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Between Life And Death: Why medicine is art as much as science

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David Menon David Menon | 08:53 UK time, Monday, 12 July 2010

About 18 months ago, I was approached by the BBC asking whether we would be interested in making a programme about critical illness, death, and dying.

I work as a consultant in the Neurosciences Critical Care Unit (NCCU) at Addenbrooke's Hospital in Cambridge. Our unit is one of the largest in Europe, and takes care of patients with severe head injury, brain bleeds and stroke.

We were interested, but also a bit wary.

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The successes of modern medicine are often rightly publicised, but we rarely discuss what happens when medicine fails.

For example, death is commonly viewed as an event which involves cessation of the heartbeat. In actual fact, it is irreversible damage to the brain that decides whether a person survives or not, and the heart needs to have stopped for several minutes before such damage results.

Indeed, it is common, as with head injury, for the brain to be irreversibly damaged, while the function of the heart and lungs is maintained by intensive care.

People have little concept of the varying degree of brain injury that result in brain death, coma, a vegetative state, or severe disability.

A discussion of such difficult topics is important in a civilised society, and helpful to families of patients. I felt that the knowledge from a well-made programme could inform such a discussion.

However, there were also significant pitfalls in making such a programme. There were difficult issues about filming unconscious patients who could not provide consent, and we were concerned that a poorly made programme would display patients as exhibits.

Also, as you might imagine, there were sensitivities about being recognised as an expert on dying! It was clear that there was an opportunity to make a very good programme, but also the danger of making a very bad one.

We thought long and hard about the issue of consent, and finally took the same approach as we would for research in this setting.

We felt that if there was a wider good, the patient was not put at risk, and this was likely to have been what they would have wished, it was appropriate to include them in the programme.

In order to understand whether or not patients would have wished to be part of the programme, we sought advice from those that knew them best - their close families.

We also agreed that patients and their families would have the right to withdraw consent to participate in the program up to the point of transmission.

Nick Holt (director of the film), and Marina Parker (producer) spent several months in the NCCU and Emergency Department (ED) at Addenbrooke's even before they even started to film.

In the succeeding months they essentially became part of the NCCU team, and shot nearly 90 hours of film! Their interviews took them right across the spectrum of clinical activity in the NHS, including the ED, intensive care units and operating theatres; the wards and rehabilitation centres; and even the mortuary and anatomy dissection rooms!

In the event, the programme's editors chose to focus on three patients who had been through the NCCU. Their stories make unconventional television viewing.

Richard was one of those people. He was admitted with an isolated spinal injury, but then fell into a coma, from which he showed no signs of emerging.

The consequence was that we had a man in his forties who was unable to respond to us and who, his family informed us, had previously expressed the conviction that he would not want to survive in that state.

Richard Rudd (left) and his father, also Richard

Given that this was the best information we had of his wishes, we were willing to be guided by this, but decided to wait a bit longer to clarify the situation.

When, after a period of waiting, he showed voluntary movement of his eyes, everything changed. We could use these eye movements to document "yes" or "no" responses, and through such communication, allow Richard to have a say in his own care.

This was crucial, because we know that there may sometimes be differences between what a patient declares when he is fit and healthy, and what he feels when he is the one in the hospital bed.

As time passed, we were confident that Richard had enough comprehension and memory to make these interactions meaningful. We were then able to establish, on three successive occasions, that he understood what had happened to him, and that he was happy for us to carry on with his treatment.

The presence of such communication also enabled both the ICU staff and Nick to directly ask Richard whether he was happy to continue to participate in the making of the programme, and we be certain of the fact that he was in agreement with this.

Since completion of the programme, Richard has continued to improve very slowly.

However, we need to ensure, through continuing communication, that he remains happy with treatment. Given the length of any potential recovery process, it is also essential that we maximise his enjoyment of life, particularly in terms of interactions with his family and friends.

Arguably, none of the three cases that are featured might be considered a success.

However, I hope that viewers will take away a sense of the uncertainties that medical teams sometimes face, and why good clinical care remains just as important in these difficult settings.

I also hope that the programme shows why medicine remains as much an art as a science, why good clinical care requires wisdom as well as knowledge, and that common humanity does not need to be a casualty of "high tech" intensive care.

Many of the staff on the unit were initially wary about the filming because of the fears expressed earlier in this discussion. Despite these fears, we chose to go ahead, because a well made programme could illuminate a very difficult topic, and inform the public about this grey area between life and death.

In the event, any fears were completely unjustified. Nick and Marina were absolutely fantastic, and have become good friends not just to us, but also to the patients' families.

Their feedback has been uniformly positive. Indeed, after they viewed the programme, the feeling that came across was that it gave them a voice that they would otherwise not have.

