HOW HAS IT EVER COME TO THIS?

First English edition April 2018

© Peter Kapitein | Uitgeverij Water BV

Cover and text design:

Hermen Grasman Ontwerp

Cover photo: Shutterstock

Photo of author: Hester Doove

ISBN 978 94 92495 38 9

All rights reserved. No part of this edition may be reproduced, stored in an automated database, or published in any form or in any manner, whether electronically, mechanically, by photocopying, by recording or by any other means, without the publisher’s prior written permission.

PETER KAPITEIN

HOW HAS IT EVER COME TO THIS?

A FRESH LOOK AT HEALTHCARE

INTRODUCTION

‘So who was it — the question churned in Pierre’s mind — who was executing him, murdering him, depriving him of life; he, Pierre, with all his memories, all his yearnings, all his thoughts, all his hope? Who, who could be doing this? Pierre felt that it was no person; only a system, a confluence of circumstances. An impersonal system was killing him, Pierre; taking his life, robbing him of everything.’

War and Peace, Lev Tolstoj (1828–1910)

The news tends to be dominated by issues which affect us all. Interest rates, house prices and the cost of fuel are typical examples. There are a few issues which every last one of us has some grasp of, such as the banking crisis, football, royalty (Queen Máxima being the most popular Royal in the case of the Netherlands) and, of course, who we’d like to see in the White House next time. These are the favourite themes of the press, repeated daily on television and the themes that shape our political preferences.

I have been taken by an issue that affects us all but which gets far less air time. Few people have any knowledge of it, and rare is the person who is actually interested in it. Until we ourselves, or a loved one, become seriously ill, healthcare does not trouble us unduly. Only then do we have anything to do with GPs, hospitals, consultants, medicines, nurses, and then we also discover research and the costs associated with being a patient. When you think about it, it’s quite strange that we know so little about something so vital. In 2014, we in the Netherlands spent about € 95 billion on healthcare, which is about €5,630 per capita. In addition, healthcare provides jobs to many hundreds of thousands of people in the country. It’s a rapidly-changing industry, but is it changing in the right way and serving the interests of the patient, for whom healthcare supposedly exists in the first place?

Ever since 2005, the year of my lymphoma diagnosis, I’ve been particularly interested in healthcare. Above all, cancer grabs my attention. Personally, I’m a fan of the healthcare system, because I’ve had nothing but good treatment, with skilled doctors and wonderful nurses. Due to this, my image of healthcare was positive to very positive in 2005, and I laboured under the misapprehension that everyone was enjoying the same quality of care.

In the ensuing years it dawned upon me that although there are many patients obtaining the good care that I had, there are plenty more who are not enjoying that blessing. I saw more and more indications that something was lacking from our healthcare model. There are inexplicable discrepancies in quality of care from patient to patient, from hospital to hospital, and very much so from country to country. For instance, I was greatly ashamed by a 2010 visit to Curaçao, a Caribbean island which had only just ceased to be ruled from the Netherlands. Patients lay in pitiful beds, and parts of the hospital were roofed with corrugated sheeting. I thought: What are we doing to our people? Have we really not got a little bit more money available, for goodness’ sake, to give them the care they need; the care we enjoy our prosperous Netherlands, which until recently was their country too? I was humbled and filled with vicarious shame by my stay as a guest on that beautiful island among its friendly, hospitable population. As well as shame, I felt anger welling up. I was at the time under the impression that this injustice was caused by evil intent; that Dutch thinking was along the lines of ‘We’ve got things sorted here, and what happens across the Atlantic is their own look-out’.

After a while, it also started riling me that some Dutch doctors who were perfectly able to see what treatment a patient required were bluntly refusing to give it, fobbing them off with arguments such as, ‘This medicine might not be safe yet; we don’t know what its long-term effects are’; or ‘This treatment isn’t administered at our hospital and I’m afraid I’m not able to refer you to other hospitals’; or ‘Sorry, the treatment is too expensive.’ I was hopping mad. Replace those doctors and problem solved, I thought.

