“Do No Harm - Stories of Life, Death and Brain Surgery”. Henry Marsh. Paperback / softback. Phoenix. 2014. (ISBN 9781780225920). 278 pps. Available from Bookworld (Australia) http://www.bookworld.com.au/ $16.55 AUD.
This book by a leading UK neurosurgeon is not a suitable read for anyone who is about to undergo brain surgery, or their family members, for that matter.
Henry Marsh has been a Consultant Neurosurgeon for twenty-seven years and has performed neurosurgery in the UK and the Ukraine and regularly lectures in the USA. He writes with “brutal honesty”, to use the words of brain tumour survivor and author Deidre Kohler who I met in Johannesburg in 2011 and whose book with those words in the title I have also reviewed. “Brutal honesty” were the words that Deidre asked her specialist to use when replying to several questions she had sent to him, including how one dies from a brain tumour.
Marsh writes about his successes and his failures in all manner of neurosurgical procedures involving a wide range of tumours, including glioblastomas.
Why do I believe the book is not suitable for people who are about to be operated on? Marsh pulls no punches and describes the risks involved in all operations on the brain and the way in which tragedy can occur in an instant due to a mistake by the surgeon or due to an unforseen event. Do you want to be aware of these possibilities in graphic detail before you have your operation?
But for someone who has survived their operation, or is simply a curious bystander, and wants to know what is involved and how a leading neurosurgeon works, the book is compellingly and honestly written.
What is on display is Marsh’s growing awareness of his own fallibility as he nears the end of an illustrious career.
I have had several encounters with neurosurgeons in my time as a former caregiver and as a patient advocate and have been left with mixed impressions.
The good and the bad
My late wife’s neurosurgeon who operated on her glioblastoma, is now half-way through his term as President of the Neurosurgical Society of Australasia (NSA).
Following the operation, which took place many years ago, he visited the ward to explain the operation and the prognosis to my wife, her mother, and myself. I asked if I could tape our conversation. He looked quizzically at me, probably wondering if he was being set up for a legal case, but agreed and checked a final draft of the transcript of our discussion before I uploaded it to the Internet.
That transcript has been viewed by tens of thousands of people and I have received dozens of emails from people who say “We also had that discussion but everything was in a blur and we missed a lot of what was said, thank you for reproducing your discussion”.
The transcript is an object lesson for any neurosurgeon in how to appropriately convey bad news.
After her operation my wife and I were puzzled to receive comments from friends and acquaintances who said “Thank goodness you had neurosurgeon Dr X and not neurosurgeon Dr Y”. I later discovered that my wife might very well have had Dr Y, had he been on the roster that day. These people appeared to know something we did not.
Dr Y has been subsequently involved in several legal cases and no longer practices. As a patient advocate I played a part in having a redacted version of an adverse report about his work released to the public by a reluctant Health Minister. Apparently his failings were well known among many health professionals but it took a courageous specialist to gather evidence and, in the process, he harmed his own health and truncated his career.
An incident at a conference
Twelve years ago patient advocates were not made particularly welcome at scientific conferences. Somehow I managed to register for a glioblastoma conference being held in Sydney but a friend who was a very knowledgeable and intelligent caregiver for her husband was only allowed to attend after intervention with the organisers by her husband’s oncologist and only if she gave an undertaking not to ask any questions.
We both sat towards the back of the auditorium behind a group of Japanese specialists who had obviously come straight from their international flight and could not stop themselves from falling asleep with their heads nodding forwards.
A prominent neurosurgeon was holding forth and a fellow Doctor asked him what he did when patients came to him and asked his opinion about something they had found on the Internet. He said he tried to sidetrack them by giving them a website address that would tie them up for hours but not be of much use.
I could see the faces of several in the audience turn to look at myself and my friend with embarrassment, aware that their colleague had thought he was speaking to an audience made up entirely of fellow specialists and he could safely afford to offer an “amusing” response – at the expense of his patients. We both said nothing but experiences like that are the making of a patient advocate.
Henry Marsh acknowledges that many of his patients will have researched their condition on the Internet and “the paternalistic white lies of the past will no longer be believed” (p 142).