My only regret is that, because of the need to keep the program to a manageable length, we could not tell all of the stories that we recorded.

Still, there is always a next time...

Professor David Menon is a consultant at Addenbrooke's Hospital, Cambridge.

Between Life And Death is on BBC One at 10.35pm on Tuesday, 13 July and on BBC HD at 00.00 on Wednesday, 14 July.

Comments

  • Comment number 1.

    Hello! I'm an occupational therapist from Brazil and I work at a local hospital with people in similar conditions as in this article. I'd like to know where can I find that Documentary, if it's available to buy or if I can order it from the BBC. Please let me know!!
    Peace and Good!

  • Comment number 2.

    "Art" is defined as the expression of creative skills. Evven when or if well intentioned, the word "art" in reference to science or medicine can be wrongly understood and interpreted. It is not an art to practice medicine or try and help people in medical terms, or for a veterinary to try and help an animal in veterinarian terms. It is a STUDIED practice, both the lack of study can influence people's lives in potentially dangerous outcomes and similar outcome may happen to animals in veterinary practice through informal discussion or lack of study.
    Ethic is part of both medicine and veterinary practice, not so much from, say Picasso or Michael Angelo.
    In a world where medicine relies so much on digital instruments to keep people alive, who has the last decision to make? The doctor, the patients, the next of kin or a digital decision?
    Neuroscience is based on neurons and minimal electrical conduction and connections trhoughout the body and the brain, any outer interferences could influence the outcome of any patient or animal at any time in a world where the digital world has a control of its own over people and animals.
    There is no grey area between life and death, perhaps only that of the digital control.

  • Comment number 3.

    I've just watched the programme, and I doubt I'll see a more moving, dignified and heart-rending piece of television.

    Would just like to say, I'm in complete admiration for the team at the hospital, who balance the most difficult decisions with grace and professionalism. What an amazing job you perform.

    And the families of patients and the patients themselves - well, words fail me. Such love, care, respect and dignity, aligned with immense courage. I genuinely hope that all involved find as much peace and happiness as they possibly can. Each and every one of you is remarkable.

  • Comment number 4.

    the most thought provoking and moving piece of television I have ever seen in my 47 years.
    I saw myself in Richard, my wife in Bekki and my daughter in Sam. Heaven forbid that any of us ever need go through their experiences, but should we be unfortunate enough to have a serious brain injury, i now have a hope that people around us would start afresh in terms of our wishes for quality of life and life itself. Perhaps ask the question did he/she really mean it when he/she said he/she wouldn't want to go on or was it a throw away comment in the emotion of a late night conversation? What would he say now if he could speak/sign/blink??? Find a way to ask!
    I wept at Sam's father's indescribable grief and his change of heart at the end of the programme, wishing he could have any tiny part of his daughter back, his regret at having wanted all of her or none at all. I'm sure he made the best decision for her though as a father probably not for himself, a most unselfish act, I weep for you!

  • Comment number 5.

    Dear Professor Menon
    I have just watched the documentary (twice!) I just wish there were more doctors like you and nurses like Sandra. I have recently lost my Granfather who passed away in an intensive care unit in hospital. I know that we all have to die eventually, but I would have come to terms with it easier if I had been better informed about what the doctors were actually doing. It was hard to get professional information out of them and all our conversations were of the sort: this is most likely the time, be prepared. It would have helped me if I could see any sign of willingness to actually fight for his life rather than just follow the procedures because that's what the law requires doctors to do. Since then I have been thinking that dealing with patients becomes mechanical for doctors with the time and probably developing certain immunity is a way of coping with work in such deeply moving circumstances. I am glad to see this is not always the case. Thank you for restoring my hope in doctors!

  • Comment number 6.

    I watched last nights programme and couldn't help but be affected by it. Two and a half years ago my son, Matthew, was accidentally shot in the head with a high powered rifle while on an agricultural exchange trip in New Zealand. Needless to say he wasn't expected to survive and we faced unimaginable emotions and despair on the 25 hour flight to New Zealand. On arrival at the hospital in New Zealand nothing could have prepared us for what we saw and faced and we really felt for those three families in the programme last night. In many ways Matthew's prognosis was worse as the bullet had entered at the back of the head, shattered on impact, with the biggest pieces travelling right through his brain and lodging on the hard bone of the eye socket. He had lost a big chunk of his brain during the accident and we could still see it being forced out through his ear when we arrived at the hospital!

    We asked ourselves all the same questions as the families in the programme last night and even considered refusing consent for a life saving operation, as we didn't want to condemn Matthew to a life of 'living hell' with no quality or enjoyment, which seemed the inevitable outcome.

    We feared that we had lost the person we knew and loved and it was heartbreaking to think that, even if he did survive, we would find ourselves left with a person we couldn't recognise.

    However to cut a long story short, he defied everyones expectations and has made a recovery that can only be described as a miracle. Over a period of months he gradually came back to us one step at a time and we do have back the same person with the same memories and personality and none of the inappropriate behavior that is so common after such an injury. Initially he was severely physically disabled, but he has been gradually overcoming those problems and has even learned to walk again, which we were told he would never be able to do. He now lives in his own house with the help of a support worker, but is reasonably independent and really happy with his life. Although heartbreaking at first, it has been a joy to watch him recover and we have been able to draw strength from every new achievement along his long and rocky road to recovery. Although he will now not have the same life ahead of him there is nothing to say that it will be any the less enjoyable.

    Although two of the families last night may not have had such a happy outcome, there is often hope in the most desperate of situations. I would say it is always worth giving people the benefit of the doubt in these situations and if we had believed and accepted what we were initially told then we would no longer have our son with us. For the doctors and staff performing this difficult work, you are fantastic people and never give up trying to help. Thanks to people like you we do have back our son and I can't even begin to describe what that has meant to Matthew and the rest of his family and friends.

    I am please to hear that Richard is still slowly improving and as I was once told, no-one actually knows what he will be capable of in the future. One thing we have learnt from all this, don't always believe what you are told and people do have the potential to keep on improving and that potential doesn't stop after two years, which used to be the accepted thinking. With the right support and love Richard may be capable of doing so much more in the future. If our sons recovery can help to give other families hope, then it doesn't all seem quite so bad.

  • Comment number 7.

    We were most interested in last night's programme. Our son, Peter had an RTA in September 1982 resulting in 'locked in muscle syndrome'. He was treated for the first two years at the Hospital for Neurological Diseases, Queen's Square, London. He died in May 2005 23 years after his accident still completely paralysed, unable to speak or breathe unaided but very happy with his life in his own flat and a 24 hour care package. I wrote and had published his life story as requested by him ('Peter - Against All Odds'). In his own words 'I have very much enjoyed my life and although being handicapped, have not been prevented from doing or wanting anything. He used a special alphabet system to communicate using the one eyebrow which still worked. If I could help or encourage anyone injured in a similar way or their family, I would be happy to do so. Further information can be obtained directly from me at my email address.

  • Comment number 8.

    Thank you so much BBC for making this program. Heartfelt thanks to Nick and Marina for a long awaited truthful documentary.
    Most of all our sincere gratitude to Professor Menon and all the staff on the NCCU Addenbrooks.

    In 2002 at the age of 15 my son had the bad luck of having a major head injury but the good luck of being taken to Addenbrooks NCCU. He survived due to the amazing care and intervention by the team. He is, despite having a 2% chance of life of any kind, walking talking and leading a relatively normal life. He is amazing and a testament to the expertise of Addenbrooks.
    Watching the program last night brought back many painful memories both in terms of feelings and places.
    I could write so much more but there would not be enough space, however I would like to say that once these dedicated staff at all levels have saved patients lives the specialist rehabilitation that is so crucial for a maximum recovery is a lottery. Case Managers remain unregulated and have no mandatory governing body. A dire situation, if Nick or Marina feel that a follow on program would be appropriate please feel free to get in touch with me. Thanks again.

  • Comment number 9.

    I work within healthcare, and have done for the past 5 years, from the age of 16. I was 17 when I first witnessed someone die. This is one of many of the BBC's documentarys that I have watche regarding healthcare. I feel they show all angles of the discipline they are working within. Watching the documentary you could see Richards family tearing themsleves apart, with wanting to carry out their family members wishes, however the doctors wanted to give Richard more time......how greatful are the family for this period of time now. I could never imagine the pain and stress that this situation must have caused Richards family.

    I agree with how Professor Menon described medicine as much as art as it is science. With any condition, each individual patients body will react differently to the consition, many can experience symptons that are not classic to the condition. Therefore, on many occasions, a medical professional will have to adapt the patients treatment or care, to suit their needs, rather than the policied treatment for a conditon. Therefore medicine on many occasions can be seen by someone as an art....but only an art with the intense knowledge, understanding and experience to treat medicine as an art as well as a science.

  • Comment number 10.