Molouk Milani was a patient advocate who was very prominent and active with Inspire2Live. She gave her all in the fight for patient wellbeing and continually called attention to the interests of her fellow patients. Molouk herself had breast cancer which her hospital had taken a year and a half to diagnose. One and a half years was long enough; Molouk transferred to another hospital, Antoni van Leeuwenhoek, where she was given the right treatment. Initially, things seemed to be going well, but ultimately the cancer won out and she died in late 2015. Now, how on earth can it take eighteen months for anyone to work out a patient has cancer? Was this a case of malice, of organised crime?

In 2006, Coen van Veenendaal and I set up Stichting Alpe d’HuZes. This charitable foundation became Europe’s great fundraising success story. We were collecting bucketloads of donations and in the early days had only a hazy idea of the care provided to cancer patients. Our knowledge level grew quickly, however, as did our ambitiousness. We wanted (and still do) to put paid to cancer, and one thing was quite plain to us: we won’t be able to pull that off if we restrict ourselves to just the Netherlands. With that understanding, we founded another body: Inspire2Live. It’s a Dutch organisation but with an international focus on getting a grip on cancer. We set Inspire2Live up to be an activist patient advocacy organisation that would enable us to bring patients, doctors and researchers and their questions under one roof so that they could work collaboratively on a previously undemonstrated way of working; one that is all about the patient and the patient’s loved ones. In all our undertakings, our key question has to be: ‘What is the patient getting out of this?’.

Our strength lies in our combination of emotion with arguments. Emotion is what spurs us on, never to give up, as we remember the many patients who struggle and die. In 2015, four of Inspire2Live’s patient advocates died far too young, leaving their loved ones weighed down with grief. But the arguments, too, come from our patient advocates: they’re well-educated, well-informed, well-spoken and well aware that they’re not always welcome at the table. We like to be ‘appropriately irreverent’ in our patient advocacy. That attitude guarantees you criticism, which is indeed what we got in 2013. With media help, a few critics managed to do a hatchet job on us.

It was in this period, too, that I found out about the work of the German philosopher Hannah Arendt. Arendt is chiefly known for her witness account of the trial of Adolf Eichmann, a Nazi arrested in Argentina in 1961 who was put on trial in Jerusalem. For his role in transporting millions of Jews to extermination camps, he was sentenced to hang. Arendt caused great commotion by observing of the guilty party: ‘Eichmann is an ordinary, ambitious German bureaucrat.’ This was a shocking observation, because it would have been far more reassuring for us if he had been a monster. After all, you can get rid of a monster; problem solved. But ‘an ordinary, ambitious German bureaucrat’ is someone who dwells among us, who could easily be our neighbour — or even ourselves.

Fast forward a little to 2014. While reading Dit kan niet waar zijn (later published in English as Among the Bankers), by Joris Luyendijk, I was arrested by his line that if you replaced all the bad bankers, nothing would change. What echoed through my head was the conclusion: ‘If you replaced all the bad doctors, nothing would change either.’ For me, this was the resolution of all the puzzles remaining in my head. It became clear to me that we are not facing any evil intent, let alone organised crime, in healthcare. But what, then, was the problem?

At a friend’s recommendation, I took a plunge into the world of the Military-Industrial Complex. I did so particularly because this was the first description ever given of an Industrial Complex; the phrase derives from the highly-esteemed former general and outgoing President of the United States, Dwight Eisenhower, when warning of the influence that such a complex could accrue: ‘In the councils of government, we must guard against the acquisition of unwarranted influence, whether sought or unsought, by the military-industrial complex.’ As he put it, such influence did not necessarily make the (US) citizen any safer, but his wording also made it clear that evil intent was not at the heart of the issue here. The complex had been built up by people of good will toward the public they were supposed to be protecting.

As an employee of the financial services industry, I got digging into another such complex, the Financial-Industrial Complex, made up by government and banking. I also, of course, dug deep into the Medical-Industrial Complex: the world of patient organisations, doctors, researchers, health insurance companies, government bodies and, of course, the pharmaceutical industry. I saw profound shared features between these three complexes and at once I grasped what was going on. With Hannah Arendt to guide me, as it were, I set out to plumb the depths of, dismember and describe this conspiracy.

