Palliative Care and Bereavement Resources

Guidance
  1. Guidance for care of the deceased with suspected or confirmed corona virus (COVID-19) published by Public Health England, 31 March 2020, Updated 20 April 2020 https://www.gov.uk/government/publications/covid-19-guidance-for-care-of-the-deceased/guidance-for-care-of-the-deceased-with-suspected-or-confirmed-coronavirus-covid-19#guidance-for-communities-managing-a-death  
  2. Clinical guide for the management of palliative care in hospital during the coronavirus pandemic. Keeping the care in healthcare 27 March 2020, Updated 22nd April 2020. Version 2. https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/04/C0081-AMENDED-Speciality-guide-Palliative-care-and-coronavirus-v2-2020-04-22.pdf
  3. COVID-19 and Palliative, End of Life and Bereavement Care in Secondary Care. Role  of the specialty and guidance to aid care. Association for Palliative  Medicine of Great Britain  and  Ireland. 22 March 2020. Updated 20 April. Version 4 https://apmonline.org/wp-content/uploads/2020/04/COVID-19-and-Palliative-End-of-Life-and-Bereavement-Care-20-April-2020-2.pdf
  4. This resource from the Centers of Medicare & Medicaid Services (CMS) includes regulations and guidance support for Hospice Agencies. The guide addresses appropriate action for potential and confirmed COVID cases and mitigate transmission including screening, treatment, and transfer to higher level care (when appropriate) (U.S.) https://www.cms.gov/medicare/quality-safety-oversight-general-information/coronavirus  
  5. The American Health Care Association provides guidelines for providers, residents and patients, family and friends. https://www.ahcancal.org/facility_operations/disaster_planning/Pages/Coronavirus.aspx   
  6. The NCVO provides guidelines for organisations to protect staff, volunteers and institutional assets. https://www.ncvo.org.uk/practical-support/information/coronavirus                                                               
Palliative Care     
  1. The International Association for Hospice and Palliative Care (IAHPC) has compiled this list of resources relevant to palliative care and COVID-19 published by academia, civil society organizations, member states and special agencies of the United Nations, with links to all of the websites and documents listed. http://globalpalliativecare.org/covid-19/
  2. Etkind SN, Bone AE, Lovell N, Cripps RL, Harding R, Higginson IJ, Sleeman KE, 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, Journal of Pain and Symptom Management (2020), https://doi.org/10.1016/j.jpainsymman.2020.03.029  
  3. Borasio, G.D., Gamondi, C., Obrist, M. and Jox, R., 2020. COVID-19: decision making and palliative care. Swiss Medical Weekly, 150(1314). https://smw.ch/article/doi/smw.2020.20233 
  4. European Association for Palliative Care - Coronavirus and the palliative care response. https://www.eapcnet.eu/publications/coronavirus-and-the-palliative-care-response
  5. Coronavirus and end of life care https://www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/proving-good-quality-care/covid-19
  6. Coronavirus Worst Case Scenario Planning (from APM) - guidance and a series of videos for patients/public: https://apmonline.org/news-events/covid-19-resources-for-the-public/
Bereavement and psychological interventions
  1. Chaplaincy and Bereavement Services Standard Operating Procedures for Covid 19, United Lincolnshire Hospitals, 10th March 2020 https://www.ulh.nhs.uk/covid-19-latest-staff-updates-and-faqs/chaplaincy-bereavement-service-sop-coid-19v2/
  2. Coronavirus: dealing with bereavement and grief (Cruse Bereavement Care) https://www.cruse.org.uk/get-help/coronavirus-dealing-bereavement-and-grief  
  3. Covid 19 and the grief process, Psychology today https://www.psychologytoday.com/gb/blog/love-and-sex-in-the-digital-age/202003/covid-19-and-the-grief-process