    I didn’t mean to watch the Between Life And Death programme last night, but from the first minutes I was gripped by how well some parts of the families' experiences were represented as so true to our experiences. Except that...oh, how serene the neuro unit at Addenbrookes was.
    I would be really interested to know what footage was dropped. I can understand why - would it be ethical to display a patient's distress if they couldn't consent, even if the family thought the 'greater good' was served by showing some gritty truths?
    In my experience that would include months of spastic movement requiring careful padding to prevent the patient injuring themselves. Weeks of respiratory distress with antibiotics and resultant bowel problems leading to painful skin infections. Then as 'slow recovery' progressed: moaning, grimacing, facial expressions showing extreme fear and bewilderment, resistance and vocalising against some treatments. The family in counselling and on antidepressants relinquishing multiple other responsibilities to focus on helping their loved one. I am not just reporting my experiences with my relative but have also seen these behaviours common in other brain damaged patients I have observed over these many months.
    What a great programme this could have been if it had informed people about the ranges of patient experiences and family reactions. However, this program narrowed it down to the death of one patient and a sort of serene existence and acceptance on the part of the other two patients and their families. This does not represent everyone. Those of us who relentlessly work to have a relative's wishes respected while their bodies are held hostage in medical institutions need to keep our heads below the parapet. We must be mindful how public declarations might affect court cases which could ease our relative's situation. Mindful too of how the staff processing our loved one in medical institutions might interpret our comments to mean we might take personal action to end our relative's suffering. There are lots of us out here working for change - for a closer scrutiny of where prolonging life is in reality just protracting death.

  • Comment number 11.

    Using an eye movement system to indicate yes or no only allows the patient to answers direct questions. Using left / right eye movements in place of dot dash morse code signals would allow the patient to compose his own statements, allowing a much improved quality of life. If a card showing the code alphabet was kept in his vision then training would be very quick.If necessary blinks could be used between words or letters.

  • Comment number 12.

    This was a documentry I was compelled to watch although I knew it would ultimatly be painfull to view.
    It was so encouraging to see such wonderful care and my heart went out to the families and also the staff who deal with traumatic brain injury patients.
    My own experience was right back with me, the days and weeks in ITU, the hope and dispair that came anew every day. The heartbreak of seeing the one that you love as helpless and vulnerable as a child.
    The one thing that I know is true is that one cannot know for certain how they will react, until it happens within that family. It can never be easy to decide on withdrawing treatment, its a personal issue that only the family, the victim if possible, and the team treating them can make. There is nothing as traumatic as brain injury, and early on the consultant treating my son told no two brain injuries were ever the same, and neither was the outcome. How very right he was.
    I have never got over my sons accident. Six weeks in a coma, months in a rehab ward, and then another few years of re-learning, the memories and trauma have never left me.
    I wish that is were possible to make a documentary about the many hidden problems of the brain injured, of the many many hurdles they face with recovery.I totally agree with Mary Webster in her post, a missed opportunity in some ways. So many people are so uneducated about TBI and I have to confess that the term "cabbage" as used by one father in the film, made me cringe.
    All credit to the makers of the film, to all the dedicated staff, but mostly I guess to Professor Menon. What a wonderful man.
    To say that my sons injury was traumatic to us as a family is the understatement of the year. I had no idea before (and I am an intelligent woman) that the recovery would involve so much. I think I cried almost every day for three years. I could write a book on my experiences, but sadly will never be able to forget that time in my life.It was twelve years ago but it might as well be yesterday.
    My son is now married with a year old child. He works part time and with care he manages his hidden disabilites such as the short term memory and speech, as well as fatigue. He is my miracle, but my God it took years to get where he is. The painful process was at times, almost too much to bare.
    God bless to all who help the brain injured and their families.

  • Comment number 13.

    I see that Mary Webster asked for the experiences of what patients go through and perhaps I can at least answer that for her as I was a patient there back in July last year!. One Friday afternoon I had a bad fall from height and was rushed to the NCCU by helicopter as my condition was thought to be very serious. I spent two weeks there in a coma and a further two weeks on a recovery ward and I can tell you I remember absolutely nothing of it all!. I do remember coming too and asking what day it was and on being told that it was a Saturday wanted to go down the chip shop;-) However i had it pointed out to me that I wasn't going to be going anywhere as apart from the skull fractures and head injuries I had broken my Left femur and had misc other bits of damage.

    I eventuality recovered better and argued my case to be sent home, not wishing to argue with the people who'd undoubtedly saved my life but felt that they'd done such a good job I was well enough to go.

    However as the programme showed very well its not just the patient involved in this as I put my Wife and daughters, relatives, through merry hell with worry and grief not knowing when I would wake up, whether or not I would just live or die and what state i would be in whether or not I was going to make a good recovery or need constant treatment for the rest of my days. But as it is I am now very well recovered and thanks to all at Addenbrookes and espically Prof Menon and his team.

    And for the lady's information I too was filmed at the 6 month follow up where Prof Menon kindly allowed me to re visit the NCCU, as I said i remember nothing of it when there and it was quite poignant to be back there alive and well and now walking unaided and remembered by the nurses as something of a naughty boy trying to pull my drips and tubes out;!

