at my daughters home being lovingly cared for by our family and wonderful Uniting care- Carers. I want the same lack of interference medically, I want to die as I lived…close to my family if it is manageable, at home. The only thing I don’t want is pain, I’ve had a good life and I would like a good death.

    • Prof Joe 13 Nov 2015 | reply

      Hi Joy,

      Thank you for sharing your experience. It is always reassuring to read about the times when people receive the care they need and want.

  11. Jo Niggemeyer 20 Jan 2015 | reply

    Dementia being a terminal illness, we don’t hear that often, but it’s true. In aged care there is no easy answer to resuscitate or not, so we ask the resident/family on admission what their wishes are, and these are documented on their ‘Terminal wishes’ or ‘End of life’ care plan. As an RN, I am the person making the decision to resuscitate or not. In the case of an arrest, I check the history for the resident/family wishes, and follow accordingly, if that is not completed then I resuscitate, unless the person has been ‘down’ for a prolonged period of time.

    • Prof Joe 13 Nov 2015 | reply

      Dear Jo,

      Yes, there is no easy answer in this situation. Hopefully, by sharing our experiences we promote a broader discussion.

  12. john r dalton 12 Dec 2014 | reply

    In the absence of advance care plans, in this case, I suggest that time is the deciding factor. If his heart has been arrested for 2 minutes, his brain is likely dead and he should be allowed to continue the natural course of dying.

    • Prof Joe 13 Nov 2015 | reply

      Hi John,

      The potential for brain damage is greater the longer a person is not breathing. The potential for recovery also depends on a range of other factors. What we were hoping to do is draw people’s attention to the need to discuss options well before this situation occurs.

  13. Michaele Rawson 9 Dec 2014 | reply

    What did he want? His chances of surviving CPR and then discharging are <5% if that…the chances of a good neurological outcome…dismal…for every insult a person with dementia has, functional impairment progresses… he has a terminal illness that is progressive, he could die while he's still able to enjoy things or we could keep him alive until the degeneration of his brain leaves him unable to comprehend his circumstances or control his bodily functions in a dignified manner. While I acknowledge, he is still in the phase of his dementia somewhere between "preserving autonomy" and "preserving safety", this insult – if treated – will likely progress his condition to completely dependent for at least a few months if not permanently. The cause for his arrest may be metabolic, what if it's PE (hospital bound patient with cancer)? What if it's coronary artery plaque rupture? What if the "PEA" is profound shock 2ndy to sepsis? How aggressive should we be before we acknowledge that we may just be putting him through a lot of painful investigations and interventions in the last months of his life? His daughter may not be able to intellectually or emotionally process his prognosis for a variety of reasons, including lack of education from health care professionals – but in the end, she is not our patient, as important as her wishes are.

    • Prof Joe 13 Nov 2015 | reply

      Dear Michaele,

      That is a very detailed analysis and highlights that there are many “what ifs?” If we could better predict the future, complex decisions would be a lot easier. One of the challenges in health care is that we have information that applies in general BUT we cannot predict what happens to an individual. If we accept that 95% would die, the chances of survival are very slim—BUT—we do not know which outcome awaits Mr Jones. All the more reason that we find ways to discuss the issue with people and their families. You also make the crucial point this about Mr Jones’ life and it is his wishes that must be respected.

  14. Merran Gibson 16 Oct 2014 | reply

    Wow, we need to get this conversation out in the public domain. So many variables, so many who want to have input. Beneficence v maleficence is a sensible approach. And yes, dementia is a terminal illness

    • Prof Joe 13 Nov 2015 | reply

      Greetings Merran,

      Thanks for your comments and support.

  15. Sharon Gibbens 15 Oct 2014 | reply

    What a great discussion starter. Emphasises great need for ongoing Advance Care Planning prior to events such as these. I have had these discussions with my family and father who is 83 and has Dementia. He has said he doesn’t want to be left in a vegetative state and I couldn’t assure him he would fully recover from an arrest situation so I would be sitting by his side and letting him go. What would I be saving him for? To die from his dementia?? Dementia is a terminal illness. Well done with discussion

    • Prof Joe 13 Nov 2015 | reply

      Hi Sharon,

      Thanks for the compliment about the video. The team responsible for the video is a fabulous group of people who essentially have given much of their time and effort for free. I would be lost without them. It is very positive that you are able to discuss these concepts with family, certainly not an easy thing to do.

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