Appendix Table 1.
Characteristics of Guidance Documents, per Country, Type, and Number of Palliative Care Themes Addressed
| No | Issuing Body | Title | Date Issued (Last Update Included in This Study) | Country in Which Issued | Target Audience (as Mentioned in Document) | Purpose of Guidance (as Mentioned in Document) | Typea | Number of Palliative Care Themes Addressed in Document | Methods and Sources Used to Develop Guideline |
|---|---|---|---|---|---|---|---|---|---|
| 1 | WHO (World Health Organization) | Infection Prevention and Control (IPC) guidance for long-term care facilities in the context of COVID-19′ | 21/03/20 | International | This interim guidance is for LTCF managers and corresponding IPC (infection prevention and control) focal persons in LTCF. | To provide guidance on IPC in LTCFs in the context of COVID-19 to 1) prevent virus from entering the facility, 2) prevent COVID-19 from spreading within the facility, and 3) prevent from spreading to outside the facility. | Type 4 | 1 (end-of-life visitations) | NA |
| 2 | WHO (World Health Organization) | Infection Prevention and Control for the safe management of a dead body in the context of COVID-19 | 24/03/20 | International | For all those, who tend to the bodies of persons who have died of suspected or confirmed COVID-19, including managers of health care facilities and mortuaries, religious and public health authorities, and families | Guidance on how to tend the bodies of persons who have died of suspected or confirmed COVID-19. | Type 5 | 1 (preparation of body and funeral arrangements) | NA |
| 3 | WHO (World Health Organization) | Clinical management of severe acute respiratory infection (SARI) when COVID-19 disease is suspected | 13/03/20 | International | Clinicians involved in the care of adult, pregnant, and pediatric patients with or at risk for severe acute respiratory infection (SARI) when a SARS-CoV-2 infection is suspected | To strengthen clinical management of patients who are at risk for SARI when SARS-CoV-2 infection is suspected, and to provide up-to-date guidance. | Type 5 | 3 (clinical decision-making, symptom management at end of life, ACP) | Based on evidence-informed guidelines developed by multidisciplinary panel of health care providers with experience in the clinical management of patients with COVID-19 and other viral infections. |
| 4 | Centers from Medicare and Medicaid (CMS) and National Hospice and Palliative Care Organization (NHPCO) | Coronavirus Disease 2019 (COVID-19) in Nursing Homes with Hospice Patients Guidance for Infection Control and Prevention (additional guidance on compassionate situations) | 13/03/20 (14/03/20 by NHPCO) | US | For hospice workers in nursing homes | Specific guidance for visitation for certain compassionate care situations, such as end of life, and details for hospice workers in nursing homes | Type 1 | 1 (end-of-life visitation) | NA |
| 5 | Centers from Medicare and Medicaid (CMS), Department of Health & Human Services, Center for Clinical Standards and Quality, Safety and Oversight Group | Guidance for Infection Control and Prevention of Coronavirus Disease 2019 (COVID-19) in Nursing Homes (REVISED), including updated version of 03/04/2020 | 13/03/20 (03/04/20) | US | State Survey Agency Directors (nursing homes) | Guidance to nursing homes to help them improve their infection control and prevention practices to prevent the transmission of COVID-19, including revised guidance for visitation. | Type 4 | 2 (ACP and end-of-life visitation) | NA |
| 6 | The Society for Post-Acute and Long-Term Care Medicine–American Medical Directors Association (AMDA), and American Assisted Living Nurses Association (AALNA) | Guidance & Resources for Assisted Living Facilities and Continuing Care Retirement Communities During COVID-19 | 01/04/20 | US | For Assisted Living (AL) Communities, Personal Care Homes, Senior Living Communities, and Continuing Care Retirement Communities (CCRC), henceforth referred to as ALs and CCRCs | To address the challenges that are distinctive to these communities and offer resources | Type 4 | 1 (end-of-life visitation) | NA |
| 7 | The Society for Post-Acute and Long-Term Care Medicine–American Medical Directors Association (AMDA) | COVID-19 guidance for PALTC (Post-Acute and Long-Term Care Medicine) | 27/03/20 | US | Health care personnel working in postacute and long-term care (PALTC) settings | Not stated | Type 4 | 1 (end-of-life visitation) | NA |
| 8 | The Society for Post-Acute and Long-Term Care Medicine–American Medical Directors Association (AMDA) | Frequently Asked Questions Regarding COVID-19 and PALTC | 31/03/20 | US | Health care personnel working in postacute and long-term care (PALTC) settings | This document assumes that there is community spread of COVID-19 in your region and provides answers to frequently asked questions from PALTC (Post-Acute and Long-Term Care Medicine) | Type 4 | 4 (specialist PC, symptom management, ACP, end-of-life visitation) | NA |
