The Impact of the SARS-CoV-2 Pandemic on the Needs of Non-Infected Patients and Their Families in Palliative Care—Interviews with Those Concerned

Abstract

During humanitarian crises, such as a pandemic, healthcare systems worldwide face unknown challenges. This study aimed to explore and describe the effect of the SARS-CoV-2 pandemic on the needs of non-infected patients and family caregivers in specialist palliative care, using qualitative, semi-structured interviews. Data were analyzed using inductive content analysis, following the framework approach. Thirty-one interviews were conducted with patients/family caregivers (15/16) in palliative care units/specialist palliative home care (21/10) from June 2020 to January 2021. Well-known needs of patients and family caregivers at the end of life remained during the pandemic. Pandemic- dependent themes were (1) implications of the risk of contagion, (2) impact of the restriction of social interactions, (3) effects on the delivery of healthcare, and (4) changes in the relative’s role as family caregiver. Restriction on visits limited family caregivers’ ability to be present in palliative care units. In specialist palliative home care, family caregivers were concerned about the balance between preserving social contacts at the end of life and preventing infection. Specialist palliative care during a pandemic needs to meet both the well-known needs at the end of life and additional needs in the pandemic context. In particular, attention should be given to the needs and burden of family caregivers, which became more multifaceted with regards to the pandemic.

Socioeconomic Status, Palliative Care, and Death at Home Among Patients With Cancer Before and During COVID-19

“…This abrupt drop in SPC delivery at the onset of the COVID-19 pandemic followed a decade of a gradual increase of SPC delivery in Ontario 26 and may have been associated with delayed or lacking SPC access resulting from COVID-19 restrictions, staffing shortages due to nurses and physicians contracting COVID-19, or redeployment of palliative care staff to help with the care of patients with COVID-19. 41 , 42 Both leading up to the pandemic and during its first year, we found that patients with lower SES were less likely to receive SPC at the end of life than those with higher SES. The persistent nature of this disparity in SPC delivery is shown by its existence in studies describing care in Ontario between 2004 and 2015 15 , 26 , 43 as well as in studies taking place in other high-income countries.…”

“…The surge in deaths at home was accompanied by a simultaneous decrease in SPC delivery at the end of life. This abrupt drop in SPC delivery at the onset of the COVID-19 pandemic followed a decade of a gradual increase of SPC delivery in Ontario and may have been associated with delayed or lacking SPC access resulting from COVID-19 restrictions, staffing shortages due to nurses and physicians contracting COVID-19, or redeployment of palliative care staff to help with the care of patients with COVID-19 . Both leading up to the pandemic and during its first year, we found that patients with lower SES were less likely to receive SPC at the end of life than those with higher SES.…”

Prepared to Accompany the End of Life during Pandemics in Nursing Homes

“…Notably, there was a media presence of reported cases of death in loneliness or isolation, not only but also in nursing homes, cases that presumably led to great suffering for those affected, but also for the staff, some of whom had been caring for the deceased residents for a long time [ 9 ]. At an early stage of the pandemic, some authorities recommended to transfer patients with COVID infection from nursing homes to hospitals, to protect other residents, irrespective of the medical need, the patients’ will, and the already existing overload of work in hospitals.…”