We need to discuss death more often and better

A green park with the Erasmus MC hospital in the background.

A good conversation about the patient's wishes should be the basis of the right care and treatment. These are the words of Erasmus MC professor Judith Rietjens. But conversation like these do not always take place. Judith Rietjens' goal is to organize healthcare in such a way that everything is more in line with what is important to patients. Healthcare is still very much a 'one size fits all'. According to the professor, we still don't listen enough to what patients find most important.

Rietjens: 'The fear during such a conversation is that patients want all kinds of things that we cannot give them. But research shows that if you carefully talk to patients and their loved ones, many people opt for a less stressful and less intensive treatment. Especially if they are seriously ill and will not get better. Sometimes a specific treatment can extend life, but it also creates many side effects. The quality of life also plays a role in the choice of whether or not to continue treatment.'

Bio
Judith Rietjens has been working at Erasmus MC in the Social Health department for more than 20 years. This department focuses on promoting the health and well-being of the population as a whole, rather than individual patients. Since 2022, Rietjens has been professor of Design for Public Health at TU Delft and Erasmus University Rotterdam. She conducts research and teaches at both universities.

Photo of the outside of Erasmus MC.
Jonathan van Rijn

Better conversations between doctor and patient

Our healthcare culture is primarily focused on healing. Also the financial system behind it. The only money available is for treatments. Our system is completely focused on providing care, while sometimes not treating someone is the better option.

Rietjens: 'Technology is increasingly becoming part of healthcare. The new developments are very cool. But it is important that technological developments go hand in hand with what people want and what is useful. It always starts with the patient, they should be the main priority. The level of decision-making differs per patient, which can be an adjustment for doctors. It's not always easy.'

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Research into terminally ill people

Judith has been researching terminally ill patients for a long time. Even though the conversation about the approaching end of life is very important to have, for many people it is a difficult conversation. 'If people want to, it's good to talk about it. Starting the conversation is the hardest. Doctors often do not want to give the impression that they are giving up on someone', says Rietjens.

'If people are chronically or seriously ill, it is important to introduce realism. Especially when care becomes scarce. In a conversation it is good to indicate what is still possible and what is not. Doctos should state specifically that it is also an option not to continue treatment. Some doctors certainly do that. But it is not yet the standard.

Professor Judith Rietjens is a guest at talkshow Studio Erasmus and is being interviewed.
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Specialties from Erasmus MC & TU Delft come together beautifully

To treat or not to treat? What treatment is best? And what will the care process look like? These are questions that should be answered in the consultation room with doctor and patient. But that is often not the case. Many more factors play a role in decision-making: the design of the healthcare system, the patient's home situation, the role of relatives.

'The conversation is much more complex than the consultation that we often focus on. That is where the collaboration between Erasmus MC and TU Delft comes into play. Designers can better zoom out and view the entire system from above', says Rietjens.

Redesigning healthcare

Many people think of industrial designers as creators of products. But that has not been the case for a long time. Increasingly it is about designing processes. Also for healthcare. Rietjens: 'In my field, I look at care and treatment. Making sure healthcare really fits with what is important to the patient. Everyone in healthcare has their own interests: doctors, health insurers and patients. That must be an appropriate whole. The project 4D-picture is a good example of this.'

Hoogleraar Judith Rietjens is te gast bij Studio Erasmus.

Hoe krijgt de gezondheidszorg meer oog voor de patiënt? - Studio Erasmus

Judith explains: 'Different treatments are possible for a certain type of cancer. Large data sets can be used to calculate the effects of treatment A and treatment B for a patient. This can help with the selection process. About life expectancy, but also about side effects, for example.'

'It's great that these digital tools are available. But how do you make it understandable for the patient? Can the patient view the data themselves? Or can that only be done together with the doctor? And when are you going to discuss this? Designers can do this very well. They know better than anyone how to design and present these digital tools in a user-friendly manner so that it is understandable and clear for everyone. Anything to make sure the patient receives treatment that suits him or her as best as possible.'

More information

More stories about sustainable solutions

Listen the podcast episode with Judith Rietjens on Spotify
 

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