Lived Experiences of Family Members of Patients With Severe COVID-19 Who Died in Intensive Care Units in France

Key Points

Question

What is the experience of bereaved family members after the death of a loved one in an intensive care unit (ICU) during the first wave of the COVID-19 pandemic?

Findings

In this qualitative study of 19 bereaved family members, participants reported difficulties in establishing a bond with the ICU team and maintaining a relationship with their loved ones during their stay in the ICU. They also described a feeling of “stolen moments” after the death of their loved one, generating strong feelings of disbelief that could potentially lead to complicated grieving.

Meaning

These findings suggest that while adapting care practices and visiting policies is necessary given the public health menace, preventing families from seeing their loved ones altogether was highly detrimental: specific family-centered guidelines for crisis management are needed.

Abstract

This qualitative study describes the experiences of family members of patients who died of COVID-19 in intensive care units (ICUs) in France.

Abstract

Importance

During the initial surge of the COVID-19 pandemic, family members were often separated from their loved ones admitted to intensive care units (ICUs), with a potential for negative experiences and psychological burden.

Objective

To better understand the experiences of bereaved family members of patients who died in an ICU during the COVID-19 pandemic, from the time of hospital admission until after the patient’s death.

Design, Setting, and Participants

This qualitative study used semistructured, in-depth interviews to collect experiences from bereaved family members of patients who died from severe COVID-19 in 12 ICUs during the first wave of the pandemic in France. Purposeful sampling was used to ensure the diversity of study participants with respect to sex, age, relationship with the patient, and geographic location. All data were collected between June and September 2020, and data analysis was performed from August to November 2020.

Main Outcomes and Measures

Interviews were conducted 3 to 4 months after the patient’s death and were audio-recorded and analyzed using thematic analysis.

Results

Among 19 family members interviewed (median [range] age, 46 [23-75] years; 14 [74%] women), 3 major themes emerged from qualitative analysis. The first was the difficulty in building a relationship with the ICU clinicians and dealing with the experience of solitude: family members experienced difficulties in establishing rapport and bonding with the ICU team as well as understanding the medical information. Distance communication was not sufficient, and participants felt it increased the feeling of solitude. The second involved the patient in the ICU and the risks of separation: because of restricted access to the ICU, family members experienced discontinuity and interruptions in the relationship with their loved one, which were associated with feelings of powerlessness, abandonment, and unreality. The third was regarding disruptions in end-of-life rituals: family members described “stolen moments” after the patient’s death, generating strong feelings of disbelief that may lead to complicated grief.

Conclusions and Relevance

This qualitative study found that during the initial wave of the COVID-19 pandemic in France, bereaved family members described a disturbed experience, both during the ICU stay and after the patient’s death. Specific family-centered crisis guidelines are needed to improve experiences for patients, families, and clinicians experiences.