I well understood that anger would not solve anything and yet that something must be done. I wanted to channel my frustration at what I had worked out. I had to know the fine details of it in order to get a grasp of the processes at work in healthcare. As a relative outsider, I wanted to scrutinise healthcare, understand how it worked and think up a solution, so that the patient could once again be the true focus of healthcare. Understanding has to precede the solution, and the solution has to be found — because so many lives are at stake. Oddly, I also knew that if I managed to sound out the Medical-Industrial Complex and offer a solution for the patient, then we would at a stroke be some of the way towards tackling the Financial-Industrial Complex and Military-Industrial Complex as well, because the underlying current, the mechanism at work, is one and the same.

I felt a duty to take on this task because it fits how I want to give purpose to my life, even if it is not fun to expose the problem (just as Hannah Arendt’s conclusion about Eichmann was not fun) and even if the interests of other parties will be damaged if the interests of the patient come first. The resistance and thwarting that is put up will be great and it will be difficult to explain and difficult for many to understand. Yet I found (and still do) that I had to do this.

I have a ‘Kantian’ conviction. Some categorical imperatives, as they are known, are applicable to me. You could also call them principles, or basic assumptions.

• People are equal regardless of their physical or mental condition.

• The patient must always receive the best care appropriate to his or her specific situation and wishes. This is because you always have to help a person in need, regardless of the consequences.

• The patient must be given the best possible care and at lightning speed.

• The patient has the right to self-determination and is the only person who can make life-and-death decisions.

• In healthcare, it’s all about the patient. Everything is there to serve the patient.

For me, these are general and universally valid laws. Everything else takes a back seat to them. I apply these laws because they derive from a process of thinking about right and wrong. From the principle that people are equal, they should also be treated as such in healthcare — and this is not currently happening. If patients need and want the best care, we do not ask ourselves whether we can afford it. Rather, we give the treatment, and if costs rise in time, we will come up with other ways to bring them down. We do not do this by giving treatment to one patient and not to another patient. And the right to self-determination means that the patient decides on everything about his life and death and that what is needed to do so is provided to him.

It is also important to understand that I am structurally dissatisfied when it comes to achieving results for the patient. The pace is painfully sluggish and therefore far too slow. Once we have achieved something, we must not rest on our laurels and lavish in complacency. What’s more, I also accept no disappointments. At most, I may be disappointed for five seconds if something does not work, but after that the focus must be back on looking for the solution. As my grandfather said: ‘If they knock you down ten times, you have to pick yourself up eleven times.’ These may not be basic assumptions for me, but they are methods that I use to accomplish my mission.

After extensive study, much reading and many discussions, I understood the operation of the Medical-Industrial Complex, and this book had to be written. I started writing on 1 October 2015 and the book was finished in August 2016. It was a hard task, and reading this book may not always be pleasant, but it is necessary. If we sincerely want to change the situation for the patient, it is our duty to read it, to accept the consequences and to take the necessary actions to bring about that change. I describe the reality of the patient and what it is that he or she has to live with, but bear in mind that there is also a lot that had to go unmentioned. I give the necessary explanations and yet cannot be exhaustive. I describe the solution and realise at the same time that this is a good beginning but certainly not an end. We still need plenty of help to attain our ideal situation.

However, if I can express the hope that currently shapes my life, then it is this: I fiercely hope that this theme will be picked up and that the interests of the patient come first, and that everyone will respect this and want to work towards it. Should this mean that you have to give up certain privileges or other benefits, then know that this serves a higher purpose. It will be serving the purpose of a person with whom you live and who matters. But before you can receive this from someone else, you first have to give it yourself.

Peter Kapitein,

Patient advocate Inspire2Live,

Amsterdam, 27 July and 8 August 2016

1 A FEW REFLECTIONS ON PRESENT-DAY CANCER TREATMENT

In the early 1960s, a cleaner was walking down the corridors at NASA when he was asked: ‘Who are you and what do you do?’ His answer was great: ‘I am Sam Waters, and I’m helping to put a man on the moon.’

