7 July 2021

Resolute late bloomer

At school, she was a self-described goody two-shoes. She calls herself a late bloomer and jokes that she only entered puberty when she went to university. Naturally, she studied medicine, following in the footsteps of her grandfather, sister and one of her brothers. Marieke van den Beuken–van Everdingen was 49 when she obtained her PhD and 56 when she became professor of Palliative Medicine. “It took a while for me to find my feet. And in my day, internal medicine was still mainly a man’s world, which didn’t help either.” Here she talks about quality of life, flying from Eindhoven to Maastricht and meeting former health minister Els Borst.

Marieke van den Beuken
Marieke van den Beuken

Her parents paid for her studies, but she was hardly flush. “Whenever I went out I’d only eat oranges the night before to save money. Responsible as I was—I was the eldest—I made do with what I had. And I never complained to my parents, much to the dismay of my brothers and sister: they had to make do with the same modest allowance later. It was a nice family; my parents’ attitude was that normal is good enough. Every year we went on holiday to Cadzand, and don’t get me wrong, those were wonderful holidays, but I recall that just once we wanted to fly somewhere. So my mother got on a plane with us in Eindhoven and my father picked us up in Maastricht. So now we’d flown,” she laughs. “And I loved it!”

Life can’t be planned

She completed her specialisation in internal medicine in Maastricht in 1992. By then she was married to Joop, whom she had met at the hockey club. “It felt right straight away. Within six weeks we were in Paris and we’ve now been married for about 30 years.” These days, 45% of the specialists in her field are women, but back then there was no guarantee that a married woman could become an internist. “In Eindhoven, where I did the second part of my specialisation, I was the last woman standing. In Maastricht I was advised by a well-meaning professor of Internal Medicine to become a company doctor—that would be easier to combine with the children’s school hours. Fortunately, a lot has changed.”

After a year of working in the ICU, she became part-time head of the outpatient clinic in Heerlen. “It sounds great, but I was ‘Marieke’ and the rest were ‘Doctor’. I liked the work and learnt a lot; I saw all kinds of different patients and could combine it with raising the children. But in the end it wasn’t good for my ego. I was seen as a great assistant, never as an equal partner. Maybe I should have stuck up for myself and been more assertive, but that’s not me. I’m more about harmony, and luckily I got there in the end. I always say to my children: life can’t be planned, so just take your chances—then you’ll end up where you belong.”

Palliative care is actually a very positive profession, focused on quality of life. You can make such a difference for patients and their loved ones who are dealing with a life-threatening illness.

Palliative care is about quality of life

Marieke van den Beuken

When Van den Beuken–van Everdingen was invited in 1998 to set up a centre for the development of palliative care in Maastricht, she didn’t think twice. Els Borst, then minister of health, believed the Netherlands had some catching up to do in the field of palliative care. “And she was right. Six university centres were given a pot of money to set up an expertise centre. Maastricht was one of the first, but all the academic hospitals now have a centre like this. Palliative care in this country owes a great deal to Els Borst, she was the trailblazer. I once sat next to her; by then she was no longer the health minister but vice president of the Health Council. Afterwards everyone was curious about what we’d discussed. Bathrooms, I said.” She roars with laughter. “We were both in the middle of a renovation. I’m cursed, of course.”

She loves her job and is proud of what she has achieved so far. “Palliative care is actually a very positive profession, focused on quality of life. You can make such a difference for patients and their loved ones who are dealing with a life-threatening illness. Palliative care is not an independent specialism, but it’s come to be seen in the Netherlands as a generalist skill where every doctor and nurse should know the basic principles. One of the tools we use to decide whether a patient needs palliative care is the ‘surprise question’: as a care provider, would I be surprised if this patient were no longer alive next year? If not, now’s the time to see what we can do for the patient in terms of palliative care. We look at not only the physical aspects—the disease—but also social, psychological and existential aspects. Pain management is an important part of palliative care, but it’s also about entering into a dialogue with the patient about his or her wishes, values ​​and needs. For example, would I want to be transferred to intensive care? What happens then? That’s perhaps one of the few positive outcomes of corona: that it’s become less of a taboo topic.” 

Not scared of death

Although there is still much to be done, including more evidence-based research, she is proud of what has been achieved here in Maastricht. “Nine specialists have now completed the palliative care course, and more and more nurses are being allowed to follow it too. This way, we’re trying to get palliative care into the DNA of the organisation. And we recently finished the Pasemeco project, which lays the groundwork to include palliative care in the basic medical curricula, where it used to be ignored entirely. Now there’s a great website with lots of educational material that anyone can use.”

In addition to her work for the palliative care team, which primarily plays an advisory role, she still sees patients. She spends two half-days a week at the oncology pain clinic, working on pain management and palliative care. How does she feel about dealing with so much death? “I can handle it well,” she says after a long pause, “except when I got breast cancer myself 10 years ago. With all the surgeries and chemo, I was off work for a year. When I returned, I did initially find it hard to see breast cancer patients showing up with metastases after five years. But that fear seems to have faded. I’m not afraid of death. The way I see it, when I’m dead I’m simply gone, full stop. I hope my turn won’t come for a while yet—there’s still too much fun to be had here. One of my colleagues once said: dying is not that hard, saying goodbye is hard. That, I believe.”

Nine specialists have now completed the palliative care course, and more and more nurses are being allowed to follow it too. This way, we’re trying to get palliative care into the DNA of the organisation.
By: Annelotte Huiskes (text), Hugo Thomassen (photography)