Stories behind the covid figures ‘Behind a mask of sadness’

The booklet is a kind of monument for the relatives and caregivers

The first patient with corona in the Netherlands, three years ago this week. It marked the start of two incredible years. The corona crisis, so visible due to the mandatory mouth masks and all the other protective measures that came with it, is behind us. But she should not be forgotten, say scientists from Amsterdam UMC, among others. Together they made a booklet about it: ‘Behind a mask of sadness’.

During the first wave in 2020, scientists from Erasmus MC, Amsterdam UMC, the University of Humanistics and Rotterdam University of Applied Sciences conducted research. They tried to capture the impact of the corona measures on the family of dying patients and healthcare professionals in figures. They had hundreds of caregivers and next of kin fill out questionnaires.

The participants used those questionnaires remarkably often to express themselves, it turned out. “It soon became clear that the measures had a major impact on how people could say goodbye to loved ones during this period. And how care providers could provide good end-of-life care,” says Professor Bregje Onwuteaka-Philipsen, professor of life-end research at Amsterdam UMC. “That is why we started an investigation together in May 2020.”

Study
To the study Experiences of end-of-life care during the COVID-19-crisis more than 700 healthcare professionals participated and almost 400 surviving relatives of people who died between March and July 2020, from corona or from another cause. The experiences come from hospitals, the home situation, nursing homes, hospices and other care institutions. Initially, the research mainly yielded figures. “But with the open questions, many participants wrote down their experiences. Those were poignant stories that we didn’t want to lose,” says Onwuteaka-Philipsen.

Diffuse image
And so a copywriter interviewed a variety of experts and experience experts, and sound bites from the – anonymous – participants were put together. That resulted in Behind a mask of sadness. Anyone who reads the booklet immediately goes back to those oppressive first months of the corona pandemic, when there was great fear of infection all over the world and no one knew exactly what the disease did and what the consequences could be.
A diffuse image emerges in the booklet; an image of heartbreaking events, but also of solidarity and connection. And although everyone knows a story, the events remain impressive.

Inhuman situations
Bereaved Cora Postema talks about her elderly mother, who absolutely did not want to end up in hospital if she contracted corona, but who had to rehabilitate in a nursing home after an unfortunate ankle fracture. Where no one was allowed to visit. Mother deteriorated rapidly and died, in isolation. “That loneliness touches me the most,” says Cora in the book.

IC nurse Mechteld de Haas tells about a young father who was about to die, and that mother had to choose which of the two children could say goodbye because only two visitors were allowed. A child had to wait outside. Inhuman situations, she remembers. “Nurses and intensivists themselves have also experienced the limitations as traumatic. We are aware that you can only say goodbye once.”

Monument
The booklet is a kind of monument for the relatives and care providers, says Bregje Onwuteaka-Philipsen. “It shows many heartbreaking stories, but also shows how people continued to take care of each other as best as possible under the difficult circumstances, sometimes by interpreting the strict rules a bit more broadly. Everyone agrees that the strict visit-limiting measures that were taken in hospitals and nursing homes should never be used again. But how to do that is a tricky question. But it is a question that needs an answer, since the danger of a new pandemic is always lurking and visits in the dying phase should never be refused again.”

“If the corona crisis has shown one thing, it is that good care for people in the last phase of life and their loved ones is also crucial in times of crisis and that more psychological, social and spiritual aspects of care are important in this phase. . And that it is also important for the well-being of care providers that they can provide this care properly,” concludes Onwuteaka-Philipsen.

Advice
The researchers urge future policymakers: “Listen to the workplace. Be aware of the impact of visiting restrictions on the quality of life and death of patients, relatives and healthcare providers.” And they advise healthcare providers: “Inform openly and honestly. Make timely goodbyes possible. Pay attention to rituals surrounding death. And be rebellious if necessary.”

Read more?
The book Behind a Mask of Sadness
De studie Experiences of end-of-life care during the COVID-19-crisis

The study and book were funded by ZonMW.

Bron: Amsterdam UMC