When Peter was a cancer patient

Until 7 January 2005, I lived a reasonably normal life and I was free of guilt when it came to my health. I did take care, but mainly because I did intensive sports (triathlon) and good health helped me achieve that. Suddenly, after a call from my doctor, I became a cancer patient. I had an incurable form of lymphoma, which could be controlled with treatment. That year I was given a lot of chemotherapy, and in 2006, after it appeared that the disease was back, this was followed by another batch — in vain, because the cancer recurred in 2007. That year, I participated in a trial (which is a study on a new form of treatment), in which I received eight sessions of immunotherapy. These too did not work well, and that is why, as a last resort, I had to undergo two stem cell transplants in 2008: one on 18 June 2008 with my own stem cells, and a second on 3 September 2008 with stem cells from an unrelated donor — this was an unknown donor who does not belong to my family. This treatment with double stem cell transplant fortunately proved to be the solution. With it we got the disease under control and since then I have lived a good, happy and healthy life, with cancer. Now, eight years after my two stem cell transplants, I can say that I owe my life to the science that made this possible, and to the sport that provided me with the fitness required to endure the treatments.

At the end of 2006 I came into contact with Bas Mulder, who was only twenty-four years old at the time, with exactly the same disease as me. At least, that’s what we thought. Our variant of lymphoma is called follicular lymphoma. Bas had the same chemotherapies as I had and like me had two stem cell transplants, one with his own stem cells and one with the stem cells of his brother Steph. We had the same disease and the same treatment pattern and even the same doctor. Yet there is an essential difference between Bas and me: Bas is dead and I am still alive.

This made me realise that we did not simply have the same disease: Bas had Bas lymphoma and I have Peter lymphoma. I understood that science has a vital but not an easy task in solving the problem of cancer, which is: ‘Find out why Bas is dead and Peter is alive. Find the differences between Bas lymphoma and Peter lymphoma and how you can treat these different diseases.’

The science is not done yet; we have a job to do. I say ‘we’, because I was convinced and am convinced that no-one can solve this problem alone. It requires collaboration between patients, doctors and scientists, in the right team composition. And I have decided to play my part.

As a cancer patient, I have been dealing with healthcare in the Netherlands since January 2005. And no matter how positive I am personally, in the years following my treatments, I heard more and more different experiences from other patients and loved ones of patients. I heard that there are also quite a few patients who do not feel well helped — and that the quality of treatments differs according to the hospital, depending on where you are admitted, how the diagnosis is made and which treatment you receive.

For example, one patient told me that it had been very carefully determined that her breast cancer did not require chemotherapy. She was saved the nausea and baldness. Another patient, in another hospital, told me that she was put directly on chemotherapy and that her DNA mutation was never looked at. It had simply not been checked whether this chemotherapy was necessary at all. This lady had serious side effects and went bald. Was this necessary? Was this a common occurrence? Inquiries with several patients and also doctors taught me that there is still a lot of room for improvement. We are doing well, but not for everyone. And we must and can make serious improvements in this regard.

It is truly about the patient? Is she getting the best treatment?

I am often called by someone who knows someone else with the question: ‘Where should this patient go?’ So it was with the mother of a friend from secondary school. She has metastatic lung cancer and her district hospital treats that according to the old protocol. The chance of survival is between 6 and 9 per cent, depending on which research you take. My old friend asked me where they could best go for a second opinion. Never mind ‘second opinion’, I replied; no, go without delay to a hospital specialising in lung cancer, such as the Antoni van Leeuwenhoek Hospital in Amsterdam. There they immediately spotted that a new experimental medicine was needed to give her another chance. I do not know whether she’s going to get it. What I do know is that she now has the best treatment available in the Netherlands at the moment. Of course, it is not fair that this is merely because her son happens to know me and asked for help; it should be well organised for everyone.

Every day I receive emails, text messages and phone calls asking where a loved one can best be treated. Many people do not know about such matters, and why would they? As long as you are healthy, there is no need to. These people turn to me because I do know in most cases. And if I do not have the knowledge to hand, I consult some doctors. This way I am gaining more and more knowledge about the Dutch hospitals and medical specialists who are best able to successfully treat a given type of cancer. This allows me to tip off patients to good care. But, of course, this is not solving the underlying problem, which is that the best care should be accessible and self-evident to every patient. It should be regulated by law that the patient is entitled to the best cancer care and access to it. If we look at the oath drawn up by Hippocrates of Kos (460 – 370 BC) — the oath by which doctors promise to observe the professional code of ethics — then a doctor is also required to give his or her patient the best possible treatment: ‘I will put the patient’s interests first and will respect his convictions.’

