The phone call came just before Christmas. Five hospital administrators were on the phone with the then outgoing minister Hugo de Jonge on Monday 20 December. His message: a child who needs heart surgery will soon have to travel to Utrecht or Rotterdam. The pediatric heart centers in Groningen, Amsterdam and Leiden must stop operating within two years.
The minister thinks that ‘concentration’ improves care for children. “I have given the involved UMCs the opportunity several times to come up with a joint proposal,” he writes in a statement his letter to the House of Representatives. “The centers have not come to an agreement among themselves and have explicitly left the decision-making to me.”
And so Hugo de Jonge made a decision at the last minute of his ministerial term on an issue that has been going on for almost thirty years.
The injured medical specialists are furious: they feel “overwhelmed” and “sidelined”. Everyone agrees that there are too many children’s heart centers. But how did De Jonge come to this choice? And why has the consequences of this decision not been investigated?
The Dutch Healthcare Authority offered to conduct an investigation beforehand. The Ministry of Health, Welfare and Sport did not comment on this. Doctors in Groningen are now saying that children will die, in Rotterdam that you can save children’s lives saves.
The children themselves have not been discussed in this matter either, concludes Children’s Ombudsman Margrite Kalverboer. Last week, she called on the minister to reconsider the decision, in particular the closure of Groningen. Children from the north of the Netherlands, in particular, will soon have to travel far, perhaps for the rest of their lives. The Ombudsman for Children quotes one of the patients in her letter: “Actually, the minister should take the train from Sneek to Utrecht.”
And the minister himself? He has since been succeeded by Ernst Kuipers (D66), former hospital director of Erasmus MC in Rotterdam. Kuipers has been a strong proponent of concentration in healthcare for years. He calls the longer travel time for patients and their families “very annoying”, but stick to the plan.
Read also this profile of Ernst Kuipers
After weeks of commotion, the five hospitals involved were allowed to visit the ministry last week, where the decision was discussed. VWS says it is “understandable” that the hospitals want an explanation. A ‘further explanation’ is being worked on as to why Rotterdam and Utrecht were chosen.
Hugo de Jonge’s decision fits in with a trend in healthcare that has been going on for some time. Over the years, operations have become more complicated and quality requirements higher. It is therefore wise to only perform such highly complex operations in one or a few hospitals. There have been many such centralizations in recent years.
Cons
There are also drawbacks. With the disappearance of specialisms in the hospital, years of accumulated experience also disappear. And in an emergency, the doctor with the right expertise is always further away.
When it comes to congenital heart defects, the discussion about operating in fewer centers has been going on since 1993. About 1,400 children are born with a heart defect in the Netherlands every year. They often need major operations – in their early days, but also in the years to come. The children are operated on by highly specialized teams that know how to operate on a heart a few centimeters in size or to puncture vessels of a few millimeters with magnifying glasses and magnifying glasses.
There are too few such operations for all treatment teams in the four pediatric heart centers, which are spread over five hospitals (Leiden and Amsterdam form one centre). Physicians should be given the opportunity to treat very rare abnormalities on a regular basis. The more often they do this, the better the outcomes for the patient. For example, an average of 180 babies under thirty days of age are operated on every year. A hospital must perform sixty such operations per year, calculated the profession. Under the age of sixty, the risk of death increases.
It is therefore necessary that fewer centers provide such treatments. So far, those involved are in agreement.
“Only: the step between ‘centralization is sensible’ and ‘we choose these centers’ is inimitable”, says Attje Kuiken, Member of Parliament for the PvdA. The justification for choosing Rotterdam and Utrecht is completely lacking, she says. “Closing a children’s heart center has far-reaching consequences. It must be explainable.”
The doctors from the hospitals who have been affected also think so. The five criteria that De Jonge mentions are vague, they say. There must be a complete children’s hospital where all “common complications” can be treated. Nico Blom, head of pediatric cardiology at the centers in Leiden and Amsterdam, is excited on the phone: “What common complications are those? What are we missing in our children’s hospital that is necessary according to the minister?”
The ‘robustness’ of a hospital to be able to expand also counts. Blom: “How do you measure that?” Like others, he would like to see the substantiation. “This will not benefit the collaboration between hospitals.”
Hospitals are now openly questioning each other’s quality, while the Health and Youth Care Inspectorate writes thatWhen it comes to quality, all four centers qualify for a license.