    I feel to this day that I owe them a lot and subsequently was pleased to be involved in a research project into Brain injury. This dept not only treats patients as a hospital but works in collaboration with the University as Cambridge Neurosciences which has led to it being a true centre of excellence.

    One things certain and that's you'd be hard pressed to be anywhere better for Neurological injury treatment in the world:))

  • Comment number 14.

    The substantial and passionate discussion that has followed this program is, for me, the strongest vindication for having made it, despite the hurdles that we had to overcome to get it made. I would like to thank the patients and families who participated (including those who were not included in the program) for their courage – we know that it wasn’t easy.
    I have been struck by how many families and individuals who went through a similar illness in the past see their own experiences reflected in the program. Indeed, one of the unexpected bonuses for me has been the number of our past patients who have made contact through the blog, or by personal email, and let me know about clinical progress. I would like to thank those of you who contributed to this blog for bringing us up to date, and also say thank you to the many individuals who were treated in the NCCU in the past and emailed me directly. These represent repeated shared achievements for medicine and humanity embodied in the individual successes of some remarkable people through very, very, hard work – I know from talking to patients and their families that getting better from neurological injury is not easy.
    In this, I echo Mary Webster’s comment (#10) that the process of recovery can be painful and difficult, both for patient and family. For the program, Nick and Marina filmed clinical care, warts and all. However, in making a coherent narrative, we had to cut down 90 hours+ of filming to less than an hour, and much of this had to go. While I was not personally involving in the editing, I don’t believe that anything was censored because it was thought to be “inappropriate” or because we did not have consent. By the time the program went to air, Nick and the medical team had been able to directly communicate with Richard, and were reassured that we had direct consent to his participation in the program, rather than the substituted judgment of his family. As an aside, while I obviously have no personal experience, I believe that some of the most distressing experiences in this situation are very passive ones – the long periods without interaction, the total dependence on someone else to do anything that involves action, and the frustration at loss of independence. This is why we need to make sure that clinical teams, at an appropriate time, make the transition between treating disease to maximizing recovery. We try our best to do this, and the NCCU has rounds by a rehabilitation consultant (Dr Judith Allanson) at least weekly. However, I am certain we could improve substantially in this area.
    Clearly, this program carried an important message about how patients with severe brain injury need time to declare their outcomes, and that it is still difficult to predict outcomes in individual patients at an early stage. However, personally speaking, I think that there is another message that is at least as important: that of individual choice. As doctors in intensive care, we often have to coordinate difficult decisions about treatment in contexts where the patient is unable to communicate their wishes directly. We reach such decisions, as best as we can, based on our knowledge of the clinical situation, and the wishes that the individual may have expressed in the past, either formally (in the form of “living wills”) or informally, through conversations with family and friends. With Richard, we were offered the opportunity to ask him his opinion directly, and we felt that obtaining this was so vital that we spent two months waiting for adequate recovery and establishing a vocabulary that allowed this interaction to happen. However, in most cases, this is a luxury we don’t have. To completely disregard past information that we have about patients’ wishes (as some discussants in the printed press have suggested) would an unwarrantable injustice to the autonomy of patients. We need to be conscious of the limitations of reported wishes, but must take account of them in decision making. The world is rarely perfect, but we need to deal with its imperfections – not ignore them.

  • Comment number 15.

    I found this programme extraordinary to watch and was deeply moved by it. It was respectful and dignified, balanced and informative.
    I thought the programme was so well made and have admiration for the director and producer for handling such a difficult subject in a sensitive and calm way. I loved the way that there were little clips of video and photos of the three patients interspersed, as it brought home to the viewer how real that person was. The bravery of all the relatives was so humbling and I commend them for their consent in taking part in it.
    To all the medical and nursing staff at Addenbrooke's, thank you for your tireless dedication and professionalism.

  • Comment number 16.

    Despite me only being sixteen, This programme hit me hard and made me think of a lot in my life. The stories of all three concerned each made me think differently and the way in which each family dealt with the accidents was amazing.
    My heart goes out to all families especially the family of Sam who wernt so fortunate, From the videos shown in the programme, she was beautiful and her family were so strong.
    It just shows that maybe when you come in moaning after a bad day you should think twice and consider yourself lucky to be there, even if you have got too many bills or exams, your right there, walking and talking.
    Focusing on the story of David, the doctors and nurses in that department were amazing for him, to see him go from the result of a bike accident to having that sparkle of life in his eyes at the end shows just what they did for him.
    Beckii's recovery was amazing, and can i just say, her husband deserves a medal, its clear he loves her to the moon and back and his strength for their three children and looking after her is so admirable.
    This programme has definatley hit me harder than i thought it would, a lot harder.
    Well done to all involved, your amazing.

