“Saying goodbye all alone with no close support was difficult”- Dying during the COVID-19 pandemic: an online survey among bereaved relatives about end-of-life care for patients with or without SARS-CoV2 infection

Abstract

Background During the SARS-CoV2 pandemic, protection measures, as well as visiting restrictions, had a severe impact on seriously ill and dying patients and their relatives. The study aims to describe the experiences of bereaved relatives of patients who died during the SARS-CoV2 pandemic, regardless of whether patients were infected with SARS-CoV2 or not. As part of this, experiences related to patients’ end-of-life care, saying goodbye, visiting restrictions and communication with the healthcare team were assessed. Methods An open observational post-bereavement online survey with free text options was conducted with 81 bereaved relatives from people who died during the pandemic in Germany, with and without SARS-CoV2 diagnosis. Results 67/81 of the bereaved relatives were female, with a mean age of 57.2 years. 50/81 decedents were women, with a mean age of 82.4 years. The main underlying diseases causing death were cardiovascular diseases or cancer. Only 7/81 of the patients were infected with SARS-CoV2. 58/81 of the relatives felt burdened by the visiting restrictions and 60/81 suffered from pandemic-related stress. 10 of the patients died alone due to visiting restrictions. The burden for relatives in the hospital setting was higher compared to relatives of patients who died at home. 45/81 and 44/81 relatives respectively reported that physicians and nurses had time to discuss the patient’s condition. Nevertheless, relatives reported a lack of proactive communication from the healthcare professionals. Conclusions Visits of relatives play a major role in the care of the dying and have an impact on the bereavement of relatives. Visits must be facilitated, allowing physical contact. Additionally, virtual contact with the patients and open, empathetic communication on the part of healthcare professionals is needed. Trial registration German Clinical Trials Register (DRKS00023552).

A Qualitative Study of Nursing Practitioners’ Experiences on Dying Alone Due to COVID-19 in Greece

“…Note, however, that empathetic communication between health professionals and critically ill patients is not easily attainable given that health professionals cannot spend adequate time with the patients mainly due to overwhelming workload, and the fact that they were "spaceship-dressed", could only speak behind their shields and kept their own social distancing with the patients [27]. Although it is a di cult task, providing compassionate care for dying patients and family is a fundamental human right [40]. In the USA and Europe, a right 'not to die alone' has been o cially outlined by the Declaration on the Promotion of Patients' Rights in Europe, ("Patients have the right to humane terminal care and to die in dignity') [41], the Dying Person's Bill of Rights ("I have the right to not die alone") [42], and the British Secretary of State for Health [38].…”

“…Schloesser et al put it best in saying "Staying connected with seriously ill and dying patients must be facilitated, allowing face-to-face, (shared) contact whenever possible, and allowing decisions to be made on an individual basis. It should always be possible to visit dying persons" [40]. The same holds true for Greece in the current epidemiological context.…”

Low and No-Contact Euthanasia: Associated Ethical Challenges Experienced by Veterinary Team Members during the Early Months of the COVID-19 Pandemic

“…In human healthcare, bans on visitors of hospitalised patients, particularly those in ICU and those dying from COVID-19, were instituted around the world [ 33 , 34 ]. These caused distress not just to family members of those patients, but also to healthcare workers [ 35 , 36 ].…”

‘It felt like a black hole, great uncertainty, but we have to take care for our patients’–Qualitative findings on the effects of the COVID-19 pandemic on specialist palliative home care

“…Additionally, SPHC patients are highly vulnerable, and especially impacted by the pandemic measures, because contact restrictions and fear of infection severally limit their ability to be with loved ones during their remaining time. Although visits to a dying person were officially excluded from contact restrictions in Germany, this was not always adequately communicated and put into practice [ 8 ]. Specialist palliative care, including home care, should receive more attention and be involved in planning and regulating health care during a pandemic.…”

“…Patients in hospitals and nursing homes died alone, and patients at home did not receive appropriate care due to a lack of personal protective equipment (PPE) for general practitioners, nursing services and other health care professionals. This caused great distress for patients and their caregivers [ 7 , 8 ].…”