He also offers an explanation, which will not be welcomed by his older and retired colleagues, for the practice involving another “white lie” - a complete head shave for a patient before an operation:
“There is no evidence that the complete head shaves we did in the past, which made the patients look like convicts, had any effect on infection rates, which had been the ostensible reason for doing them. I suspect the real – albeit unconscious – reason was that dehumanising the patients made it easier for the surgeons to operate” (p 24).
With a frankness and honesty of that nature it is not surprising that he has had the occasional run in with the bureaucracies in the hospitals where he worked and he has several acerbic comments to make about the UK National Health Service (NHS).
Surprisingly, he has only good things to say about the processes of the National Institute for Health and Care Excellence (NICE), which is the UK’s health technology assessment (HTA) agency. He served on one of its review panels despite acknowledging his bewilderment at the avalanche of obscure acronyms and formulae served up to the panel members. (At a recent workshop about HTA which I attended our lecturer, who was from the London School of Economics, asked if we knew what “T.L.A.” stood for. No one did, so he explained that it stood for “another three-letter acronym” J )
Marsh possesses, but perhaps does not always display visibly, a great empathy for a patient’s family or loved one. He attributes this to his own experience early in his career when his three-year-old son William developed acute hydrocephalus due to a non-malignant choroid plexus papilloma brain tumour. He writes:
“My wife and I spent the next few weeks in that strange world one enters when you fear for your child’s life – the outside world, the real world, becomes a ghost world, and the people in it remote and indistinct. The only reality is intense fear, a fear driven by helpless, overwhelming love … It was a useful lesson for me, when I became a fully trained surgeon myself, to know how much my patients’ families suffer when I am operating … Anxious and angry relatives are a burden all doctors must bear, but having been one myself was an important part of my medical education. Doctors, I tell my trainees with a laugh, can’t suffer enough”. (pps 107 – 110)
How many operations?
In occasional vignettes Marsh raises the subject of when a neurosurgeon might need to say “No” to a patient or family. It is a fraught subject and he claims it is one of the reasons why he stopped doing paediatrics. He describes to his trainees the case of a three-year-old child with an ependymoma brain tumour whom he refused to operate on for a third time:
“The conversation with his parents was terrible: they wouldn’t accept what I said and they found a neurosurgeon elsewhere who operated three times over the next year and the boy still died. His parents then tried to sue me for negligence … Love, I reminded my trainees, can be very selfish”. (p 136)
Early in my development as a patient advocate I was invited to lunch by a friend who had also invited a neurosurgeon acquaintance who wanted to convey to me some of the realities of his world. We got talking about repeat operations in challenging circumstances and the neurosurgeon told me forcefully about cases where another neurosurgeon had decided to take a risk and had failed and he was left “to pick up the pieces” with the patient who was now paralysed and confined to a bed. “These are the cases you don’t hear about”, he said.
The questions of when not to operate and when to cease trying to take out more tumour are raised often in Marsh’s book and I am sure are faced by many neurosurgeons.
Several years ago I was startled to hear a prominent Australian neurosurgeon explain at a patient forum that early in her career she had a case where her patient, who ended up paralysed and bed-ridden after she had operated, told her that he would have preferred if she had just let him die and she projected on the Powerpoint screen a newspaper clipping in which he said just that.
Learning through mistakes
In neurosurgery it is partially through these mistakes that one learns. Marsh explains by quoting a conversation with one of his exchange American registrars about an American neurosurgeon:
“Prof B’s a really fantastic surgeon, amazing technician,” my registrar said, “but do you know what he was called by his residents before he moved to his present job? They called him ‘the butcher’ because he trashed so many patients as he perfected his technique with those really difficult cases. And he still gets some terrible complications. Doesn’t seem to trouble him much though.” (p 210)
This question of experience is one of the major challenges bedevilling neurosurgery for brain tumours in Australia. Very few neurosurgeons specialise in brain tumour operations. Brain tumours might represent only a small proportion of their workload. How then does a neurosurgeon in a regional area (e.g. Canberra, Townsville or Launceston) develop the experience necessary to reach and maintain an adequate competency? How many, when faced with a difficult case, are prepared to tell the patient that they should consult another neurosurgeon who has had more experience?
Also, what about the neurosurgeons who are so certain of their own capacity that they will not refer on or will not tell the family that another operation is pointless, as mentioned by Marsh in the ependymoma example quoted earlier?