A doctor is thus required to do everything for the patient — and, depending on the situation, to refrain from actions — to give him or her the best care. There should never be anything standing in the way of this, neither government nor politics not hospital management. The doctor is best able to determine, with the available resources and after thorough information acquisition, what the best possible treatment for a patient is. This is not always the case in practice, because of those selfsame parties previously mentioned, but I would like to argue that the doctor may be firmer in guidance and advice in this matter than presently, in order to contribute to achieving the best care.

But let the doctor walk this path truly together with the patient. To give an example: it may be that a doctor prefers to prescribe a medication that, because of costs or because it has not yet been officially approved, should not be administered. In that case the doctor is forced to deviate from the best cancer treatment. In fact, I think that this is not good either; the doctor should always be able to give the best treatment and to let others solve the problem of licensing and costs.

I realise perfectly well that in conversations between doctor and patient there may be restrictions on treatment options. However, it is the patient’s life, and a politician, bureaucrat, manager or lawyer should never have the last word on it. Ethically speaking, only one person can decide on the life of a patient, and that is the patient himself. In euthanasia legislation, the basic premise is that the patient decides for himself, and I find it strange that when determining a treatment to prolong or save a life, others decide. I see time and again that the patient is not involved at all in the discussion and decision-making about his or her own treatment. Unfairly so, because this is part of our right to self-determination, and the patient’s right should always prevail over any other right.

We are morally obliged to give everyone the best available treatment. By ‘best available’, I do not mean ‘available in the treating hospital’, but available care in any place in the world. In the modern Netherlands we are able to bring all the necessary knowledge to where we are, but we also have the moral obligation to properly regulate access to the best available therapies; not only for those who are lucky enough to enter the kind of hospital where that treatment happens to be available, or who have the right contacts in their circle of friends or have enough money. Family doctors often know where the best treatment is given. And if not, they should find out.

The right to a given treatment differs from country to country in Europe. Now, it is established in the Netherlands that patients have the right to ‘good care’, meeting the ‘professional standard’. This is care as laid down in guidelines, protocols and standards, and must be deviated from ‘if a reasonably competent physician would have done so reasonably in the same case’. This is, of course, far too vague and offers scope to keep patients in your institution while there is a greater chance of survival elsewhere. You can explain the term ‘good care’ in different ways. It has to do with the best possible and best available treatment, and access to that treatment. In my opinion, that must be laid down in law. According to most health insurers, the patient is entitled to care as provided by medical specialists and insofar as it forms part of the (international) state of science and practice.

I myself have experienced how good the care in the Netherlands can be. In finding my donor, I turned out to have a ‘90 per cent match’ with my donor. At the Amsterdam Medical Center (AMC), my doctor, Marie José Kersten, had very little experience with this form of stem cell transplant. She immediately advised that I could best switch to the UMC in Utrecht, because that’s where the doctor is, Henk Lokhorst, who has a lot of experience with such cases’. Thus, I was loaned for nine months to the UMC and to Henk, while Marie José was keeping track of me to learn. She can now also handle the treatment herself and she is even an authority in this area. To make this possible, a patient-oriented approach and professionalism are necessary, but above all a not too big ego and knowing where your strengths lie and where they do not. I have been extremely satisfied with my treatment by Marie José Kersten for years now.

On 4 February 2014, during World Cancer Day, members of the European Cancer Concord — an influential lobby of patient advocates, doctors and scientists who want to improve the position of patients and get them back in the driving seat — published the Cancer Bill of Rights. All EU member states are strongly committed to regulating the rights of the cancer patient. Or, as the report puts it: ‘The best cancer care and access to the best cancer care.’ At the moment, there are still major differences within Europe. The Netherlands is reasonably well advanced, but in other countries people are still at the early stages of achieving this objective.

