Dataset Information

"Why Couldn't I Go in To See Him?" Bereaved Families' Perceptions of End-of-Life Communication During COVID-19.

ABSTRACT:

Background/objective

The COVID-19 pandemic has resulted in rapid changes to end-of-life care for hospitalized older adults and their families, including visitation restrictions. We examined bereaved families' perceptions of the quality of end-of-life communication among Veterans, families and staff in Veterans Affairs (VA) medical centers during the COVID-19 pandemic.

Design

Qualitative descriptive study using data from a survey of bereaved family members of Veterans administered from March-June 2020. Data were analyzed using qualitative content analysis.

Setting

VA medical centers with the highest numbers of COVID-19 cases during the study period.

Participants

Next-of-kin of 328 Veterans who died in one of 37 VA medical centers' acute care, intensive care, nursing home, or hospice units.

Measurements

Open-ended survey questions (response rate = 37%) about family member's perceptions of: (1) communication with the healthcare team about the patient, (2) communication with the patient, and (3) use of remote communication technologies.

Results

Bereaved family members identified contextual factors perceived to impact communication quality including: allowing family at the bedside when death is imminent, fears that the patient died alone, and overall perceptions of VA care. Characteristics of perceived high-quality communication included staff availability for remote communication and being kept informed of the patient's condition and plan of care. Low-quality communication with staff was perceived to result from limited access to staff, insufficient updates regarding the patient's condition, and when the family member was not consulted about care decision-making. Communication quality with the patient was facilitated or impeded by the availability and use of video-enabled remote technologies.

Conclusion

Communication between patients, families, and healthcare teams at the end of life remains critically important during times of limited in-person visitation. Families report that low-quality communication causes profound distress that can affect the quality of dying and bereavement. Innovative strategies are needed to ensure that high-quality communication occurs despite pandemic-related visitation restrictions.

SUBMITTER: Feder S

PROVIDER: S-EPMC8380436 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundDeath resulting from COVID-19 in a hospital during the pandemic has meant death in isolation. Although many health care providers (HCPs) have struggled with end-of-life (EOL) care for these patients, the various strategies across hospitals are not well known.Research questionWhat EOL care did HCPs give patients dying of COVID-19 and their families in hospitals during the COVID-19 pandemic? What were the key themes in care?Study design and methodsThis qualitative study used individual, semistructured, internet, and face-to-face interviews. We recruited HCPs who provided EOL care to patients with COVID-19 dying in hospitals and their families. Purposive sampling was used through the academic networks at the School of Public Health, Kyoto University. Anonymized verbatim transcripts were analyzed thematically.ResultsFifteen doctors and 18 nurses from 23 hospitals in 13 regions across Japan participated; 16 participants (48%) were women, with an age range of 20 to 59 years (most were 30-39 years of age). Participants described 51 strategies, including providing physical and psychological-spiritual care, making connections, providing death care, and arranging care environments and bereavement care for patients and their families. Four themes emerged as prominent efforts in COVID-19 EOL care: maintaining relationships with isolated patients, connecting patients and families, sharing decision-making in isolation, and creating humanistic episodes.InterpretationProper application and awareness of the four themes may help HCPs to implement better EOL care. To compensate for limited memories resulting from isolation and rapid progression of the disease, communicating and creating humanistic episodes are emphasized. ICU diaries and the HCPs' arrangements based on cultural funerary procedures could be provided as grief care for the family and to build trust. EOL education and building partnerships among palliative care staff and nonmedical personnel on a regular basis may enhance the capacity to deliver the necessary support for EOL care.