| 9 | Alzheimer's Association | Emergency Preparedness: Caring for persons living with dementia in a long-term or community-based care setting | No date | US | Employees of long-term and community-based care settings | To provide suggestions to meet the needs of persons living with dementia during a major disease outbreak or disaster | Type 4b | 2 (preparing family, ACP) | NA |
| 10 | Verenso (beroepsvereniging van verpleeghuisartsen en specialisten ouderengeneeskunde) [Verenso (professional organization for nursing home physicians and specialists geriatric medicine)] and Palliaweb | Symptoombestrijding in de verpleeghuissituatie bij patiënten met een COVID-19 (Corona) in de laatste levensfase' [Symptom management in nursing homes for patients that have COVID-19 in end of life/terminal phase] | 24/03/20 | The Netherlands | Specialisten Ouderengeneeskunde, verpleegkundigen en verzorgenden in het verpleeghuis [Specialists geriatric medicine, nurses, and care assistants in nursing homes] | Handvatten aanreiken bij symptoombestrijding tijdens de Coronacrisis [To provide recommendations regarding symptom management during corona crisis] | Type 1 | 5 (end-of-life visitation, symptom management, clinical decision-making, ACP, specialist PC) | NA |
| 11 | Federatie Medisch Specialisten (FMS) Nederland and verpleeghuisartsen [Federation Medical Specialists and nursing home physicians] | Leidraad triage thuisbehandeling versus verwijzen naar het ziekenhuis bij oudere patiënt met (verdenking op) COVID-19 [Guideline triage care treatment and home and admission to hospital of older patient in case of suspecting COVID-19] | 27/03/20 | The Netherlands | Not stated | De Leidraad biedt concrete aandachtspunten en besluitvormingscriteria voor de verwijzing en behandeling van oudere patiënten met een (verdenking op) COVID-19 virusinfectie [The guideline is intended to provide guidance and decision-making criteria for transferring and treating older patients who are suspected to be infected by COVID-19] | Type 2 | 4 (clinical decision making, ACP, end-of-life visitation, symptom management) | We used local protocols and flowcharts. The first version of this document is mainly based on expert-opinion and experience-based. |
| 12 | Ireland Health Services (HSE) and the Health Protection Surveillance Centre (HPSC) | Preliminary Coronavirus Disease (COVID-19) Infection Prevention and Control Guidance including Outbreak Control in Residential Care Facilities (RCF) and Similar Units [new title after update: Interim Infection Prevention and Control Guidance including Outbreak Control in Residential Care Facilities (RCF) and Similar Units for pandemic COVID-19] | 30/03/20 (updated: 08/04/20) | Ireland | Community residential facilities | This document provides guidance and information on infection prevention and control measures to inform and advise local planning and management in community residential facilities. | Type 4 | 4 (preparation of body and funeral arrangements, clinical decision making, spiritual care, end-of-life visitation) | Inspired by several guidance documents from Communicable Disease Network Australia, Health Protection Scotland, WHO, and HIQA rapid review of public health guidance on infection prevention and control measures for residential care facilities |
| 13 | Department of Health & Social Care, Public Health England, Care Quality Commission, and NHS | Admission and Care of Residents during COVID-19 Incident in a Care Home | 02/04/20 | UK | Care home providers and staff | We want to support care home providers to protect their staff and residents, ensuring that each person is getting the right care in the most appropriate setting for their needs. | Type 4 | 5 (clinical decision making, specialist PC, preparation of body and funeral arrangements, ACP) | NA |
| 14 | Scottish Government/Riaghaltas na h-Alba (gov.scot) | Coronavirus (COVID-19): clinical guidance for nursing home and residential care residents | 13/03/20 (updated: 16/03/20) | UK | Those working with adults in long-term care such as residents of nursing home and residential care settings | This guidance provides targeted clinical advice about COVID-19. | Type 4 | 6 (spiritual care, symptom management, preparations of body and funeral, clinical decision making, ACP, end-of-life visitation, incl bereavement) | NA |
| 15 | British Geriatrics Society (BGS) | COVID-19: Managing the COVID-19 pandemic in care homes | 25/03/20 | UK | First, care home staff, many of whom feel isolated and exposed as part of the COVID-19 pandemic. Second, NHS staff who plan for, work with, and support care home staff, many of whom are trying to develop standardized approaches to care home residents in light of the pandemic. | To help care home staff and NHS staff who work with them to support residents through the pandemic. | Type 2 | 5 (specialist PC, clinical decision making, end-of-life visitation, foreseeing stock, ACP) | Expert author group who assembled this guidance with BGS |
