Booklet recalls suffering from visitation restrictions in care during pandemic

The stories behind the numbers 

28 February 2023

It was exactly three years ago this week that the first patient with corona was admitted to Erasmus MC. It marked the start of two unimaginable years. The corona crisis, with all the visit restriction measures that came with it, is behind us. But it should not be forgotten, according to scientists from Erasmus MC, UMC Amsterdam, the University for Humanistic Studies and Hogeschool Rotterdam. They made a booklet about this period.

The scientists conducted a special study, led by professor Agnes van der Heide and associate professor Ida Korfage, affiliated with Erasmus MC's Department of Social Healthcare. They tried to capture in figures the impact of COVID-19  measures on relatives of dying patients and healthcare professionals. They asked hundreds of healthcare professionals and relatives to fill in questionnaires. The participants used those questionnaires remarkably often to vent their hearts.

From the University of Humanistic Studies, Anne Goossensen, Professor of Informal Care and Care Ethics, was involved in the research. She held in-depth interviews with relatives of people who died in the first wave of corona. Goossensen: "They were incredibly sad conversations, because many people were unable to say goodbye or had to say goodbye to their loved one under terrible circumstances. I spoke to people several times and was therefore able to follow how their grief developed, and for some it was really complex."

Poignant stories

The study, christened ‘Experiences of end-of-life care during the COVID-19-crisis’, involved over 700 healthcare professionals and nearly 400 bereaved families of people who died between March and July 2020, from corona or other causes. The experiences came from hospitals, the home setting, nursing homes, hospices and other care facilities.

On the basis of scientifically validated questionnaires, mainly figures emerged initially. 'In the open-ended questions, many participants wrote down their experiences. These were penetrating stories that we did not want to let go to waste.' And so a copywriter interviewed a selection of experts and experts by experience, and soundbites of the - anonymous - participants were put together. This resulted in Achter een Masker van verdriet ('Behind a mask of sadness').

Download the booklet (in Dutch)

Diffuse image

Anyone reading the booklet immediately travels back to those haunting first months of the corona pandemic - when there was great fear of infection all over the world and no one yet knew exactly what the disease did and what the consequences could be. A diffuse picture looms over the booklet; a picture of heartbreak, but also of solidarity and connection. And although everyone knows a story, the events remain impressive.

Relative Cora Postema tells of her elderly mother, who absolutely did not want to end up in hospital if she got corona, but had to rehabilitate in a nursing home after an unfortunate ankle fracture. Where subsequently no one was allowed to visit. Mother deteriorated quickly and died, in isolation. 'That loneliness touched me the most,' Cora says in the book.

ICU nurse Mechteld de Haas tells of a young father who was about to die, and that mother had to choose which of the 2 children could say goodbye because only 2 visitors were welcome. One child had to wait outside. Inhumane situations, she recalls.  "Nurses and intensivists themselves also experienced the restrictions as traumatic. We are aware that you can only say goodbye once."

Good care in the future

The stories touch hearts unabated, the researchers realise. And that the visit-limiting measures taken in hospitals and nursing homes cannot be repeated, everyone agrees. But how to do it then, is a difficult question. But a question that needs an answer, since the danger of a new pandemic always lurks and visits in the dying phase should never again be refused.

Anne Goossensen: “In any case, the corona pandemic taught us how important it is to be allowed to be physically together at the end of life and to touch each other. The fact that those two things were not possible for people had a great (negative) impact on how they had to move on with their loss after the farewell." Good care for people in the last phase of life and their loved ones is crucial even in times of crisis. The researchers urge future policymakers: "Listen to the shop floor. Be mindful of the impact of visit restrictions on the quality of life and dying of patients as well as caregivers." And they advise healthcare providers: "Inform openly and honestly. Make timely goodbyes possible. Pay attention to rituals surrounding death. And be rebellious if necessary."

The study and book were funded by ZonMW.

The corona crisis, with all the visitation restriction measures that came with it, is behind us. But it should not be forgotten, according to scientists from Erasmus MC, UMC Amsterdam, the University for Humanistic Studies and Hogeschool Rotterdam. They made a booklet about it.