Five days ago, Sydney urological surgeon Professor Henry Woo tweeted about crowdfunding for medical procedures, which has since polarised public opinion about the surgeon in the centre of the controversy: Professor Charlie Teo. Prof Woo observed that neurosurgeon Prof Teo featured in over 100 campaigns on popular crowdfunding site GoFundMe, with patients raising in excess of $120,000 to cover the costs of brain tumour surgery. The ensuing Twitter storm gained media coverage, with Prof Teo going on air this morning on Nine’s Today Show to explain the cost breakdown.
I know neither of these surgeons personally, but this debate has raised a number of ethical considerations which I’d like to discuss. I also want to raise public awareness about how the Australian healthcare system works when treating patients with cancer. Medicare is not perfect, but Australians have access to free healthcare when it comes to treatment for cancer in public hospitals.
Doctors work within an ethical framework, and whilst there may be the odd exception, doctors do want the best for their patients. Importantly, we want to respect patients’ dignity and right to be involved in treatment decisions. How to treat brain tumours is not always black or white (or should I say a grey or white matter). Complex cases are discussed at multi-disciplinary meetings which are attended by surgeons, medical and radiation oncologists, pathologists, and radiologists whose combined expertise creates a consensus opinion. This recommendation is then shared with the patient, who can accept or reject the recommendation.
All patients are entitled to a second opinion, which is understandable for difficult decisions such as treatment of a terminal illness, especially in children. This brings up the issue of informed consent. When a patient (or a parent) consents to a procedure, he or she must be provided with and understand all the available information, have the cognitive capacity to consent, and do so without coercion. When it comes to an emotionally-laden decision such as a child’s brain tumour, it affects the decision making process. Of course if there is a surgeon who is offering surgery for what was deemed an ‘inoperable’ tumour, parents will say ‘yes’ in the hope that this surgery might buy time for their child. Saying ‘no’ can make parents feel like they didn’t do absolutely everything they could for their child, and thus there is an emotional bias.
Just because you can operate on a tumour, doesn’t mean you should. There are risks and benefits to weigh up. Prof Woo has received some unfair personal attacks and trolling for his tweets from those who don’t understand what this means, calling him ‘jealous’. Deciding not to operate on a patient does not mean that the surgeon is incompetent or cowardly. There are justifiable reasons as to why a surgeon will not operate. These might be; 1) that the surgery would not change the outcome for a patient, or 2) the risk of death or morbidity is too high. What is the point of surgery if it will not prolong a life? What is the point of surgery if the patient dies, or if they become severely disabled, leading to a poor quality of life? These are the many things surgeons have to think about when providing their professional opinion. It is not simple.
Those who herald Prof Teo as a ‘hero’ and ‘miracle worker’ may not understand what is involved when doctors are asked for a prognosis. This is the question that patients want to know the most: how much time do I have left? This is a difficult question to answer because every tumour and every patient is different. There have been remarkable advances in research that have shown that there are genetic and immunological markers that influence the behaviour of tumours, but we still do not have a crystal ball that can tell us exactly how long a patient with cancer will survive.
Providing a prognosis is an estimate based on statistics, and the clinical experience of a doctor. I ask you to put yourself in a doctor’s shoes for one moment. If you tell a patient that s/he has two months left to live and s/he dies at two weeks, then the family will be angry that you got it wrong. If the patient survives well beyond two months, then you are still wrong, but the family is happy that you were wrong and that they got more precious time with their loved one. Which situation would you rather be in? For this reason, doctors tend to be conservative in their estimations of prognosis.
Now let’s say you get surgery for cancer. You were initially told two months, but you live for six. Does that make the surgery life-saving or life-prolonging? Not necessarily. Chances are, you could have lived for six months without going through unnecessary surgery. These are the difficult dilemmas that surgeons face every day, but a strong guiding principle is, “First, do no harm”. If a surgery is deemed to be too risky, causing harm to a patient, then it should not be offered. If a surgeon chooses to accept those risks and offer surgery, then that is his or her prerogative.
Did Prof Teo prolong the life of the patients he operated on? Maybe. Maybe not. There are a legion of fans who have come out in support of him, but I argue that anecdotal ‘miracles’ are not the same as a robust, peer-reviewed surgical audit. I am happy for those who were able to live longer than initially expected after undergoing surgery with Prof Teo, but what are his actual numbers? We do not know what his mortality and morbidity figures are, and so we cannot comment on his performance as a surgeon one way or the other.