There is also uncertainty about the consequences of the decision. “It’s an official itchy word,” says Kuiken, “but there is no” impact analysis created. What does this mean for patients, for parents, for hospitals, for other care?”
Children’s IC must also be closed
In Leiden they think they know that. If we stop operating, the pediatric intensive care unit must also close, says Nico Blom. “We now have 12 ICU beds for children,” he explains, and eight of those beds are occupied by patients who have undergone heart surgery. “If we stop those operations, we will be left with four beds in Leiden: for children with the RS virus, for example, or children with stem cell treatment. Four beds is not a viable pediatric ICU. You cannot hire a full-fledged nursing team for that.” And if the pediatric IC disappears, the stem cell treatments for children in Leiden will also disappear. “It’s like drawing a card from the house of cards.”
Also in Groningen they hope for an investigation into the consequences of closure. Many people at the hospital are concerned about this decision, says Eduard Verhagen, head of the children’s hospital at the UMCG. He says that stopping pediatric heart operations in Groningen is life-threatening. Sometimes, in an emergency, every minute counts. “The team that would partially disappear is the same team that rescues critically ill children.” Verhagen cites the example of drownings and severe blood poisoning. In such a case, children have to be put on the heart-lung machine as soon as possible, and in his hospital the heart surgeons puncture the vessels of small children for this.
Pediatric heart surgeon Wouter van Leeuwen from Erasmus MC in Rotterdam opposes Verhagen’s reasoning. “With such statements you unnecessarily frighten people.” His hospital has now set up a web page on the centralization issue. Under the headline: ‘Children’s heart centers: What’s the real deal?’, Erasmus MC counteracts. Drowning people can be rescued without a pediatric heart surgeon, it says. Van Leeuwen: “Connecting the children’s heart-lung machine via a blood vessel can also teach the pediatric IC doctor.”
Pediatric heart surgeon Bram van Wijk of the UMC Utrecht wants concerns from Groningen to be seriously considered. “But we must avoid redoing the process that we have been working on for twenty years. Important pediatric heart surgeons will soon be retiring. There is a real need to speed up so that their expertise can be transferred.”
Read an opinion piece by Ernst Kuipers about merger hospitals here: Long live the big hospital
The ministry says in a response that an “impact analysis” may still follow. The ministry did not consider such an analysis necessary to make a decision. It could, however, help to map out implementation problems, VWS argues. Should the cessation of operations by doctors in Groningen, Leiden and Amsterdam produce “undesirable and unacceptable effects”, VWS writes, “it will have to be considered what is needed to deal with those consequences”.
When it comes to travel distances, De Jonge and Kuipers point out in their letters that most pediatric heart care can be planned and the distance is therefore not of vital importance. But that is far too short-sighted, says Verhagen from Groningen. “30 percent of heart conditions are not seen on ultrasound before birth,” says Verhagen. “Sometimes a baby deteriorates unexpectedly after birth, so a pediatric cardiologist needs to be seen quickly.”
There is still a problem with the closure of the children’s heart center, says Verhagen. “The minister hopes that a large part of the team of pediatric nurses will move to Utrecht or Rotterdam after his decision.” A misconception, says Verhagen. “A nurse from Groningen does not say to her partner: ‘We are selling our house and are going to live in the middle of the country’. When pediatric oncology centered in Utrecht and disappeared from Groningen, only 2 of our team of 35 left for the new center. The rest went to do something else in the hospital.”
Verhagen thinks that children’s ICU nurses will be lost. “There is a huge shortage of pediatric ICU nurses. Every year, when the RS virus emerges, children have to be hospitalized as far as Germany and France. The minister is taking a colossal risk.”
The minister wants the two children’s heart centers that stop operating to continue to do the checkups, diagnostics, physiotherapy and, for example, rhythm treatments. In this way a regional heart center continues to exist. Rotterdam is already collaborating with Nijmegen. Pediatric heart surgeon Wouter van Leeuwen gives the example of a baby who is in the ICU in Nijmegen to recuperate for an operation. “The baby is only brought to Rotterdam just before the procedure.”
Verhagen from Groningen says that such a collaboration in the past in pediatric oncology was not much. He advocates a model with three pediatric heart centers that operate, but where operations are divided according to expertise, so that the quality standards are met. Rotterdam, Groningen and the Amsterdam-Leiden center submitted such a proposal to the Ministry of Health, Welfare and Sport in June last year – to the dismay of UMC Utrecht. The signature of Ernst Kuipers, then hospital director of the Erasmus MC, was under that plan.
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