It is bizarre and unacceptable that such differences exist in Europe. It is only a question of organisation and money to get it in place for all European patients, so why do not we do it? What is stopping us?

What is the best treatment?

Who is best in the field?

How do you determine ‘the best treatment’? How do you decide who is the best at his job? Working groups, steering groups and project groups have been grinding their teeth for years about this, because it had to be thought through very carefully and the judgement had to be based on objective criteria. Just to determine these criteria, people are engaged for years, so there is actually still no solution. When publishing a study that suggested a criterion — for example, that you become better at your profession when you perform an operation more often — voices immediately arose to question this. There needed to be more certainty, more research. Let the patient wait. And why, since it is surely a really simple matter? Or are there other factors underlying the perennial delaying of the answer to the questions: What is the best treatment? Who is the best at his job?

Once you decide who is the best in his profession, you also make plain who is not. And that is upsetting for the people involved. However, in the first place it is about the patient, isn’t it? Give him or her the best treatment and have it done by the best in that field. Well, you might think that in such a case all fourteen thousand breast cancer patients there are annually in the Netherlands would be queuing up to see one and the same doctor. That is not the case, and that’s fortunate. What is true, however, is that the treatment is given by ‘a few of the best’, in a way that has been chosen in consultation with the patient.

Who is the best in his profession is determined by getting on your bike and asking all the specialists at all hospitals: who do you think is the best specialist in the area of oesophageal cancer in the Netherlands? And the second best? For example, you ask each professional field to name their top five, after which you take stock: five points for the best in the first hospital, and one point for the number five. After you have finished all hospitals, you tot everything up. At the top, with the most points, is ‘The best at his job’. Whether that specialist really is the best, or the second best, is less relevant. It allows you start from excellent quality. And that is exactly what it is in many situations: honestly saying that one is just better than another. Or at least that someone is outstandingly good. Everyone has his talents, qualities and lesser strengths, so why should doctors and researchers differ? In addition, it is true that ‘the best’ will also have formed the best team, or be allowed to work in the best team. Nobody does things alone or can even do things alone. Every practitioner has a team of specialists around him that will make the diagnosis jointly, from which the best treatment and follow-up follow. In short, a practitioner is as good as the sum of his team members.

‘The best at his job’ can be determined in a few weeks. If you say that you are not able to do that, in my opinion you have something to hide or protect. By doing so, you are placing the importance of yourself, your institution or something else above that of the patient. Or you are not assuming responsibility. I deliberately say this sharply here, because it is evident that ‘the best’ is also a relative concept. When colleagues adjudicate someone as the best, the number two or four will also be excellent. It can also vary per interview round and different results will be obtained over time. However, we need this clarity for the further course of the book.

The cause of the slow process of stating who is the best at his job and the associated concentration of cancer care is a product of the capitalist system of market forces on which our health care is based. Transactions are paid for, and this means revenue and income. Determining what the best treatment is and who the best at his job is disrupts that status quo, and that of course is not ‘supposed’ to happen. Imagine that patients no longer come to a hospital, because they do not get the best treatment there. Or because it turns out that a surgeon simply does bad work. That is not allowed, because it means loss of turnover. And yet this is what needs to be done: determine the best treatment and identify the best at his job. There’s no other way to put the patient back at the centre of things.

Concentration and specialisation in cancer treatment

‘If we don’t execute what we already know, it’s a scandal.’

Sir David Lane (1952)

When you think about it, it’s odd that we’re still treating the world’s most complex illness in a hundred different hospitals. Cancer has more than a hundred variants and within those variants we also have hundreds of differences. But if we look even more closely, cancer is a disease of the individual, with a manifestation that is very personal. I spoke earlier about the difference between Bas and me, the difference between Bas lymphoma and Peter lymphoma. In recent years, I have increasingly felt that concentration and specialisation of cancer care are requirements for a better quality of this cancer care. Practice makes perfect, you could also say. The more often you perform a task, the more you train yourself, the better you become. For a sportsman like me, this all sounds very obvious.