When offering surgery when no one else does, it gives patients hope. I am not against hope. Hope is important in keeping up morale for patients who are going through an ineffably hard time in their lives. I cannot even begin to imagine what it must be like, but I have spent enough time on neurosurgery wards to know what devastation looks like. I have had a close friend of mine grieve the loss of her husband to the most aggressive of brain tumours; glioblastoma multiforme. What I do have a problem with, is giving false hope.
Now, I am not accusing Prof Teo of giving false hope. However, one must consider that children with terminal brain tumours are a very vulnerable patient population. With that comes a potential for exploitation, which is what doctors are concerned about in this scenario. Public health is a free service to Australians, whereas private practice is a business. Just like any business, the cost of the service is at the liberty of the operating surgeon who sets his or her own fees. When the parents of a child are told that treatment is not recommended, they will look for anyone who would offer it. Parents are willing to do anything for their child – this is how hope can potentially be manipulated into a business opportunity.
The glaring observation from the GoFundMe page is that there are few or no other surgeons that are featured. Prof Teo is not the only surgeon who offers cancer surgery in the private sector. This begs the question; why is he charging such an exorbitant fee that requires crowd-funding, when no other surgeons demand that sort of money? Is he a self-promoting charlatan? What special skills does he have that no other neurosurgeon in the country can offer?
Every state has qualified neurosurgeons and a public health service that provides cancer care. I find it hard to believe that a patient has to raise $120,000 in funds to go interstate for surgery with Prof Teo. Both the Royal Australasian College of Surgeons and the Australian Medical Association have responded by saying that patients should not have to fundraise for medical treatment.
Lastly, I acknowledge that patients with terminal illnesses and their families go through an excruciating time when it comes to making treatment decisions, which I empathise with. It is the doctors’ role to provide as much information as possible to help patients make a decision for themselves – this comes with a tremendous sense of duty and responsibility. As doctors, we must act ethically and always have the patient’s best interests at heart, without the sway of power, money, fame or reputation affecting our clinical judgment.
Take care,
Miko xx
My thoughts exactly!
I’m glad you concur!
I would like to know which university it is that Dr Teo is a professor, He isn’t on the website for UNSW, University of Sydney, UND, WSU, Macquarie or anywhere else in NSW. We can establish however, that Dr Woo is a full professor of surgery at the University of Sydney. I cannot imagine that he would hold such a position without being well credentialled.
A quick Google search shows he is a conjoint Professor at UNSW and Duke: http://neurospineresearch.org/our-group
Miko, you write so eloquently, I am a head and neck surgeon working with the neurosurgeons in oncology, we often see the scenarios you describe, and sadly people do need palliative care. But to then see them and their families left destitute after desperate attempts at cures elsewhere, is truly tragic and people like you and Dr Woo are very brave in exposing this publicly, thank you.
Hello Douglas, thank you for your comment. Palliative care, especially in children, is such a hard conversation to have. I don’t envy anyone put in that position. However, I think palliation does not have the same connotations as it used to in the past, and that it can offer patients and their families a dignified and comfortable end of life. I am sad for families for whom (false) hope is given and, as you say, are left with nothing but grief and empty pockets. I am glad Dr Woo has had an opportunity to explain his stance in the SMH with his opinion piece, which will hopefully increase understanding in the community (and stop the trolling!).
Thank you for your blog.
It succinctly sets out this issue, carefully and with empathy for families.
As a nurse providing care for neurosurgery patients, I see the heartbreak of these situations.. for the patients…their families and the healthcare professional who care for them.
Dear Jane, thanks for your comment and for the care you provide. I spent nine months in total on neurosurgery wards, and I found the cases of GBM the most devastating. It can happen to anyone at any age. I remember there was a lady my age who was diagnosed, and she had two young kids. It was really confronting. The ethical issues are so complex and I have a lot of respect for you and others who work in this area. Regardless of what patients choose, we can make a big difference to their experiences. I believe that every kind word and gesture helps. Miko
Miko unless we have an international not for profit healthcare standards and ethics board this debate will go on for another 200 years. If doctors supported a new way forward which I am happy to email to you, which is already supported by your individual professorial peers but at a College level, we hopefully can deal with bullying and the fee issue once and for all. Patients and providers and even the tax payer wins.
Hi David,
Thank you for your comment. Is there a website dedicated to this that I could read, or is it a confidential document?
Miko
Hi Miko
See this link and a video is inside https://prezi.com/view/eqDkQNoq6EY3gQmgcU0F/
David
Hi Miko
See this link and a video is inside https://prezi.com/view/eqDkQNoq6EY3gQmgcU0F/
David
Well said.