    Keep doing what your doing doctors and nurses... :)

  • Comment number 17.

    Again, thank you BBC for making this program. Nick and Marina, I have to congratulate you for a documentary more truthful than most could imagen.
    Professor Menon, Mr Hutchinson you and your staff on the NCCU at Addenbrooks truely are amazing people.

    My wife Delia was admitted to the NCCU in November 2009 following a near fatal car accident and took residence in the bed next to Richard for a month. The BBC programme, I can assure everyone, was completely accurate. Nick and Marina, you portrayed the work of the NCCU with great care and dignity, not just for Delia and my family but for all of the patients and relatives who found themselves in the unfortunate position of being whisked away from relality and placed in the NCCU.

    Delia's life was saved and a devastating prognosis followed when doctors were in the position to give her an MRI scan. Revealing major brain damage to both the white matter and grey matter Delia was in a tunnel with very little idea of her surroundings. We were told that Delia wouldn't have much chance of coming home or enjoying an independent life. We felt, just like Richard's and Sam's family that she wouldn't have wanted to live in that way.

    Nearly 8 months since that near fatal blow to her head she is back to work full time, driving and enjoying life almost as she did before. She still has a little way to go but her story shows everyone must have hope. Thank god the MRI scan couldnt be done when she was first admitted as who knows what decision may have been made, bearing in mind I know what Delia would have wished for.

    Professor Menon, Mr Hutchinson and your staff, again thank you for everything you have done and continue to do.

    Russell Swann

  • Comment number 18.

    What an encouraging story within the last comment and wonderful that Delia has made such an amazing recovery.

    The whole programme has done wonders for raising the awareness of head injuries and the amazing work staff do for people at places like NCCU at Addenbrooks.

    It could also perhaps be helpful if stories of remarkable recoveries from seemingly hopeless situations could also be told, because with the right intervention people do sometimes go on to make quite unbelievable recoveries, and that knowledge would definitely be helpful for families having to make difficult decisions in the most desperate of situations.

    In some small way I hope the last story and the one I posted earlier, (no.6) helps to do this. A serious head injury doesn’t necessarily have to be the end of the road for someone.

  • Comment number 19.

    Yes, Ian, storys of remarkable recoveries are useful - and it is lovely to hear of some happy endings. Thanks for sharing your storys. I think that we also need to hear storys about the trap facing a person who doesn't recover.
    Some patients remain in a vegetative or minimally aware state that, for some patients (and their loved-ones), is an endless nightmare and definitely against what the patient would have wanted. What options then - expensive and lengthy legal action? - that might fail if the person shows any sign of awareness at all ... and that anyway gives me nightmares if it should succeed.
    Not every patient who's death has been 'interupted' emerges eventually, and not every one indicates that they are happy to have survived.
    But by then they have no choice.
    First the doctors tell us that it takes months to provide a proper prognosis and she must be kept alive until then at all costs.
    Then they tell us that she is may now be so conscious that she must continue to be treated.
    However, this consciousness may be not enough to communicate anything but distress.
    We need hope and we need to be realistic. But what I want most is a system that really respects every patients choice, including the right to death with some dignity and compassion. Am I the only one who feels this way?

  • Comment number 20.

    I understand and totally agree with your comments Vanessa, some people must be allowed to go, but it is not an easy decision as we can never be sure of the eventual outcome. I can only speak from experience as we very nearly decided to let our son go after his accident in New Zealand. The only voice among many that made us think again was his neurosurgeons and had he not taken a more positive approach Matthew would no longer be with us. Thank goodness he made us think again, but I agree we probably wouldn't have thanked him if the outcome had been different. However, you just never know and this programme has done a lot to highlight that terrible dilemma faced by so many people.

  • Comment number 21.

    What a thoughtful and well put together programme. As a worker in a neuro unit myself, I found that this programme showed me sides of these heart wrenching and devastating predicaments that I haven't seen or dared to think about.

    I commend the families who dared to show themselves at this extremely vulnerable time. I feel this programme highlights the need for families to discuss there own wishes in case of similar happening to them, even though the programme showed, quite clearly, that these wishes may change. Not everyone will be lucky enough to show themselves, and I know there is nothing worse than seeing a family unsure of what a relative would have wanted, in life or death. I also think it shows how vulnerable and changeable life is.

    I would like to reply to PauleM: I agree strongly with prof Menon that neuroscience medicine is an art. Don't you think that waiting six months to allow a patient to develop eye movements in order to express a will to live or die came solely from a physical understanding of how the brain works? I think that this used far more than that - from experience, from gut feeling, from interpreting and understanding a patient and their families needs and wants.

