COVID-19 is a pandemic emergency and palliative care has an important role in symptom management and support. The clinical, clinical academic and academic teams at the Cicely Saunders Institute are providing care and support, as well as gathering evidence in these difficult times. We have been approached for requests for resources and so we have developed this page to provide links to key sources of information and evidence.
As COVID-19 is a new disease, evidence is evolving rapidly and we suggest you frequently refer to this page for updated information and further resources, which will be added to as developments are made.
Research priorities of people affected by serious illness during COVID-19
Experiences, concerns, and priorities for palliative care research during the COVID-19 pandemic : A rapid virtual stakeholder consultation with people affected by serious illness in England Johnson, H, Brighton, LJ, Clark, J, Roberts, H, Pocock, L, Ogden, M, Kumar, R, Gardiner, C, Higginson, IJ & Evans, C We report the findings of a rapid virtual stakeholder consultation to understand the emerging experiences, concerns and research priorities of people affected by serious illness, in relation to palliative care, during the COVID-19 pandemic.
Cicely Saunders Institute Research
The role and response of palliative care and hospice services in epidemics and pandemics: a rapid review to inform practice during the COVID-19 pandemic
Simon N. Etkind, Anna E. Bone, Natasha Lovell, Rachel L. Cripps, Richard Harding, Irene J. Higginson, Katherine E. Sleeman. Journal of Pain and Symptom Management
An evidence synthesis on the role and response of hospice and palliative care in epi/pandemics, to inform response to COVID-19.
Characteristics, symptom management and outcomes of 101 patients with COVID-19 referred for hospital palliative care
Lovell N, Maddocks M, Etkind SN, Taylor K, Carey I, Vora V, Marsh L, Higginson IJ, Prentice W, Edmonds P, Sleeman KE
A case series describing symptom burden, management, response to treatment and outcomes for COVID-19 patients referred to palliative care
Managing the supportive care needs of those affected by COVID-19
S. Bajwah, A. Wilcock, R. Towers, M. Costantini, C. Bausewein, S. T. Simon, E. Bendstrup, W. Prentice, M. J. Johnson, D. C. Currow, M. Kreuter, A. U. Wells, S. S. Birring, P. Edmonds, I. J. Higginson.
We have published a guide for respiratory healthcare professionals working with Covid-19 patients on how to manage their supportive care needs.
Cicely Saunders Institute Resources
We have created a Managing breathlessness at home resource which:
- Is written for people with breathlessness and their families
- May be especially helpful for those with chronic heart and lung conditions, whose clinical teams are being diverted to the COVID effort
- Contains advice which is all based on the best available evidence and resources, but adapted to the COIVD context (shorted and tailored components)
- Harmonises with national guidance, e.g. from Association of Palliative Medicine and NICE, and can support its implementation with patient-directed tips and instruction.
Recognising that COVID19 may be affecting the Black Asian and Minority Ethnic groups disproportionately, we have co-produced with the European Lung Foundation, information leaflets for patients, families/friends that have been translated into 23 different languages. https://www.europeanlung.org/en/news-and-events/news/covid-19-factsheets.
Ongoing Research Now Recruiting
We invite clinical representatives from hospice and palliative care services across the UK to contiribute to our survey aiming to understand more about how palliative care services and hospices are responding to the COVID-19 pandemic. Please follow the link for further information.
Self-management of breathlessness guide
Please see our guidance on self-management of breathlessness here, under the breathlessness support service toolkit. Please note, it is not advisable to use a fan currently due to the possibility of droplet spread.
Please see below for a list other, more generally useful links.
Hospital & Trust partners sites
Health related sites
Charities, Institutes and Centres
Journals and publications
Libraries / Publications:
Palliative care associations
UK and Ireland: