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What should clinicians do when a patient does not regain full consciousness? How do they decide whether to continue life-prolonging treatment when the patient cannot participate in the decision? For a long time, there were no clear answers. There was no structured decision-making process, misdiagnoses were common, and ethical uncertainty prevailed. Doctors often found themselves without guidance, lacking both knowledge and a defined procedure.
A well-known early example is the Stinissen case in the 1980s. Ineke Stinissen spent eleven years in a nursing home without signs of consciousness. Her husband, unable to end what he considered unnecessary suffering, eventually turned to the courts and the media. The case drew international attention.
The Dutch Model: unique worldwide
For decades, research into severe brain injury beyond the acute phase received little attention. That changed when physician-researcher Jan Lavrijsen devoted his career to the topic. His pioneering work highlighted that care, science and ethics cannot function in isolation. This insight resulted in what is known internationally as the Dutch Model: a unique chain approach within an expertise network that links care for people with prolonged disorders of consciousness (PDOC) across hospitals, rehabilitation centers and long-term care.
The approach focuses on a small but complex patient group. Each year, 100 to 150 people in the Netherlands live with PDOC, a number rising due to improved survival after trauma through AEDs, trauma helicopters and advanced intensive care. Since 2016, care and expertise have been organized in the national Network of Expertise for Severe Acquired Brain Injury after Coma (EENnacoma). Since last year, this has evolved into a dedicated PDOC target group network with several long-term care expertise centers and a PDOC Knowledge Center linked to Radboudumc.
A key element of the Dutch Model is the Mobile Expert Team PDOC (MET-LBS). The team originated in Nijmegen ten years ago and now works nationwide. It supports diagnostics, treatment decisions and family counselling from hospital to home. Research found that 41% of patients initially thought to be unconscious did show signs of awareness. Thanks to this chain-wide approach, misdiagnosis has been reduced to zero. In 2018, the government officially recognized this care as insured care for all ages and the full chain was launched in 2019.
Jan Lavrijsen: connecting healthcare, science, education and ethics
Jan started as a doctor in a nursing home, where he felt powerless when caring for patients with prolonged disorders of consciousness. That experience launched his mission to integrate science and ethics into nursing home care. This mission aligned with the development of the new medical specialty then called “nursing home medicine” (verpleeghuisgeneeskunde), now since 2009, Elderly Care Medicine (Specialisme Ouderengeneeskunde).
His first case description in the Dutch Journal of Medicine in 1990 marked the beginning of major change. At that time, treatments could continue indefinitely, legal frameworks were absent and ethical dilemmas were unresolved. By drawing attention to this moral impasse, Jan and colleagues helped shape the recognition that doctors may end futile medical treatment, a principle gaining traction internationally.
In 2004, he was invited to a Vatican conference on the moral limits of treatment for patients in a vegetative state, now called unresponsive wakefulness syndrome. This marked his international breakthrough and positioned him as a leading voice on PDOC care and end-of-life decisions.
In the years that followed, he focused fully on developing training and research within Elderly Care Medicine. He helped establish the first training program, led it for eleven years and supervised many doctors in training. To secure his mission for the long term, he founded the research group “Niemand tussen Wal en Schip” in 2012. Now nearing retirement, Jan is digitizing his extensive archive to preserve his knowledge for future generations. His hope is clear. “My dream is that we continue to provide appropriate care for everyone with PDOC. We should include the voices of patients themselves, in whatever form, as much as possible.”
Willemijn van Erp: pioneer in PDOC research and specialist care
Willemijn began her career as a neurology resident, where she noticed the uncertainty surrounding patients who did not wake up after acute brain injury. “Doctors and relatives often had the same questions,” she recalls. What does the patient experience? What is the prognosis? How do you support family members? These questions led her to long-term care, where she began her PhD in 2011 under Jan’s supervision.
She was among the first Radboudumc PhD candidates to study the long-term course of often young patients with very severe acquired brain injury. Willemijn combined her specialization in geriatric medicine with a PhD in PDOC as part of the AIOTO program. At that time, no specialist rehabilitation existed for PDOC patients over age 25 and misdiagnosis was common. Her research demonstrated that 41% of patients thought to be unresponsive did show signs of consciousness when examined closely.
Within the ON-SCOPE research group, part of UKON and the Department of Primary Care, she now builds on the foundations laid by Jan. Together with Berno Overbeek, another PDOC PhD graduate, she continues to advance research, patient care, education and the supervision of new PhD candidates.
Willemijn looks ahead. “I hope for much more collaboration with experts and scientists from other fields. By bridging research, technology and practice, we can work together to achieve better, personalized care.”