I feel like there are no winners in the running public commentary, and that it serves to weaken public understanding of the health system.
There are a limited number of paediatric neurosurgeons in Australia… and I personally know more than a few. I work in public health and am on a first-name basis with a handful of these exceptionally-skilled individuals. I believe there is no such thing as an unskilled or moderately-skilled paediatric neurosurgeon in this country. They are all exceptionally skilled individuals.
The difference in surgical skill between the absolute best paediatric neurosurgeon and the average paediatric neurosurgeon would be virtually indistinguishable to 99.99999% of the population.
The vast majority of the time they make the same clinical decisions, based on the same evidence and circumstances. The make the same incisions in the same tissue. they order the same tests, the same scans, and ultimately this means that Australia’s outcomes are among the best in the world.
Indeed, when a paediatric neurosurgeon makes an ‘unconventional’ decision about a case, they usually end up having to justify it to a panel of their peers, even if the outcome for the patient was positive. It’s a system that ensures the patient’s needs come first, and clinical decisions are usually made dispassionately and based on the best evidence. There isn’t much room for ‘hunches’ or mavericks.
I don’t know Prof Charlie Teo, but I know surgeons who share his confident demeanor, his air of authority, and ability to quickly gain the trust of parents and children. It is a hugely valuable skill, and worth celebrating.
However, what many are missing in recent commentary is that his surgical skill is unlikely to be leaps-and-bounds beyond what is available from any number of his colleagues who work in the public system.
Yes, Prof Teo seems to be willing to take on cases that others decline. What most people fail to recognise is that these cases are rarely curative. He is (possibly) extending lives, he is (possibly) improving lives… but in most of these cases he is not saving lives.
So parents of a child in Perth are told by extremely-skilled surgeons in Perth that “there’s nothing more we can do. Our treatment options have failed. Palliative care is our final choice.”
They fundraise and Prof Teo says “I can help. I can give you some more time, if I operate aggressively.”
He clearly has an exceptional bedside manner. He makes patients and parents feel comfortable in his decisions. That’s important. Prof Teo combines this skill with being the most publicly-visible paediatric neurosurgeon in Australia. It makes sense, then, that he is in high demand.
So they abandon an exceptionally-skilled and experienced Perth surgical team and start a GoFundMe to get their child into Charlie Teo’s appointment book.
This probably leads to some professional envy.
It cannot be easy for a person who has trained for decades in a field to be told by parents ‘Thanks, but we’re taking our child to NSW to see Charlie Teo.”
This is not Charlie’s fault, but it does explain some of the dialogue we’re hearing at the moment. He is in high demand, and his costs are understandably high for out-of-state patients.
For parents and the community, it is important to know that any paediatric surgeon seen through the public system in Australia is going to be a highly-skilled and extremely competent individual. This country has outstanding ongoing training and skill development for surgeons. If they are handed a case that they’re not completely confident in addressing, they are all willing to consult with colleagues and ask for support when they need it.
But all this is missed in the hero-worship of a solitary surgeon.
Dear Jacob,
Thank you for your thoughtful insight into this topic. I completely agree with you. In my very limited time working as a doctor, I have worked in both Plastics and Neurosurgery units, and have also worked 6 months in paediatric craniofacial, so I have seen firsthand what skill it takes to be a paediatric neurosurgeon and I have only the utmost respect for all surgeons who work in this field, including Prof Teo.
I too am concerned that the public reaction to the news will only encourage more people to resort to crowdfunding, as Prof Teo gains even more publicity. This may be bad news for current paediatric neurosurgeons who, as you say, are also exceptionally talented and caring. I agree that Prof Teo is very charismatic and obviously has excellent rapport with his patients and their families. It is a shame that fellow paediatric neurosurgeons who do not have the same celebrity status are having their professional opinions dismissed and their services declined in favour of another surgeon who is publicly celebrated. I don’t know the solution to this problem, but I am glad that Prof Woo has since had an opportunity to publish an opinion piece in the paper, which will hopefully further clarify what the ethical issues are.
I hope that there will be greater public understanding of the way MDTs work; that surgeons remain accountable in their work by going through this peer review process, which predominantly takes place in the public health system (although I know some private hospitals also run audits and MDTs).
Miko
This is completely true and has been happening to families who are being taken advantaged of someone like Dr. Teo.
Hi Clare,
Thank you your comment. This really is a very sad area in medicine, and I can only hope that more families can trust in the public health system so that they are not left financially and spiritually empty after such an experience.
Miko