‘Do not reduce people in the hospital to their biological characteristics’

What would you want if you were dying? Would you want to live as long as possible? Or is the quality of life more important? She finds this a difficult question. But it is important to ask yourself these questions, says Judith Rietjens, since September 2022 Professor at the Faculty of Industrial Design Engineering. Not only is this important in the last phase of life, but also important even if you are completely healthy. After all, anyone can be hit by a bus.

The end of life has occupied Rietjens throughout her career. She started researching it at the Erasmus MC at the start of the decade. One of the outcomes is a checklist (in Dutch) on Thuisarts.nl that helps people discuss how they see their last phase of life with their doctor.

Over the last one-and-a-half years, Rietjens has combined her appointment in Rotterdam and her professorship at TU Delft. She firmly believes that designers can play an important role in supporting her most important mission, that of putting the human first rather than the disorder.

The title of your inaugural address is The person formerly known as the patient. What does this mean?

“The word ‘patient’ comes from Latin and means ‘suffer’ and ‘patience’. It implies that if you are ill, you need to wait for what the doctor says. I argue that people should discuss and co-decide their treatment.

I frequently hear people say that they are only the patient. But we are human beings. We have families, jobs, longings, thoughts, hobbies. If you continue to refer to people as patients, you confine them to a scary role – their disease.

Furthermore, the boundary between being healthy and being ill is becoming more and more vague. We now say, for example, that obesity is an illness. A lot of people are obese. Are they all patients? Or are we just people with signs of illnesses in varying degrees?”

‘Are we not just people with signs of illnesses in varying degrees?’

What is going wrong in the current healthcare system?

“The healthcare system is old and is focused on healing. This is also what gives doctors their reputations. While they know that discussing the wishes of the patient is important, in practice this rarely happens.

The new generation of doctors is well trained to take decisions in consultation with their patients. But after their training, they become part of an existing system. And it appears that this continuing paternalistic culture in which the doctor takes the decisions for the patient has a big impact on them.”

Innovations by TU Delft scientists and others are personalising medical treatments. How does this fit with the personalised care that you envisage?

“We can now precisely adapt certain treatments to a person’s biological characteristics. This is absolutely wonderful as it helps the person live longer.

But it does not look at questions like whether the side effects mean that the person is unable to do something they love like play the piano anymore. Or has to go to the hospital so often that they cannot go on holiday anymore.

We must take care that we do not reduce people in hospitals to their biological characteristics or to a series of scan results or tumour markers that determine their treatment.”

Will you connect technology and humanity?

“I am the one that asks technicians how their innovations meet what people consider important. This is what design scientists do. They are really good at finding out what people consider really important.

I see myself as a connector between healthcare and technology, and between other disciplines too. Art can contribute to science too. I hope I can help people find the link between themselves and others who at first sight seem opposites.”

Judith Rietjens’  inaugural address was accompanied by fitting images by the artist Ola Lanko. 

Healthcare is under pressure. One quarter of the people in the Netherlands should be working in healthcare by 2040 to meet the demand. Is it then doable to make time for more discussions?

“They really do not always need to be in-depth discussions into the early hours. Even in short consultations doctors can make sure that they hear what the person before them wants.

An estimated one third of all care provided does not meet what people want. A simple tool like a discussion can help them avoid starting a full course of treatment for people who do not want it. It can thus save time and money.”

Does concentrating on discussion not take attention away from other structural problems in healthcare?

“The dichotomy is always are you just treating the symptoms or are you treating the disease itself. In the context of an overburdened healthcare system, I believe that my approach actually makes things simpler. Being caring and listening is the key. This starts with a conversation between someone who has an illness and someone who can help.”

What do you think the next Dutch Cabinet should do?

It looks like care will be scarce in the future and will have limitations. We will need to ask some hard questions like what kind of care will we give if there really is a scarcity? What is good for the patient? What is good for our climate, the world, and for society? The Cabinet needs to be brave enough to enter this debate.

While the political field needs to voice an opinion, the decisions, just like those taken in hospitals or care homes, should not be taken behind the backs of people. I am prepared to push for this. Don’t talk much about people, but with people.