National strategy for palliative care of severely ill and dying people and their relatives in pandemics (PallPan) in Germany - study protocol of a mixed-methods project

Claudia Bausewein ,Daniela Gesell ,Lukas Radbruch ,M C Reuters ,Cordula Gebel ,Elke Lehmann ,Martin Neukirchen ,Maria Heckel ,Nils Schneider ,Maximiliane Jansky ,Nam-Hae Jung ,Charlotte Leisse ,Norbert Krumm ,Raymond Voltz ,Stephanie Stiel ,Berenike Pauli ,Julia Strupp ,Ursula Kriesen ,Birgit Jaspers ,Christian Junghanß ,Anne Pralong ,Sonja Gauder ,Isabell Klinger ,Christina Gerlach ,B Van Oorschot,Carmen Roch ,Steffen T Simon ,Karlotta Schloesser ,Roman Rolke ,Anneke Ullrich ,Gerhild Becker ,Manuela Schallenburger ,Karin Oechsle ,Friedemann Nauck ,Jacqueline Schwartz ,Ahmet Gülay ,Jens H Weber ,Natalie Berges ,Farina Hodiamont ,Liane Werner ,Christopher Boehlke ,Marius Fischer ,Katherine C Maus ,Ulrich Wedding ,Christoph Ostgathe ,Null Author_Id

doi:10.1186/s12904-021-00898-w

Abstract

BackgroundIn the SARS-CoV-2 pandemic, general and specialist Palliative Care (PC) plays an essential role in health care, contributing to symptom control, psycho-social support, and providing support in complex decision making. Numbers of COVID-19 related deaths have recently increased demanding more palliative care input. Also, the pandemic impacts on palliative care for non-COVID-19 patients. Strategies on the care for seriously ill and dying people in pandemic times are lacking. Therefore, the program ‘Palliative care in Pandemics’ (PallPan) aims to develop and consent a national pandemic plan for the care of seriously ill and dying adults and their informal carers in pandemics including (a) guidance for generalist and specialist palliative care of patients with and without SARS-CoV-2 infections on the micro, meso and macro level, (b) collection and development of information material for an online platform, and (c) identification of variables and research questions on palliative care in pandemics for the national pandemic cohort network (NAPKON).MethodsMixed-methods project including ten work packages conducting (online) surveys and qualitative interviews to explore and describe i) experiences and burden of patients (with/without SARS-CoV-2 infection) and their relatives, ii) experiences, challenges and potential solutions of health care professionals, stakeholders and decision makers during the SARS-CoV-2 pandemic. The work package results inform the development of a consensus-based guidance. In addition, best practice examples and relevant literature will be collected and variables for data collection identified.DiscussionFor a future “pandemic preparedness” national and international recommendations and concepts for the care of severely ill and dying people are necessary considering both generalist and specialist palliative care in the home care and inpatient setting.

Highlights

In the SARS-CoV-2 pandemic, general and specialist Palliative Care (PC) plays an essential role in health care, contributing to symptom control, psycho-social support, and providing support in complex decision making
The SARS-CoV-2 pandemic presents a huge challenge for societies and health care systems around the world
Setting The following settings and stakeholders were chosen on the micro, meso and macro level both for reviewing the experiences of the SARS-CoV-2 pandemic in Germany up to winter 2020/2021 and as recipient for the guidance on palliative care for patients in pandemics

Summary

Introduction

In the SARS-CoV-2 pandemic, general and specialist Palliative Care (PC) plays an essential role in health care, contributing to symptom control, psycho-social support, and providing support in complex decision making. Strategies on the care for seriously ill and dying people in pandemic times are lacking. The program ‘Palliative care in Pandemics’ (PallPan) aims to develop and consent a national pandemic plan for the care of seriously ill and dying adults and their informal carers in pandemics including (a) guidance for generalist and specialist palliative care of patients with and without SARS-CoV-2 infections on the micro, meso and macro level, (b) collection and development of information material for an online platform, and (c) identification of variables and research questions on palliative care in pandemics for the national pandemic cohort network (NAPKON). Protection and rigorous isolation measures and bans on visits may have a severe impact on the situation of seriously ill and dying people and their relatives [1, 2]. Deficits in care of non-COVID-19 patients have been described (“Corona Collateral Damage Syndrome”) [3]

Methods

Discussion

Conclusion