Is it wise for a neurosurgeon to have an exaggerated opinion of their capacity? I once asked a leading Australian neurosurgeon if he would be introducing Gliolan into his practice. Gliolan is a relatively new fluorescent dye which, under a blue light helps the surgeon distinguish between cancerous and non-cancerous cells in the brain. Clinical trials in Europe have proven that it helps to achieve a greater resection in most cases. The neurosurgeon responded “I won’t be introducing it but some of my colleagues might find it useful”. Implicit in his answer was a belief that his skills were so superior that he did not need any outside technical assistance but some of his less-skilled colleagues could do with some help.
An admiration and respect for the intricacies of the brain
Henry Marsh displays great respect for the architecture and complexity of the human brain.
This is his description of a successful operation on a 37-weeks pregnant patient, Melanie, whose meningioma was sending her blind. Note that this is the kind of tumour that the cancer statisticians decline to count and describe as “benign” but meningiomas can kill through severely impacting good brain cells and can wreak enormous damage.
“I quickly cut into the tumour to the left of the optic nerve and to my relief the tumour was soft and sucked easily – admittedly, most suprasellar tumours do. It did not take long to debulk the tumour with the sucker in my right hand and the diathermy forceps in my left. I gradually eased the hollowed out tumour away from the optic nerves. The tumour was not stuck to the optic nerves and after an hour or so we had a spectacular view of both right and left optic nerves and their junction, known as the chiasm. They look like a pair of miniature trousers although thin and stretched because of the tumour which I had now removed. On either side were the great carotid arteries that supply most of the blood to the brain and further back the pituitary stalk, the fragile structure that connects the all-important pea-sized pituitary gland to the brain, which co-ordinates all the body’s hormonal systems. It sits in a little cavity, known as the sella, just beneath the optic nerves, which is why Melanie’s tumour is called a ‘supra-sellar’ meningioma”. (p 55)
Readers who saw the documentary The English Surgeon, which was shown on ABC TV several years ago, might recall a film crew following Marsh during a visit to the Ukraine. He first visited there in 1992 after the fall of Communism and has returned many times since to help a surgeon who was trying to work in the desperately under-resourced health system. Marsh describes his first encounter:
“Everything was grey, colourless and drab in the way that only Soviet cities could be …The electricity supply had failed and much of the hospital was in pitch darkness. The whole place stank of ammonia – the hospital had run out of disinfectants and only ammonia was available for cleaning. The building seemed almost uninhabited … A surgeon was ‘operating’ on a paralysed man, paralysed from the neck down in an accident some years previously, I was told. There was a small tray of battered instruments beside him that looked as though they came from a scrapyard. The patient was lying on his side and partially covered with old curtains with a faded floral pattern …”. (pps 67-68)
I encountered something similar but not as bad when I visited Bucharest, the capital of Romania, another former Communist State, in 2011, and was shown around the children’s ward I n a major hospital and met children who had a brain tumour and their mothers, who stayed with them in the hospital to prepare food for them and look after them generally because of the shortage of staff.
The hospital was also grey and dark with just about every second light globe missing or not functioning. I heard stories of how parents crossed into other European countries to buy chemotherapies for their child when the monthly State allocation had been abruptly used up. An attempt had been made to brighten up the ward with drawings of Disney characters on the walls. I gave each of the children a small toy koala, made in China but purchased at Sydney airport before my flight had departed (and now emerging as a symbol of Australia’s “soft diplomacy”). What they made of them I do not know. Did they or their mothers even know where Australia was?
We do not need to travel to Europe to find under-resourced health systems, they are closer to home. Australia has had a long historical connection with Papua New Guinea (PNG), our nearest neighbour, but they lack specialists and resources. As far as I am aware, Australian cancer specialists and their professional organisations are doing little to help them, except for neurosurgeon Professor Jeffrey Rosenfeld from Melbourne Hospital, who has a connection with PNG. Another Australian neurosurgeon, Dr Kate Drummond, from the same hospital, has also tried to help in less developed countries.
Henry Marsh has written a very readable book. As his professional career draws to a close he writes with frankness, honesty and humility about his mistakes and his undisguised awe at the majesty of the human brain. His book is thoroughly recommended for those with a curiosity about neurosurgery and who are able to cope with often vivid and detailed descriptions of his operations.
Denis Strangman (firstname.lastname@example.org)
Former Chair 2005-2014, International Brain Tumour Alliance (IBTA)
28 December 2014.