| 16 | BC Centre for Palliative Care Guidelines | Symptom management for adult patients with COVID-19 receiving end-of-life supportive care outside of the ICU | 20/03/20 | Canada | Not stated | Symptom management for adult patients with COVID-19 who receive end-of-life supportive care outside ICU | Type 3 | 3 (ACP, symptom management, specialist PC) | Recommendations compiled collaboratively with input from a team of BC palliative care MDs, pharmacists & allied health. |
| 17 | Roland K. & Markus, M. (Geriatrics and Palliative Medicine, Stadtspital Waid und Triemli & Spital Affoltern am Albis), approved by Association for Geriatric Palliative Medicine (FGPG) | COVID-19 pandemic: palliative care for elderly and frail patients at home and in residential and nursing homes | 22/03/20 | Switzerland | Not stated | To provide recommendations for practice (palliative care for older adults in nursing homes) | Type 1 | 4 (end-of-life visitation, clinical decision-making, specialist PC, ACP) | NA |
| 18 | Schweizerische Gesellschaft für Palliative Medizin, Pflege und Begleitung [Swiss Society for Palliative Medicine, Nursing and Support] | COVID-19 - Pandemie – Merkblatt zu Spiritual Care und Seelsorge in Langzeitpflegeinstitutionen' [Spiritual care and chaplaincy in LCTFs for COVID 19 patients] | 27/03/20 | Switzerland | Intended as a recommendation for: specialists in pastoral care in retirement and nursing homes, health professionals and those responsible in medical institutions, responsible for the appointing authorities for pastoral workers | Guidance regarding spiritual care and pastoral care in long-term care | Type 2 | 2 (spiritual care, end-of-life visitation) | These recommendations are based on a handout from the Reformed Church of Bern-Jura-Solothurn. |
| 19 | Schweizerische Gesellschaft für Palliative Medizin, Pflege und Begleitung [Swiss Association for Palliative Medicine, Care and Support] | Merkblatt für HausärztInnen Palliative Behandlung von COVID19 zu Hause und im Pflegeheim [Leaflet for general practitioners and palliative treatment of COVID19 at home and in a nursing home] | 24/03/20 (updated: 06/04/20) | Switzerland | General practitioners, Spitex (extramural care, home care) and nursing homes | To ensure good palliative care at home or in nursing homes for elderly and seriously ill patients who no longer want (or no longer receive) intensive care treatment | Type 1 | 5 (clinical decision making, specialist PC, ACP, preparing family, symptom management) | NA |
| 20 | New Zealand Government, Ministry of Health | 1) ‘Update for Disability and Aged Care Providers on Alert Level 4' (30/03/20)' 2) ‘COVID-19 Guidance for admissions into aged residential care facilities at Alert Level 4' (02/04/20) 3) ‘Updated advice for health professionals: novel coronavirus' (COVID-19) (08/04/20) |
30/03/20 (updated: 02/04/20; updated: 08/04/20) | New Zealand | Health professionals in general (including hospital-based, community-based, and public health practitioners) and disability and aged residential care facilities specifically |
1) To provide update on COVID Alert Level 4 2) To provide guidance for admissions into aged residential care 3) To provide information on how to identify and investigate any cases of novel coronavirus (COVID-19), as well as how to apply appropriate contact tracing and infection control measures to prevent its spread |
Type 4 | 3 (clinical decision-making, ACP, end of life visitation) | Information in this document is based on current advice from the WHO. |
| 21 | Group of Belgian geriatricians (University Hospital Leuven, University Hospital Gent and Crataegus) | COVID-19 Guideline regarding Symptom Management and Clinical Decision-Making in Nursing Homes | 25/03/20 | Belgium | Long-term care facilities | To support nursing home staff in symptom management and clinical decision-making regarding hospital admission at the end of life | Type 2 | 4 (clinical decision-making, end of life visitation, symptom management, ACP) | Developed by group of multiple physicians. |
WHO = World Health Organization; NA = not available; BGS = British Geriatrics Group; ACP = advance care planning; PC = palliative care.
a
Type of guidance document: 1) Palliative care document with substantial section of specific recommendations for nursing homes; 2) Nursing home document with substantial section including specific recommendations regarding palliative care; 3) Palliative care documents specifically for nursing homes; 4) Nursing home document with limited advice for palliative care; 5) Document that relates to specific end-of-life theme which is highly relevant for nursing home population. Note that the fact that some documents cover multiple palliative care themes does not imply that all themes are addressed in equal depth.
b
Guidance document is aimed at health care providers working for people living with dementia, not specifically for nursing homes. Given that nursing home population has high prevalence of dementia, we considered this to be a guidance document specifically for nursing homes.