Interview with Judith Rietjens: "We need to cherish the conversation again”

News - 23 January 2024

Judith Rietjens is a Professor of Design for Public Health at the TU Delft | Faculty of Industrial Design Engineering and Erasmus MC’s department of Public Health. On 26 January, she will give her inaugural lecture at the TU Delft Aula. What was it that sparked her line of research? Why did she join the Faculty of Industrial Design Engineering (IDE)? How does she see the evolution of the healthcare system? Find out in this interview.

Research into how people deal with illness and death appears to be the common thread in your research. Where does this interest come from?

"I grew up in a small village that had a small library. I quickly finished reading all of the kids’ books, so the librarian allowed me to go to the adult section. For some reason, I grabbed the books about AIDS first. It was so interesting. At that time, HIV was not yet a chronic disease; people still died from it. I soon understood that death was an essential part of our lives. It seemed so important to me, and so elusive at the same time. That's why I started studying health sciences. To understand how people deal with illness and health."

I soon understood that death is an essential part of our lives. It seemed so important to me, and so elusive at the same time.
― Judith Rietjens

"After my graduation I joined Erasmus MC, with a focus on questions around euthanasia and palliative sedation for people who are suffering unbearably and will not get better. How often does this occur? With who and in what circumstances? At the time, I occasionally received hate mail regarding my research, especially from the United States. That was quite shocking, but it taught me that, as a researcher, you can play a special role. You can offer facts, and you can also weigh in on the debate by taking a stance. If you strive for the latter, it is important to look at different contexts, different cultures."

Judith's oration has been translated by artists Arlon Luijten (performance), Ola Lanko (visuals) and Micha Hamel (poetry). These translations can be experienced before, during and after the oration. This is a visual by Ola Lanko.

Looking at illness and death from different cultures and contexts. How do you do that?

"By looking for fields of tension, taboos. Early in my career, I was researching the practice of euthanasia. Here you are at the cutting edge of what is ethically and legally permissible and what is not. I started asking myself questions about the difference between what care people receive and what they actually prefer. How do we deal with illness and the taboos linked to these matters? Researching taboos is fascinating, but perhaps at the same time the hardest thing you can do."

It's fascinating to research taboos, but perhaps at the same time the hardest thing you can do.
― Judith Rietjens

What do you see as the core of your research, your mission?

"I think my life mission is the search for answers to the question, ‘How to deal with taboos?’. People have difficult decisions to make about life and death. What do people want for themselves? How do they weigh the quality of life with side effects of treatments? I am convinced that a good, open, conversation should be the basis of care and treatment."

"This conversation is important because everyone is different. Everyone deals with illness in their own way. We have created false expectations of care in recent years – the idea that care will always be available and it will fix you. Dealing with illness and death has been taken out of society, out of our living room. I advocate for a re-evaluation of the conversation, where dealing with illness and death has its place. If people can express what they think is important, they are more likely to get the care that suits them. Consequently there will also be people who opt for less care. Think of people with incurable cancer who receive heavy chemotherapy in their last week of life, or undergo surgery. Do they really want this?"

How do you design a conversation like this?

"You have to take many factors into account. For example, people are quite stressed when they have a conversation like this, so they often forget more than half of what was said. You can train healthcare providers so that they are better prepared, but in reality these conversations are often either not had or are only spoken about in part. It also requires a huge amount of medical knowledge in order to offer someone evidence-based treatment options. So the question becomes, how do you have a conversation despite many stress factors and a ton of information, which could quickly become outdated?"

I joined the TU Delft | Faculty of Industrial Design Engineering to find new types of answers. Designers are trained to look at complex systems.
― Judith Rietjens

"I joined IDE at TU Delft to find new types of answers. Designers are trained to look at complex systems. Now I zoom out more and look at the context in which the conversation takes place. It makes my research more complex, since it might be easier to create a script for a one-to-one conversation than to look at how to contribute to such a conversation from a systems perspective."

Made by Ola Lanko.

How did you get in touch with the Delft designers?

"I work with a group of surgeons. They specialise in pancreatic cancer surgery, a very aggressive type of cancer. I had a conversation with Casper van Eijck, one of the surgeons. He asked for my insights to better help patients decide on surgery. Casper’s struggle is that he is often feels like “his back is against the wall”, because the outlook of the patients is so bad.

Through Casper, I came into contact with the late Ingeborg Griffioen , who was doing research on pancreatic cancer at IDE, together with her PhD team. We worked very well together. Ingeborg joked that I have an inner designer, because of my systemic thinking. Later, I was encouraged by Professor Maaike Kleinsmann to apply for a position in the faculty. The move was exciting, as I only recently started collaborating with designers at this point. Because of my experience with Ingeborg and Maaike's confidence, I knew I could turn around my research."

What do you hope to achieve with your research?

"We need to learn to cherish the conversation again. People will feel more heard, and in addition it can put less strain on the healthcare system. The basis of this conversation is empathy, which is an important human trait. It provides a counterbalance to care that is becoming increasingly technical. In fact, we can use technology to support the conversation in care. For example, by making smart use of data to calculate personalised treatment effects. Or by giving people information about their illness, at home, at a quiet moment, and in a way that suits them. This also helps the patient to keep control. Technology can be part of the solution, but under no circumstances should it completely replace the conversation."

Technology can be part of the solution, but under no circumstances should it completely replace the conversation.
― Judith Rietjens

"Currently everything is coming together. Human-centred care, technology, sustainability. They are all connected. We are evolving from giving 'good' care, to human-centred care in a context of a chronic shortage of caregivers, and in the context of climate change. For instance, chemotherapy at home may be more easy for patients. But will it be feasible for healthcare providers? And what is the environmental impact of some treatments? All areas of tension are coming together. That makes it wildly interesting for my research. I will continue to look at the entire field through a designer's systemic lens."