    In neuroscience, I've learned, that no two head injuries are the same, no matter how similar they are. This is unlike other injuries or illness' where patterns are easily recognisable. Regularly there are anomalies meaning we have to work outside of protocol and what is commonly understood.

    Neuroscience is also artistic in a way of learning how to balance, understand and interpret needs of an individual and their family. Yes, there is a huge learned portion of practising neuroscience well but this is the same in art. Many people study art first in order to be able to use, balance and interpret their own skills and surroundings well.

    I feel that there is huge grey areas of life and death, for example, brain stem death or persistent vegetative state or even when someone is bound by a life limiting problem, but is neurologically intact. And even with all the digital interpretation of life that is regularly presented in an ITU, nothing will tell you more than your patient and their family.

    A black and white view of this is particularly dangerous as I feel it would mean you can forget these miracles that we are hearing about on this board. Many neuro patients present with no to little chance of recovering, but as we hear again and again, it keeps happening, despite the doctors expert 'STUDIED' knowledge.

  • Comment number 22.

    I write in response to the points made by Russell Swann, Ian and Vanessa. These echo some of the earlier discussion about the injured brain requiring time to declare itself. It is also important to understand that no single test is the sole basis for clinical decisions in these settings. The MRI scans and other tests contribute to the clinical picture that we have about the severity of injury, and provide information about the probabilities of a relatively good or poor outcome.
    At the extremes of outcome, clinical staff can be pretty sure of prognosis. For example, when one of our patients satisfies the criteria for brain stem death (sometimes abbreviated to “brain death”) we know that the outcome is uniformly bleak. A recent review of the medical literature showed that no patient who has satisfied properly undertaken tests for brain stem death has subsequently recovered. On the other hand, you don’t need to be a head injury specialist to know that someone who rapidly recovers after sedative drugs are stopped, and is able to walk and talk, is likely to make a good recovery.
    For all other outcomes, we can only predict a range of probable outcomes. As time goes on, and patients suffer complications (or respond to treatment), the range of probabilities may narrow in one direction or the other. However, the eventual pattern, extent and speed of recovery are impossible to predict in any individual patient. In most cases this does not matter – we continue to treat actively, and hope for the best. However, where the expected range of probable outcomes is at the very worst end of the spectrum, it is important to take account of individual choice.
    Treating all patients with a potentially disastrous outcome aggressively means that, in many patients, the outcome may not be improvement, but survival in a very severely disabled or vegetative state. I know, from discussions with families, that many individuals are unwilling to take this risk in return for a sometimes vanishingly small chance of useful recovery. Even more tellingly, I have had discussions with individuals on a mechanical ventilator who are cognitively completely intact, but severely physically disabled, who have clearly and explicitly chosen not to continue aggressive treatment. In these settings we have respected their wishes and withdrawn active treatment, while keeping them comfortable.
    Where these wishes (either directly or indirectly expressed) are clear, we must take account of them. Where there is an opportunity to obtain a direct view from the patient, we should do so, but in many cases this is impossible.
    Our decisions in individual patients are tempered by known predictors of outcome after brain injury, such as age, the presence of severe or irreversible organ failure outside the brain (which might make ICU survival difficult), and the extent of structural brain injury. Inevitably, we can get things wrong. In very many instances, because we do not wish to deny someone even a small chance of useful recovery, active treatment may result in survival, but with a quality of life that is not what the individual would wish for.
    It is really important that clinicians are honest about the difficulties and imperfections of making such decisions, so as to avoid unreal expectations and distress to families. At the same time, we need to try our best not to impose our wishes and values on patients, but try our very best to make decisions that we think that they would wish us to make.
    A final (and very important) point is that these difficult decisions are never made by an individual clinician. The NCCU has a team of intensive care consultants, lead by the Director of the NCCU, Dr Rowan Burnstein. In addition, there is enormous input into the care of individual patents from their admitting medical teams (in the cases in the program, this was the neurosurgical consultant, Mr Peter Hutchinson). The nursing staff and other clinical specialists (physiotherapists, speech therapists) also contribute substantially to patient care. Our collective role is to coordinate the input from experts in all of these fields, and combine it with the information that we obtain from people who are experts in the patient (the families). Our aim is to make the best possible decisions we can for individual patients - our hope is that we get this process right.

  • Comment number 23.