Through scientific research and the resulting knowledge, new diagnostic possibilities and treatment methods for patients are becoming available. What is striking in this development is that patients do not always benefit, or sometimes too late. For example, because they are treated in hospitals where the level of cancer care is lower than the level in the specialist hospitals and above all at academic cancer centres. Discoveries are often made in these centres and put into practice there first. But, of course, all patients should benefit from new treatments, not just the patients who happen to walk into these centres or have the luck to be referred.

In recent years, therefore, a discussion has arisen, and development is under way, to increasingly concentrate cancer treatments at cancer centres and to require treatment providers to specialise more. I have followed and led many discussions on this subject, and if you listen carefully, everyone knows that this development is a good thing. Nevertheless, concentration and specialisation are difficult to get off the ground in the Netherlands. Patients need acute help, but healthcare does not always offer a suitable solution. What is going on here?

Concentration of cancer care

A major problem in the concentration of cancer care is the debate over quality criteria. Take, for example, the number of patients treated, which naturally has its limits. Above a certain number of operations, it will make little difference if you do more. For example, should a surgeon (or team) do fifty or one hundred breast cancer operations per year to be labelled as good? Or maybe more? And how do you determine the appropriate number of operations for the hospital as a whole? Hospitals want a low minimum standard to secure their operations and thus their work and income. Patients should not settle for less than two hundred breast cancer operations per surgeon per year, because anything less than that is not a brisk experience rate. A more experienced surgeon will probably deliver higher quality. Everyone knows that, and that is why we should not settle for a lower standard. In other countries, there are examples of how it is possible to run mass production and at the same time bring the quality to the highest level.

What about a pilot who normally flies a Cessna and thinks one morning: Hmm, I’ll hop on a Boeing 747 today. I have never flown one, but I fancy it. If the passengers got wind of that, the plane would empty out immediately, and rightly so. With the patients in the waiting room of a breast cancer surgeon, it should not be otherwise — although that is unfortunately the case. Many remain, because they just do not know better. It is also because there are no guidelines in the Netherlands that do justice to the information needs of the patient, but that have also been drawn up carefully so as not to harm the interests of the hospital or the doctor. That is the problem we have to solve. Why does not this occur?

Here are two examples from Dutch and one from German practice showing that surgeons get better when they do more operations:

The figures of Professor Cock van de Velde (a surgeon at the Leiden University Medical Center) clearly show that the Netherlands is underperforming in the area of stomach cancer, both in terms of post-operative mortality — patients dying within thirty days after the operation as a result of complications — and in terms of five-year survival. By way of comparison, in Europe, the five-year survival rate for stomach cancer is 24.5 per cent and in the Netherlands 18.1 per cent. This is due on the one hand to the enormous spread of the number of operations in the Netherlands, which means that surgeons have little specialist experience. On the other hand, relatively many operations are performed in hospitals with not necessarily the busiest intensive care units. IC wards are divided into categories because you need different kinds of intensive monitoring for different illnesses. It is not the quality of the surgeon, but the lack of the best intensive care that is the cause of the patient death rates. How easy is this to prevent and why do not we do it? In-hospital and post-operative mortality may decrease with a concentration of surgery for oesophageal cancer at specialist centres that have intensive care at the highest level. Oesophagus operations will then be of better quality and will result in fewer complications. The possible complications that still may occur can be better accommodated in these centres with their highly qualified intensive care units. In the Netherlands, 739 oesophageal operations were performed in 2012, spread across twenty-five hospitals. On average, then, there are fewer than thirty operations per hospital. These interventions can be done much better at just two specialist hospitals, preferably academic ones and geographically well distributed across the Netherlands. More is not necessary. The results in post-operative mortality and the five-year survival will demonstrably improve. The science is already in on this.

At the Martini Clinic for prostate cancer operations in Hamburg they perform 2,300 operations a year and the results are there to be seen. The number of patients leaving the hospital there without incontinence and impotence is 60 to 70 per cent higher than at Dutch hospitals. It is shocking that the Netherlands, after seeing such figures, is failing to accelerate the concentration of prostate cancer care. Incontinence and impotence are dramatic reductions in quality of life. What is stopping us from implementing this immediately?

There are fine examples of surgeons who are demonstrating what needs to be done, and can be done, in the Netherlands.