  4. Covid 19 Care and Inform, Irish Hospice Foundation, last updated 30th March 2020 https://hospicefoundation.ie/bereavement-2-2/covid19-care-and-inform/
  5. #beforetheirtime Twitter campaign by the Dying Matters. https://twitter.com/hashtag/BeforeTheirTime             
  6. See also the Twitter hashtag #pallicovid  https://twitter.com/hashtag/pallicovid  
  7. Duan, L. and Zhu, G., 2020. Psychological interventions for people affected by the COVID-19 epidemic. The Lancet Psychiatry, 7(4), pp.300-302. https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(20)30073-0/fulltext
  8. Sim, M., 2016. Psychological trauma of Middle East Respiratory Syndrome victims and bereaved families. Epidemiology and health, 38. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5177804/
  9. Verdery, A.M. and Smith-Greenway, E., COVID-19 and Family Bereavement in the United States. Applied Demography, p.1. http://www.populationassociation.org/wp-content/uploads/CAD_SpecialEdition_COVID19_March2020.pdf#page=3
  10. Ho, C.S., Chee, C.Y. and Ho, R.C., 2020. Mental Health Strategies to Combat the Psychological Impact of COVID-19 Beyond Paranoia and Panic. Annals of the Academy of Medicine, Singapore, 49(1), p.1. http://www.annals.edu.sg/pdf/special/COM20043_HoCSH_2.pdf
  11. COVID-19 Bereavement resources form NHS Education for Scotland. http://www.sad.scot.nhs.uk/covid-19/
China
  1. Clinical course and outcomes of critically ill patients with SARS-CoV-2 pneumonia in Wuhan, China: a single-centered, retrospective, observational study. https://www.thelancet.com/journals/lanres/article/PIIS2213-2600(20)30079-5/fulltext
  2. Clinical predictors of mortality due to COVID-19 based on an analysis of data of 150 patients from Wuhan, China. https://link.springer.com/article/10.1007/s00134-020-05991-x?fbclid=IwAR1EbkrPza14Iwx-dNFQDrlYG2HRomm-8Lb7NEvWZIqP1Gff8EBDaLmL7lg
Italy
  1. From the front line: Palliative care in Bologna during the COVID-19 crisis https://eapcnet.wordpress.com/2020/03/22/from-the-front-line-palliative-care-in-bologna-during-the-covid-19-crisis/ 
  2. Covid-19: The role of palliative care had to be adapted to manage this “ultra-emergency” (March 31, 2020) Raffaella Bertè and colleagues recount the experience of managing the covid-19 outbreak in a small town in Italy. https://blogs.bmj.com/bmj/2020/03/31/covid-19-the-role-of-palliative-care-had-to-be-adapted-to-manage-this-ultra-emergency/
  3. Case-Fatality Rate and Characteristics of Patients Dying in Relation to COVID-19 in Italy. https://jamanetwork.com/journals/jama/fullarticle/2763667
  4. Characteristics of patients who died positive for COVID-19 in Italy – https://www.epicentro.iss.it/coronavirus/sars-cov-2-decessi-italia This is in Italian. Translated document attached to email.
  5. Palliative care network framework in response to COVID-19 emergency. https://www.eapcnet.eu/Portals/0/adam/Content/9mJL4s6J4k2llSSDO-dEEQ/Text/Example%20operational%20guidelines-LPCN-Bologna_17-Mar-20%20ENG%20PLUS%20questionnaire.pdf
  6. Response and role of palliative care during the COVID-19 pandemic: a national telephone survey of hospices in Italy. https://www.medrxiv.org/content/10.1101/2020.03.18.20038448v1.full.pdf
  7. Resources from Società Italiana di Cure Palliative:
  • Communication toolkit to help general staff with patient / family conversations – what to say and how view pdf  view editable Word version
  • Tool for sharing clinical and care pathways between professionals working in hospital and palliative care services caring for COVID-19 positive patients view pdf 
  • Palliative care team referral form – to help quickly capture the relevant information view pdf   view editable Word version
  • Example of operational guidelines  - specific to one locality, but may help palliative care professionals to think through the operational steps needed view pdf