In what ways are families involved in end-of-life decisions in the ICU? Is there a difference in this regard between neonatal ICU (premature infants), pediatric ICU, and adult ICU? What does collaborative decision making require of physicians in these situations? Can it always be done? And what can be done better? APH researcher Mirjam de Vos, Research Associate at Emma Children's Hospital/Amsterdam UMC, investigated this with the Famicom study.

Over the past 15 years, De Vos and her team have interviewed patients, immediate family members, physicians and nurses about their experiences regarding end-of-life decisions. The goal is to improve the involvement of immediate relatives in these far-reaching decisions. In 2017, the Famicom study was launched. De Vos asked physicians on 7 ICU wards to record their conversations with families - parents, partners or children of critically ill patients - from the first moment when doubts arose about whether continuing treatment was still in the patient's best interest. This resulted in more than 140 recordings of conversations. The analyses are almost finished. These analyses will provide answers to questions such as: How are families informed? Do they understand the information? How much room are families given to bring in the patient's wishes and their own wishes? Do families want to have a say? And how do physicians deal with strong emotions and conflicts?

Difference in decision-making?

What De Vos also wanted to know: is the decision-making process different when it's about a baby that the parents have only just met or about someone who is older and looking back on a - hopefully rich - life? And in between, a child, known and loved, still far too young to die, but whose parents do not want him to suffer unbearably and hopelessly. "Making a decision as a parent about your child is different than making a decision as a child for your parents. Moreover, the decision about a child's life and death has lasting consequences for the whole family," says De Vos. "That, too, colors the decision-making process."

More attention for emotions

For doctors, deciding together on the end of life is mainly a matter of watching and feeling. "Above all, it's about standing beside a patient and family." The study showed that there is still room for improvement here. Families were given little room to ask questions or tell their stories. Doctors also did not address the fears and concerns that families expressed, often in an implicit way. "Before talking about the important decisions ahead, there should be focus on: who are you, what do you find important, what are you afraid of? This gives you as a doctor more feeling for the patient and for the family as a whole. And you also know whether a family wants to be involved in everything or prefers to be protected."

Mirjam De Vos will finish the Famicom-study In september 2022. She will introduce four training modules focused on communicative skills on deciding (together) in the ICU.

Read more (in Dutch) here.