Care for dying patients under the COVID-19 pandemic in Norway: A survey of bereaved relatives

Background: Even though Norway has had few deaths from Covid-19, infection control measures have affected most areas of life. Aims: To investigate how care for the dying was experienced during the first wave of the pandemic. Methods: Online survey of bereaved relatives using questionnaire based on Care of the Dying Evaluation (CODE) with option for free text comments, accessible July-Oct 2020. Open invitation via websites and newspapers. Analysis by SPSS and thematic analysis. Results: 102 participants completed the questionnaire, median age group 50-59, 83% women, 61% had lost a parent. The deceased were 46% female, 76% >70 years, 48% had cancer, 24% dementia, 5% Covid- 19;83% died March-June. Place of death: 16% home, 34% hospital, 41% nursing home, 8% palliative care units. 71% had restrictions on visiting. While 86% of the relatives perceived medical and nursing care for the patients as good, 35% perceived themselves not adequately supported in the patient's final days. Free text comments included the following themes: reduced access to staff, reduced quality of care, missing or conflicting information, limitations caused by personal protection equipment, restrictions on visiting, lack of contact from staff during bereavement, but also acknowledgement of staff doing their best under extreme circumstances. 'Restrictions on visiting' could be divided into: consequences for the patients, conflicts with staff, limited possibilities for online contact, relatives' solitude, deprived possibilities for caregiving and follow-up, visiting only on the last two days implying lost possibilities for addressing personal matters and saying good-bye. Conclusion: Patients as well as relatives were deeply affected by the infection control measures and restrictions on visiting. The most striking finding was that visiting in the last two days could not make up for the lack of visits in the weeks before. Also, follow-up of bereaved relatives is important and often neglected.