Research association gives recommendations for the care of the seriously ill and the dying in a global health crisis
MHH investigates effects of the Corona pandemic on outpatient palliative care in PallPan
The Palliative Care in Times of Pandemic (PallPan) research network has presented the „National strategy for the care of seriously ill and dying people and their relatives in times of the pandemic“. At the heart of the strategy are specific recommendations for action on how to enable closeness at the end of life in particular in the event of future pandemics. Hannover Medical School (MHH) is also involved in the research project: A team from the Institute of General Medicine and Palliative Medicine led by Professor Dr Stephanie Stiel and Institute Director Professor Dr Nils Schneider has examined aspects of general outpatient palliative care.
16 studies with more than 1,700 people affected by palliative care
The PallPan research network of the National Research Network of University Medicine on Covid-19, Network University Medicine (NUM) consists of palliative medicine facilities of 13 university hospitals and is dedicated to the experiences, burdens and challenges in the care of seriously ill and dying people in the current pandemic. In 16 studies over a period of nine months, more than 1,700 patients, caregivers and responsible persons in the health system and in politics were asked about their experiences and their statements were systematically examined and evaluated.
The MHH team focused on the survey of general practitioners and oncologists in private practice. „In the first phase of the pandemic, the focus was mostly on COVID-19 sufferers in inpatient care,“ says Professor Stiel. „People with other diseases, on the other hand, have been lost from view.“ For oncologists in private practice, there were initially problems with adapting practice procedures to the hygiene regulations caused by the pandemic. Making appointments for chemo and transfusion therapies was also more difficult in the initial phase because patients were still uncertain at first. However, that quickly subsided. „The oncologists interviewed also reported that there were hardly any losses in the quality of treatment,“ emphasises Professor Stiel.
„Care and end-of-life care for the seriously ill has deteriorated“.
However, GPs had to deal with other difficulties besides the reorganisation of their practice procedures. They were able to make fewer visits to patients at home and in care facilities due to the pandemic-related contact restrictions and visiting bans. „From a GP perspective, this has led to a deterioration in the care of seriously ill and dying people,“ Professor Schneider emphasises. This not only has an impact on physical health. The mental state of the sick and their relatives has also suffered. „General restrictions on contact and bans on visits to care facilities have not done people at the end of life and their relatives any good,“ Professor Schneider emphasises. GPs therefore wished to be involved in local crisis teams so that the concerns of people at the end of life and their relatives would be adequately taken into account in the future.
33 recommendations for action
With the help of 120 experts from the various areas of health care, administration and politics, the results of the 16 studies from the 13 university hospitals were developed into a common strategy and coordinated. The core of the strategy are 33 concrete recommendations for action, which are divided into three sections: Supporting patients and their relatives, supporting staff and supporting and maintaining palliative care structures and services.
According to the results of the survey, patients and their relatives want one thing above all for the future: to enable closeness at the end of life even in a pandemic. This requires balanced visiting regulations for institutions such as hospitals and care facilities, but also a legal framework, which politics must create. Case-by-case decisions and clearly defined exemptions have proven to be a workable and helpful strategy and should be used everywhere. Healthcare workers need above all sufficient protection against infections, but also basic palliative care knowledge and psychosocial support in challenging situations, for example in intensive care units or nursing homes. „Even in times of a pandemic, seriously ill and dying people are entitled to good symptom treatment and dignified care in accordance with the patient’s will. This applies to both infected and non-infected people. In the increased stress of a pandemic, those providing care need more support,“ emphasises Professor Dr. Steffen Simon from the University Hospital of Cologne and one of the two coordinators of the PallPan network.
On the part of politics as well as clinics and care facilities, attention must be paid to ensuring that palliative care structures are maintained even and especially in a pandemic situation. „Palliative care units must not be closed in a pandemic; rather, outpatient and inpatient palliative care services should remain operational for the necessary care of seriously ill and dying patients and, if necessary, be adapted or even expanded – for example, for infected patients who can not be cured,“ appeals Professor Dr Claudia Bausewein from LMU Klinikum München, also coordinator of the PallPan network and President of the German Society for Palliative Medicine (DGP).
Information platform and bereavement services
The PallPan network is already planning further projects: the establishment of a web-based information platform, the development of support materials for bereaved relatives and staff in care facilities and hospitals, the integration of PallPan into a „National Pandemic Preparedness“ for the German health care system and the continuous further development of the recommendations for action.
The PallPan research association is funded by the BMBF as part of the Network University Medicine (NUM). The research association includes the palliative medicine facilities of the university hospitals in Aachen, Bonn, Düsseldorf, Erlangen, Freiburg, Göttingen, Hamburg, Hanover, Jena, Cologne, Munich, Rostock and Würzburg. Professor Claudia Bausewein from the LMU Hospital in Munich and Professor Steffen Simon from the University Hospital in Cologne are the overall coordinators.
Link to PDF: https://doi.org/10.5281/zenodo.5012504
The PallPan Consortium invites you to a virtual final conference where the National Strategy will be presented. (firstname.lastname@example.org) The date is 24 June 2021, from 2 pm to 5.30 pm. Participation is free of charge, registration is not necessary. Dial-in link (identification code: 562238): https://lmu-munich.zoom.us/j/95257337713?pwd=TW5Ib1BnYmNVWFBEMUEvTksrTk95QT09
Contact for journalists:
For further information on the MHH contribution to the PallPan study, please contact Professor Dr Nils Schneider at email@example.com, phone (0511) 532-2744 or Professor Dr Stephanie Stiel at firstname.lastname@example.org, phone (0511) 532-4548.
For general information on PallPan, please contact Professor Dr. Claudia Bausewein, LMU Klinikum München, email@example.com or Professor Dr. Steffen Simon, Uniklinik Köln, firstname.lastname@example.org.
National Research Network of University Medicine on Covid-19
Providing optimal care for patients, preventing infections, preserving health care: The Covid-19 pandemic brings with its challenges that require new strategies for action within a short period of time. The National Research Network of University Medicine on Covid-19, in short Network University Medicine (NUM), bundles and strengthens research activities to cope with the current situation. Funded by the Federal Ministry of Education and Research and coordinated by the Charité – Universitätsmedizin Berlin, the research network involves all German university hospitals and other networks in working on solutions for the best possible patient care during the pandemic. 13 comprehensive collaborative projects with leaders at the various university medicine sites have been designed for this purpose. The programme is designed to provide rapid, immediate support. Emphasis is placed on clinic-related research and health care research, the results of which flow directly into health care and crisis management in accordance with the translational approach. The research network and the participating institutions have around 150 million euros available in the first year to implement this task; from 2021, the network is to be funded with a further 80 million euros annually until 2024, or an additional 240 million euros. Joint developments in research and patient care, evidence-based approaches and mutual learning should lead to a common approach to pandemic control and „pandemic preparedness“. Further information: www.netzwerk-universitaetsmedizin.de