    A fantastic thought provoking programme,I was totally fixed.I am in my final year as a student nurse and have worked in a high dependancy neuro ward.Often families had come up to the ward after being in intensive care unsure whether their loved one was going to live or die.I felt for families and could see the pain they endured. Unfortunately, two months ago my lovely brother, a 42 year old man had a tragic accident and subsequently suffered multiple head injuries, spinal injuries and many other injuries to his body. He was heavily sedated and in intensive care, he had a icp bolt in his head to measure the inter cranial pressure,every time the sedation was reduced his inter cranial pressure would rise.My family and i could do nothing but put our total faith in staff and the hope that the "will to live" would be somewhere within my brother.I saw that same look in the families eyes from the prorogramme.Thankfully for us my brother survived and our prayers had been answered,he will now have to undergo much physio input, and again an inner strength of will to get better. I agree with one of the previous writers that by having informative doctors, nurses etc is vital to family members and therfore to the patient. By wathching your programme it reinforces the amazing job that the health professionals do and also how amazing the human brain is.

  • Comment number 24.

    The process of the reversal of coma


    http://www.keshefoundation.com/health/health/Web/pages/03als7.html


    Diagnose: coma Glasgow level 3-5


    At the point of start of the procedure: breathing normal without support, external feeding system through abdomen.




    Signs of life at the point of start of the procedure :


    Senses :


    Touch: No reaction to touch or pinching of the skin of the legs, arms or the body.


    Hearing: No reaction to noise or commands.


    Sight: Zero, One eye considered to be totally damaged and not functioning and considered
    as blind by doctors.


    Taste: No sense of taste and the jaws were totally locked.


    Smell: No sense of smell as the head on collision has damaged the frontal sensory
    receptors as this is common in most head-on collision.


    Feet, arms and hands:
    Both were twisted and curved inwards.


    Spasms: Every 45-55 seconds. This was measured in the presence of the parents and further
    independently by the parents over a period of 3 hours.


    Discussion


    Following verbal Instructions:


    No sense of hearing and totally oblivious to any instruction.


    With the use of the space health systems within one week volunteer could on instruction move her toes of the right foot and volunteer could mover later her leg fully upwards. Therefore within one week using the systems volunteer could hear and follow instruction.
    This method of moving the foot was ask if volunteer wants a cigarette or volunteer wants to see certain people.


    Movement:


    In the process it was found that the left side of the body of Volunteer was not responding and paralysis was considered.


    Special system was developed that the operation of the left side of the body was moved to the points in the jaws section of the face, where through this process one could allow rapid healing of the damaged nerves that the paralyse could be overcome. This relocation of nerves and in being able to move the whole left leg sideways and volunteer follows the instruction allowed at the same time the movement of opening and folding of the left hand.


    Emotion


    Within the end of the first week, when the volunteer was partially conscious, when volunteer was held by could cry tears this confirming that volunteer was conscious. Therefore there was no doubt that volunteer has gained certain level of consciousness.


    Talking


    By the end of second week in trying to get volunteer talking, in a given session volunteer called clearly with four letter word and attempted was made for her to call another and different word.


    Thus it was clear that we had a living thinking woman on our hand and not a body which the system had to be switched off..


    Smell and taste


    During the first week of the trial volunteer was tested to see if volunteer can smell anything and about twenty different odours and scents provided by the chemist for this purpose were used, these ranging from rose, lemon, citron, mint, ammoniac, perfume and others and volunteer was offered the smell of cigarette as volunteer was a smoker before the accident.
    At this point volunteer showed no response and it was pointed out by the supervising doctor that majority of the people whom have been involved in head-on collision loss their sense of smell and taste due to the damage to the dislocation and damage to the tiny bone positioned on the top of the nose in forehead area of the face. At the same time it was explained that this is normal and the injury usually means the total loss of this sense for the rest of the life of these people.


    In getting an insight into this damage to volunteer, specific configuration plasma systems where developed and tested immediately. Results were immediate, within two days volunteer was asked if volunteer would like a smoke of cigerate and with movement of the foot volunteer indicates yes, by lighting a cigrate and bringing the cigarette near her noise, volunteer was making the noise of pleasure and the first occasion the volunteer started to cry. Then smoking sessions with asking from her were repeated and the same noise of pleasure and content sound were noted. Volunteer was a number of times to be called smoking coma patient.


    Further with development of two more integrated systems, by the third week when volunteer was exposed to scent of lemon, rose and mint volunteer started to react and start coughing. The doctor confirming that volunteer has gained the sense back in full.


    Therefore it is possible to retrieve the losses of smell through simple developed space health systems for this purpose


    Taste:


    To find the extent of the volunteer's taste of any matter, this was tried as with her sense of smell, and the same taste like lemon and others were used. After the use of the same procedures and building new plasma reactors systems, volunteer could taste and by making mouth foam and expression that volunteer could indicate that she could taste the lemons’ sharpness.

    Many more people can be helpt.
    C De Roose

 

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